tag:blogger.com,1999:blog-83002360063438842072023-11-16T08:10:27.312-05:00Behind a Shoelace & a SmileMJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-8300236006343884207.post-72695119645785398152019-10-26T12:14:00.000-04:002019-10-26T12:14:52.619-04:00Matilda | Poem about a Witch<div class="gmail_default" style="font-family: tahoma, sans-serif; text-align: center;">
<b><u><span style="color: orange; font-size: large;">Matilda</span></u></b></div>
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<span style="color: orange;">By MJ Purk</span></div>
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<span style="color: orange;">From the time she was a wee one Matilda's mum would sing,</span></div>
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<span style="color: orange;">Some days it was lyrical brilliance and others it should have been left for the rubbish bin.</span></div>
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<span style="color: orange;">Songs flowed through her very veins and rose up her throat and out her mouth - like cupcakes in an oven</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhetCVSThVUQsMXXeFj1EQQ1oPqalS90EPTjNxMl9VsQhYuNiv4ZYwJ1HQtlbhpTav5OUscpcC2oddqDCLb_1ZrVFUQfX-VqPBZna99PWlohPJ1bQ8Av14dxh9jkhjlypxm0TpJrQjQ0j_O/s1600/Witch+Coven_Roots+of+Design+Drawtober_Jeanette+Wummel_final.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="color: orange;"><img border="0" data-original-height="1600" data-original-width="1280" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhetCVSThVUQsMXXeFj1EQQ1oPqalS90EPTjNxMl9VsQhYuNiv4ZYwJ1HQtlbhpTav5OUscpcC2oddqDCLb_1ZrVFUQfX-VqPBZna99PWlohPJ1bQ8Av14dxh9jkhjlypxm0TpJrQjQ0j_O/s400/Witch+Coven_Roots+of+Design+Drawtober_Jeanette+Wummel_final.jpg" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: orange;">Jeanette Wummel's </span><a href="https://www.facebook.com/TheRootsofDesign/" target="_blank"><span style="color: #6aa84f;">Roots of Design</span></a><span style="color: orange;"> Drawtober</span><br /><span style="color: orange;">Colored by MJ Purk</span></td></tr>
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<span style="color: orange;">Matilda was so proud to not only be born into a strong female family but also a good witch Springtime coven</span></div>
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<span style="color: orange;">Matilda's mum always claimed that she was named after a famous song about witches<br />But Matilda's Gram was quick to point out that Matilda's mum was infamous for being creative with lyrics </span></div>
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<span style="color: orange;">From "Purple People Eater" being "1 thighed, 2 corns, crying
Purple People Eater" to anything that her mum could turn and make the words fit her needs lyrically</span></div>
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<span style="color: orange;"> From the moment of her birth, Matilda's mum insisted that she had to be named after an old Witchcraft Carole </span></div>
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<span style="color: orange;">Gram was thinking of "I Put a Spell on You" or "Mystic's Dream" or perhaps even "<span style="font-family: Arial, Helvetica, sans-serif; white-space: nowrap;">Sylvan</span>" in honor of their family patriarch, Sylvan Harold</span></div>
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<span style="color: orange;">But Matilda's mum wanted nothing so predictable and went for something unique and memorable.</span></div>
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<span style="color: orange;">Upon her birth, Matilda's mum began to sing loud and strong </span></div>
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<span style="color: orange;">"Watt!, Zing!, Matilda!,
Watt!, Zing!, Matilda!"</span></div>
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<span style="color: orange;">For years Matilda herself sang it the way her mum did. </span></div>
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<span style="color: orange;">Now at the mature age of 7, Matilda decided to read up on her namesake song.</span></div>
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<span style="color: orange;">After hours of searching, Matilda came to the conclusion that some things you carry with you your whole life long.</span></div>
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<span style="color: orange;">Matilda's mum believed that "Waltzing Matilda" was a tribute to a talented witch and altered it to "
Watt!, Zing!, Matilda!".</span></div>
MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com1tag:blogger.com,1999:blog-8300236006343884207.post-68289318196506724292019-09-27T11:41:00.001-04:002019-09-27T11:41:34.322-04:00Happy Sunny Day | Fictional Short Story<div class="gmail_default" style="font-family: tahoma, sans-serif;">
This is Sunny. Okay actually her full name is Surya <span style="color: #222222; font-family: arial, sans-serif;">Eliana Cyrus ... all of which means sun, hence the nickname Sunny. She is a free-spirited girl who has a passion for playing outdoors, catching butterflies during the day and lighting bugs at night. Sunny is not quite old enough for school but she is, as her Nana always says, "smart as a whip" and "one tough <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh2Mvuj5CM3bnqHCf2Muo7nBRwp20mB1Zlj9TBkXemw8NiDJeokwhhileUtadltNz0zwnBJHODHXPSmWrgGCW0NfojS_46Yqp9mLxh77vYilaWMb6JBtqxLJ_lxTRpXk3ZVsF_imsJklrd/s1600/Happy+Sunny+Day_Freebie_Sherry+West_fibal.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1236" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh2Mvuj5CM3bnqHCf2Muo7nBRwp20mB1Zlj9TBkXemw8NiDJeokwhhileUtadltNz0zwnBJHODHXPSmWrgGCW0NfojS_46Yqp9mLxh77vYilaWMb6JBtqxLJ_lxTRpXk3ZVsF_imsJklrd/s400/Happy+Sunny+Day_Freebie_Sherry+West_fibal.jpg" width="308" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;"><span style="font-family: tahoma, sans-serif; text-align: start;">Surya </span><span style="color: #222222; text-align: start;">Eliana Cyrus<br />aka Sunny</span></span></td></tr>
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cookie". Sunny isn't quite sure how you know if a whip is smart since she has yet to find one that could answer any questions. As for the tough cookie thing, she's not really certain about that because she much prefers warm, soft cookies over tough old cookies. Her Nana says that they are compliments but Sunny still isn't completely sure. She loves learning new things especially when she and Nana take one of Great Grandma Gwendolyn's really old quilts into the backyard and spread it out wide, so there is plenty of room for Sunny and seven of her favorite toys, under the old willow tree and a BIG pile of books. Sometimes they will just read and read the entire day and Sunny will wake up as her PePaw is carrying her into the house just in time for supper and then a bath before getting in her favorite nighty pajamas that </span><span style="color: #222222; font-family: Arial, Helvetica, sans-serif;">Great Grandma Gwendolyn made special just for her. Her nighty is extra special because it is made from a bunch of the jammies Sunny wore as a baby. Her Nana will tuck her into bed and Sunny will choose a square of fabric and Nana will tell her a story about when Sunny was a baby and what she did in those jammies. Most of the stories are happy or even silly and make Sunny laugh and laugh. Other times the stories make Sunny sad because her Mommy is part of the story. Sunny doesn't have many memories of her Mommy because one afternoon Mommy told Nana that she "needed to go for a drive" ... something Sunny has never understood but Nana just says it's one of those things grown-ups say. That was 4 years, 2 months, 3 weeks, and 5 days ago and Sunny figures that her Mommy must still be driving and someday she will turn around and come back to Sunny. In the meantime Sunny plans to enjoy storytime with Nana, catching butterflies, and having tea parties with her favorite stuffed animals.</span></div>
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<a name='more'></a>Image Information </div>
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<span style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">Happy Sunny Day</span><br style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">Freebie from <a href="https://www.facebook.com/Sherry-West-Art-Free-Adult-Coloring-Resources-239780643110609/" target="_blank">Sherry West Coloring</a></span><br style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px;" /><span style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px;">Artist </span><a href="https://www.facebook.com/SherryWestArt/" target="_blank">Sherry West</a><span style="background-color: white; color: #1c1e21; font-family: Helvetica, Arial, sans-serif; font-size: 14px;"></span><span class="text_exposed_show" style="background-color: white; color: #1c1e21; display: inline; font-family: Helvetica, Arial, sans-serif; font-size: 14px;"><br />Colorist MJ<br />Colored Using <a data-hovercard-prefer-more-content-show="1" data-hovercard="/ajax/hovercard/page.php?id=363288993696707&extragetparams=%7B%22__tn__%22%3A%22%2CdK%2AF-R%22%2C%22eid%22%3A%22ARClLWMet6CciG-V-twjki6Z2-E7k-KOH1ak-Ub5DCCH4alrsK6BHWt1Yx-Fm5rCo4HjjwylbY6RQI0o%22%2C%22directed_target_id%22%3A1037290433072176%2C%22groups_location%22%3Anull%2C%22fref%22%3A%22gs%22%2C%22dti%22%3A1037290433072176%2C%22hc_location%22%3A%22group_dialog%22%7D" fg_scanned="1" href="https://www.facebook.com/PicMonkey/?ref=gs&__tn__=%2CdK%2AF-R&eid=ARClLWMet6CciG-V-twjki6Z2-E7k-KOH1ak-Ub5DCCH4alrsK6BHWt1Yx-Fm5rCo4HjjwylbY6RQI0o&fref=gs&dti=1037290433072176&hc_location=group_dialog" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;">PicMonkey</a>'s Overlay & Basics features</span></div>
MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-89312066400532657642019-07-09T12:16:00.002-04:002019-07-09T12:16:29.541-04:00Attitude of Gratitude - The Cure<div style="background-color: white; color: #222222; font-family: Arial, Helvetica, sans-serif; font-size: small;">
<br class="m_-4334031855906187322gmail-Apple-interchange-newline" /><b>Written as a Facebook status on May 25, 2019.</b></div>
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There has been some incredible news in the SMA Community that came out this week. I think, my Aunt Maureen has said it best, "Science rocks!!"<br />Yesterday, after hearing about the "cure" for 31 years, it is finally coming true. Of course, it is 30 years too late for Emma and for me too. I have been blessed to be able to witness the effects of gene therapy first hand and I must say that it is like seeing a miracle every single time, Unfortunately, the old adage, miracles happen every day, came true too late for so many families. In most situations, I aim to be the optimist and for the most part, that is the case with gene therapy and its approval. However, my heart hurts, aches, for so many families, the parents, and siblings who never got to witness their children grow up. My Emma, my sister, passed away 27 years ago this year, for others, it has been even longer, and for still others, it has (only) been a week. In this case, despite what I grew up knowing, life is not fair (sorry to my grandpas). I don't say that lightly as fairness is not something I have ever chosen to focus upon, but in this case, I will make an exception. It is not fair, that Logan will never dance at his wedding; it is not fair that Andy will never protect his little sister from a heavy down thunderstorm; it is not fair that Jerika will never get to hold her firstborn child; and it is not fair that Emily will never have a ballet recital. there are so many that I could go on for pages, but please know that I think of them always. I don't want to be the downer on this incredible news but I promised, long ago, to never forget, that I don't break my promises. I guess my message is; be grateful for what you have, to those who came before you and to those who didn't make it. We are the survivors, we are the lucky ones. We have battled every day to survive and we made it. We aren't sure how much it will help us, yet, but we are here, we made it without a magic "pill". Don't tell us that we don't understand, we have seen everything and have witnessed everything. Just be grateful and have an attitude of gratitude! </blockquote>
MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-40234287274957699842018-09-21T17:59:00.000-04:002018-09-21T17:59:04.956-04:00Starting Over StorytellerAs a child I lived for the days that Brenda would pull out the journal prompts book and I got to just write about whatever the prompt suggested. I have tons and tons of stories that I wrote using the prompts and others that just popped into my 8-year-old mind. Anyway, I am trying to get back into writing again and since I love to color now I was inspired by one of the pages that I recently colored. The story is just in its very beginning stages but I didn't want to lose it so I figured that this would be a safe place to keep it until I am ready to write more or find a <strike>better</strike> different venue for my fictional writing since this is generally what I use for my real life experiences and thoughts on things going on around me. If you don't want to read this fictitious children's story, don't worry, I won't know if you stop here, or decide that you want to read it later, or hope that I will hurry up and write more (let me know) ... Hopefully, you will enjoy this (or not, if it's not your thing).<br />
PS I am thinking about how to redesign the look of the blog since the way I originally formatted is no longer a workable way to use it. It will be a good project for the upcoming winter season that will keep me indoors because I have a malfunctioning internal thermostat and I like to avoid the plethora of germs that abound during what the medical profession likes to call "cold and flu season"... but, as usual, I digress ... On to the beginning of a story ...<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4qkWH8JDkr_69PjCXOfdxqS-gv2hyN2faXY4AneKqHsaH-eS8_8cYTDCUtrNkG0-gLXK3hwaqzzuuYxdBkbRaP_PtfT-PCRyy7p2rDWGtHqJs6j3bWENgDiCQ-rQXZ7CiLGHt_bTmYWKv/s1600/Turtle+Travel+Postcard_wm.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Fairie Village Book 1 by Lynette Hansen-McNamara, Colored by MJ Purk" border="0" data-original-height="1143" data-original-width="1600" height="285" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4qkWH8JDkr_69PjCXOfdxqS-gv2hyN2faXY4AneKqHsaH-eS8_8cYTDCUtrNkG0-gLXK3hwaqzzuuYxdBkbRaP_PtfT-PCRyy7p2rDWGtHqJs6j3bWENgDiCQ-rQXZ7CiLGHt_bTmYWKv/s400/Turtle+Travel+Postcard_wm.jpg" title=" Tulloch the Traveling Turtle " width="400" /></a></div>
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<span data-offset-key="c78fv-0-0"><span data-text="true">Tully, short for Tulloch, was a traveling turtle on the coast of the fairy village of Sandalwood. Tully like his father before him and his father before him was a traveling turtle with the Turtles of Tacoma Travels or TTT. From the time his shell was big enough to carry a single fairy cottage Tully began to travel up and down the coast of Fairifield, one of the largest territories in what most humans referred to as an imaginary place of Once Upon A Timeland, alongside his father, Tullerver, in the beginning. The first cottage built on Tully's shell was small and red and only big enough to hold one normal size fairy or possibly two-pint sized fairies but those are very rare. As Tully grew so did his shell and the number of homes on his shell until he reached the maximum allowed, four, and two ladybugs. Tully had worked closely with the tiny home builders to ensure that he had a wide variety of vacation options for fairies looking to travel with him. His favorite was still the little red house that had been moved to his head. It was rented the most often by three (and a half) generations of female fairies. Because the home was so small they rarely ever stayed there together. What they did that Tully absolutely loved was to stay there one after the other and leave maps and scavenger hunt clues for the next one. They communicated that way for years with each other, sometimes asking Tully to take the next one on special excursions that no one else knew about.</span></span></div>
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<span data-offset-key="c78fv-0-0"><span data-text="true"> To be continued ...</span></span></div>
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MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com1tag:blogger.com,1999:blog-8300236006343884207.post-32197608515007204902017-12-13T12:02:00.002-05:002017-12-13T12:02:54.141-05:00Remembering JordanAt this very moment, two of my friends are preparing to lay their
forever 4-year-old daughter to rest. This should never be the case. 2017
has been a particularly difficult year for many of my closest friends.
Too many of them have had to say goodbye to their children in spite of
the fact that for the first time in history there is a viable treatment
for SMA. It is not right and it will never be okay for a parent to have
to bury a child regardless of the cause. Today my heart<span class="text_exposed_show"> is heavy for Jerry and Brieen as they say their final goodbye, here on earth, to their sweet daughter
Jordan. Jordan will be remembered as one tough cookie, brimming over
with sass, a smile that could melt the hardest of hearts, and eyes that
shone brighter than the brightest star in the sky. Her time was short
but her mission was clear; change what is known about SMA. She brought
hope to this world and even though she may be gone her mission of hope
will live on in the hearts of hundreds, if not thousands, of people who
knew of this little spitfire. Jordan, you have touched my heart and will
live on as I promise that you will never be forgotten...not by me, not
by Brenda,
not by the nurses, RTs, PCAs, OTs, PTs, doctors, and on and on at
Nationwide Children's, and really anyone who was ever blessed enough to
really know you and your incredible parents... You will live on in the
hearts and minds of so many people Jordan. Keep sending us <span class="_5mfr _47e3"><img alt="" class="img" height="16" role="presentation" src="https://www.facebook.com/images/emoji.php/v9/fb5/1.5/16/2744.png" width="16" /><span class="_7oe">❄️</span></span>snowflakes<span class="_5mfr _47e3"><img alt="" class="img" height="16" role="presentation" src="https://www.facebook.com/images/emoji.php/v9/fb5/1.5/16/2744.png" width="16" /><span class="_7oe">❄️</span></span>, okay <span class="_5mfr _47e3"><img alt="" class="img" height="16" role="presentation" src="https://www.facebook.com/images/emoji.php/v9/f41/1.5/16/1f451.png" width="16" /><span class="_7oe">👑</span></span>sweet princess<span class="_5mfr _47e3"><img alt="" class="img" height="16" role="presentation" src="https://www.facebook.com/images/emoji.php/v9/f41/1.5/16/1f451.png" width="16" /><span class="_7oe">👑</span></span>?</span><br />
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MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-27953335892540290802017-08-31T15:01:00.000-04:002017-08-31T15:01:02.385-04:00Never Lose Courage Today is the last day of August and for people who are not directly
impacted by Spinal Muscular Atrophy (SMA), it is the end of SMA
Awareness Month. Today is the last day of newsfeeds filled with facts,
photos, fundraisers, and post with pleas for "outsiders" to take notice
of the world of we live in 365 days a year, 7 days a week, 24 hours a
day. SMA Families live with the knowledge that every day is an
important day. There are no guarantees in life and even fewer when you <span class="text_exposed_show">have
a life impacted, daily, by the restrictions of a label of a "terminal
illness". It's important to recognize that life, no matter who you are
or what you do, is terminal. We are all destined to live a life that
will, ultimately, end in death. It is a fact and it may seem incredibly
callous to be so blunt on such a sensitive subject. That is not,
however, what we want people to focus on. We must remember that the
important thing to focus on is the time between the day we are born to
the moment we draw our last breath. This is never truer than when you,
possibly, have an accelerated time table of the "in between" which is
what many individuals with diagnosed with SMA are told they face.
Whether or not that is true is, often times, the subject of heated
debates that never truly cease with a definitive agreement on what "the
truth" is. This is largely due to the fact that it is all up to the
individual. It comes down to whether one chooses to focus on the
quantity of time or the quality of time. That choice, of what to focus
on, quality or quantity, can and, often times, does change depending on
the situation, the day, the hour or the moment. <br /> </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7mt80w_scwEyAm26ImnCKYC0GnEV72Od8oVdf_wqe6q1QmhBIkStyjjYfwZ-pJb4ldRcMjntyUlcB3-EaDme7kpoUVsB94yOjgbYWwc61EBF2lBF3wzmAwg7MgbaANY1pQaH9Sq-1glK5/s1600/Never+Lose+Courage_pink.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7mt80w_scwEyAm26ImnCKYC0GnEV72Od8oVdf_wqe6q1QmhBIkStyjjYfwZ-pJb4ldRcMjntyUlcB3-EaDme7kpoUVsB94yOjgbYWwc61EBF2lBF3wzmAwg7MgbaANY1pQaH9Sq-1glK5/s320/Never+Lose+Courage_pink.jpg" width="320" /></a></div>
So as the month of
August draws to a close, we ask that as you go about your day and the
days ahead you make a conscious choice to never lose courage in the face
of the fact that someday it will come to end. Make the most of your
time in between. It will take an insane amount of courage to take the
day as it comes. It will take courage to focus on whatever you choose,
whether it be quantity or quality, and do so unwaveringly. Life takes a
level courage that is unmatched. Having the courage to live in the life
you have been handled is the most courageous thing that anyone will ever
have to do. Courage is a choice and it is a choice that must be made
repeatedly throughout a lifetime and, sometimes, one that must be made
repeatedly in the span of a day. It is a solitary choice that
individuals must make on their own. The choice to have courage or not is
one that will impact others. It is not an easy choice but rather the
opposite, maybe the most difficult. Whatever you choose in other aspects
of your life, the choice of courage will undoubtedly make all the
difference. Choose to Have Courage and Never Ever Lose It!MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-37712037937098825712017-05-29T17:36:00.000-04:002017-05-29T19:04:26.037-04:00Eleven Years <br />
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
11
years is a long time to do anything. 11 years has a way of making
something ordinary turn into a tradition. 11 years changes a person, a
place, and all of the things that make certain things important. In 11
years you get comfortable with how it feels to do the same thing on a
certain day with certain people. And then out of nowhere that thing that
you have done for longer than just about anything you can remember is
snatched away. It wasn't like you didn't see it coming but you kept your
blinders on and refused to look behind because if you did you were
certain that mere sight of the change would shatter <br />
<div style="text-align: left;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr3e_KllwUZJ_3bORvVXdwWEyN-Y1JVGhp4-zSlSrsU6xXVQ0hunB6ozLziGv6iDObZdBoT4LJ98Y-_Zwnys-MBD0-yP0WJZk-02t9_RxdcCZxWNwTKZ3G384djOhJtUUHE5UA942KTNRP/s1600/empty+heart+.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr3e_KllwUZJ_3bORvVXdwWEyN-Y1JVGhp4-zSlSrsU6xXVQ0hunB6ozLziGv6iDObZdBoT4LJ98Y-_Zwnys-MBD0-yP0WJZk-02t9_RxdcCZxWNwTKZ3G384djOhJtUUHE5UA942KTNRP/s320/empty+heart+.jpg" width="320" /></a></div>
your already fragile
heart. Now you know you can't go back, the past is gone and the future
is much too far away for you to clearly make out what it will be. You
can only see what is happening right now and even though your heart is
aching deep down in your chest you force yourself to face forward and to
look only at what is beside you. Beside you, you find only one thing;
your box of memories of the last 11 years. In order for you to move
forward, for your shattered heart to heal, you must, at least for now,
pack away the box. It will be easier to move forward if you don't cling
to the box of memories. The box is heavy and will cut into your tender
flesh, making the change leave visible scars for the world to see. So
you put the box away on a tall shelf and pushed to the back where for
now it cannot hurt you. You turn away from the shelf and wipe away the
tears you didn't even know you were crying. You close your eyes,
allowing yourself only one moment, and take a deep breath. You open your
eyes and allow a smile to grace your face as think of all of the
wonderful things that are awaiting you in the still too blurry future.
You may have a broken heart but you know that it will heal, given time.
You know this because it has happened before and it will happen again,
whether or not you're prepared matters little. Your face has dried from
your earlier tears and your smile has become more real than it was
before. You realize that the world around you is continuing and outside
your window, the sun is shining. Yes, 11 years is a very long time and
it is not easy to embrace the change. But moving on and changing is
necessary so you go outside and feel the warmth on your skin and
suddenly you realize it is all going to be okay.</div>
MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-16444287496329348532016-07-16T19:10:00.000-04:002016-07-16T19:25:54.817-04:00Choices<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
Over
the years writing has almost always been my go-to stress relief method
and a great way for me to express my opinion or feelings about a wide
range of topics. I have recently taken a huge step back from the SMA
Community because I feel that I can better serve the community by
keeping my opinions to myself. That being said there is something that I
feel a need to write. This may never go further than my fingertip or it
may go out with a bang of a blog post. I won't know until I am finished
and even then I may hold on to it for a few weeks or months and decide
to release it when the level of tension isn't as high. Whatever this
ends up being it is most important for me to get this out of my system
before it festers and becomes something that I cannot control. </div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
In
recent months there has been what seems to be an ongoing argument and
to call it a discussion doesn't give it the level of anger, disrespect
and quite honestly disregard for others feelings that has come to a
head. It comes in different packages and finery, from the headline news
to Hollywood scripts to quiet corners of family homes but ultimately it
boils down to a certain topic that has been heartbreaking for
generations; the right to die or live. It can be looked at through a
thousand different lenses and a kaleidoscope of colors from rosy to the
bleakest of blacks. Most recently it has been called into question by
<a href="http://www.cnn.com/2016/06/14/health/julianna-snow-heaven-over-hospital-death/" target="_blank">the story of Julianna Snow</a> and it's counterpoint in <a href="https://www.facebook.com/dearjulianna2015/?fref=ts" target="_blank">the "Dear Julianna" campaign</a>, <a href="http://www.ew.com/article/2016/06/05/me-before-you-ending-director-responds" target="_blank">the controversy surrounding</a> the best selling <a href="https://www.goodreads.com/book/show/15507958-me-before-you" target="_blank">novel, by Jojo Moyes</a>,<a href="http://www.huffingtonpost.co.uk/laurenwest1/me-before-you_b_10143130.html" target="_blank"> turned movie "Me Before You"</a>, to most recently the headline
<a href="http://www.postcrescent.com/story/news/2016/07/14/appleton-teen-makes-heartbreaking-decision-die/86510526/" target="_blank">"Appleton teen makes heartbreaking decision to die"</a>.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW2iVL6aiIoSRGApegJGJzK3ryHiRcQLZ6aiD3p7jU4OhXwFSzaDKoWWrciIs6ChL4CojHSoRHtyiS3JJH1AP-v-ffr2GU2Hv0cbqEDIrUEq8hJTTJ49FfIOf4iBIJPjMnFUYDwpnLCVCZ/s1600/Fly+be+Free_Laura+Medeiros_final3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiW2iVL6aiIoSRGApegJGJzK3ryHiRcQLZ6aiD3p7jU4OhXwFSzaDKoWWrciIs6ChL4CojHSoRHtyiS3JJH1AP-v-ffr2GU2Hv0cbqEDIrUEq8hJTTJ49FfIOf4iBIJPjMnFUYDwpnLCVCZ/s320/Fly+be+Free_Laura+Medeiros_final3.jpg" width="242" /></a> As I sit in my
new apartment listening to <a href="https://youtu.be/uIbXvaE39wM" target="_blank">"Hold On" by Wilson Phillips</a>, I have come to
the conclusion that I can remain silent no more. I have stood on the
sidelines of all of these controversial topics, silence at my side, I
have read and reread the variety of opinions from people who have
inserted themselves and their opinions into one or all of the
aforementioned topics. People who feel that they must speak out for
those who can't or those who they feel have an incorrect perception of
the tales flooding Facebook newsfeeds. This is in my own opinion one of
the biggest issues; assuming that you know how someone is feeling or
should be reacting to a certain situation. Sure, you may have the same
diagnosis, you may have experienced something similar at the same age in
the town, or you have professional experience with a similar set of
circumstances and made a completely different choice for yourself or
your child or chihuahua so you feel that need to share that. Power to
you, your parents, your cousin three times removed and your 2lb
chihuahua who lapping up cappuccinos from a ceramic teacup while you
type out your scathing rebukes of people who did it "wrong" in your
opinion. Note: I have nothing against chihuahuas, they were the only dog
that I could think of that started with a 'C'. That really is your
prerogative to put the world on blast in whatever form suits you best.
Difference of opinion is what makes the world go round but what makes it
truly impactful is when you take a few extra moments to understand that
your experience is just your experience and it does not necessarily
reflect the experiences of any other person on the planet. <br />
In my
younger years I mistakenly thought that my experiences were universal
and over the years as I have grown as a person I have come to realize
that while my life may include aspects that others can relate to, no one
else has lived my life and on the flip side I have not lived anyone
elses. When it comes to the three examples I listed above I have not
lived with <a href="http://www.ninds.nih.gov/disorders/charcot_marie_tooth/detail_charcot_marie_tooth.htm" target="_blank">Charcot-Marie-Tooth </a>(CMT) the disorder that Julianna had, I
have never been a physically active (eh-hem, not to mention, fictional)
male who ends up paralyzed like Will Traynor in "Me Before You", and
while I do have the most in common with the "Appleton, WI girl", I am
not in her body. Let's back track a bit and make a case for each
individual story and how similar and dissimilar my own life experiences
are. Let me begin by saying that when it comes to Julianna Snow's story
that has been raked over the coals so many times that I have sometimes
felt physically ill from the opinions I have read. In part I must say
that I followed the journey of Julianna's family before it became a
controversial story in the eyes of all of America from coast to coast.
Her family shared their journey to Julianna's choice on a blog and while
I was not a faithful follower, I did read what I could. When their
story became the stuff of every family's nightmare by ending up as
fodder for hundreds of adults with disabilities, I had already been
following for several months. At the time I did not feel the need to add
my voice to the public outcry because I was one of the few who didn't
see Julianna's choice as anything more than what I watched my own sister
decide. My sister, <a href="http://our-sma-angels.com/emmabear/" target="_blank">Emma</a>, had <a href="http://thegsf.org/this_is_sma" target="_blank">Spinal Muscular Atrophy (SMA)</a> type 1 and
when I read <a href="https://juliannayuri.com/2015/07/15/dont-worry-god-will-take-care-of-me/">THIS </a>conversation
that Michelle, Julianna's mom, shared with the world it was like being
transported back to March of 1992 when Emma and I had a eerily similar
conversation. That conversation with my sister made a huge impact on my
life even though I was only 4 at the time. I would never claim to know
what it is like to lose a child or to use palliative care to ensure that
your child is comfortable but having that experience with my sister has
made me far more empathetic to individuals and families who have chosen
that care path. I did not then and would not now join the "Dear
Julianna" campaign because while I am not now on a palliative care path I
can understand how someone, yes, even a 5 year old, might very well
choose to never go to the hospital again and to choose to be at home
when the time to fly comes. In truth, who would choose to go out in the
hospital attached to more machines and invasive mechanisms than ever or
at home surrounded by the people and things that you are most familiar
and comfortable with (and this can totally include machines, if so
chosen)? This, quite seamlessly, brings me to the backlash surrounding
the movie "Me Before You". I must first say that I have not yet seen the
film so my analysis is based solely on the novel of the same title. I
began reading "Me Before You" written by Jojo Moyes a few weeks after
watching <a href="https://youtu.be/Eh993__rOxA">THIS</a> trailer that
had been posted by a friend on Facebook. There are, in my opinion, not
enough books let alone movies that explore the reality of someone with a
disability falling in love and that was my impression of what the book
would be about. Once I purchased the book on Kindle I did read the
description on GoodReads and braced myself for a tear jerker upon
reading some of the reviews that alluded to the right to die theme of
the novel. As the release date of the movie grew closer I began to see
more and more people post scathing reviews of the movie they hadn't seen
based on a book they hadn't read. I'll leave my feelings about that
particular aspect at the door. I did not agree or disagree with the
multitude of opinions because I knew something that everyone else seemed
to have totally overlooked. "Me Before You" is fiction, aka pretend,
aka <span id="freeText17859956931346317989">Will Traynor did
not then and does not now exist. Sure, the reason that it is a best
seller and was turned into a movie is because, like thousands of other
works of fiction, it is believable and could easily be a biography. But,
and this is huge, it is really hard for me to be up in arms against a
work of fiction. That part put aside, I cried my eyes out at the end of
the book. I have always been a bit of a weeble when it comes to any part
of the right to die movement. I feel that life is so precious and far
too often people in the medical profession don't provide individuals and
families the option to choose life. That is an issue for me beyond this
book and the stories at the forefront of the right to die movement. If
all of the options are presented equally to the individual or family in
each case and they still decide to pursue any of the options then I
cannot personally disagree with any choice. Again this makes it an easy
transition to the </span>"Appleton teen makes heartbreaking decision to
die" headline that is now at the forefront of the ongoing argument of
people who fall on opposite sides of the aisle. This is by far the most
difficult situation for me to share my feelings about. The "Appleton
teen" is not just another face in the crowd to me. In addition to the
fact that I have the same diagnosis I have also personally known this
now teenager since she was a little over a year old. She has a name, a
family, and numerous friends who all love her immensely and I am blessed
to be a small part of that circle. Knowing her means that I know that
her decision is not a flippant one made because she is having a bad week
or because she is suicidal due to depression. Knowing her means that I
have watched her undergo surgery after surgery in an effort to relieve
the unending pain she has been experiencing for more years than any
person should. Knowing her means that as I read the backlash from people
who do not it breaks my heart with each word of "I would NEVER allow
this" or "I would NEVER choose this" or "If it were me/my child". First
take a minute to think about and reread what you just typed, take the
focus off your own situation for a minute and realize one extremely
important thing...This. Has. NOTHING. To. Do. With. Y-O-U! This is not
your story and you should be thankful that it isn't so take one giant
step back and realize that. You, like me, may have the same diagnosis as
her but it is not your decision. </div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
I
can't write anymore today without this going down a very dark road that
I can't come back from. What I want to end with is a line from "Me
Before You", slightly altered to apply to all situations, “I want you to
live if you want to live. If you don't, then by forcing you to carry
on..... we become just another shitty bunch of
people taking away choices.”
―
Jojo Moyes,
<span id="quote_book_link_15507958">
Me Before You
</span></div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
<br />
<section class="" id="module-position-PMSOgosjyOs"><br /></section></div>
MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com3tag:blogger.com,1999:blog-8300236006343884207.post-5837618323410004042014-10-08T14:23:00.000-04:002014-10-09T11:20:46.910-04:00The Bridge <div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW3nKwINviwLvZSV9-2guFe_BVX5IBWiZ5ESyXIhSZL5TTEgz3WsfrTOfP_IAjbTc1G8tnxbX_qJnz93IQsxYR8HIK65nZGZE-NLyQuNuQUUOkY1YjYGAax33K0bvdYerMZQ0RUYbf-u3H/s1600/a91667e9db7cec48ab94b6619920cd36.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW3nKwINviwLvZSV9-2guFe_BVX5IBWiZ5ESyXIhSZL5TTEgz3WsfrTOfP_IAjbTc1G8tnxbX_qJnz93IQsxYR8HIK65nZGZE-NLyQuNuQUUOkY1YjYGAax33K0bvdYerMZQ0RUYbf-u3H/s1600/a91667e9db7cec48ab94b6619920cd36.jpg" height="320" width="151" /></a></div>
If you know me at all, you know that I draw inspiration from everything. I read a lot, listen to different types of music (contrary to popular belief it is not just country), I love dialogue from movies and television, I have more than <a href="http://www.pinterest.com/b4smamj/quotes/" target="_blank">2 thousand quotes pinned on Pinterest</a>; anything can be inspiration for me to create. Oftentimes I get an idea that won't let me be until I do something with it and this latest video is a good example of that.</div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
I heard the song <a href="http://youtu.be/nthAYyQk9ZY" target="_blank">"Help You Stand" by Anthem Lights </a> a few weeks ago and instantly knew that I needed to do a video of SMA kiddos using the song. It was a quick turnaround time to making the video although it has been sitting in Youtube purgatory for a few weeks now waiting for the perfect time to be released into the world. Most of the videos I make as part of <a href="https://www.facebook.com/b4sma.productions?ref=br_tf" target="_blank">B4SMA Productions</a> have simple descriptions. This video does too; dedicated to newly diagnosed families. Know that you are never alone and that there is always someone who will "Help You Stand". Simple right? Except that there is really more than that to this video and while I usually keep this kind of reasoning to myself, this time my brain won't let me. </div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
I've been an active member of the SMA community since I was twelve. That is a lot years, a lot friendships made, and a lot of lives lost. Over the years I have changed my position on a lot of the "controversial" topics of SMA care. I have gained perspective and understanding that the twelve year old version of myself could not begin to comprehend. Being a part of the community for so long has been a blessing and a curse. You would think it would get easier because the questions and choices haven't changed much in the fourteen years. Parents still question their decisions, still think that they are alone in the fight, ask me what I would do. I pretty much still have the same answers to the questions but I think over the years I have been able to find a way to be supportive of every choice because I am not a parent. Whatever decision someone else makes is okay because I know that they are the only ones who have to live with that choice (thank you Shelle for reminding me of that regularly because I tend to forget). That fact doesn't make deciding what is "right or wrong" for the individual and family any easier. I have sincerely thought about this a lot in the last few weeks because I have been entrusted as a good person to talk to for a bunch of newly diagnosed families. This is a difficult position to be in because I know that every situation is different and as much as I may want to I can't make the process of navigating SMA any easier. I have experience with a lot of aspects of SMA and if I don't I usually know someone who does but no one can make decisions for another family so the best I can do is say "this is what worked for me" and leave it at that. Lately I have had this analogy floating around in my head and I feel like I need to get it down in writing so bear with me here as it makes sense in my head but no guarantees on paper.</div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
When you receive the diagnosis of SMA, it is kind of like coming to a bridge that spans a huge canyon. You can't even see more than a few of the slats on the bridge because it is so foggy and dark. From what you can see the bridge doesn't look very sturdy or safe and it seems deserted. You have three choices for getting across and none come with a map or GPS. Your first choice is to take a few very tentative steps forward. You look forward and the path is dark and scary so you decide to sit down and hope that the sun will burn through some of the fog. You look down and it is all darkness. You're pretty sure thousands have gone before you, never to be heard from again, and rather than risk disappearing into the void, you pitch a tent and curse the fact you didn't pick the Disney World vacation instead of this "choose your own adventure" kind of thing. You know giving up is a perfectly acceptable option because you're only going to give yourself a few days to digest what is going on and then you will continue. You're afraid to look up when you do start walking again but you sense that you are not alone. There are others taking the bridge the same way you are and you're so thankful that you're not alone. You can do this, with the others. You have two other ways to get across this bridge too. The second one is even scarier because after you have taken a few steps you feel someone behind you. They weren't there a few minutes ago and now they are pushing you across. "Wait!" you shout because the slat in front of you is broken and you're pretty sure that you are going fall through but they keep pushing and somehow neither of you fall. You know that people behind you have crossed the bridge before and some of the ones in front of you are pulling because they know it's better if you run across the bridge. They are experts and some of them have done this journey for more years than you have been alive; surely they will get you across safely. You continually look behind you unsure if you would have been able to cross that last part if it weren't for the people tugging and shoving you across. You are getting across anyway but unlike the first way of crossing you have little time to understand or enjoy the scenery because of the sense of urgency. You get across but at the end you realize that you don't really know how you got across and there is another bridge up ahead. You realize that you got across with help and this second bridge doesn't have guides so you are going to have to figure out the way across all over again and you have to do it by yourself. The guides from the previous trek are in the background and you know if you scream loud enough someone will come but you don't know how long help will take to come. You begin the journey across the second bridge and remember to pay attention on how to get across with minimal assistance because you have no other options. You also remember to enjoy the scenery because you will never cross the exact same bridge again. The third and final option is just as scary as the other two. Again the bridge seems deserted and unstable. You begin walking and, looking over the edge, get terrified. It's so dark and you can't imagine how anyone got across. You walk slowly and stop sometimes looking behind you to see if you are still alone. Maybe you should turn around and go back? This doesn't feel right. Then you feel something brush your hand. Turning you see a smiling face. They are holding out a hand and offer to walk with you. You're thinking that it isn't always a good idea to talk to strangers but you're scared and the person says that they have walked this way once before, it's easier with a friend. So you walk together. Sometimes you feel the need to sit down and rest. Sometimes your friend sits with you and points out the beauty surrounding you, noticing things you would have missed walking by yourself because you kept looking down. Other times when you sit, your friend keeps walking and you occasionally lose sight of them for awhile. There are parts of the bridge that you have to walk alone and it is scary because you think you're never going to find your way out. But somehow you find the way and when you trip, your friend appears in front of you, offering a hand or an encouraging word. You make it across in your own time and own way. <br />
Yeah it's convoluted but it's how I feel. When I was younger I was solidly in the second option, pushing people across the bridge because it was the only way I knew to get there. Now I am hoping that I am more of a number three. I am honored to walk with others and point out the beauty but I also have to walk away sometimes and let you stand up by yourself. I have my own bridges to cross so I can't be your everything because I have to let you find the right path for you. Maybe our paths will cross again and maybe not but please know that I am reaching out a hand to Help You Stand whenever you need it.<br />
So if that still doesn't make any sense try reading the lyrics below and definitely watch the video.<br />
<br />
Help You Stand | SMA Awareness <br />
<br />
<div style="text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/3Cr0c9CUURM?feature=player_embedded' frameborder='0'></iframe></div>
<br />
Lyrics to <br />
<strong>"Help You Stand"</strong>by Anthem Lights <br />
<div style="margin-left: 10px; margin-right: 10px;">
<!-- start of lyrics -->Picked up the phone again<br />
Put it right back down<br />
That was such a lame attempt<br />
To try to help you out<br />
If I said to myself I'm not scared I'd be lying <br />
Don't know if I know what to say <br />
But I'm trying <br />
So I picking up the phone again<br />
<br />
I hear you fell down<br />
I'm here to let you know<br />
Not giving up<br />
Not gunna let you go<br />
I'm not judging<br />
I'm just loving<br />
Not pointing my finger <br />
But I'm reaching out my hand <br />
I just want to help you stand <br />
Oh oh oh<br />
Just want to help you stand <br />
Oh oh oh oh <br />
<br />
The tone that's in your voice<br />
I can recognize <br />
The shaking from your choice <br />
I can empathize <br />
I'd said I had never been there I'd be lying <br />
Jesus picked me up when I was crying<br />
Broken down on the ground <br />
That's why I'm calling you now <br />
<br />
I hear you fell down<br />
I'm here to let you know<br />
Not giving up<br />
Not gunna let you go<br />
I'm not judging<br />
I'm just loving<br />
Not pointing my finger <br />
But I'm reaching out my hand <br />
I just want to help you stand <br />
Oh oh oh oh<br />
Just want to help you stand <br />
Oh oh oh oh <br />
<br />
He'll meet you where you are<br />
He loves you where you are<br />
He's not pointing a finger <br />
He's just reaching out his hand <br />
Oh oh oh oh <br />
<br />
He'll meet you where you are <br />
He loves you where you are<br />
He's not pointing a finger <br />
He's just reaching out his hand<br />
He just wants to help you stand<br />
<br />
I hear you fell down<br />
I'm here to let you know<br />
Not giving up<br />
Not gunna let you go<br />
I'm not judging<br />
I'm just loving<br />
Not pointing my finger<br />
<br />
I hear you fell down<br />
I'm here to let you know<br />
Not giving up<br />
Not gunna let you go<br />
I'm not judging<br />
I'm just loving<br />
Not pointing my finger</div>
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</div>
<div style="margin-left: 10px; margin-right: 10px;">
I hear you fell down<br />
I'm here to let you know<br />
Not giving up<br />
Not gunna let you go<br />
I'm not judging<br />
I'm just loving<br />
Not pointing my finger</div>
<div style="margin-left: 10px; margin-right: 10px;">
<br />
But I'm reaching out my hand <br />
I just want to help you stand<br />
I just want to help you stand <!-- end of lyrics --> </div>
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MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com1tag:blogger.com,1999:blog-8300236006343884207.post-62758395066514556712014-09-16T16:33:00.001-04:002014-09-16T16:33:03.998-04:00Offering Advice[An excerpt from a conversation on a Facebook SMA support group. For privacy purposes names have been altered.]<br />
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I hate conversations like this. I hate that someone even needs to ask questions like this. The side effects of a diagnosis of type 1 SMA are potentially devastating no matter how you approach the use of equipment and g-tubes; there are no guarantees and that, truthfully, sucks. That being said, equipment and g-tubes are a valid option and one that should be examined on an individual family basis. I would never suggest that the equipment is right for everyone but I believe it is extremely dangerous to suggest that a family continue orally feeding if the child is obviously aspirating. Whether or not it is what you would choose for yourself matters very little when a life is at risk.</div>
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In case you're wondering what makes me qualified to be discussing this, I will give a brief history on my life experience because I do have some. I am 26 years old and have SMA. What type? Probably debatable on a number of levels but my neurologist at OSU says that I am a super strong type 1. Maybe he is right and maybe not but I am one thing for sure; me. I, some how, (I choose to say by the grace of God) survived to the age of 8 without breathing support and until 16 years old without a g-tube. I am living proof that you don't have to have those things to survive but I am also proof of how horribly things can go if you don't use them. I don't suggest that anyone, no matter the type, follow my path because it is a miracle that remains unexplained that I survived. It was difficult and I would not want anyone else to have to go through everything that I did to get to this point. I now have a g-tube, j-tube, and a trach. No one told me to make these decisions and the doctors even tried to talk me out of them. My options at the time of trach placement were 1) live in the hospital 2) get a trach or 3) die. Perhaps my life experience should have told me to give up and die since no one agreed with my decision. But I am stubborn and refused to live a life isolated in the hospital or die. </div>
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"Carl", it is admirable that you have been able to survive without any support, it really is. However, I think that you need to be careful when doling out advice to families with small children. My old physician regularly told other families not to worry about equipment because their child was similar in strength to me so they would not require assistance for many years either. More than 5 of these children ultimately passed away because they didn't have what they needed because they were predicted to be like me. That is a lot of guilt to live with day to day even though I was not directly involved. The likelihood that there is another person in the world who is exactly like you or I is very unlikely. This is why I am always happy to share my story with anyone but I am not going to say that they will have a much better chance at life if they follow me. My journey is not typical for a type one and I am well aware of how blessed this makes me. It is reckless and dangerous for individuals who are not typical of the disease process to run around selling snake oil to people who are sincerely desperate for any kind of hope. I am so honored to be able to share my story but I have a responsibility, as do you, if you remain a part of the community, to point newly diagnosed families to people who have experience with the average path of a type 1. We can be a source of hope to families only if we are realistic and the reality is we are not the norm. I don't believe in false hope but I do believe that people can easily be misled into believing that if they ignore their child's weaknesses they will improve and be like you. The reality is that everyday children are dying in spite of their parents doing everything they can to keep them alive. Life is tenuous for everyone but even more so for individuals with SMA. Share your story of hope but do it with respect for people who have lived differently. They have valid and important information to share as do you but no one is going to respect your opinions and experience if you blatantly disregard and disrespect everything that others do because it isn't your experience. You can be an example but not if you don't show a bit of compassion towards others. Respect in this community is earned not freely given away just because you're an adult with SMA. You need to show respect for parents by answering questions when they are posed. You can't be an example if you get offended by people asking for clarification. You may have a wealth of knowledge but it's of no use to anyone if you keep it for people you deem worthy. You're not a true type 1 and I am not either but I accept that I don't know everything. I don't claim to know what to do for the weak type 1s. I know my journey and that is all.</div>
MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.comtag:blogger.com,1999:blog-8300236006343884207.post-64162697933513966412014-09-05T19:30:00.000-04:002015-03-17T19:33:43.603-04:00Dear Me<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
<span style="color: purple; font-family: inherit;">Dear Me (The grammar in this letter is completely screwy since I don't make a habit of talking to myself, especially in the third person but I will give it a go.),</span></div>
<span style="color: purple; font-family: inherit;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdzz3X7S3zpQX8Oqcwe84F617nyAHIQuoxYXr-7kD2KxTtX5QltgR1nQGi5f9vYwRsu1xpNs0gfUSIPYgPqTXlPaHvYYJYWGy-rxDQ5o4XWQK2cSDTuY2UArzdEFrNvkU1oJ_vdf8lMurl/s1600/mjshirtclose%5B1%5D.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="color: purple; font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdzz3X7S3zpQX8Oqcwe84F617nyAHIQuoxYXr-7kD2KxTtX5QltgR1nQGi5f9vYwRsu1xpNs0gfUSIPYgPqTXlPaHvYYJYWGy-rxDQ5o4XWQK2cSDTuY2UArzdEFrNvkU1oJ_vdf8lMurl/s1600/mjshirtclose%5B1%5D.jpg" height="200" width="149" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: purple; font-family: inherit; font-size: small;">Me at 13</span></td></tr>
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<span style="color: purple; font-family: inherit;">I'm writing to you from thirteen years in the future. Since I know that math has never been your best subject, this is your twenty six year old self writing to your thirteen year old self. I regret to inform you that math doesn't become your best subject until your second quarter of college when you abruptly change majors and end up in "practical math", where you learn to balance a checkbook and make a budget. You get the only A in the class of twenty five students. No, I will not tell you to switch degree paths earlier in your college career because your original choice gives you a lifetime worth of entertaining stories to share with your friends and family. I will say, however, not to stress yourself out so much when you do decide to change majors three weeks into college; no one will be disappointed in you and you will find yourself in your second degree choice.</span></div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
<span style="color: purple; font-family: inherit;">You are going to be sorely disappointed to learn that your life at twenty six doesn't look anything like you anticipated but please take heart in knowing that you are alive. In a few short years your ability to survive will be questioned regularly by the experts in your disease. You have already outlived your supposed expiration date by quadruple at thirteen but, brace yourself because, from a health standpoint, your life gets a thousand times harder than it is right now. Sorry, I know that statement will terrify you because you hate hospitals, surgeries and, most of all, needles, but I won't lie to you. I want you to cherish what you have now without giving away the story. You're in for a lot of battles, physical and emotional, in the coming years. I'll give a small spoiler and tell you that you will get what you want most, as far as medical care is concerned, when you are twenty. You know, the thing you begged Dad and Dr. Bach for this past summer? Yeah that; you get it and although it is a battle that you have to fight, don't worry because you, ultimately, win that one, with your wit and ability to talk a million miles an hour fully intact. Now, don't get too excited just yet. You have a lot of battles before and after that one and convincing Dad turns out to be one of the easier ones. You will be shocked to learn that you speak up for yourself with passion and are pretty convincing now that you are supposedly a grownup...you still don't feel like one at twenty six but treasure the fact that you don't always have to make decisions for yourself at thirteen. I know that right now you want to be solely responsible for your life but it's not quite as much fun as you anticipate. Slow down and enjoy letting Dad and Brenda be in charge. I know you're not going to listen to that because you are stubborn (and you still are) but I had to say it to at least to pretend to be a responsible adult.</span></div>
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<span style="color: purple; font-family: inherit;">Now you're probably thinking "well at least I will have the plan that I made with my best friend, surely that must work out". Sorry to burst that bubble too, sweetheart. Your plan to be best friends forever, get married to brothers (preferably from the Backstreet Boys or The Moffatts), adopt a girl and boy, live in a beautiful ranch-style home next door to your current best friend is a big fat no go. No spoilers for this part of your life because I want you to make the same decisions even though they are seriously painful at the time. You will get through it, a little beaten and a lot bruised. It will hurt terribly the first time one of your so called friends says "oh! you have not died yet?". But you will learn to respond with witty lines like "I feel alive but it is quite possible I am haunting you from beyond the grave." and brush it off. You will learn that you relate better to people ten to twenty years your senior and you will find true friends, I promise. You will find acceptance in the strangest places and you will find love. It won't last long, it won't be expected or in the usual way but it will be real.</span></div>
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<span style="color: purple; font-family: inherit;">You're probably getting the impression that at thirteen you're living life at the best it is going to be and I don't want to leave you with that impression. You have a lot of difficulty ahead of you, I can't change that and quite honestly wouldn't want to. You're going to scare yourself plenty in the next few years but you will also find unbelievable joy. You have so much greatness coming your way. I know that one of your biggest concerns right now is having a purpose in life. Trust me when I say it will find you. You'll never believe how much influence you will have in the community. Be careful though because you have a lot of responsibility too and that could overwhelm you when it happens the first few times. You will get to live in your favorite state for more than six years (so far) so cherish your proximity to the ocean and authentic Italian food while you have it. Don't live life inside your game of Sims (yes, I know it's fun but it is really isolating in the long run so play with your own life in the real world sometimes please. Your vitamin D levels will thank you later on). You will be told again and again that you can't do something because of your physical limitations but you will find a way. You will go to college and be just as miserable as your </span><br />
<span style="color: purple; font-family: inherit;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUAgEx9ZFYUqEBKFz8ZyhpsN5QAI_JHI3Gm5RP3dfIKK-AlqA-SUNVfy7sVmlYYplcs9bSzb2iYG9AMrlILHxdvtHIk1QEumIibqLKtxCLL2JphyqIZP90pYKMgK4rb3EQfTtSkzbWafPT/s1600/10702168_10152758310152806_1274462891125394719_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="color: purple; font-family: inherit;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUAgEx9ZFYUqEBKFz8ZyhpsN5QAI_JHI3Gm5RP3dfIKK-AlqA-SUNVfy7sVmlYYplcs9bSzb2iYG9AMrlILHxdvtHIk1QEumIibqLKtxCLL2JphyqIZP90pYKMgK4rb3EQfTtSkzbWafPT/s1600/10702168_10152758310152806_1274462891125394719_n.jpg" height="320" width="180" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: purple; font-family: inherit; font-size: small;">Me at 26</span></td></tr>
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<span style="color: purple; font-family: inherit;">classmates. Please talk to them and don't hesitate to form friendships with the ones who are willing to see past the equipment and wheelchair, they are worth it. Do me a favor and try to get and remember the name of the guy you sit behind in Bioethics because you will see him often after college and he will know your name. When you start going to a new hospital in Ohio trust Brenda's sixth sense when she says that you are really sick. Trust will remain a huge issue for you but don't stress about it too much because you will adjust and learn who is worthy of your trust...even if you end up burned a few times before you figure it out. It'll build character, supposedly. Most of all trust yourself, you're usually right and even when you're not you are learning from the experience. You're going to be different than you're currently picturing yourself both inside and out. It's a bumpy, curving, twisting, road filled with hills and valleys but it is so worth it. Really, it is!</span></div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
<span style="color: purple; font-family: inherit;"> </span></div>
<div class="gmail_default" style="color: black; font-family: tahoma,sans-serif;">
<span style="color: purple; font-family: inherit;">Love Yourself</span></div>
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<span style="color: purple; font-family: inherit;">PS You're going to love Miss S. even more in a few days and she will be a part of some major days in your history. It will be a scary day in American history but when she offers you a hug, accept it because she needs it as much as you do.</span></div>
MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-63308545912932491092014-08-01T16:36:00.000-04:002014-09-16T16:38:47.689-04:00Passion Passion. I've been reading some extremely passionate posts as of late that are getting to me. Since I have been unable to think about much else than the hidden agenda behind the posts I am going say something.<br />
Passion is hugely important in any life, that is a fact. Having passion for something gives life purpose and direction. Passion is something that allows us to explain why something is important to us with conviction. That being said, forcing your passion down other peoples' throats doesn't endear you to that person any faster. I am passionate about many things but I don't believe that anyone else has to be passionate about what I am. I am totally comfortable being alone in passion and don't need validation from anyone else. <br />
I was going to leave it at that, cryptic as it is, but I can't allow myself to let it go. Perhaps I am in the minority but I feel the need to speak for myself whether or not anyone agrees with me. I know that the words "inspiration", "hero", and recently "warrior" are irksome to many adults with disabilities. I don't resent any of these words, when used in context, of people who genuinely find my life story to be encouraging. I don't relish the responsibility associated with being an inspiration to someone but, simultaneously, I am not phobic of the title either. It is a personal choice to accept or condemn the use of these words and I have chosen to accept the term, assign it to others, and live life to the fullest no matter what. However, more than anything, I find it hurtful to say that families who have lost their children to SMA should not refer to their lost loved ones as "angels", "heroes", or "inspirations". I will not say that every family must subscribe to these titles as it is a personal and familial choice. I will say that families who choose to use any or all of these titles should not be condemned for doing so. I do consider many of the battles being fought by tiny children worthy of being referred to as heroic and inspirational. I look at the struggles faced by many of the children and find myself in awe of their strength to push through the toughest of times. Mothers and fathers who have lost their children and remain dedicated to the community and awareness are the most heroic in my eyes; my own father being one of them. SMA, whether you choose to recognize this or not, steals the lives of individuals every year and it is a reality that parents around the world have to live with. It is disheartening, to say the least, that certain individuals can't see how their statements could be extremely hurtful to those who have lost someone to SMA. I am in agreement that SMA isn't a wicked aspect of my life, I have things about myself which I have no control over and certainly can not change. It does not make me or the disease wicked...It just is... I must completely disagree that assigning titles such as "hero", "angel", or "inspiration" make someone lesser or to be ridiculed. We do not know that family's journey to using those words to describe their loved one and should not judge what we do not know.<br />
In conclusion, I know August is a month of passion for the SMA Community geared towards awareness. Don't worry about the wording of your awareness posts if you choose to include warrior and angel in your posts. In my opinion warriors are individuals who fight battles; whether those battles are fought with the mind or with the body matters little in the long run. If you are fighting for something, anything, you are a warrior to me. Fight onMJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-56496224492690586102013-03-25T13:40:00.002-04:002013-03-28T16:05:38.334-04:00Seize the MomentFor days now I have been trying to think of a way to say what I want and not have it sound cliché or, worse yet, stupid. It is ridiculous how many people find a phrase and say it so much that it starts to lose the intended meaning. That is exactly what I don't want and, while it is flattering to be quoted, I didn't write this so <strong>don't</strong> quote me. There, now that that is out of the way, let's get to the point...<br />
<br />
For most of my life, at least since I was 9, I have said that quality of life is more important to me than quantity of days. There is quote that might better explain it; "I'd rather have thirty minutes of wonderful than a lifetime of nothing special." ~ Steel Magnolias. It is the truth for me. At 9 years old I probably could not have expressed it in such a heartwarming manner but I certainly have lived my life in this manner for a very long time. <br />
<br />
Unfortunately, the last year or so has kind of flipped that around for me. Certainly there have been moments where the quality far outweighed the quantity of time (see <a href="http://cdnphotos.caringbridge.org/1/0/0/6/100671/l.nIDYZxFryVwWNPQY.jpg" target="_blank">this collage of photos from June 2012</a>) but more often than not I have found myself simply existing. That was never part of my plan but we don't always get to control how the moments play out in our lives.<br />
<br />
I learned very early on that I can control very little in my life and that is, a lot of times, a great thing. I would not have had some of the amazing experiences I have had if I insisted on being in control of the situation. Control is important in some situations (medical treatment, for example) but I am far more accustomed to not being in control...but I digress.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu8y_GYGYst0rqolNGC5kwZiQHaG_0McbX8RZaWWpm7pUIseK-Oum0ksdajRqUbN2wJG8WLcGYVn7K6fnbsFm3cpaRMLD49q41Zm_xIkJZngEmhjG3CDPfKGfELPyW61yMR6CU18HjpFpV/s1600/156044_616850741663267_15689401_n%5B1%5D.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu8y_GYGYst0rqolNGC5kwZiQHaG_0McbX8RZaWWpm7pUIseK-Oum0ksdajRqUbN2wJG8WLcGYVn7K6fnbsFm3cpaRMLD49q41Zm_xIkJZngEmhjG3CDPfKGfELPyW61yMR6CU18HjpFpV/s1600/156044_616850741663267_15689401_n%5B1%5D.jpg" height="200" width="200" /></a></div>
Existing seems like the easiest path when you're not feeling well. It is easier to sit back and relax than to continually push for a quality moment. That being said, I have come to the conclusion that I don't want to live that way. I have been given the opportunity, denied to so many, to live. I should not waste that opportunity by simply existing in it. Will every day be fun filled, memory making, never forget kind of day? No, probably not but that doesn't mean that I don't owe it to myself and life to live it.<br />
<br />
I recently finished a book, <a href="http://www.amazon.com/Forever-Is-Over-Calvin-Wade/dp/1456770098/ref=tmm_pap_title_0?ie=UTF8&qid=1364232485&sr=1-1" target="_blank">Forever is Over by Calvin Wade</a>, that basically summarized what I want out of life in the first chapter. Obviously I am well aware that not everyone can or will choose to live their life this way but, if you do, do it well and with passion. For yourself, your children, everyone you know because life is worth it.<br />
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<blockquote class="tr_bq">
Enjoy it, learn from it and more than anything, never take your health for granted. Don’t just seize the day. Seize the moment. Every single one.</blockquote>
<br />MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-76811192788871898882013-03-09T20:51:00.000-05:002013-03-09T20:51:00.699-05:00PS I Love You(This post is a few days late or a few months early, depending on how you want to look at it. Either way it is important to me so please, read on...)<br />
<br />
In the traditional sense of the word love, I may be the most naive 25 year old ever but that is okay with me. You see, I don't have an epic love story, pop music love song (containing far too many "baby, oh" lines), not even a love limerick to be shared with the world. Nope, nothing. But my love story is better than any Hollywood blockbuster or chart topping ballad; it is real and heartbreaking.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_aMNDscmgNAapaIMCkpCAhtBo4PR5gmV60RUdgX6KRXpe9ZEN5Ciqr-l10o4aETwhYDvZ6HHLaFwpj0_BBGtat-ITtE0Bf6aKgt1uDGx6pJRJ4y5HDdVnfPTOjhvf889I4-v5OHtHu423/s1600/549927_10151511462681064_2140346993_n%5B1%5D.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_aMNDscmgNAapaIMCkpCAhtBo4PR5gmV60RUdgX6KRXpe9ZEN5Ciqr-l10o4aETwhYDvZ6HHLaFwpj0_BBGtat-ITtE0Bf6aKgt1uDGx6pJRJ4y5HDdVnfPTOjhvf889I4-v5OHtHu423/s1600/549927_10151511462681064_2140346993_n%5B1%5D.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Logan with his B4SMA Blanket</td></tr>
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It isn't a fairytale but it does begin long ago and far away in a land called Arizona. At the time, I was a junior in high school. I spent a lot of time on the internet because, other than precalc, I finished school work pretty quickly and was weeks ahead due to being homeschooled. On this particular day I came across a post on an SMA website pleading for help. The poster had a good friend who had a son who was critically ill and in the hospital. At 6 months old, this baby had already been resuscitated several times by his mother and father. Jennifer, the friend and poster to the SMA website, and I became fast friends. We would email frequently about ways that the hospital could help Logan do better. We also sent Logan a blanket from B4SMA. The blanket was covered in teddy bears with wings. I had chosen the fabric months earlier because it reminded me so much of my sister, Emma, who lost her battle with SMA in 1992. When Jennifer said that Logan's nickname was Logibear, I just knew that he had to have the teddy bear angel blanket.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_bcWUbAAigs4e0Dz_jsh2Di8x_uGDqEpCxCNcx87E_BN1o0MzH_9SYs1MdBgo4IRronrL82beb4MQhqSN4FeuxCZYEUL1k4KS5ntYTLBj-s7gtlAcTH6Oa4UgsJscqlF2bjihgFL5dSu_/s1600/544185_10151511463671064_933460214_n%5B1%5D.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_bcWUbAAigs4e0Dz_jsh2Di8x_uGDqEpCxCNcx87E_BN1o0MzH_9SYs1MdBgo4IRronrL82beb4MQhqSN4FeuxCZYEUL1k4KS5ntYTLBj-s7gtlAcTH6Oa4UgsJscqlF2bjihgFL5dSu_/s1600/544185_10151511463671064_933460214_n%5B1%5D.jpg" height="233" width="320" /></a>After Logan was discharged from the hospital, Jennifer got me into contact with Shelle, Logan's mom. Over the next few months we communicated almost daily. I fell in love with Logan's spirit and his family. During the fall of 2005, Logan's dad, Chris, asked me which baseball team I liked better, Mets or Yankees. Being raised in NY one would think that I would have a preference but I really don't like baseball so I didn't have answer for him. I told Chris that I didn't like baseball but I liked the Steelers, knowing that Chris was a huge Pittsburgh Steelers fan. He was so excited by that response that he said someday Logan and I would be engaged and married.<br />
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Now, I know what you must be thinking. An approximately 17 year age difference is not okay. But it was the real thing. I don't mean that I was robbing the cradle. I loved Logan and he me. Just like a real boyfriend and girlfriend we sent each other gifts and "emailed" and Skyped often. <br />
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In February 2008, I was in the hospital recovering from the flu and trach surgery. I was discouraged and just generally unhappy, having been in the hospital for more than 50 days at that point. I received an email with several photos attached from Shelle. (I'll include the pictures below so you get the full effect)<br />
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Needless to say I smiled for the first time in days and quickly responded with my own picture (which I can't seem to find, regretfully). In any case, I said yes and throughout the SMA Community we were considered engaged. Logan sealed it with a promise of a ring as soon as he saved up enough allowance. <br />
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After over a year of being engaged to Logan, the unthinkable happened. For all intents and purposes it was a typical Monday for me. I slept in, not having class at all that day. Around 11, Brenda woke me up and I instantly knew by the look on her face that something was wrong. <br />
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"What?" I asked, not trusting my voice to say anything more. Brenda looked right into my eyes and said the worst two words in the world.<br />
"He's gone."<br />
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I didn't even have to ask who, I just knew. Logan hadn't been sick and yet I knew, deep down inside my heart, that he was gone. It was not long after that my cellphone rang. It was Jana, one our SMA friends, calling to tell me what happened to Logan. As I listened I cried. He was only four years old and he was gone. After I hung up the phone, I threw myself into making a <a href="http://www.our-sma-angels.com/logibear/Videos/logans_life.htm" rel="nofollow" target="_blank">video of Logan's glorious life</a>. Shelle and Chris used the video at the celebration of Logan's life.<br />
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I never got to meet Logan in person but everyday, he reminds me of what true love is really about. It doesn't matter that we were 17 years a part in age or thousands of miles a part in distance. Logan loved me and I him...I always will. Love isn't about numbers, it is about the signs I get on my worst days or my best or even while writing this post. Logan would have been 8 on the 5th of this month and I still miss him every day. <br />
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P.S. I love you, LogibearMJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com2tag:blogger.com,1999:blog-8300236006343884207.post-33678334339116684222013-03-05T18:30:00.000-05:002013-03-09T17:37:49.747-05:00The Ugly Truth<div>
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In the winter of 2010, I wrote that I was privileged to have SMA. Now that privilege doesn't seem to ring as true for me. Shocking, right? I am usually the girl you can count on for the upbeat and eternally positive. Don't worry she didn't go anywhere permanently she is just on brief hiatus. Today I am a grouch. I am angry. I am whatever the inverse of happy go lucky is and most of you don't know that side of me. But please don't be afraid because I think you will understand, once I get to the point. Bear with me...</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihTjOLs26AENsPm_Jpnfy9TqXaaAOWH5FANI0ziyqP28ZcCKgSsvSPyeDbx4whvlV5jcu0r0cF7oPmIy4kDT6nZ6yANYss5JKA9xCmmYviwAdN0NasyJUCmhh_8bpdBG-sDptyMtBd69V7/s1600/spring%5B1%5D.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihTjOLs26AENsPm_Jpnfy9TqXaaAOWH5FANI0ziyqP28ZcCKgSsvSPyeDbx4whvlV5jcu0r0cF7oPmIy4kDT6nZ6yANYss5JKA9xCmmYviwAdN0NasyJUCmhh_8bpdBG-sDptyMtBd69V7/s1600/spring%5B1%5D.jpg" height="320" width="184" /></a>At 25, I have had my fair share of bad days. I remember clearly the first day that I realized I was different. Oh the horror of being 6 years old and realizing that I was, to my udder amazement, not the stereotypical first grader. Staring at the brick wall of my elementary school, in a self imposed time out, I came to the realization that I was different. This epic awareness of my differences was terrifying at age 6. Where had I gone wrong? Why did I have to be different? As the reader, you feel for 6 year old me, don't you? Suddenly aware of the huge differences between myself and the other 6 year olds that made up my playground playmates. But as the reader you are also assuming that I cried, hot streams of anger, because I could not participate in some physical activity that segregated me because of my physical limitations. That is where you would be wrong. Those tears of inequality streamed down my tiny round face because I had suddenly realized that I was not and would never be African American. Yes, it seems ridiculous now that it had not occurred to me previously that the whiteness of my skin disqualified me as an African American but the 6 year old me was devastated . My differences in physical ability or lack thereof didn't impact my self esteem until much later in my life.</div>
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Now, what was the point of that story, right? My point is that, in general, the situations that are supposed to make me mad, don't. I am not angry that I have SMA. I am not grouchy that the things that I could do 5 years ago are a distant memory of abilities. I am privileged that I am alive. I am privileged to have been raised by individuals who didn't let me have pity parties often. Today sucked and everyone would agree with that assessment, SMA or not. Having said that, it doesn't mean that tomorrow won't be a great day. (it probably won't be because it is going snow and ice tonight but that is another story for another day) Seeing that today was not so great doesn't guarantee that tomorrow won't be at least a tiny bit better. Having SMA isn't the privilege; being alive is!</div>
MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-67842477460617835382012-12-28T14:00:00.000-05:002013-03-09T18:03:26.730-05:00Its Not in My Chart or my Declaration of Independence <span style="color: red; font-family: Arial, Helvetica, sans-serif;"><strong>The following document is something that I got from a great friend. He gave the bare bones and I filled it in with information that I think is important. The information below is intensely personal and real. It was written over the course of 2.5 years and contains a lot of information that is not public knowledge; until now. Comments are always appreciated but please be gentle with my life. Please feel free to take components of this and make it your own. Parents reading this, consider creating something smaller and similar for your child. It can be as simple as your child's likes and dislikes. Whatever you think physicians, nurses, respiratory therapists, other therapists, etc need to know that isn't in a medical chart.</strong></span><br />
<a name='more'></a><br />
<strong>When you come into my hospital room, you need to know the facts of my life, that there is information not contained in my hospital chart. My chart is important, for my medical history, but is missing some extremely important information that you need to have, preferably before you come into my hospital room.</strong> <br />
<br /><strong><u>Here Is Some Of What You Need To Know:</u></strong><br />
<br />I am a designer; I design websites, T-shirts, and produce videos <br />I am the president of an organization dedicated to sending blankets to others living with SMA from across the world <br />I love life, country music, my friends, butterflies, mismatched socks, my Kindle, comedies, helping others, talking, Italian food, and shoelaces <br />I have been a member of the online SMA Community since I was 12 years old and dedicate my free time to “my” kids (other individuals living with SMA) <br />I have limitless amount of memory and, if you take the time to get to know me, I will remember everything you say about yourself <br />My best friends are people just like me. We have a plethora of abilities and likes, we agree and disagree, and have humor to match our life experiences – ever changing and impossible to predict. <br />
<br /><strong><u>When You Come Into My Room, You Need To Know the Losses of My Life</u></strong> <br />
<br />No, I can’t walk but I can feel everything, hear everything, and see everything. My inability to walk does not correlate to my ability to think and feel. I’m almost 25, not 5, so talk to me like you would one of your friends or relatives, not a small child. <br />I lost my mother and sister at very young age. I like talking about them and their impact on my life. <br />Despite being hospitalized numerous times throughout my life, I don’t enjoy being in the hospital. It is a necessary “evil” in my life. <br />I am chronically ill, and am seeking a life that is not just tolerable but enjoyable. I seek a quality of life not necessarily a quantity of days. "I would rather have had 30 seconds of wonderful, than a lifetime of nothing special.” <br />Even though I'm almost 25, I sleep with at least 6 stuffed animals every night. I like to say they are for positioning purposes but they are also a great comfort in the hospital when I’m surrounded by unfamiliar objects and people. <br />
<br /><strong><u>When You Come Into My Room, You Need To Know My Body</u></strong> <br />
<br />I know my body. I know what is happening in my body and I can usually tell you what you want to know. I’m extremely aware of what is happening inside me. I know when something just isn’t right, even before it shows up in my blood or on an x-ray. <br />I’m a night owl. I usually stay up until at least midnight and would sleep until noon if allowed. I don’t generally wake up in the night unless I’m in pain. <br />I have a high tolerance for pain and don’t generally complain about the pain. This does not mean that I don’t experience pain, I just don’t express it. <br />I don’t like the vent being disconnected without warning. Warn me, even in the middle of the night, if you must disconnect me. Think about it; what if someone plugged your nose without warning you? <br />I take more than 10 medications every day. I know what they are supposed to look like and how much should be in each syringe. If it doesn’t look like my medication, I will question you. <br />I hate doctors who confer outside of my room; I worry that they are talking about me in a context they cannot talk about in my presence. I know more about myself than any doctor ever will so talk to me, about me. Nothing about me without me. <br />I live by medication, technology, and medical equipment. These things keep me alive. I need these things in order to live, not just a good life but a great life. <br /><br /><strong><u>When You Come Into My Room, You Need To Know My Fears </u></strong><br />I am emotional … a fully functioning feeling person. I reserve the right be angry, sad, frustrated, afraid, happy, apathetic, and any other array of emotions during a hospitalization. <br />I am petrified of the words “surgery” and "procedure”. I want as much information as possible before agreeing to either. I will question you about everything, so be prepared, <br />I once could not tell anyone I was awake, aware, and in pain because too much paralytic medication was given to me. I never wish to experience that again. <br />New, unexplained, symptoms scare me. Work with me to figure out what is going on. Do not blow off the “little” symptoms because for me they have a tendency to turn into the “big” things without fair warning. <br />I occasionally question life’s unfairness for others. I’m not one to question my purpose, very often, but I worry about everyone else. I have a large group of friends so when they hurt, I hurt. <br />I am not afraid of dying. Death is a part of my life and I am not afraid of it. Death comes for everyone, eventually, and I’m ready for it. This does not mean I want to die, anytime, in the near future but when my time comes, I will be ready. <br />
<br /><strong><u>When You Come Into My Room, You Need To Know My Mind & My Spirit</u></strong> <br />
<br />I believe. I believe in God, a higher power, whatever you want to call it. I believe with my whole heart and that cannot be taken away from me. <br />I have faith. I need you to have faith. When you come through my door, I need you to believe in my ability to heal and get healthy. Your positivity rubs off of me and if you are negative, it will affect me also. I’m not going to “be healed” of my SMA, this I know. I need you to believe in my ability to get over my infections or whatever reason I’m currently dealing with at the time. <br />I sometimes wonder if I would be who I am if not for my family and friends. I need them, more than ever, when I’m hospitalized. In person is the best because they heal my soul and keep my spirits up. I have a large, very tight knit, family. They need me as much as I need them. I am connected to so many individuals via the internet and rely on the people there to keep my spirits up, also. They, my friends and family, are better medicine than any amount of antibiotics or doctoring you can provide. <br /><br /><strong><u>When You Come Into My Room, You Need To Sustain My Hope</u></strong> <br />
<br />I believe love wins over hate; hope over despair; life over death <br />I hope against all hope that I will be able to return to my life after each and every hospitalization. I need you to hope that for me. <br />I pray and believe prayer heals. I don’t need you to believe this in order for you to care for me but it doesn’t hurt if you do. <br />Some days I am able to make sense of the pain, both physical and emotional, that I experience with every hospitalization. Other days, I simply cannot. Support me during both. You cannot possibly imagine what I go through every day, even when healthy. Just be understanding during the bad days, as well as the good. <br />Always tell me the unvarnished truth. Things work much better for all parties if you can be honest with me. Support my hope that tomorrow there may be new medicines and new surgeries that will make my life, or the lives of future generations, better. <br />I ask that in this moment, you care deeply, for me and what I am dealing with currently. In this moment, you will do your best. You will listen to me and my concerns, in this moment. You will promise me a healing partnership, in which every opinion is heard, especially mine, on every subject matter impacting my health status. <br />Keep hope alive, even while being truthful. Hope is all I have to fight with. Plan on not giving up on me and in return, I won’t give up on your abilities to make me better, at least this time. <br />
<br /><strong>I don’t expect you to know everything about SMA or my life. I do, however, expect you to listen when I or my caregiver speak and respect our combined knowledge of me, my body, and my life.</strong> <br />
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MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-42698630739491295092012-10-21T11:42:00.001-04:002013-03-09T18:04:10.595-05:00Hospital ExperiencesAs many of you know, I was released from an 11 day hospital stay on
Friday. My second shortest ever. During those 11 days, I learned a lot
about myself and the people caring for me. Let's begin with the fact
that I have been going to this hospital for about 4 years. Despite the
fact that they have recently relocated, it is the same hospital. Going
to this hospital, I know what, and usually who, to expect. This time was
different, very different. Since the relocation of the hospital, the
floor that I used to be on has been divided. Basically, the RNs chose up
sides based on their interest in intensive care or asthma and cystic
fibrosis. This was a bit concerning for me at the beginning...I've grown
attached, felt comfortable with, knew who would take awesome care of
me. Day 2 of the hospital stay brought my first change in care
providers: a new nurse, a new male nurse. Let me state for the record
that I have zero issue with nurses gender and quickly found a groove
with him. He teased me, I teased him. That made for a great report
between the two of us. During my stay, I ended up with 6 new-to-me RNs,
quite possibly my record. I didn't get along with all of them. Some days
were spent wishing that those twelve hours would hurry the heck up,
while others were spent wishing that the 30 minute breathing treatment
could last just a little bit longer. This isn't to say that any of
medical professionals were bad at caring for me; they just didn't fit.
I, personally, didn't care for their reactions to certain situations,
their level of attention given, or any number of little quirks. We just
didn't fit. For people who are hospitalized frequently or for a long
period of time, the hospital staff becomes the epicenter of the
patient's social life. Good or bad, right or wrong, you are forced to
spend 24 hours a day with these people. Like it or not, you have at
least 4 hours with someone who may or may not know anything about you,
your underlying condition, or the reason you're there. It is a job to
many, nothing more, nothing less. They are being paid to make sure you
survive their shift. Sometimes the individual will go above and beyond,
remembering that you are a person, basically trapped, and treat you with
kindness and respect. I cannot say that I experienced more than either
kind of medical personnel, but having just one in your day can,
unintentionally, ruin it. That being said, my carers, for the most part,
brightened my days. From the RT who held my hand and wiped my tears
during the 7 attempts to place a PICC line to the nurse who hasn't taken
care of me since my second hospitalization and fell right back into our
routine. From the PT & MT who teased me mercilessly just to make me
smile to the RT that would bring students for me to teach to break up
the day. From the RT student who reminded me that I am just a girl and
it is okay to talk about normal 24 year old things to the physician who
stayed all of a Sunday just to insure everything went well for the
following day's surgery. Hospitalizations are never fun but you make it
bearable. MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-81721025802298936712012-04-28T14:47:00.002-04:002012-04-28T14:49:46.586-04:00Change<br />
<div class="MsoNormal">
Change is something that many people do not embrace. I
happen to be one of them. Whether it is something small, like bad weather
canceling an event, or something big, like an unpredicted medical crisis, I don’t
like change. For me, I think most of my problem with change results from the
lack of control. I don’t have control over much, physically, because of my
physical disability and when control of my plans is revoked, I hate it. </div>
<div class="MsoNormal">
So when forced to deal with change, I begrudgingly meet the
challenge head on and try to accept it. That doesn’t always work for me and the
people in my life. My most recent experience involved my very least favorite
kind of change: a change in my medical team. Most people are aware that I have
a great deal of complex medical needs which requires my physicians to be
willing to think outside the box for the majority of treatment options.
Throughout my 24 years of life, the members of my team have changed more times
than I care to recount. Most of these changes were as a result of the physician
moving on but some have been removed from my team because of their
unwillingness or inability to think of me as more than medical record number
blah blah blah. Despite the medical establishment’s general unwillingness to be
open to someone defying the statistics, I must continue to utilize their services.
My medical team, as of January of 2012, was finally beginning to take the shape
of a winning team. With physicians from most of the –ologies, our success rate
wasn’t great but they were learning to listen to me and my family. Then my
world came crashing down…one of the physicians, the one that I trusted the most
and had known the longest, announced that he was moving to another state for
the next 2 years. What? Why? What am I going to do? He assured me that I would
be in good hands and he would still be available for consultation if I needed
him. Having previously been involved with almost all of his colleagues, who
left me unsure of their competency at best and afraid for my life at worst, I
was heartbroken and frightened. Unless he reads this, he’ll never know that I
was literally counting the days until his return. While he did his best to
reassure me that all would be well, I still had reservations. That was until he
told me who my new doctor would be in his absence. Relief washed over me as we
discussed, at length, who the new specialist would be and his understanding of
my complex needs. Great! It’ll be just like old doctor was still here, right?
Wrong, very, very wrong…</div>
<div class="MsoNormal">
While the new physician is a kind person and listened to us,
his lack of knowledge was concerning. Knowledge is power, right? So why after
years of education, was his best answer “I’ll have to get back to you”. Better
than pretending he knew exactly what to do but still. I was open minded going
into the appointment but came out discouraged and confused. My new physician may
not be a part of my team for very long but he will know one thing when we’re
finished… Medically speaking, I’m difficult. I don’t follow the natural
progression associated with any of my diagnosis and for the most part, I am
infamous for throwing curve balls. That being acknowledged is a major part of
being a successful team member on my medical roster. I’m difficult, I know
that. But don’t count me out just because I’m beyond your level of expertise.</div>MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com1tag:blogger.com,1999:blog-8300236006343884207.post-56949779784522195082012-04-16T15:53:00.001-04:002012-04-16T15:55:06.694-04:00Ignorance is Bliss<!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:trackmoves/> <w:trackformatting/> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:donotpromoteqf/> <w:lidthemeother>EN-US</w:LidThemeOther> <w:lidthemeasian>X-NONE</w:LidThemeAsian> <w:lidthemecomplexscript>X-NONE</w:LidThemeComplexScript> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> <w:useasianbreakrules/> <w:dontgrowautofit/> <w:splitpgbreakandparamark/> <w:dontvertaligncellwithsp/> 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unhidewhenused="false" qformat="true" name="Subtle Emphasis"> <w:lsdexception locked="false" priority="21" semihidden="false" unhidewhenused="false" qformat="true" name="Intense Emphasis"> <w:lsdexception locked="false" priority="31" semihidden="false" unhidewhenused="false" qformat="true" name="Subtle Reference"> <w:lsdexception locked="false" priority="32" semihidden="false" unhidewhenused="false" qformat="true" name="Intense Reference"> <w:lsdexception locked="false" priority="33" semihidden="false" unhidewhenused="false" qformat="true" name="Book Title"> <w:lsdexception locked="false" priority="37" name="Bibliography"> <w:lsdexception locked="false" priority="39" qformat="true" name="TOC Heading"> </w:LatentStyles> </xml><![endif]--><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-fareast-font-family:"Times New Roman"; mso-fareast-theme-font:minor-fareast; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} </style> <![endif]--> <p class="MsoNormal">Not much gets me as fired up and passionate as someone questioning my quality of life. Lately, in the communities I’m a part of, the topic of quality of life for someone with a severe physical disability has come up. Although the issues are separate topics (one blogged about by a family, the other two by nationally televised programs) I found myself feeling frustrated by the beliefs expressed in all three forums. </p> <p class="MsoNormal">There is an old saying that goes “ignorance is bliss” but, in my opinion, that couldn’t be further from the truth. Lack of understanding, in my experience, leads to a great deal of misunderstanding. Looking at the child version of myself, you would not have thought anything was wrong with me…you would have thought that I was an average baby girl. My parents learned that I had a potentially fatal disease called Spinal Muscular Atrophy or SMA. In 1988, they weren’t offered much, other than “take her home and love her”. To this day my father says “as if we would have done anything else”. The truth is, my parents did exactly what they were told but also took the diagnosis and its accompanying timeline of a maximum of 2 years and lived. As a child, my parents insured that my life, and that of my younger sister’s who also had SMA, was full of ordinary things. We attended school, went to the beach, family vacations, spent time with friends, had tea parties, and so much more. There were medical things that had to be addressed too. We had daily breathing treatments, physical therapy, speech therapy, doctor appointments, shots and hospital stays. It wasn’t the life that my parents imagined when they found out they were having a baby but it was an awesome childhood. In 1991, my father became an unwitting single parent after my mother was killed in a car accident. He was forced to take on the role of mother, father, doctor, nurse, chauffeur, chef, and so much more. In the next year, we also lost my sister to SMA and we became a family of two. Life changed drastically as we moved and attempted to start over. Despite the hardships, my dedicated caregiver, Brenda, ensured that my childhood was nothing less than extraordinary. SMA limits my ability to do almost everything independently. I have never had the ability to sit, crawl, stand, or walk but that didn’t keep us from doing anything I could think of, from horseback riding to canoeing to flying in an airplane. My world was only limited to my imagination. Despite what passersby’s may have thought when they looked at me, I have lived an extraordinarily happy life and I’m not done yet. </p> <p class="MsoNormal">Quality is defined as “The standard of something as measured against other things of a similar kind; the degree of excellence of something”. So I guess that one could say that you don’t know quality until you have something to compare it against. In this instance, no one can judge what quality is to another person. Like it or not, I feel that my life is a quality one worth living. Despite needing to rely on life giving equipment, I enjoy myself and feel that today, at the very least, is worth it. I can’t judge another person’s quality of life because I don’t live it but my inability to accurately predict that there will be quality moments in every day should not allow me to quantify their days. We’re not born with an expiration date that is visible to the world and as such no one knows how long they have. I agree with most people that however many days you have; they should be made the most of. But, that being said, into every life there must fall some unpleasantness. Not many children enjoy car seats, yet any responsible parent makes their children use them because they are to protect them. Similarly, my father chose to protect my life by providing certain equipment that may not have been my favorite. Everyone has the right to decide what is best for their family and child. I don’t have to agree with anyone else’s choices but please don’t force your choices onto me. My life, my choice. I know that life is a terminal experience and that my days are fewer than they were last week but I am determined to enjoy this “terminal illness” because that is the hand God chose to deal me. It can be hard but life would not be worth fighting for if it was easy. </p> <p class="MsoNormal">From the outside looking in, you might assume that I have nothing to live for but you would be wrong, dead wrong. Yes, I require a trach and ventilator to breathe. Yes, I have a feeding tube because I can’t eat enough by mouth. Yes, I use a power wheelchair because I can’t walk. Yes, I have been in the hospital longer than I can count. But when I wake up in the morning and look out the window, I’m thrilled that I have the opportunity to live another day to its fullest. I have bad days, like everyone else, but despite what you might think, I also have some amazing days. My quality of life is probably better than some able bodied individuals. I know, at 24 years old, I’ve outlived the doom and gloom prognosis given to my parents by more than ten times. I know that tomorrow is not promised to anyone so, despite what you might see as limitations too large to overcome, I will live this day, and every one after it, to the fullest. My disabilities are made disabling by others ignorance. “Ignorance is bliss”…or is it? </p>MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com28tag:blogger.com,1999:blog-8300236006343884207.post-18729076631282181512012-02-04T23:33:00.001-05:002012-02-04T23:36:04.356-05:00I want you to know...To all the SMA kids growing up now, here are some things that I want you to know. <!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:trackmoves/> <w:trackformatting/> <w:punctuationkerning/> <w:validateagainstschemas/> <w:saveifxmlinvalid>false</w:SaveIfXMLInvalid> <w:ignoremixedcontent>false</w:IgnoreMixedContent> <w:alwaysshowplaceholdertext>false</w:AlwaysShowPlaceholderText> <w:donotpromoteqf/> <w:lidthemeother>EN-US</w:LidThemeOther> <w:lidthemeasian>X-NONE</w:LidThemeAsian> <w:lidthemecomplexscript>X-NONE</w:LidThemeComplexScript> <w:compatibility> <w:breakwrappedtables/> <w:snaptogridincell/> <w:wraptextwithpunct/> 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mso-style-priority:99; mso-style-qformat:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;} </style> <![endif]-->I want to tell you some things that have helped me to live a great life despite SMA. I’m going to give you some bullet points that I hope help you live the extraordinary life I know is waiting for you. <ul><li><span style="font-family: Symbol;"><span style=""></span></span>Don’t let your SMA define you. It will impact your daily life, yes, but don’t let it be all you are. You are smart, beautiful, talented, and sassy already at age two. I know that you have so much more inside of you that is just yearning to get out. Yes, you HAVE Spinal Muscular Atrophy but you don’t have to BE Spinal Muscular Atrophy.</li><li><span style="font-family: Symbol;"><span style=""></span></span>Your abilities are far greater than your disabilities. You can do so much more than you cannot do. Sometimes it may seem like your limitations are greater but I know that the challenges you have and will face will make you a stronger person. You will get frustrated by your uniqueness from time to time but remember that we are all talented in different areas. You may not be able to walk but I know that you are so smart. You can teach the world so much. With a bit of imagination and some help from your family and friends, you can master just about any activity. <span style=""> </span>Embrace your differences, for they are what will keep you going! </li><li><span style="font-family: Symbol;"><span style=""></span></span>Never give up! Your mother and father have given you a fantastic starting point by loving you unconditionally and giving you the best chance to succeed in life, both physically and emotionally. But you know that a lot of this is up to you and your tenacity. You have so many choices to make now and in the future. You can decide, every day, whether or not to be limited by what you can’t do. If you can, be excited by the potential of each and every day. You have so much to show people, don’t give up! </li></ul>Thank you for letting me be a small part of your life. I can’t wait to see all the things you have to teach us.MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com2tag:blogger.com,1999:blog-8300236006343884207.post-51954523373816667262012-02-03T13:04:00.003-05:002012-02-03T13:12:34.494-05:00Newly Diagnosed FamiliesI was recently asked how we deal with talking to newly diagnosed families. This was my response<br /><br />We come into contact with a lot of newly diagnosed families because of B4SMA. It can be a lot of work, emotionally and physically, to help families get the information they need to make the right decisions for their families. First of all, for your own mental health, remember that you can only help people who want to be helped. Offer up your story, what you know to have been helpful for your family. Give them links to websites that you got your helpful information from (<a href="http://www.fsma.org/index.cfm">FSMA</a>, <a href="http://www.sophiascure.org/">SCF</a>, <a href="http://thegsf.org/">GSF</a>, <a href="http://fightsma.org/">FightSMA</a>, <a href="http://www.miracleformadison.org/">MFMF</a>, etc). Be sure to share support/supply organizations as well (FSMA Care packages, <a href="http://www.our-sma-angels.com/colesquilts/index.htm">Cole's Quilts</a>, <a href="http://www.our-sma-angels.com/b4sma/">B4SMA</a>, etc.). Mostly, from personal experience, be prepared for the family not to agree with the path you chose for your family. Should they decide, for example, to use palliative care instead of NIV offer to give them contact information to families who have chosen similar paths. Do not push your beliefs but share openly your experiences, both good and bad. It is not always easy to help but if you are prepared for various situations ,you will be fine.MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com0tag:blogger.com,1999:blog-8300236006343884207.post-46461791961085036612010-11-30T20:00:00.000-05:002010-11-30T20:02:31.254-05:00We are SMASpinal Muscular Atrophy (SMA) is a neuromuscular condition that many people have never heard of until it is too late. Diagnosis Day – SMA comes into your life like a bomb, forever altering the hopes and dreams that lay before you moments earlier. You have just been told that your child has Spinal Muscular Atrophy and will, likely, not make it to their second birthday. Will your child be a dancer? A painter? A musician? An athlete? An actor? A scholar? According the statistics, the doctors, even internet resources, the answer is a wholehearted, unquestioning, NO. Your child will fight to breathe, swallow, move, eat, and possibly even lose their precious smile. You will learn more medical terminology than the entire cast of Grey’s Anatomy and worse yet, you will retain the information and be able to argue your position to the most educated physician without hesitation. You will learn what it means to have a g-tube vs. a gj-tube, a Trilogy vs. an LTV, and a tracheotomy vs. NIV. You will fight, fight for the care you want your child to receive, fight with others who do not understand your decisions, fight for your child’s life. And despite all of this, you will be reminded on a daily basis that no matter what you do, your child will not survive beyond the age of two. You will say, to yourself and others, “no, my child will beat the odds…we will be the lucky ones”. Perhaps you’re right and, yet maybe you’re not. There is no way to know.<br /><br />But let’s back track…Why can’t you live life to the fullest? Why can’t your child, despite physical limitations, be whatever he or she aspires to be? Yes, it’s true that there is no treatment, no cure for SMA. But that doesn’t mean life must come to a halt. You can choose to focus on the statistics, the hopelessness touted everywhere you look. Or you can choose to live your life, with the knowledge that your child has SMA, and do whatever you can to ensure that your child enjoys life to the fullest extent. Go to the beach, the library, Disney World, a movie, the zoo, the mall. The options are limited only to what you’re willing to try. SMA may limit your child from washing their own face but it does not limit their ability to learn. Your child will absorb every bit of information you throw at them and will understand more than a “normal” child their age ever could. Teach them everything you can. With education, your child can be the scholar, the athlete, the musician, whatever he or she wants to be. They can be anything because you have the courage to believe that anything is possible.<br /><br />Statistics matter not, nor do other people’s opinions. Perhaps the cure is a moment away or maybe a millennium away, it matters not to you. Your child is a part of your life, in this moment. Tomorrow, well that is mystery as of right now, and that is okay. You will take today and make the most of it because, for now, it is the best day ever.MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com9tag:blogger.com,1999:blog-8300236006343884207.post-25381341889186035072010-09-17T14:04:00.006-04:002010-09-17T15:20:55.449-04:00ListenSo yesterday was all about why I blog and Spinal Muscular Atrophy (SMA). Today, I'm killing 2 birds with one stone, so to speak.<br />My friend and Respiratory Therapist (RT), whom I shall refer to as 'A', is giving a presentation to new RTs and asked me to help her by explaining things from a patient's perspective. Easy! But I also think that it is important to share my thoughts on respiratory care and SMA with all of you (who may or may not give a hoot about the subject).<br />I'm kind of a unique case, at least that is what A says about me. I have first hand experience with NonInvasive Ventilation (NIV) and tracheotomies. I successfully used NIV for 13 years and adored the freedom that it afforded me during my formative years. I used a BiPAP machine for about 2 years with a monarch mask. I used it nearly 24/7 and enjoyed a fairly active lifestyle (although Brenda was made into a pack horse; toting my BiPAP, suction machine, Cough Assist, and 2 marine batteries everywhere we went, on her back...and no, she doesn't have any back problems to this day). At age 9, after spinal fusion surgery, I required more ventilation than the BiPAP machines at the time could provide. I was switched, with no problems, to an LP10 ventilator. I learned how to use the vent with a mouthpiece for daytime ventilation and a mask over my nose for nighttime use. I was transitioned to an LTV950 ventilator somewhere around 7th or 8th grade for daytime use only, still using my trusty dinosaur LP10 at night. Just prior to an extended vacation Brenda suggested that I try to use the LTV 950 for sleeping so that we didn't have to bring both ventilators with us on vacation. Not being a huge fan of change, I took quite a bit of convincing but eventually caved and tried it. Suffice to say the LP10 saw it's last night of use ever! I am huge LTV fan and always will be. My NIV system served me well until the beginning of 2008 when I caught the flu and required hospitalization. After recovering from the flu I discovered that any time I was in my wheelchair, my airway would collapse. After trying several hundred techniques to keep me breathing, I decided to have a tracheotomy placed. It was a remedy that allowed me to continue the life I had planned for myself. Getting a trach was definitely an adjustment for everyone in my life but it has allowed me to continue living a great life.<br />A asked me to write about what I think RTs need to know about SMA. First and foremost, I have found that many individuals in the medical profession see the lack of movement that accompanies SMA and assume that a mental disability accompanies it. The exact opposite is generally the case with people, children included, living with SMA. An internet search of SMA may come up with hundreds of thousands of depressing facts that leave people with little hope and even less knowledge. My friend PB recently said it perfectly "SMA.....it is a diagnosis not a prognosis". I know that RTs don't make proclamations about life expectancy but they do support families during some of the most terrifying moments of their lives. So please, know that when you say something in a room with <strong>any </strong>patient, not just SMA, we can hear you.<br />SMA is, overall, an extremely complex condition. It affects breathing, eating, proper digestion, movement, tolerance towards certain amounts and types of nutrition, basically everything. With that knowledge though, know that each individual with SMA is different from the ones you have seen before. Our lungs don't all "play fair" with the same settings, some will have wild heart palpitations after an albueterol treatment and others will calmly settle into a comfortable sleep afterwards, some enjoy a great chest physical therapy session while others will scream for the entire time. We're all different from each other, just like you are different from the individuals sitting around you.<br />I can't possibly tell you everything I know about SMA and respiratory care. But I will leave this with a bit of advice. Listen. That's all you have to do! Listen to your patients and their families, especially the chronically ill ones, they know what works and what doesn't. You have the ability to make a huge difference in the world just by listening.MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com2tag:blogger.com,1999:blog-8300236006343884207.post-48408892016958171032010-09-16T18:29:00.015-04:002010-09-16T20:49:38.923-04:00Spinal Muscular Atrophy Blog PartySince I am new to blogging, I'm not entirely sure what a "blog party" is all about but I like parties, especially when a lot of my friends are attending, so I'll try it.<br />According to the rules of this party, I'm supposed to tell you about Spinal Muscular Atrophy (SMA). I can do that!! If you want a lot of facts and information on SMA, check out <a href="http://www.our-sma-angels.com/roman/about_sma.htm">THIS PAGE </a>that I put on almost all the websites I design (more on that in a bit). What I like to tell children when they ask "what is wrong with you?" or "Mommy, what happened to her?" (for the record, this does NOT offend me but I think I could save that for an entire post) is below.<br />"<em><strong>You have just heard about SMA and are now wondering what that is. SMA is a short way of saying a really long word. SMA stands for Spinal Muscular Atrophy, which is why everyone just says SMA. SMA is like an illness that you can’t catch, so don’t worry. People are born with SMA. Kids with SMA are just like everyone else, they just do things differently. Kids with SMA use wheelchairs to move. Kids with SMA don’t have a lot of muscles. Think about how big your muscles are right now and now imagine what it would be like if you didn’t have any. When you are a baby, you have tiny muscles that don’t work well but they grow bigger as you get older. In kids with SMA their muscles don’t grow. They have little muscles because their muscles didn’t get the message from the brain to grow. Thankfully, the brain isn’t a muscle so kids with SMA are smart and love to talk and laugh and sometimes even tell jokes. Everything you do involves muscles like how you eat, how you move, and even how you talk. Any movement is hard when you have no muscles, so doctors are trying to find a way to make the muscles grow bigger. You can help by raising money to help the doctors find a medicine to help the muscles grow bigger and stronger so that kids with SMA can be just like you."</strong></em><br /><br />I was diagnosed with SMA type at 6 months of age. No one in my family had ever heard of it until I came along. My little sister, Emma, also had SMA but flew to heaven when she was 3 years old. I'm not going to <del>bore</del> enlighten you with the details of my life; I'm saving it for the Lifetime miniseries about my life. ;) But I DO want to tell you about this amazing little community that I am so honored to be a part of.<br /><br />I didn't necessarily want to be a member in this not-so exclusive club but here I sit, currently in my favorite place on earth, my Grandma's home - in "my" room, with a cool breeze blowing in on me. The SMA community is a club and a family with members from all parts of the earth. It houses members from every class, religious belief, gender, political view, and race. I'm proud to be a member of this club...I get to be a part of so many amazing people's lives.<br />By the time I was in my mid teens, I wanted to be more than just a passive member of this club. I wanted to <em>do</em> something, give back, help people and that is exactly what I did. With help from Brenda (see previous post if, by some odd black hole/time warp thing, you have no idea who she is), her family, my family, and friends, we started <a href="http://www.our-sma-angels.com/B4SMA/">B4SMA</a>. <a href="http://www.our-sma-angels.com/B4SMA/">B4SMA</a> is an organization that sends blankets to children, up to age 21, with SMA from around the world. In a little over 5 years we have sent over 800 blankets to countries ranging from Canada to Japan, South Africa to Iceland, Solvenia to Brazil, and of course many other countries including the United States. It is a very rewarding venture and we will continue to do it until a cure is found.<br />Unfortunately I was still yearning to do more...but what? I mean, as a high school junior, I didn't have money, I didn't have connections, I didn't have a career. But I did have a computer and creativity yearning to be let loose on the world. My dear friend, Laura, ran an organization called <a href="http://www.our-sma-angels.com/">Our SMA Angels</a> that provided web space to families dealing with SMA. The web space was free and unlimited. Laura created <a href="http://www.our-sma-angels.com/">Our SMA Angels</a> in honor and memory of her sons, <a href="http://www.our-sma-angels.com/devon">Devon</a> & <a href="http://www.our-sma-angels.com/Sidney">Sidney</a>. I wanted to help her continue this amazing work and, after a bit of pushing (the tenacity for which most certainly came from my mother), she allowed to me be a part of her previously one-woman team. Since then, I have become the head designer on new websites and also help with upkeep of older ones. None of that would be possible without Brenda and my (sorry, falling back to my middle school days) BFF, Kim J. Kim helps update older websites and walked me through my earliest frustrations with FrontPage. She, too, has earned a post all about her, eventually. My creativity comes naturally from my extraordinarily artistic father, who is the visual manager at a place that could easily be described as a child's wonderland. He is fantastic at his job and, although we are creatively very different from each other, always praises me on my work. He's my dad, he has to. I'm not entirely sure how many sites I have designed/updated/maintain but I <em>think </em>it is close to 90.<br />For me, however, enough is never quite enough when it comes to helping others. My creative energy wanted more and more! I couldn't really find a suitable outlet for the wants and desires...Enter Shelle, mom to <a href="http://www.our-sma-angels.com/logibear/">Logan</a>. I can't begin to describe what <a href="http://www.our-sma-angels.com/logibear/">Logan</a> means to me in this already too long post, so you will have to wait. Anyway, Shelle said that they were needing T-shirts for a fundraiser and wanted to know if I could do that. Umm, sure? I mean I could try. It was so much fun that I created a store at <a href="http://www.cafepress.com/b4sma">CaféPress</a> and recently expanded to <a href="http://www.zazzle.com/b4sma_kids">Zazzle</a>.<br />My latest, although I've been doing it for a little over 3 years now, venture is <a href="http://www.onetruemedia.com/my_shared?z=c24b35384cf9961370304&utm_source=otm&utm_medium=text_url">making videos</a>. It is my latest and greatest passion...for now. I make videos for SMA families mostly but I have made a few about myself and my family.<br />For now this fills up my time but I'm certain that in time I will want to do more. Perhaps a book or something...Who knows what lies in my future but I am certain of one thing, I will be a member of this community until the community is no more.<br /><br />Want to know more about SMA?? Watch this!<br /><br /><div><embed height="526" name="FLVPlayer" type="application/x-shockwave-flash" pluginspage="http://www.macromedia.com/go/getflashplayer" width="600" src="http://www.onetruemedia.com/share_view_player?p=" quality="high" scale="noscale" wmode="transparent" salign="LT" flashvars="&p=babbd8f8a0976f05bf8fe3&skin_id=1604&host=http://www.onetruemedia.com&autoPlay=1"></embed> </div>MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com2tag:blogger.com,1999:blog-8300236006343884207.post-26377513573671709042010-09-16T15:44:00.000-04:002010-09-16T16:19:37.761-04:00My First PostThe title of this post is oh-so original, don't you think? Anyway, most of you (actually I'm hoping ALL of you) know me, at least a little. I'm 22 and already have a bazillion other websites that I don't keep up with, so let's add another.<br />This blog, I'm hoping, is going to be the start of a new chapter in my life. This past year has been a roller coasters ride of changes for me and I decided that, although I despise great changes, I would do my best to embrace my new life.<br />I'm not going to back track today and tell you my life story (mostly because it is nearly 4pm and I have other things I need to do today) but maybe a bit of history may help you understand me and my ever-changing world. At 22, I am currently in the process of moving home to live with my father, stepmother, and chauffeur/chef/maid/laundress/nurse/confidant/24/7 companion, Brenda. I am nearly finished with my BS degree in Rehabilitation Services and SO thrilled to be nearly done. I have lived away from home for 4 years and this is bound to be the topic of many later blog posts.<br />Besides the recent upheaval that has torn through my "mundane" everyday life, I wanted to start a blog to write...write about anything and everything, truth or fiction, what bothers me, why I own hundreds of pairs of shoelaces but never wear shoes, what big-eyed beautiful child recently captured my heart, etc. I have always been a very creative person; making up characters and stories has been a passion of mine since I was very young. On many Saturday afternoons in the early to mid 1990s you could almost always find me at the kitchen table, with my best friend, Janet, making up elaborate stories to be acted out by my Barbie dolls. Somewhere around 3rd grade I developed a passion for writing fiction, declaring to anyone and everyone that I was going to be a children's book author when I grew up. I spent most of 3rd grade in the den of our home, being homeschooled by some of my favorite adults. I devoured everything but my favorite part of the day was daily journal exercises. My in-school 3rd grade teacher didn't know what to prompt me with for journals so Brenda found books with prompts that not only amused my little 3rd grade mind but also challenged it to write and think.<br />By getting into a blog I want to get back to that. I have been writing research papers and essays, defending my position on a topic, criticizing or commending the work of others for the past four years. I want to remember why writing is fun and enjoyable!MJhttp://www.blogger.com/profile/07142799885571669726noreply@blogger.com2