A few months ago, I decided it was time to approach the subject of Holden’s facial difference with my 3 year-old, Everett.
“Ev, do you know that your brother is a little different than the other kids?” I asked him while I was giving him a bath.
He gave me a dirty look, stomped his foot and emphatically stated, “No, Mama, he doesn’t. He. Is. Like. Every. Body. Else.”
Be still my mama heart. What an amazing thing for him to say. I was elated to know that when Everett looks at his brother, he sees no difference between Holden and other children. In many, many ways, I know that he was right about this. If you visited our house on a Saturday, you would find Holden scooting around on toys cars, throwing toddler tantrums and using his first words.
Yet, the truth is that Holden’s syndrome does make his life a little different due to his medical needs and his distinctive appearance. Here is what lies ahead for Holden and our family in 2019 that will make our year unique.
We currently have a war going on at the Smith house which I like to call Holden vs. the CPAP. Holden uses a CPAP machine to treat his obstructive sleep apnea. Apneas are episodes where Holden’s breathing temporarily stops throughout the night due to obstruction caused by his small upper airway. His CPAP machine shoots a constant and intense stream of pressurized air directly into Holden’s nose via a mask. This keeps his upper airway open so he can breathe easier throughout the night.
Understandably, there are some nights Holden isn’t okay with having air forced into his nose and he wakes up and throws incessant, raging screaming fits. If this happens, we consider the battle for that night lost and try again the next day. We desperately hope the CPAP wins the war with Holden because if It doesn’t it could mean a tracheostomy at some point.
Also on the agenda for 2019 is eye surgery. Holden will undergo a short operation to help correct his hypertropia. Hypertropia is a problem with the eye muscles which causes Holden’s left eye to turn upward. This causes the line of vision in his left eye to be higher than the line of vision in his right eye. Because of this Holden tilts his head to the right when he wants to focus on an object. This tilt brings his eyes into alignment and gives him clearer vision.
Holden will also have an MRI and meet with his craniofacial surgeon in 2019. The goal of this MRI is to see if he has developed a Chiari malformation. The simplest explanation of this malformation is that the back of the brain starts to push down into the spinal canal, which can cause many complications, including a build up of fluid on the brain (hydrocephalus). If he has this and it is severe enough, he will need to undergo another cranial vault reconstruction next year. If he doesn’t have the Chiari malformation, we allegedly don’t have to go back to the craniofacial surgeon for 2-3 years.
To add to this, the Smith family also faces an emotionally difficult social journey in the years ahead. Frustratingly, people often stare at Holden and occasionally make remarks about our son’s appearance. Luckily, the boys don’t realize this yet. This gives Sam and I time to build up our arsenal of coping mechanisms so we can help the boys stay strong when they do notice the looks and the comments.
Through all of this, Sam and I find ourselves feeling grateful. We are grateful that Holden is thriving. And we are grateful for our little Everett and his beautiful, innocent ability to remind us that in most ways Holden is just like everybody else.