Isn’t it interesting how such different personalities can all come from the same bloodline? You’d think we’d follow the paths of those with whom we share our DNA, but that’s not typically the case. We each have distinct personalities, different interests, and unique paths in life. I was anxious in the beginning of this pregnancy, and each day brings a little more ease to those fears. We had our 20-week ultrasound a couple weeks ago. We went to the same office where we received Regan’s prenatal diagnosis (an experience that was less than ideal), so it brought back a lot of memories to walk through those halls again. I’m happy and we are pleased to share that this baby is kicking like crazy and shows all signs of being a typical baby. The most emotional moment came for me when the sonographer zoomed in on this precious heart. I’ve been to a lot of ultrasounds, seen plenty of echocardiograms, and feel confident that I could identify an AV Canal Defect on an ultrasound. With that said, as soon I saw this baby’s little heart, I clearly saw four tiny but distinct chambers, and two correctly-functioning valves (Regan had a big hole right in the middle of her heart that created one common valve instead of two divided valves, so her non-oxygenated and oxygenated blood got all mixed up). This may have been the biggest relief to me in this pregnancy. Regan wouldn’t be who she is without Down syndrome, and I wouldn’t trade that for the world, but I could certainly have lived a life without witnessing heart failure in my baby. So here we are, over halfway to meeting our next little personality and I can’t help but wonder what kind of person this baby will be. Regan’s heart gave us the gift of compassion and patience, what will new baby bring?
I started this blog three weeks ago (WHERE does the time go), and the above was the intent of the message of the blog, but now I also want to share some moments of honesty that happened this week. Being a parent to a child with special needs comes with some occasional additional “attention” (I use quotes because I think EVERY parent experiences this, and I honestly have no comparison as I’m not yet a “typical” mom!). I’ve mentioned before that Regan has more appointments and check-ups than a typical child her age, since Down syndrome runs a higher likelihood of a LOT of random things (that 21st chromosome contains a lot of important genetic information!). SO, where a typical baby sees a pediatrician at regularly scheduled intervals to monitor health, a child with Down syndrome sees a pediatrician and (depending on symptoms and testing) various specialists including ophthalmology (to monitor eyesight), endocrinology (monitors blood counts and thyroid), ENT (all things ears, nose, throat, hearing, etc), cardiology (we’re down to annual visits!), orthopedics (those loose joints can cause some issues), and all types of therapies – physical (gross motor skills), occupational (fine motor skills), speech and feeding (self-explanatory). To put it mildly, it can be EXHAUSTING. I find myself answering what feels like hundreds of questions related to Regan’s development – everything from “is she using utensils to feed herself?” (no) to “can she put on a hat” (umm..yes? does putting a bucket on her head count as a hat?). It’s like a highly emotional job interview where I’m advocating for the most precious gift in my life. I have a goal to be as objective as possible, not overselling her abilities but making myself clear on the milestones she has accomplished.
I had one such meeting yesterday, and as I pulled out of the parking lot I broke down into tears. I can’t pinpoint exactly why, but I can tell you after two long days of appointments as described above I was emotionally spent. The pride I have for Regan just exited my body in the form of tears once I had no words left to share. I hope by sharing this, other parents and others who have gone through similar circumstances can understand that we all go through experiences where we want to shout our pride from the rooftops. It can feel like Regan’s worth is diminished to a question and answer session after which they explain to me where she falls on a typical developmental growth chart. She’ll most likely always be behind on these charts, but my heart knows her worth exceeds a chart that says she’s measuring 12-18 months developmentally. In our lives, she’s surpassed any preconceived notion I had about Down syndrome. Her job isn’t to “prove” the tasks she’s able to do, and that’s not any of our jobs either. Our job is to LOVE LOVE LOVE, and I don’t know anyone who’s done a finer job at that task than our Regan.
I’ve told you so many times you need to write a book. Memoirs of a mother of a child with Downs. It would be a bestseller.
Love, Love, to my special Niece Ragan.