Madison Kayanne Zielinski was born April 4, 2001, at Emmanuel Legacy in Portland, OR. She came 7 weeks early, due to pregnancy complications, and was born a very sick little girl. She contracted bacterial meningitis due to ruptured membranes. There were days in the beginning where we weren't sure she would make it. We sat next to her and held her any chance we got, until finally at almost a month old, she got to come home. We thought our worry was over.
At about 6 months, we noticed things seemed behind. I figured she would catch up, she was just early. Finally at about a year, and with her at only 12 lbs due to major feeding issues, we got the diagnosis of athetoid hypotonic cerebral palsy. I was in denial, as I think we all were for awhile. I figured she/we would overcome this, she could kick it. I had no clue what it was, just knew it wasn't going to change the perception of what my first child, my perfect baby, was going to be. I read and studied, and learned everything I could about it. She had therapy, many dr appts, and slowly it all became very real. And it wasn't going away.
Having a disabled child has taught me so much. There are days that are so hard, and days that are easy. Some days I secretly cry, and some days it isn't so secretive. It is true, she will never walk, never talk, she will never write her name, I will never see her walk down the aisle, she will never make me a grandma, I will never hear her say "I love you Mom." I am not a pessimist, I am a realist, and these are things that took me years and years to admit, and to say out loud. However, I WILL hear her laugh, I WILL see her smile at me, she WILL frustrate me like any other child, I WILL watch her be silly, I WILL give her everything I have in me, and let her continue to show me what it is like to love someone unconditionally. I will be amazed every day at the strength she has given me, that I have forced myself to find deep down inside me when I thought I had to give up.
This was started in order to help with this amazing all terrain wheelchair ( http://www.actiontrackchair.com/ ), to get her to the beach, to the woods, to explore things she can't in her standard wheelchair. There are so many pieces of equipment we don't have for her, simply because insurance only covers what they deem "necessary". If there is one thing I have learned, it is that we have an amazing group of friends, relatives, etc, that all care so much for this precious girl. It blows me away sometimes. It actually takes my breath away when I sometimes see how many people "like" a pic of her, or show they care for her.
The cost of the wheelchair with the additions that she would need is about $10,000, maybe a little more. It sounds like a huge amount, but every little bit helps. This thing could get her up hills, over rocks, on the sand, in the dirt, through shallow water, it is awesome! Completely motorized. The good thing is, because she is so small, it will probably work for her for her entire life, with some modifications.
People have asked "Ok, so once you hit your goal, then what if you get more donations?" Well, then it just means that I move on to the next item I would love to have for her. Do you know insurance does not pay for any type of seating? Maddie has no special seats that are comfortable or made for her to sit in. She sits in her wheelchair, lays on her bed, or gets propped up on a couch, etc. They make comfortable seats that are made for these kids, and that are good for their spines, proper positioning, etc. Her bath seat is $550.00, and insurance doesn't cover bathroom equipment. They say it is not "medically necessary". I would like to see them try to bathe a disabled child who is over 4 feet tall and basically like a rag doll without a seat. Not easy. The costs are never ending. That is why this fund was started.
Thank you all from the bottom of my heart, from Maddie. We love you all so very much for any support you have ever given us.
Update--- We did not receive enough for the chair BUT have purchased some other awesome equipment for her! New car seat, a special recliner type seat for kids with special needs, replacement for her bath seat, and still looking for more!!!!!
- Sue DeVault
- Rod Lewis
- Rich Osborn
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