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Coming to Terms with being a mom of a Special Needs Child – Prader-Willi Syndrome Awareness Mo

Thanks to Elri’s mom, Brenda Butler, for sharing this story:

I’m sure we’ve all heard the story “Welcome to Holland” Well, I’m one of those parents who never in my wildest dreams expected to go to Holland. I was on my way to Paris.

But. Here. I. Am.

I’m also sure that all Special Needs parents have heard “It’s only special people that are chosen to have special needs children” and “You won’t be given something you can’t handle.” When deep down I know all those people think “Thank God it’s not me.”

Still. Here. I. Am.

It’s the card life has handed me. A card I know nothing about. And it’s not a card I ever, ever would have chosen for myself. But it’s the hand we got played.

I remember all too well the day the Genetic Specialist came to see us in hospital, she advised us to go see doctor upon doctor, tests, scans, more testes and then the Neurologist. That’s the first time ever I heard the words Prader-Wili Syndrome. I remember everyone telling me not to google it. And for a while I didn’t. But the kids around me (I am a pre-primary school teacher and there is a baby class in our school) were reaching their milestones and here we were stuck in the “floppy-phase”. All the parents around us wanted to know about it and I couldn’t really answer questions. So I googled it and it devastated me. For a while google labeled my child and I was stuck in a hole I thought I would never get out of. I never once felt sorry for myself. I felt sorry for my child. MY CHILD. And for her sister. And for my husband. I love them with all my heart. And I feel about Elri as anyone feels about their child. I love her with all my heart. But the dreams I had for her had died with the diagnosis. But also only for a little while.

As doctor’s appointments, injections and therapies became part of our daily and weekly routine, I started to notice a change in my little Elri. The first milestone she reached was smiling at us. At first I couldn’t believe it! And then there it was again! And again! She started getting stronger, tiny little inch stones at a time, but we could see it. And with each inch stone she reached, the label google placed on my child slowly disappeared. She started to turn her head towards us as we spoke. She started to roll. She started to lift her head. She claps hands and points at her feet, makes eyes at us, plays peek-a-boo and laughs when her sister is being funny! She even sits now and throws her hands in the air when she hears “Hooray!” She eats little pieces of cheese (PIECES!!!) and stands against chairs or tables if we put her there. She is now a year and 5 months old. She still doesn’t crawl or pull herself up and she still doesn’t speak. And I’m okay with that. I learned that Elri is who she is. She doesn’t know how to be anyone or anything else. I am her mother. She is a part of me. A part I can’t live without. AND DON’T WANT TO LIVE WITHOUT. She changed me in so many ways. And I see the influence she has on other grownups daily. Every one she meets loves her!! And we are extremely proud of each milestone she reaches. The pride I feel when she does something new is so much more than you can describe. For a “normal” child, reaching milestones is a given. It will happen. But with a special needs child those milestones aren’t a given. You don’t know when or even IF it will happen, so being able to say that she does all the above can be summed up in one word. GRACE!!!!

I know the road ahead is going to be tough and we don’t know what the future holds for us, but with the right pair of shoes you can climb any obstacle.

Still, here. I. Am

In Holland.

And there is nowhere else I’d rather be.

Prader-Willi Syndrome is a rare genetic condition. A small piece of information on chromosome 15 is damaged or missing. It is not hereditary in most cases and is normally a result of something going wrong at the time of conception. The hypothalamus in the brain is effected resulting in extremely low muscle tone, slow gross motor development, insatiable appetite, impaired cognitive, physical, social and emotional functioning amongst other things.

Brenda Butler and her daughter Elri “Going Orange” for PWS Awareness Day

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