Alden's 5th Birthday

Alden, using his talker, to tell us how old he is today.

It is Alden’s Birthday today.

When I ask him how old he is, he smiles silently and looks up at me, as if it’s a secret that he will never tell. I bend over to assist in navigating his talker to the page that has numbers, buttons zero through nine. Without looking, he points at the three. “Three,” the talker blurts out; and Alden continues to smile. Now I’m unsure if he is trying to joke, or he does not know his age, or he simply does not care to tell me what he does know with his talker. I prompt him to look at his talker. He looks, and pushes the “five.” I praise him, reinforcing his attention to his talker and validating his answer. Five. Five is a big one.

In the weeks after Alden’s diagnosis, I wanted all the information I could gather - in hopes of understanding, controlling, planning. I asked his neurologist, point blank, “What is Alden’s life expectancy?”. She squirmed in her seat, and responded with what she referred to as an, “educated guess amongst a lot of uncertainty.” Alden may between five and twenty five years. What a range, kindergarten through early adulthood, but these things are unpredictable. With our newborn baby in my arms, five years had felt like a lot of time. Honestly, the prospect of carrying Alden all the way to his 5th birthday in many ways had felt daunting. But, with the support of countless individuals, we’ve done it and learned a lot in the process. It has been a tenderizing, soul-expanding five years.

And so, how do you celebrate a 5th birthday? We have attended many birthdays for newly minted five year-olds: pool parties and face paint, gymnastics and pizza and cake. We have swam with Alden, and crawled into the bouncy house with him, and sat with him as his peers sing and eat and run and jump. He enjoys being a part of what he can be a part of; but, it simply did not feel right, this year, to host such an event. Those birthday parties are designed with abled-bodies and verbal communication in mind, not wheelchairs, talkers, and g-tubes. Don’t get me wrong, Alden wants to be invited - we will make it work, and will joyfully celebrate your children. However, on Alden’s birthday - what serves him?

He loves the ceremonious lighting of candles on birthday cakes; but, he cannot blow out candles and he cannot safely eat cake. So, we have a little hand-held fan for him to hold to blow out candles, and I’m hoping the candles I bought will stand up when I push them into a platter of homemade whipped cream later today. He may enjoy eating the whipped cream, he may not; but I’m sure he will squeal when he realizes there are miniature plastic boats floating within the cream. What a joyful mess it will be, at home, with his two siblings, his parents, his care professional, and his dog. We will sing, “Happy Birthday dear Alden, Happy Birthday to you.”

I am too tender this year to host a party that would feature a roomful of Alden’s neurotypical peers. I hope there is a year when that type of event feels right; because celebrating his birthday with his peers would be a fantastic opportunity to represent Alden, despite all his differences, as an equal part of his community with all the typical birthday fanfare. Additionally, I would love the opportunity to celebrate the community that supports us in raising Alden; but this year, we are keeping it intimate.

Alden’s health has been relatively stable. His neurology appointments, which started as monthly check-ins, have now safely spread out to every six months. He takes medications everyday to control seizures, and he has not had a seizure in almost three years. Despite a persistent cough, he made it through last winter with only one pneumonia, and no hospitalizations. And so, we have arrived in the current moment, at the beginning of his fifth year of life, with a sense of fragile vitality. He is playful, kind, curious and hard-working. We are proud of him.

Let’s celebrate!