As I have mentioned in the past, Judah’s extra chromosome comes with lots of extra love and a little extra worry. It is necessary for him to see many specialists at this stage in his life….just to make sure his “issues” are being good little issues and are doing what they’re told. These visits will become less frequent as Judah grows and my heart will beat a little easier I’m sure….but, for now, we have stuff. Some of the doctors we have frequented include: an eye doctor, which we are due for again shortly. We’ve seen one specialist for his heart, one for his thyroid, and one for his bones and joints. He has been to an ENT a few times already as well as a hearing specialist. Judah has services such as speech, PT, special education services, vision and we will be adding OT in June. We have had Judah monitored for leukemia and as of late he saw a geneticist and developmental specialist . I find it fascinating that it took us over a year to get him into these last two specialists. I mean it’s right up there with trying to get tickets to The Masters. Look, I am not telling you these things because I want your pity. Please… on the contrary. There are mounds of attention being lavished on our son. They are watching with keen awareness, and carefully adjusting for his needs. Honestly, I wish we could all be taken care of so completely.
Instead I tell you all of this to explain. God knows, before I had Judah I was completely oblivious to all the medical attention children with special needs get. In retrospect it is called special needs; it makes total sense. I was not aware of how many doctors we would await news from; How many times we would hold our breath. When Judah was sick at 20 days old and rushed to Galisano’s in an ambulance, I met trauma. I had my first encounter with, scare -the -shit- out -of -you,trauma…and now I am skittish of white lab coats, I cringe at scrubs. And every time we head to an appointment I hope and I pray to God for the best….but I prepare for the worst. I pray for the doctors and put my faith into all the “could’s” out there in the world. I know one day we could get life altering news and I am ready to not crumble. My armor has been fitted and is stored in the corner of my closet.
And just something else I need to ramble about, because well, I’m in the know now and I cannot unknow it….I mention this stuff about Judah but he is not medically fragile. His heart has no holes, he has no issues holding down food or getting around. He is delayed. He is doing it, however, he’s doing it when his body is ready. That being said, can we please pause a minute? Can we think and really send vibes to the parents with delicate children? To those momma and poppa bears who live through extended hospital visits, who get more bad news than good news, who live in constant fear of lights and buzzers, who know at any moment they may get the worst news. I mean these parents; let’s applaud their strength, send them more, and recognize the drop in the bucket that is our hardship. Let us really, really get what goes on outside our own anxiety and fears. My issues are very real to me and I recognize that; but I am also very careful to acknowledge how I am lucky , and it makes me stronger. These parents make me stronger.
Let me just wipe my eyes a moment and move onward…. The day of Judah’s back to back genetics and developmental appointments, I had Bobby come with me. I was wearing my accompanying anxiety and it was too heavy of a burden to wear alone. We rolled in to the usual fawning and fussing that happens whenever prince Judah arrives. They don’t tell you that in the pamphlets, by the way. The clinical pamphlets that they hand you when they tell you your son most likely has Down syndrome? Nowhere does it say how people will pluck your baby right out of your arms and play with him…. Or that he has the ability to captivate souls with some kind of magic!!!
Anyway, our first appointment was to the developmental Doctor dujour and he watched. He witnessed, he questioned, commented and more than a few times he chuckled at our little Bub. After some out- of- the- room deliberation he returned with “the news.” Judah was doing fabulous. In fact the doc even told us that Judah was not too far behind typical kiddos of his age. I’m not sure why this make me shine so? I mean would I not be just as crazy about my baby if he was struggling to keep up?
Off to the geneticist next which was a short trip down the hall. Immediately he inspected and symbiotically my heartbeat quickened. He looked at Judah’s pudgy little hands, his slanted eyes, his slightly lowered ears and declared: “yup, he has all of the typical Down syndrome markers.” I was not sure I liked where this was headed. In fact, I wasn’t at all sure where this was headed? We weren’t here for confirmation. We’ve long since sailed past confirmation into the waters of acceptance and enlightenment. I was curious though, so I asked: “Judah’s pediatrician said he could have mosaic Down syndrome ( a type of Down syndrome that usually doesn’t affect all of the cells) because of his stature, not that it matters ,but does he?” To which the good doctor replied: ” no, he has trisomy 21 and there are degrees of severity with Down syndrome. Judah’s may be more mild, but he will be delayed , he will probably need a one on one aid in school”…..RRRRRRRRRTTT( the sound of screeching brakes) what did he just say? Cue ninja kick to gut, blurry vision, head swirling. I could think of nothing else at this point. In fact, I am not even sure these are the exact words that came from his mouth, but this is what I heard. I mean how could the doctor say this? Didn’t the last doctor deem my child a medical miracle? (Not really, )but of course, that is what this beaming matriarch heard. Selective hearing at its finest on this day!
Of course this is the part where I started questioning everything. Why was I in angst over this one little comment that wasn’t even that bad? Was I still in denial? Did I accept my son only with stipulations? What if he was born with Down syndrome and was on the more severe side? Did I indeed love my son unconditionally?
I am pretty tough on me in general. My humor is of the self deprecating kind and Bobby has to remind me on more than a few occasions to be nice to myself. Call it self esteem issues or Catholic guilt or perfectionism but I’m pretty aware of my faults. I know that before I think things through I first wonder if I am a terrible person. So,before I handed myself the worst mother ever award and called CPS on myself for not loving my baby enough I paused. I dug. And I came up with a logical reason for my useless distress…
I am not in denial. I am optimistic. I always have been. I think I’ve mentioned this before, but I was voted “Most Optimistic” my senior year…and Judah is at the age still where I am allowed to be almost unrealistically so. Possibilities dance above his crib like a mobile and hope streams through his curtains. The reality is that Judah could always have a one-to-one aid and we could have lifelong roommate. OR he could be the first astronaut with Down syndrome (or more likely the first WWE wrestler.) I have to accept that, like all children, we just don’t know that yet. My life as a planner ,who fills calendars,.. is over. That is not my path anymore and it’s hard to change….but it is also exciting. I get to watch Judah’s life eloquently unfold before me. I don’t know what a world with Judah in school looks like yet, or teenage Judah or college grad Judah (there I go being all optimistic again) so I prefer to soar with positivity . If my balloon loses a little air along the way, well so it will be. But for now, galaxies are his limit. No matter where we land, I will never stop believing that my son is some kind of miracle. Call it denial, selective hearing or rose colored glasses. But I prefer to call it unconditional love.