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Sunday, May 19, 2013

One day at a time

In a few weeks I'm heading over to Children's hospital for a sleep study on our littlest daughter who was recently there for other testing. Before that, this week she's having an EEG. Which is a electroencephalogram to detect abnormalities of the brain. (Detecting seizures) We are 100% sure she's having seizures that effect her daily living. The sleep study is interesting. For the next couple of weeks I'm documenting her sleeping, her awake periods, down times extra. At first I thought I can do this while remembering getting up at night. By the next morning I have no idea when I awoke during the night, let alone to document. So now my best friend is next to my pillow. Take your eyes off of pooh bear, it's my little pad of paper and marker. Funny, I came out with my written times from last night - it was a understandable scribble. The purpose of the sleep study and the EEG is to hopefully detect when the seizures are happening, how it's affecting our daughter and coming to a conclusion on how it will be addressed. Is there a pattern? During a sleep study they monitor brain activity, eye movement, muscle tone, and heart rhythm. As her mother I know when she's had a significant seizure where it affects her week. It's like stepping back 3-4 steps, starting over in a glaze of unknowns. Raising a child with complex needs isn't easy although you start to adapt, seizures becomes a just moves on accordingly and you never know one day to the next how it's going to be but you accept nonetheless. (It's life as we know it) It becomes "ok" I was talking recently with another parent that is worried about feeding tubes. I know how they feel. When you're approached and told that your child needs to be on a feeding tube, it's disheartening because you feel like you've failed. You didn't meet your child's needs. Everyone goes through a grieving process. I know when our daughter eventually is on a feeding tube, it's going to relieve most of our stress. 24/7 we maintain her diet. That is not only stressful and frustrating, it's time consuming. With a feeding tube, at least you know your child is getting all the nutrients daily that they need. I know this is in our future too, when is the question. Another woman mentioned something to me the other day.....she said, "Your daughter's life will be shorter then most" I was silent. I didn't know how to respond at that exact moment. The conversation was left at that - silence. When I gave myself sometime to think about it - I understand where she was coming from. My daughter with a compromised immune system, seizures, eating difficulties extra.....of course her life could be compromised too. It could. Should I be thinking this way? NO. This is where some peoples' minds are very narrow. I don't believe in limiting a persons ability to live and to experience. I do not believe in believing that life can not survive any challenge because we all have will. We can live, and at least to our fullest potential. I'm a mother that isn't naive although I'm a mother that wants quality and has hope that we all live to the best of our abilities for as long as possible. And our daughter will while happily experiencing absolutely everything. During our documentation and testing hopefully revealing some answers, we are having good times. There is no stopping our family, there is no stopping our daughter because she has the will to "Go go go" as she yells it! And that's exactly what shes going to get. A life of mobility, quality and full of endless experiences. When the bumps in the road arise, we will keep moving forward taking one day at a time. For now, my pooh bear, pad of paper and my daughter is my company at night while remembering, "Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life; define yourself" And remember to just take one day at a time.

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