With Rare Disease Day just around the corner, I wanted to share a little of what it's like living with a child with Idic 15/Dup15q Syndrome using photos.
Sometimes the easiest way to describe something is with a
photo. I could write this ridiculously lengthy description of our day-to-day
life, but I can't imagine anyone, including myself, who would want to read it.
But I do want to somehow describe what it's like to live with a child with a
rare condition.
I don't share these photos to gain pity. I really don't want
anyone's pity. I don't share these photos to show how hard and horrible our
life is, because our life is quite the opposite. It's filled with love and
wonder and an appreciation for all things irreplaceable, such as family and
friends. We laugh and smile everyday just like anyone else. We just have a few
more... challenges, than the typical family.
So I share these photos to help others gain an idea of what
it may be like to be in our shoes. To live with the "challenges" we face, and most importantly, to gain awareness of such rare conditions as
Idic 15 Syndrome.
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| 3rd Echocardiogram |
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| 4th or 5th EKG. Can't Remember |
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| Brain MRI |
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| Fighting Infantile Spasms |
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| Research |
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| Always watching her video baby monitor |
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| To help her anxiety in busy public places |
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| Helping her learn how to hold her bottle by giving her something to feel |
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| Hospital stay. fighting a stomach thing |
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| Physical Therapy |
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| More research |
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| She's just cute |
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| Exploring, listening but not looking |
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| Tired girl and Mom |
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| Beautiful day at the park |
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| 5th EEG |
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| More research |
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| Emergency seizure med |
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| More seizure meds |
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| She likes to cross her fingers, don't know why |
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| ALWAYS paying attention to her lungs, I listen to her most nights |
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| Out of all of those photos, these are the only ones that matter |
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| Happy |
Like this a lot. I remember the finger crossing! X
ReplyDeleteWe're right there with you!!!! Thanks for writing!
ReplyDeleteOur "duper" also does the finger crossing. I think it helps ground her, give her sense of stability. Just one of the many little things she does that re-define cuteness. Thanks for your post. Stay strong for the tough moments and savor and enjoy the good moments:)
ReplyDelete