Hudson’s cardiology appointment I’ve been dreading for some time finally took place yesterday morning. Little Hudson has been super blessed to have no major Heart issues. (Hudson’s five, has Down syndrome.) 40-60% of children with Down syndrome do have significant congenital Heart issues. Hudson has a very slight back-valve leakage that the cardiologist keeps an eye on. Just in case anything develops. Yesterday was Hudson’s echocardiogram and follow-up cardiology appointment. I was dreading it, but Hudson didn’t care a fig because he wasn’t even aware it was coming. Ignorance is bliss.
First off, there’s a few things you should know about Hudson before I go on.
- He doesn’t like to be touched or talked to if he doesn’t initiate it. Especially from strangers.
- He doesn’t like lying on his back
- He loves throwing things
- He doesn’t like new movies, videos, toys or situations
- He loves throwing thing
- He has major sensory issues
- He’s non-verbal
- Did I mention he loves throwing things?
He’s also very stubborn. (And cute as a button.)
We were running a tad late for the appointment, so I thought better of grabbing the stroller from the back of the car and taking the extra time to set it up. Figured we’d head in quick. That may have been my first mistake. That or running late from the get go. We head in to the outer lobby, and while the check-in girl scans his insurance cards, Hudson breaks free. So I break away after him across the lobby. He doesn’t get too far. This time.
One hand clutches him, the other signs paperwork. We walk a good distance down a long hallway and around a corner for our next check-in at the pediatric specialty department window. Then Hudson bolts again. (Where’s that stroller?) I throw the last answer back over my shoulder, figure I’ll just let him go. He’ll be confined soon enough. He moves at a good clip past two nearly empty specialty department check-in waiting areas and finally makes it to the exit door of the East wing. That’s where I draw the line. At the exit door. By now I can barely see the door they’ll be calling him from. Naturally that’s the exact moment I faintly hear:
In the distance a nurse holds a door open. As quickly as he made it across the expansive waiting areas and half the hospital wing, he now has no interest in returning for his appointment. He sits down hard, plants himself. Thumb in mouth. Refuses to budge. I reach down to pick him up, carry him. His back pack and my purse slung over my right shoulder slide down, land on the floor as I struggle lifting him. The owner of the calling voice comes to the rescue. Whips across the football-sized lobby, past two other departments. She carries the stuff so I can carry the boy. Kindness.
We’re led to a cheerful private room, decorated with children in mind. It’s time for Hudson’s echocardiogram. Most children would be delighted by this room. Not Hudson. There’s a back-lit, round tower in the corner, maybe six feet tall, filled with bubbling water and bright circulating toys. Like a fish aquarium minus the fish. There’s also a ceiling-mounted angled TV. There are toys and videos, etc. Also a bed and ultrasound equipment.
I explain to the tech some of Hudson’s hangups. About the throwing. She’s a little chunky, tells me no worries. Hudson couldn’t throw her if he tried. I remark that we’re both safe on that count, well grounded. We laugh.
I tell her he doesn’t do well with new things. Movies, toys, situations. She smiles. And keeps smiling for the next 15-20 minutes giving Hudson the echocardiogram. Smiles as she’s kicked. Poked. Pushed. Prodded. Smiles as Hudson’s amazingly strong and flexible legs pretzel around the very arm she tries to scan with. He grabs the wand. Grabs her. Hucks the lighted ball she offers. Yells. No pain, just doesn’t like being confined.
And still, she smiles.
I try to hold him back. From rolling off the high bed. From injuring the smiling tech. From injuring himself. He’s a strong little guy. Meanwhile, a full-time Dartmouth children’s specialist does her best to entertain him. She puts a Bob-the-Builder video on the angled TV. That doesn’t go so well. He’s never met Bob before. Then she gets an iPad, starts a Veggietales video. Holds it about two feet away. That goes better, because Hudson has met this Bob, Bob the Tomato before. It goes better ’til he remembers that tech with the slippery wand navigating across his chest. Then he kicks her again.
It’s during these crazy appointments I find myself a little teary. (It’s not obvious. At least I hope not.) It’s not necessarily embarrassment over Hudson’s erratic behavior, though I won’t lie: it’s difficult to handle at times. And it’s not necessarily frustration. I think maybe it’s more of a lack of control over the situation. During these tough appointments I’m reminded of two things:
- That no matter what I say or do, I can’t control Hudson’s next move. Try as I do to make things work, soothe and cajole him… I can’t anticipate how he’ll react in the next new situation. What he’ll do. And I’m coming to the realization that this very possibly might never change. Hudson is not to be reasoned with. If you have a special needs child with sensory issues and difficulty adapting to new situations, you understand exactly where I’m coming from.
- I’m also incredibly overwhelmed by the kindness of the various people that work with Hudson. And that makes me more misty-eyed than anything. The unconditional love and kindness shown to Hudson at every turn.
Finally the echo is over and I breathe a sigh of relief. We move on to another room for Hudson’s work-up. Unfortunately he whacks his funny bone on the doorframe on the way in. It isn’t funny. The kind tech, the one that was kicked, grabbed, prodded and harassed kindly swoops in as his rescuer. He freaks out. More over the stranger factor than the bump. Screams. Yells. Yup.
Next they need a weight. Try to get Hudson to step up on the scale. That doesn’t go so well. He can’t handle the sensory factor of the rubber stripping on the scale he needs to step on. Gingerly touches it with a toe, then refuses. Sits on the floor, plants himself. A nurse races off, gets a large, flat baby scale. Sets it on the floor, spreads a sheet over it, plugs it in. The child specialist starts a new VeggieTales video on the iPad. Sits criss-cross on the floor in front of the scale. Kindness. Hudson happily climbs aboard the scale, sits down. They get what they need. Forty pounds even. (I could’ve told ’em that. I lugged that sack of potatoes in.)
Then it’s time for a blood pressure reading. Hudson doesn’t care for the “hug” they tell him he’s going to get on his bicep. He randomly grabs the cuff off twice, meanwhile glued to Bob the Tomato on the iPad. If the child specialist adjusts the iPad even a millimeter back, Hudson takes both hands, brings it a little closer. Like a millimeter. He might not have many words, but the kid has rules. They finally clip a sensor clamp on his left big toe to get the read. He won’t tolerate it, rips it off. So they transfer it to the right big toe and he’s ok with that. Go figure. They get the reading. Exhale. All this done sitting criss-cross on the floor on a flat metal scale draped with a sheet watching VeggieTales on an iPad in the middle of an exam room.
The last hurdle of the visit is the doctor with the stethoscope. I take a deep breath. She and I talk for a bit while Hudson stays riveted to Larry the Cucumber. He’s happy as a clam. Has forgotten where he is. And I’m guessing the child specialist’s arm is about to break off from holding that iPad just so. Kindness. In a few minutes the cardiologist approaches him on the floor, stethoscope in hand, to hear his Heart. The stethoscope is cold, and at first Hudson pushes it away. Then he lets her listen. No problems. Phew.
Finally it’s time to say goodbye. Hudson’s little nose turns a soft shade of pink. His eyes well up with big tears as the video turns off. Hard to say goodbye to his friends Bob the Tomato and Larry the Cucumber. And let me tell you. The goodbye is every bit as traumatic as the echocardiogram itself.
Sometime during the night last night the humidity dropped sharply. The air is crisp, almost fall-like this morning. Windows open all over the house. Chilly. It’s nearly 6 a.m. before I hear the faint rustling in the living room. Hudson on the sofa in summer jammies, shivering. Chomping on his therapeutic chewy for dear life. He looks so tiny and alone. Can’t tell me he’s cold. I sink in next to him, silently wrap him tightly with both arms. Turn sideways, wrap my legs around him too. A big bear hug. He leans in, snuggles close. Doesn’t move a muscle. For nearly ten minutes we stay that way. I heart this little boy. I drink him in, absorb the silence, love from Hudson. I’ll take these precious, quiet and peaceful moments. Reminded that this world, often scary, difficult and impossible for my little Hudson to understand and navigate, is not his permanent home. Just a stopover on the way to Where there’ll be no more crying, tears or misunderstandings. Where everyone will have an equal number of chromosomes.
If they even have chromosomes there.
I don’t tell you the tough stories for sympathy. Writing is just my way to process the daily chaos. How I communicate, organize my thoughts. Thanks for listening. I’m incredibly thankful for a wonderful encouraging support system. Kind ones who pitch in, check on us. Help when they can. Also a great medical community. Very blessed. Not every family with special needs children has such a great support system. While I wouldn’t trade our journey for the world, it’s not an easy one. Each day (and appointment) brings its own adventure and challenges.
Speaking of appointments, Hudson has an upcoming endocrinology appointment. Involves a blood draw. (Need I say more?) Sure hope I can rope Jon into escorting him. (Though he did take him to the last blood draw…)
And after that?
The big. Bad.
You may also enjoy: Glimpse of Sunshine