For those of you who don't know, Bryanna had PDD-NOS - which is a highly functioning form of autism. The majority of the world, friends and community did not know. There was no reason for them to know..it didn't change who she was, it just gave us a title to get her the help she needed, the help that we needed to give her the absolute best chance to be the best, most smartest and accomplished person that she could be. We had very high hopes for this little girl who was so smart and loving. This is who Bryanna was. Bryanna struggled socially, she struggled to make friends, struggled to play with them, played like a horse or puppy on the playground rather than tag and hopscotch, struggled with loud noises...and sometimes any noise...hated to be touched and engaged on her terms. Bryanna was very literal, and often times the cutest most simplest of jokes would not resonate with her (I remember sitting in taco bell with the kids cracking joke after joke and I was the only one laughing). Bryanna needed her instructions broken down, she needed many basic explanations of common sense things that the average child her age already got. The movie HOME was a major hit in my house, because they spoke so literally. It was such an awesome feeling. I understood it. I got it. This is who Bryanna was. This is one of the special things about her that made her so uniquely wonderful. That being said, she was so smart, and caring and made it through every single day with a smile, with a laugh and with love. Through everything that was hard for her, she loved. I mean...seriously...this child LOVED. She showed me what love truly meant - the unconditional, unrelenting, non-judgmental, whole hearted love. Bryanna didn't like to sit and snuggle. She didn't hug much, she didn't like her head to be touched. But she would come and sit with me on these nights, when it was just the two of us eating a little container of ice cream, while the entire house slept. It was in these moments that Bryanna would lean in and snuggle. It was in these moments that she shared her deepest thoughts. It was in these moments that I could see her relax. No stress, no noise, no worries. Just a few minutes with ice cream and me.
Anyone who knows me knows that I am a stickler for routines. I have to be. All three of my kids struggle with transition (though Liam a lot less than Bryanna and Evey). Change is tough for all kids, but for mine...quite a bit more. The word "Common" sense doesn't belong in my dictionary. I have learned by having my amazing kids that there is nothing "common" with the ideas set forth by society, there is nothing common about the minds of young beautiful kids, there is nothing common about being uniquely different and trying to figure out how you fit into this mold called society. Further, this world, this society, these social norms doesn't always make "sense". So really, the word "common sense" is not what I expect to see in my trusty parenting dictionary.
The thing is, having a child (or children) on the spectrum...highly functioning or not, does not mean what I think many people expect it to mean. It doesn't mean loss of love, it doesn't mean loss of family or loss of happiness. On the contrary, I think it means more love, more family and through the struggles, a lot of happiness.
For some reason, we can't find a lot of Bryanna's writings. Writing on random pieces of paper, a journal or in a book was how she relaxed, it was how she focused and centered herself. Yet, for some reason, it appears that she hid a lot of it. We keep finding little bits here and there. In one of the papers I found - Bryanna wrote the most surprising thing. She wrote (and I'm paraphrasing here) ' My mind doesn't work like yours. I don't understand what you understand, I don't see things the same way that you do..'. This paper was connected to a handful of other pages where she wrote one word many many times such as notebook, pencil, dog...and so on. She was playing school and in this little nugget of writing, she was telling us that she did get it. But see, I could see how maybe some might question if we did her a disservice or maybe even an injustice for not telling her...the thing is, she seemed perfectly content and happy. She was trying to find herself, that I'm sure, but what she wrote told us that she was confident with who she was, that she was okay that her mind worked differently, that this is simply who she is. See, I think we as a society underestimate the human mind and the human heart. Yes, she and Evey call people 'humans' instead of 'people'. Yes, Bryanna struggled knowing the days of the week, even at the end of third grade. Yes, she had to have a visual schedule on the wall as well as step by step reminders of what she had to do to get ready for school. But, this wasn't odd, it wasn't weird, it wasn't different...it was just normal. It just was the way it was. Anyone who knew Bryanna saw that she loved life. She may have had her many struggles, but she persevered and she fought through them. She had a strong and beautiful place in the world, in this family. Having a label that many expert clinicians diagnosed her with had no bearings on how she saw the world. Yes - it makes sense that we as society, that we as her parents and her teachers, understood that - but other than that, there was no reason for her to be treated any different than the kids at the park, or her classmates. Yes, we did have to make some concessions for her in some instances, yes, she did need quite time away from the noise, the lights and the people after going on a camp field trip to the circus which she didn't handle well....and many other instances, but she found a way that worked for her. Every day, we as parents learned something new from her. Every day we saw how brave, how strong and how courageous she was. Every day she made us, she made me...so very very proud.
Why am I writing about one of her biggest struggles? A struggle that not many people knew about? I feel like her letter to us talking about how she saw the world different was her way of telling us that's its important for people to know that she was okay being who she was. She was okay being uniquely awesome. She was okay with the world. In the moments that she didn't understand the world, in the moments that she didn't understand why her literal understanding of the most basic thought made sense to her but not a friend...in her literal world - we got her. We understood her. We saw her. We had her back. Always - always and forever. As we always told her...just be you and be awesome!
 |
| Bryanna, Evey, Mike and I embracing the puzzle (Bryanna would have been around 3 and Evey around 1.5 ish) |
April 2 was Autism awareness day - light it up blue. I know that there are mixed feelings about that day from parents across the board. I understand that there are parents struggling with a much tougher place on the spectrum, or with other disabilities. I understand that each person has their own experience and their own feeling about it. Please know that I hear you. I respect what you are saying and I know you have a struggle that no-one knows about. This is not a debate on what autism is or isn't, it isn't a debate on the new and old naming convention of autism, it isn't a debate on severity or who's struggle is more. It's a open armed hug. It is a hug for all the kids and adults...all the parents and grandparents, all the teachers and friends...all the humans having to cope with something that the world says is different. If the world just changed their perspective, then Bryanna would not have been so unique...she would just have been a little girl that did things differently. So with that, I stand with you...every person's struggle is different but through that I hope the world can find acceptance and love.
I also say for the day I see blue on buildings and read the headlines "light it up blue".. every day is a day for something to be celebrated- be it autism, cancer, adhd, down syndrome, lung disease, depression, and the list goes on. It doesn't matter what diagnosis someone may have or not have. Every day is a day to be celebrated. It's a day to celebrate the fact that regardless of the challenge that person is up against, regardless of a diagnosis of a disease or disability, regardless of the severity, ...we should all celebrate the fact that we are living. We should celebrate that we are brave to face each and every day with the challenges that the world presents. We should celebrate that we are strong to get out of bed and get through whatever task is waiting for us that day. We need to celebrate the fact that regardless of ability, we are all 'humans', we are all loved and we all can love regardless of our ability. We should celebrate and go get donuts, chocolate cake or whatever makes you have a moment of happiness, a moment of bliss. There will always be someone who needs to say something...something to bring down that sun, something to stop your world from spinning even for just a moment. Yet, if we look through the eyes of these kids and well...'humans' who see the world differently even if it is just ever so slightly...maybe we could see a different view. Maybe we could see more love. Bryanna kept both her oncology team and ABC team on their toes because she handled treatment differently. She didn't tolerate much of the same things that the other warriors could. Not wanting to be touched changed how examines were, how she responded to pain tolerance and how they assessed her condition at the time. She made them look at the world from her view - made them see things differently. She wouldn't take no for an answer. They saw things differently and adapted to her as much as treatment would allow. They continued to change their views to see through her eyes. They got her. I will forever be grateful and so full of love for her team, many of which I consider to be friends now.
The other day, Evey, Liam and I went to see Bryanna's puppy angel (this is taking the place of her headstone until we can pay it off and have it installed). It's beautiful and very fitting for Bryanna. Liam was wearing his now favorite hat - the hat that was given to Bryanna from a professional boxer that came to visit the kids at hemonc. He wears it to school, he wears it to the park, he wears it to the store and he would wear it to bed if we let him. He loves it because it was Bryanna's hat. So, on this day that we went to see her puppy angel (using the words "cemetery" feels so cold), he decided he wanted to leave his/her hat for her puppy angel. He thought it would make the puppy angel happy. As we were heading to the car, he realized that he really wanted it, he really needed to feel her on him. And still to this day, that hat is his comfort.
 |
| Heading home for Bryanna's one and only field trip home since being admitted at the beginning of August. She was given 4 days to boost her spirits (though not medically ready) and was able to make it 3 days before having to come back to the hospital in the morning of the 3rd day). I look cool as a cucumber here, but I was terrified to bring her home..to have her sit in a car for an hour when she hadn't been able to sit up in bed for more than half hour. Mike was sweating bullets as he was pulling the car around for fear that she would be around someone sick (we were at the ER entrance). But she needed this time. She needed to feel the fresh air on her skin and see the world outside the confines of the hospital. She needed home. |
 |
| This is what heartbreak looks like. This is what love is. |
.
No comments:
Post a Comment