Ever wonder what your 9 year old daughter is thinking? Has she ever gone away for a weekend leaving you longing to hear her voice again? Have you ever wondered what really made her smile?
Ever think back about when she was an infant, the way she made eye contact with you while you fed her? Do you remember how you felt when she first uttered those first precious words, mama and dada? And how about that time she giggled herself silly over something you did. Those moments are so fleeting, but it feels so good to look back and remember those things, those moments that stopped your breath.
Those simple milestones come easy to so many babies, just like breathing, but not every one is so lucky.
My daughter had her first seizure not long after her umbilical cord fell out. Eye contact with her is rare at the least. We never got to see her reach for a toy let alone sit and crawl. Watching her walk is something saved for our dreams only. And her voice. Oh her voice. How we would do anything to hear that voice of hers form one word. Just one word. Just once. Most cannot imagine a world where their child is silent. For us it is our greatest hurt. We know stuck in a body that refuses to work with her is a smart girl. A typical 9 year old girl who is stuck, a 9 year old girl that has to rely on her parents for picking out the right outfit for her, each time she eats they make that choice of what she eats. Every television show, every place she goes. Every movie she sees. She has to sit in her wheelchair as she watches her brother and sister run around the house, feeling excluded because it isn’t always easy to include the sister who seems to pay them no mind. But I know she is there. I talk to her because I know she is there. I ask her if she likes things, because I know she is there.
A beautiful girl. A perfect girl. Our girl. LilyAnna Blu. Made of love, always giving love, living the example of a perfect love.
Some say we were dealt a bad hand. I used to ask what did I do wrong? But we know better. We were given a blessing. An angel to raise for our own. And to use the pain we have from not having the child we expected to make a difference in this world, is a gift from God.
Lily has a rare deletion on her CDKL5 gene causing her to be robbed of many things. For us parents the thing we feel the most robbed is her voice. Communicating with your child can be so easily take for granted. Maybe exhausting at times, but when your child has no voice, you dream of never ending “whys”, fights and story telling, because those are the things that make our children who they are. Their voices show us who they are and when that is lost, you are left trying to decide for yourself who she really is.
CDKL5 causes intractable seizures that happen to plague Lily’s every day. Every single day of her life she has had some seizure of some sort. Big, small, it doesn’t mater. Each one causes frustrations for us, her parents, being unable to stop something that constantly is wearing down your child can make a person go mad. Lily has to take 4 medications and be on a strange low carb, high fat diet and she still has seizures several times a day, but that is an actual improvement from where she was. It’s a hard debate what is worse, the seizures or the lack of communication. I am sure no one would like to have to decide.
But instead of crying about what we don’t have, we do cherish what we do have. And we take this hand life dealt us and plan to turn it into something amazing. We have the power to change the future. We have the ability to change the future for this disorder. What if 20 years from now a mom has a baby and that baby is screened and is found to have CDKL5, and an agent is given to that child and that child nor their parents will never even know anything is wrong? This isn’t science fiction; this is something that can happen. That will happen! What we need is support from people like you. People who want to see a change. What if it is your grandchild you could be changing the future for? You never know who will be touched. If you told me at 23 years old that my daughters life would be filled with seizures, specialists, therapists and medications I would have said you were wrong. I thought dance classes, prom and a wedding was the future for my daughter. But because her future isn’t what we planned, I pray the future will be everything a new mom plans and CDKL5 won’t rob them of what it has robbed us.
Please help our cause. Please help us change the future. CDKL5 won’t have a fighting chance against what we can all do!
Join us Saturday February 25th 2012 For Fondue for a Cure in Mesa, AZ!
Plan your own fundraiser! Help out! Change the future!
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