Another face of Ataxia-Telangiectasia

Do you ever wonder just what it feels like to have cancer, to survive a shark attack, or to in our case to raise a terminally ill child? They say curiosity killed the cat, but I am fond of cats and would hate to see harm come of them. So, if I satisfy some curiosity perhaps I will earn some good Karma for safeguarding the future of a few felines. Now if only my child had nine lives! Alas, no such luck. So here is a glimpse into our little lives. I call it my good, the bad, and the ugly post of sorts.

Somewhere in the middle of the night I hear coughing followed by a very loud alarm. Awaking I see that oxygen saturation levels have fallen to 89%. Quickly I shift out of my fog to check that the monitor is in fact securely on Braden’s toe. You have to start with the simplest answer in our world and above all remain calm. Noticing that everything is in fact fine, I turn the alarm system completely off. It is blazing loud and so far Braden is sleeping through my poking and prodding. I use my cell phone to make sure his cough assist device is set to all the correct settings. I whisper in Braden’s ear that we need to use his cougher and he grumbles at me but rolls over. Ten repetitions later I turn back on his monitor. His oxygen seems to have recovered and all is well. He then complains loudly but falls asleep a few minutes later. At least if he is complaining he is breathing, right?

Those are the movement by movement steps. A lot of the time that’s just how things are. We work through the medical steps. Yet there are those times where we have to process what just happened. We have to admit that what just happened was seriously scary. We have to acknowledge that we are worried about messing it up. We have to address those “what if” scenarios. When you put your head back on the pillow you realize for the first time you exhale and let your shoulders fall back down to where they should be. Another crisis was averted, and you force your mind to not go there. That place that wonders what would have happened had you not been there, not been able to fix the problem, had you panicked and kept a clear head. That is a very scary and dangerous place to go.

Morning comes and it is time to get ready. The day starts with changing his pull up. Most of the time he practically sleeps through this. Other times he chooses this moment to rail at the fact that he can’t control his bladder and at the injustice of it since he is six. “Why can’t I wear underwear like everyone else?” he screams. My heart twists but if I show how much this hurts me too he will give in to the injustice and become depressed. So instead I change the subject, tickle him, or give him my best scowly face and ask him to join me in coffee. He always finds that funny since, “Kids don’t drink coffee Mom!”

Before we throw clothes on and get into the routine we must address medical “stuff” first. That’s the cough assist device he uses. Remember that life saver from the middle of the night? Yeah, we do that again. Ten repetitions of that to makes sure that we have a clean enough airway. If oxygen levels read low on the monitor or Braden sounds congested, we will use his nebulizer and then his cough assist. This is one of those you know it when you hear and see it type situations that you can adequately explain to someone. Once we are sure we have enough oxygen, we can go about the business of getting ready to take on the day!

Braden’s ataxia (or wobbliness) makes it a heck of a challenge and pretty much impossible to dress himself. So, just as I do my freshly turned two year old, I dress him head to toe. Then, it is off to make him breakfast. I get him a sippy cup because tremors make it impossible to drink cleanly from a “real cup.” I pour in whole milk with a ton of Carnation Instant Breakfast. We must get in every calorie we can. His feeding tube will be placed soon, and perhaps we can focus on eating for fun instead of agonizing over getting enough calories. I prepare him as much breakfast as he will willingly eat. He remains in bed because he saves his energy for what counts. To get up and play would tire him out before he even makes it to school. After he is done eating his breakfast in bed, I brush his teeth for him. His tremors make even brushing your teeth feel like you are trying to move mountains. Why spend such energy on a menial task? So, I brush for him with fluoride free toothpaste since coordinating a cup, swishing, and spitting isn’t something he can do. He ends up swallowing nearly every time. We then make our way to the living room where I make sure his curly head stays cute curls and not crazy bed head.

On school days, then the school nurse arrives to greet Braden. The two of them ride the bus into school together. If Braden gets a mucous plug as he is prone to do, he must have someone there to act quickly. I am thinking the awesome bus driver and aid appreciate this! So, off they go with his push chair, book bag, and suction machine. Tomorrow will be the first time he takes his motorized wheelchair to school. Is it wrong to think he should have a student driver flag to warn his peers of his newly acquired independence? The suction machine also goes to school and it arrived on the scene after an ambulance ride this year when Braden’s oxygen levels dropped and couldn’t be brought back up through chest physical therapy due to a mucous plug. So, now if that happens we can stick the catheter down his nose and into his esophagus to suck that nasty out and allow him to breathe! As a mother this terrifies me! As a caregiver to him, I am thankful for the life saving equipment. In the beginning I mourned him losing the ability to ride the bus “like a normal kid.” Now, I am just happy to see the bond that he has with the school nurse and to know that this is his normal and that’s ok.

At school, Braden has a one on one aide. She is his hands, his helper, translator, and assistant. We love her to pieces! He is in a regular classroom with his peers. He is a smart kid! He does receive some special education services. He also needs to do his homework at school, because he is simply too tired to do it by the time he gets home. He needs to have some time with his family and some play time too! Braden doesn’t walk the hallways, but is pushed. I think he is looking forward to driving himself. Watch out Creekside! Thankfully he is a good driver! His new wheels will go from motorized to push so that he can go between the two when he fatigues. Speaking of which, he has a nap time built into his day. He will always need a nap. Be jealous if you must!

When he comes home he wants to play for a bit. This is a hard part of the day. It is where I watch how his playing has changed throughout the years. The ability to climb has gone. He now fears climbing as his faith in his body is declining. He worries about falling or making his limbs do what he wants them too. He often grabs a microphone and sings his heart out while standing in the middle of our backyard. The world is his stage at that moment. He isn’t worried about how he is hard to understand, concerned about bumping into people as he loses balance, he is simply a boy singing and being.

My heart often clenches as I think of what he has lost. I try to shove it somewhere to the back and focus on cooking dinner as I watch him through the window. That’s how it often is. I feel like I am watching him through a window, a lens of sorts. I can see how he hurts inside, but I see it through the eyes of his mother. I will never know what it feels like to be in that small body. To know the hurt of a body that is failing. Yet, I know what it feels like to be this mommy. That glimpse of him with his arms pulled up, body twisting in awkward directions, and voice that is beautiful to my ears pulls me to a standstill. I often feel rooted in my position. I am unable to look away. That is my son. This is his life. Emotions begin to roll. I can feel my chest tightening, my eyes sting, and I fight back the urge to cry. It’s just not fair. How? Why? Just no. No. No. No. He doesn’t deserve this! He should grow up like any other kid! My insides scream. Then I take a deep breath. He is here. I look at him. He is out there and happy. He is here today. I hold on to that with all I have. “Cook the dang chicken,” I say to myself. “Focus on making some darn good chicken and focus on what you can control,” I remind myself. Just a small two minute moment of my day, but it is still there as poignant as ever.

We all sit down at the table. Braden will eat part of his meal and then ask for help. I then set my fork down and smile brightly at him, “I was hoping you would ask me that!” I say. I then feed him his dinner. I feed my six year old his dinner. There is no sign of those private emotions from earlier. All he sees is pure love shining through his mother’s eyes. There is no room for pity, sadness, or anything else. He needs me in this moment. I will be right there for him. Whenever he eats, we must be present. He often chokes on his food. It is a disjointed way of swallowing. Getting your tongue to move just the way you want it to and coordinating swallowing is challenging. There is so much that must be done in perfect coordination. With a degenerating brain, it is often hard to get that sequence of events just right. So for safety, he gets attention while he eats. We call this a win-win as we get to have meaningful and fun conversations!

After dinner comes bath time. Braden cannot bathe himself. Firstly and foremost the task is just too tiring after a long day. Secondly, tremors make it tough for him to adequately handle the task. We help him navigate one leg and then the other into the tub where he joyously splashes water all over the place! After the suds are drained, we dry him up, dress him, and get him yet another snack. He burns through those calories fast with extra movements that he cannot control. Afterwards it is another round on the cough assist and time to brush his teeth.  We then snuggle in together for some quality family time reading, watching tv, or just plain talking. It is my absolute favorite part of our day. Those are the moments that fill my heart with such thankfulness that it could just explode. It is also the time of the day when Braden poses those tough questions. “Mommy, why can’t I be like everyone else?” “Why don’t my legs work right?” “Am I going to die?” All I can do in those moments is hope that I don’t totally bungle my answer and do more harm than good. Those are the nights that are hard to sleep. Our little guy has to scale mountains. We are there climbing right beside him though. It breaks our heart that he has to go through so much. It’s just not fair. Life just isn’t fair, and so we try to balance it out with beauty, laughter, and fun. I close my eyes trying to think of our next adventure and not giving A-T a second more of my time or attention. My eyes close and the day starts anew.

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Comments on: "What it’s like to raise a terminally ill child?" (1)

  1. Christine Pieropan said:

    My Dear Becca , your strength is simply breathtaking ! Your support system incredible and your fortress well built . Mr. Braden Winks has the best Mom ( Family ) one could ever wish for ❤ my heart smiles at the pictures you share and the posts you share . Thank you for being you and give them babies big to little a hug from NY 😉

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