From the Heart
My son Caelen, who is now 10, was born 5 weeks premature. I remember his mom complaining of discomfort, but thinking it was only Braxton Hicks (contractions that don’t indicate true labor). After 10 minutes of her lying down, I was called to the bedroom. “I think the baby is coming”, was all I remember her saying. We called our midwife who told us she would be taking a shower then head on over. After only a few minutes we were in the bathroom, and not even 10 minutes later, I delivered my second son. He seemed healthy, but was eerily quiet as he lay peacefully on her chest. I even remember leaning in to hear if he was breathing, as he was so still.
Our midwife showed up soon after, and did the usual post-birth checkup. I remember her calling me into the bedroom to tell us the news together, “Caelen has down syndrome”. His mom began weeping soon after the initial shock wore off. I was unprepared, as well for such a divergence from what I had expected. I was dismayed as the realization of this left turn in life sank into my consciousness. My older son was a happy and healthy kid, and I felt comfortable with the known challenges of parenting an infant/toddler. How would this be, what did it mean, what new challenges were in store for us?
My son was born at 10:37pm on Christmas eve. That was, by far, the most surreal Christmas of my life. I remember Caelen’s mom just holding him and weeping throughout the day. Looking back on it, I felt I had to be strong emotionally as she let herself grieve. I’m sure I was also in some state of denial about the whole thing, not ready to accept what was.
I don’t remember ever being sad about Caelen’s condition. I didn’t necessarily frame it as a, “bad thing”. We learned that Downs kids can have a range of physical symptoms, many having heart complications. We were thrilled to find that Caelen’s health seemed way above average for a typical kid like him, no signs of heart issues. He had good musculature (rare for Downs kiddos) and seemed fairly alert and responsive. We raised him no differently than his older brother until he reached about 7 months old.
Around that age he developed a phlegmy cough that just would not subside. After much back and forth to doctors, it was discovered the Caelen was struggling with aspiration. His epiglottis had a weakened tone, and when he was drinking breast milk, some of it would invariably drip into his lungs. There, the milk would create a minor infection (in a few cases pneumonia). We also discovered he had acid reflux, which exacerbated the problem by creating times when he would aspirate on his own acidic regurgitation.
As a response to this condition, his mom and I created a thickened (thick enough to avoid aspiration) milk formula that contained multiple herbal supplements for treating his acid reflux and overall development. Every week we concocted a batch in a huge pot so he could get the nutrients he required. Every 18 months or so, we would have him checked out via a video x-ray to monitor the aspiration. This particular test exposes someone to a large dose of radiation at one time, so it was not recommended to test any more frequently. After the third one of these scans, the doctors informed us that due to the lack of progress with his epiglottal tone, we should always expect to feed him thickened liquids. This means no water, let alone juices, etc. We did our best to accept this prophetic reality, and kept him to only thickened liquids. Wherever we went, he had to have his own supply of special milk that was practically a meal.
Since that time, his mom and I have divorced and I have re-married. We share custody of the boys, every weekend they can be found at our home. Split families come with inherent challenges, and we certainly have our fair share. All in all, however, the boys get lots of love from all sides.
About two years ago, my wife noticed that Caelen’s milk from his mom was getting thinner and thinner. He didn’t seem to be having any reaction to a liquid that was close to water consistency. I was hesitant at first, but she convinced me we should try giving him a little water at a time to see how he dealt with it. We kept giving more and more with no adverse reaction. Lo and behold, he seemed over it! Halleluhiah!! I can’t tell you what a game changer it has been, the freedom it opened up when this shift happened was remarkable. We felt like a slave to his milk, and now that it’s not necessary, he’s that much closer to living a healthy life.
Caelen’s main struggle now is communication. We saw at an early age he was delayed in his verbal development. What we couldn’t predict, however, was that at 10 years old, he still isn’t speaking. He’s received lots of help from different approaches, but his speech abilities are very limited. We’ve been practicing sign language with him, which we all enjoy and get to learn from. He has really improved his sign vocabulary, so on we plod.
When I first started trying (mostly in vain) to predict what the challenges with him would be, I feared my own reaction to someone expressing judgement towards his condition. I played out minor imaginings of me laying into some ignorant person who dared to criticize or dismiss my son based on preconceptions and their own lack of awareness. I’m a very peaceful guy, but I feared my protective reaction may get the better of me. I’m happy to say, it has never happened. Nine times out of ten, people who see Caelen are simply charmed. He has no concern around what others may think of him, so he is free to express exactly what he feels in the moment (which is usually joy). He is selective regarding who he engages with, but if you’re one of the lucky ones, he is totally open and unafraid. There is no hiding in him, no masks. I under estimated humanity on that one, and I now formally apologize for selling us short.
But enough of all this heaviness. I would be remiss in excluding the most important details of Mr. Caelen. He is an incredibly joyful person. He has a fantastic sense of humor, and can light up a room with ease. Now that there aren’t the concerns around aspiration, we have more freedom in the pool (an element he never wants to part from once immersed). Lucky for us, his grandparents have a pool, and this summer he was in it constantly throughout our two week vacation there.
You see, Caelen is all heart. He teaches me and everyone around him, what it means to operate from this space. The joy that he is, emanates from his entire body, day in and day out. He gifts the world with his light, unabashedly. He has been, and continues to be, one of my greatest teachers in this life. He reminds me what is truly important, what is truly sacred; that we all are, and require, love. We are here to give and receive it, to create from it, and to remember that it is always available. Thank you Caelen, and all who I’ve shared love with, I am forever blessed.