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Tuesday, August 6, 2013

Prader-Willi Syndrome (PWS) - Having someone with special needs in the family...

I'm going to go off the topic a bit from preschool and my kids to talk about my extended family.  This was on my heart last night so, even though I posted something yesterday, I wanted to get it down today while I was thinking about it...

I'm sure some of you have someone in your family that has special needs.  Perhaps you grew up around them, maybe you never saw them, maybe you're very close with them or you are their main caregiver.  Whatever your role is or was, it effects you - positive, negative, whatever - it will effect you.
Seriously, is she not a doll?

I have a niece with special needs.  She is two years old and has PWS.  Thank the Lord, a doctor in the NICU was educated enough on the signs, that he was tipped off immediately and she was diagnosed within the first month of life -from what I understand most PWS kids aren't so lucky.  Because she was diagnosed early, she was able to start receiving growth hormones and other such help very early.
It's not easy hearing such a diagnosis for someone in your family. I can only tell you what I went through when I heard the news - but it was nothing compared to the pain and suffering Adelaide's parents went through.  I went through different stages of denial, grief, anger...and more grief.  I'm not sure any of us are quite to "acceptance" yet.  It's still early.  However, the more time I am blessed to be with her, the closer I come.  Unfortunately, because of the distance between us, we only get to see her a few times a year.  I think the worst part about hearing the news is for one - I couldn't do anything to help my sister.  She was suffering and I was stuck far away.  I could only offer prayer.  And two, the evil thoughts that go through your mind.  You may read this and think I'm crazy - but that would only be because you've never been through it.  One of my first thoughts when she was born was - maybe she won't make it.  It's hard to stomach that now since we know and love this little squirt...but the thought was there.  End the suffering of my sister, make life easier in the future for them...thankfully God understands and forgives such thoughts.  He knows how we hurt and He knows how we deal with hurt.  When the shock wears off and we begin to think normally again, those thoughts go away.  But they were there.

Adelaide had a tube for a while because she wasn't strong enough to suck.  Because she started the hormones early though, she was off of it after I believe 6-9 months. On the plus side, she slept through the night right away because she had the tube ;)
If you haven't heard of PWS (and unless you've studied children with special needs you probably haven't), this is the norm.  She will progress slower than other children.  She will probably start walking this year at 2 years old and she has just started talking (first word was Elmo...too darn cute :)  Eventually, we know, that she will hit a stage in her life where she will no longer have the ability to know that she is full.  She will be hungry all the time.  This means, if allowed, she could literally eat herself to death.  Horrible to think about, more horrible to know that it has happened to some children with PWS.  For the family, this means locked cabinets, locked fridge and locked pantry.  It means a strict diet.  It means that when we get together as a family, our gatherings will no longer be centered around food, but fellowship.  We will have to change for this little girl and we will be happy to do so.  She is an angel and we know God has placed her in our lives.  
she LOVES music and the horsey plays a song :)
The good news for children with PWS is that there are MANY researchers out there looking into why and how this happens.  It's actually trending in our world today because there are many "normal" people out there who want to feel full ALL the time and therefore lose weight.  Crazy, but true :)  Models, actors, the morbidly obese...These researchers are getting very close to pinpointing where exactly in the brain this happens and how to fix it.  That is exciting and gives us hope that Adelaide may have help with this when she gets older.  
To speed along the process, the PWS foundation sponsors a walk every year to raise money for research.  My sister has bravely decided to organize one in her area and has found neighboring businesses to be extremely generous! :)  If you would like to donate to the research for PWS and the walk, you can go to my page and sign up.  It's quick and easy and you could win something as well :)  If you aren't financially able to donate, please say a prayer for Adelaide and her family. The path to acceptance is long and hard, but we will get there.  

To end with...
I worked with prek children with special needs for almost five years.  I didn't have kids at the time and could not have imagined what those parents were going through.  Even after I had children I couldn't really relate...because mine are "normal".  It wasn't until Adelaide was born that I began to see those parents in a different light. 

Me, my kids and Adelaide
 There were four types of parents that I saw - those that really didn't care, those that cared but hadn't accepted it, those that cared and had accepted it; and then those that cared, had accepted it and were advocates for their children.  I saw a fair amount in each group and couldn't understand why they all weren't in the last group.  How could they not be advocates and speak up strongly for their child?  I know now, and I wish I had had this understanding when the parents were in tears during the meetings or when they looked at me with a look of - I just don't know what to do - on their face. It's hard.  It's almost impossible.  My sister is an advocate for her child, and I admire her greatly for that.  

Here is a video of Adelaide that my sister made...enjoy :)  and please donate if you're able.

God bless, 
Laurie