Wow, it's been a LONG time since I've logged on here but I felt compelled to write an update on Ben as a lot has happened since January. We enjoyed a quieter spring relative to our hectic winter. Once Ben was off oxygen finally we had less follow ups and it felt good to just be with our newborn and let live. I adjusted back to work. I’m working the night/weekend shifts now. We participated in the March of Dimes walk on the Brigham NICU team and raised $1500. We enjoyed a vacation to Florida and since then summer has flown by. We are nearing a year already, I can't believe it! Ben continues to be such a happy go lucky baby. He is so sweet. Just an old soul. An angel, really.
The past few weeks have been humbling after Ben had his pediatrician check up and a Neurology appt. While he has made great progress since his tough start he is behind what the usual trajectory is for a 10 month old. His muscle tone (aka Hypotonia) is still very weak and he's unable to bear weight steadily. We are still working on sitting, attempting to crawl, and working on rolling both sides. He tries but it's hard for him to push through sometimes. He will get there just will need to work much harder.
For the first time we heard the words "developmentally delayed" used in the same sentence as Ben. It was upsetting and difficult at first but after that initial shock comes the beginning of acceptance. We learned it's not so much about "catching up" as it is about meeting Ben where he is at. Admittedly, it's really tough at times. Now as he is getting older, you notice where he is behind in comparison to others. You see it at the playground, the pediatrician's office, Facebook, etc. Seeing everyone progress from one milestone to the next is tough at times. Whereas with us, it's more like "inch stones” A mom whose child also has Hypotonia coined it perfectly: “Comparison is the thief of joy.” It’s so true and I’m learning to let it go.
I truly thought we'd have all this in the rear view mirror by now. I thought once the pulmonary hypertension resolved, the thick blood, etc. all would “normalize” and we’d be caught up. Instead we are having more appointments than ever it seems. 2 last week, 3 this week, 4 next week. This month alone we see ear doctor, eye doctor, allergist, speech and swallow therapist, new physical therapist, cardiologist, and geneticist. Coming up he will have another ECHO ultrasound to assess his heart defect (dilated aorta) and praying it’s resolved. We are awaiting to hear back on some genetics tests that might explain Ben's conditions.
With 13 specialists/services following it's a lot, plus working night shifts, plus just being a new parent but we have a good system and thankfully can make it work with help along the way. Since moving to Medford, we are enrolled in a new Early Intervention program. They’re designed to provide services at the house so you're not as burdened with appointments and they also provide resources in the community. We’re hoping to join a playgroup of other infants in the neighborhood with similar type things.
I treasure the light hearted moments...tickles on the bed, playing in the yard with the dogs, playing with a balloon, reading books on my lap, and just being silly. They sustain you and ground you in the more difficult ones. Learning that we will have a different timeline is ok. Everyone in life has different life experiences, so in that we are all the same. For now we will celebrate each “inchstone” and find all the ways to unlock his very best, just like any child. Ben knows nothing of his “delays” he just knows joy, really. He is happy as a clam and at the end of the day, that’s all that matters. A diagnosis can define a lot of things, but it can’t define love. And the cup runneth over for Ben in that department. He is our world and I’m so grateful to be a part of it.
I know this is a REALLY long post but lastly, another mom sent this to me. It really resonated.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.