So humor me while I change gears...
Danessa had just turned 2 a few days before Ayden's stroke. In fact, I watch videos from that day and the days that followed and wonder watching Bub's irritability closely. Nessa has always been clingy, very attention driven, but somehow she got lost in the shuffle. In the videos of our kiddos in the early years, when we still took time to record videos that is, she is so innocent and happy. She loves her baby brother and its obvious. If you watch the videos for too long you start getting clips of Ayden laying on the floor with "Do you see that?, Bubba? Come on Bubba, Bubba?". Ayden's epilepsy has been so complicated and hard to diagnose. We like so many other parents relied on video. Before we owned smart phones the camcorder was the only device we could use. The videos tell more than just the story of Bubba's epilepsy. They tell a story about a little girl with adorable curly blonde locks (that she waited two years to grow). They show how quickly Bubba's health stole the spotlight.
We have always tried our best with Danessa, but there is so much she was just too little to understand. When we were pulled away whether it be in an emergency or with lots of weeks of planning, Bean has been sent with our family both blood and beyond. Whether it be with Grandma, Mami, Aunt Julie, or the many others over the years, Bean was taken care of. I guess that is why we just never really thought about how little she understood or understands today. She is older now, and she is trying to figure it all out through pictures and faded memories. She remembers watching the chopper leave the hospital with her brother in it. She gets excited when she sees a seizure herself without us saying a word. When I have said things like, "Well, your brother only has half a brain and he is pretty amazing." she will sometimes ask me to explain and try to understand.
Then came the question afterschool Wednesday, "Mom, what does Ayden have?"
I knew she wanted to talk because she had already started with her serious conversation mode before the question ever came out. She was talking about a book she purchased from the book fair and how it was special because it was kind of about her. Then she said," So seriously mom, does he have Autism?". My answer was a long string of sentences, babbling, stuttering, and way more than she wanted.
WHY? It isn't as simple as a label.
Bub was approved for the Family Support Waiver in September of this year, and since that time I have done all the legwork, papers, meeting, phone calls, and more papers. On a bright note, we may actually start getting to use the waiver by next month for some respite and rec. therapy. Each time I have struggled because the conversation or questionnaire starts with "Tell me about Ayden." or "Primary Diagnosis". The answer has always been hard for me because he doesn't have just one "label". Did he have an ischemic stroke? YES. Does he have sensory processing disorder?YES. Does he have a visual impairment? YES. Does he have cerebral palsy? YES. Is he developmentally delayed? YES. Does he have intractable epilepsy? YES. So what one label is there? What one foundation should we support? The answer is there is not just one, there never has been. It has been a domino effect since it all began almost 7 years ago. I find the answer alway changes depending on the need. For Respite, the individual needs to know that he is a sensory seeker, unaware of his own safety(yep, there is a specific med code for that one!), and has a visual impairment because choking or hitting something because he doesn't see it is much more likely to happen than a shunt failure or seizure. For Rec. therapy his hemiplegia is going to be important, along with visual impairment, and his epilepsy. For new doctors we start at the stroke...it just always changes.
Needless to say my matter of fact 8 year old was not happy with my answer. She wants a label because she is to an age when others ask, she wants to understand, and she even wants to fit into a group. She wanted to just say my brother has Autism so I am like the character in the book. I tried to explain that she is like the character, she loves her brother, things are and will forever be different for her in comparison to her peers. Then we talked about the positives - Her brother will never make fun of her drawings like a real little brother, he will always look up to her, always want to do all she can do. He will always think she is AMAZING.
So what does Ayden have?
He has an incredible big sister.
He has a great sense of humor.
He has a love for life and nature, that everyone should have more of.
He has fun playing in his sister's room for hours, as they have been doing so well this morning.
When we were watching him in that bed, 2 days after the stroke, wondering if he would make it. I told God I just wasn't ready yet. I just wanted my Bub for a little longer. He has given us almost seven years so far. I am so thankful for every day he blesses us with our little boy. He is not the little boy WE had planned, he is not the little brother Nessa wanted, but I can't imagine our life without Bubba. He doesn't need a label. If you know our Bubba, you know he is special, and there is only one...No labels needed.
