New York Specialist Adventures, Part 2

Walnuts? That was a terrible threat to the seven-year-old who, while I was laughing my head off in the other room, took it every seriously. He didn’t want to eat walnuts all day in Manhattan. Good thing too because I don’t know how we would have managed to get walnuts all day in Manhattan. It would have been far worse on us than him. The things that come out of your mouth in the frustrating moments of parenting. As it turns out we needed to fall back on the humor from that moment as the day wore on.

Said stinky child did eventually take a shower and had a breakfast consisting of, not walnuts. Then we caught a subway train up to the north end of Manhattan to Morgan Stanley Children’s Hospital.

There are a myriad of hard stories contained within the little person bodies walking, or wheeling, the halls of any given children’s hospital. Morgan Stanley is no different. In fact, I see harder stories in those halls than I do at home, because so many medically complicated kids come from far away to visit the well-known specialists that practice there. Like us, they are looking for hope and healing. As much as I feel out-of-place within those walls–because a Children’s hospital is no where anyone wants to be–I feel it’s exactly where we need to be. No one bats an eye when they see Nathan. They don’t do a double-take on his facial differences. They accept that we are there, just as they are, because we have lots of medical dilemmas to address.

The tests went smoothly and on schedule. Nathan had a repeat ultrasound and a urodyanmics study. Both tests revealed that cathing is the best treatment option for Nathan. The kidney reflux has resolved on the left side as a result of our cathing efforts. The right side, however, still has a grade 5 (the highest) reflux, but it resolves quickly. The right kidney is essentially not working so it’s tempting to think it’s inconsequential; however, it is still at risk for infection. We know that the type of kidney reflux Nathan has can not be fixed by a surgery to repair the ureters, but indeed is because the pressure system of his bladder is shot. He has no muscle contractions in his bladder to push urine out. Therefore, we need to manually do that for him through cathing. We are thrilled that he does not have any further kidney damage and grateful for the ability to relieve his pain by helping him pee. However, we are not thrilled that we need to keep cathing him. (Read: I’m having a really hard time with it.)

I walked out of the hospital in a fresh fog of grief. For Nathan, for myself, my husband and my oldest son. It really wasn’t new news, but it felt fresh all over again. This life is not the life I wanted, any of us wanted. It is filled with medical procedures that we as his caregivers administer day-after-day with no break. Nathan’s life is different. That’s hard for him and hard for us. I can’t figure out how to wrap my head around the next several years. If I go too far down the track to when he is a 25-year-old man, I just want to roll over because I’m so overwhelmed. As it stands, I am just asked to do today. To cath today. To tube feed today. To cook dinner today. To do laundry today. And to find enjoyment in the moments that are light-hearted too. Because they are there, ike Mac jumping across the streets of New York like Elf and my husband threatening to feed our child walnuts all day.

I am beginning to accept there will forever be a haze of grief following me. Some days it is more dense than others. There are days when it is so thick that I just don’t know how to find my way through. Those days I am trying to be more compassionate with myself and letting the feelings be what they are. Sad. Those days I need to focus less on functioning and more on being. Being alone, or with a trusted friend who will bear it with me. There are other days where the sun breaks through the fog and I bask in the gratitude for all that I have in that moment. Not only am I functioning on those days, but I’m thriving and doing things that I enjoy and I’m enjoying others. There are moments I am able to find true joy in spite of the sadness. But the sadness over Nathan’s condition will never, ever fully go away. How could I be so naive to think that it would? In gaining more understanding of that feeling, that sadness, I’m owning it more. I’m allowing it to be part of me, part of my story, regardless of whether others understand it or recognize it.

We got out of the hospital early and decided to make the subway trek all the way down to Soho, the south end of the island. It is no small feat to get a non-ambulatory three-year-old along with all his medical gear, and his curious brother who likes to touch every public surface, on and off the subway, but we did it. Picture me throwing a cumbersome stroller over the ticket turnstile while at the same time, yelling at Mac to stop picking up “treasures” off the ground. Wherever we go, we draw the attention of others.

Subway pic. How we feel before doctor’s appointment.

Subway pic. How we feel after doctor’s appointment.

Soho seemed like the appropriate ending to the day. It holds a special place for my husband and me. We had a tradition of going to Soho together when my parents lived in New Jersey. The first time was when we were dating. We stumbled across a quaint little restaurant that is filled with organic food and a cozy atmosphere. It feels completely serene and out-of-place in NYC. For the next couple of years, following us getting married and visiting my mom and dad, we would always manage to find this little restaurant hidden away in the quaint little neighborhood of Soho. It’s on Spring Street. That’s all we remembered. We found it again on this trip, even though it changed locations. It has always been our place–a place where just the two of us would wander into a good conversation and good food. This time the new location made it feel different and we had the kids in tow, but it was the right way to end the emotionally and physically exhausting day at the doctor. I was able to let go of what was and embrace what is, at least a little bit.

Even in NY, everyone was commenting on how they liked M’s Cub’s shirt.

We found our favorite restaurant on Spring Street.

Nathan got to have a taste of my soup.

He adores his brother. Big brother has no clue how much he loves him.

This quote was passed along from a dear friend of mine, who is on my heart lots lately. It seemed a fitting way to end this post. 

In a fast-paced, complicated, and evermore dangerous world, it is easy to become self-absorbed and consumed with our own problems.  There is one place, however, where we put our self-centered concerns aside, and our deep, common humanity is profoundly touched.  That place is where sick children dwell.    – Dr. Margaret E. Mohrmann   (Professor of Pediatrics at University of Virginia)

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

#medicaltravel #kidneys #reflux #doctorsappointments #Christmas

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