Battles against terminal illness, anxiety, and life!

Dear New Friends,

Like you, we have milked every drop out of summer that we could and marvel at just how fast it went by! While the adventures of summer are winding down, we now get to embark on a new quest known as conquering the first grade! While the lay out of the school is no longer new, the faces in the classroom are. So, I thought I would take a moment to introduce ourselves.

My name is Becky, and I am Braden’s mom. Please just imagine me waving hi to you with a friendly grin! My husband’s name is Justin, and together we have three children, Braden, Genevieve, and Piper. Our children are ages six, four, and nineteen months. Life is never dull around here. We adopted Braden when he was just a few weeks old. So, please don’t be surprised when you find out that the handsome Mr. Braden belongs to some pasty white parents. Ok, so I am far more “pasty” than my husband who tans up rather nicely. Still, you get the point! Our other children came thanks to the help of some talented doctors.

If you click on Braden’s story at the top of this blog, you can read more in depth. However, the nuts and bolts are that this year your child may experience or see things that they will have questions about. I want you to know that we are a very accessible family. You may feel free to call or email me to ask any questions that you may have. I am about to briefly explain Braden’s medical condition, but first I have a favor to ask of you. I ask that you please do not share a few things with your children. Braden’s condition is terminal. There is no cure or treatment. Since we all will die some day, I see no reason to tell him this fact. So, I ask you to not share this with your children either. If Braden is to ever hear this, it should come from his parents. Next week Braden gets fitted for his first power wheelchair. Before the age of ten, he will be using it permanently. He doesn’t know this either. He does know he is getting it. He does understand his body works differently than other children. There is just so much he does know. However, I would hate for him to ask me every day if this is the day his legs will quit working forever. Thank you for your anticipated understanding.

Braden has a rare, progressive, and terminal medical condition called Ataxia-Telangiectasia. That’s A-T for short. It combines all of the symptoms of Muscular Dystrophy, Multiple Sclerosis, Cystic Fibrosis, Cerebral Palsy, cancer, and immune deficiency into one condition. Please don’t panic. I know that is a lot to take in. We discovered this when he was two, almost three, years old. Your children will notice a few things about Braden. I will break them down into bullet points to make this easier.

  • Braden drools. Please know this doesn’t mean he isn’t a smart child, because he very much is. All of his muscles are affected, and that includes the ones that help us control our swallowing. In our house you hear, “Braden swallow,” a lot. Or we touch our cheek and he cleans his face. It’s only a big deal if it is made a big deal. Please let your children know that he is a smart kid and can’t help it.
  • Braden uses a wheelchair to go distances. Right now that chair closely resembles a stroller, and children often equate strollers with babies. However, this isn’t a stroller. It has foot plates. It is lighter weight and easier to transport than a wheelchair. This will change in about six months when his power chair comes in. We explain it like this, “Braden’s legs get tired quickly. So, in order to save as much energy as we can, he gets to ride for a bit.”
  • He has to nap. Braden’s condition causes him serious fatigue. So, he will have a nap written into his day permanently. Again, “Braden needs a rest to get some more energy.” Simple answers work best at this age.
  • Braden has a hard time breathing. We have several machines to assist Braden when he starts to struggle. His lungs produce a whole lot of mucous, but they are weak. He can’t productively cough. His trachea is also soft and flops over on itself. So, he gets mucous plugs and can’t breath. So, breathing emergencies happen. Braden may need to visit the school nurse to get help getting this mucous out.
  • We vomit. Braden’s eyes don’t always do what they are supposed to do. They make jerky movements. Braden’s cerebellum (the balance center of your brain) is degenerating. So, he gets dizzy and vomits. You will be surprised how quickly your kids will become desensitized to this. He gets EXTREMELY embarrassed about throwing up. In our house it is a quick, “You ok Braden?” and he will give a thumbs up or down. Then, our girls move on about their business as does Braden. Dwelling on it is rather embarrassing. It’s important for your children to understand that just because Braden throws up doesn’t mean he is sick. We explain it like this, “Sometimes food just gets stuck or he gets dizzy! That makes him throw up.”
  • Braden’s immune system stinks. I beg you to not send your children to school sick. If your child is the only one not sick in the house, please don’t send them. If you do, shoot me an email and I will keep him home. One case of the flu, bronchitis, or pneumonia can kill him. Not being dramatic, because it is what it is. We would rather just not be stuck camping out at the Children’s Hospital in Birmingham should he catch something nasty. We are frequently asked why we don’t home school then. The answer is many fold. The first is that Braden is a social child. He loves making friends and being a part of the community. Could you imagine living in the bubble of your own home? You have to balance medical care with quality of life.
  • Boogers. It’s like nothing you have ever seen before. Braden has an IgA deficiency (ooooh, aaaahh!) that means his body produces excess mucous. So, it always seems like the kid needs to blow his nose. Many assume incorrectly that I am sending him to school sick. Nope. Trust me, that is impossible. He rides to school with the school nurse on the bus. I am fairly certain that she would notice me sending a sick kid into school. He just gets stuck with the boogers all winter long. (He rides with her due to his compromised ability to breathe. Figured I would answer so you didn’t have to ask.)
  • He has an aide. Braden’s fine and gross motor skills are affected. He has tremors that make his hands shake. He can’t write and so he stamps or uses his communication device. He is academically on grade level. The aide doesn’t do his work for him, but assists him in completing his work. She is his hands, but he is the brains of the operation!
  • He talks funny. It’s one of the first things your children will notice. I always explain it to the kids like this, “Hold your tongue and say your name. Of course it sounds funny. Your tongue can’t properly do its job. Of course you know your own name, how it sounds, how to say it, etc. However, it comes out sounding all kinds of funny! That’s how it is for Braden.” Eventually they will speak Bradenese. You will come into the class and talk to him and may not understand half of what he is saying, but guaranteed your child can translate for you!
  • He really likes to make friends. Encourage your children to extend a hand and be a friend. It will change their life in so many ways. Just remember to never ever pity him or talk down to him. He isn’t allowed to feel sorry for himself in this house. He’s a lucky and very happy little man who is prone to acting bossy and very very SIX.

Looking forward to meeting so many of you and having a wonderful year! Also, you may follow Braden’s adventures on his page on Facebook.

Becky

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