This post is going to cover a longer period of time. About 1 year to be exact.
Prematurity:
Our plan on arriving home was shaped by a class at Mount Sinai for "parents of premature children" that Ali and I attended (along with Gran and Opa) while James was still in the NICU. The doctor suggested that "despite all of the needs that your child will display that will require a lot of attention due to their prematurity, you need to challenge the developmental milestones just like you would a full term baby. View your child as much as you can as a full term baby and leave the NICU behind you."
This meant that we had to try not to be hyperaware of James' needs, as if he was still hooked up to machines measuring every slight change. We needed to treat him the way that other babies are treated. Now that said, we were also instructed to avoid crowds and public spaces with James for the first three months as his immunity capabilities were low. The third trimester, which James skipped, tends to be the time when antibodies are transferred from mother to baby to allow them to fight the wide world of germs. We were also directed to the following over the months ahead:
RSV (Respiratory syncytial virus) shots to protect against respiratory illnesses
ROP (Retinopathy of Prematurity) eye examinations on four different occasions for vision screenings
Follow up appointments with our Pediatricians, Neurologists, GI specialists at Sick Kids
Frequent visits from our Occupational Therapist at home
Frequent visits to our Pediatrician for various needs
It was a hard year, in some respects - dealing with colic and GI issues. Yet James pulled through it all. He was becoming a happy boy, with a full smile and a barrel of laughter waiting to spill from inside him.
Taxes:
To paraphrase Noam Chomsky, who remarks with an amazing irony regarding the popular day of mourning on April 15th in the U.S (tax season). He says
Tax day should be a day of mass celebration. It's the day where we all got together, worked out some plans and programs, and now we're participating to implement them.
Now, I have never lived in the U.S. and won't comment on their situation. However, I can honestly say that paying taxes in Canada means something more to me than it ever has up to this point. Let me explain.
I asked a nurse at Sick Kids what she thought a week in the NICU might cost if our healthcare system was privately funded. She replied (and don't quote me on this, i'm just relaying her estimate) that it would be somewhere around $40,000-50,000 per week. Wow. James had 6 and a half weeks in the NICU. You do the math. I will forever be paying taxes with a spirit of gratitude knowing that my son, and other children experiencing similar medical needs, don't have to live with that debt over their heads.
Good Times:
Here are some fun moments with James throughout the course of the year:
Here is how you are supposed to practice the air guitar...
First Birthday Party:
As the first birthday for James approached, we were struck with the fact that we can actually remember his birth-day. It's funny how none of us remember our own day of birth, but the birth of a child is engrained into our memory. Celebrating his birthday held opposite emotions as we recalled the traumatic way he entered the world. Leading up to this day had many tears, as we faced the painful reality of shifting expectations, the daily grind of the NICU, the countless appointments since arriving home, the sleepless nights and the constant fear of the uncharted waters that lay ahead of us. We remembered what it felt like to be completely at the end of yourself hoping that God would intervene and help the situation. The metaphor of a candle burning in the wind was an image I used to answer the loaded question of "how are you guys doing?". It was as if James was a single candle in the dark, and our hands were cupped around the flame attempting to shelter him from the winds. Taking James to appointments across the city, working on strengthening his core through tummy time, battling through the colic, reflux and GI issues, and supporting him to explore his environment were the ways that we as parents held back the winds and permitted his development.
Celebrating his first birthday was also a moment in time when all his family chose to stop and acknowledge what a beautiful thing life is, and what a gift James is to us all. We celebrated James together. He has a support network around him that lifts him up in love and watching him dig into the cake that Auntie Jay made for him was priceless. Each hand reached out, first with hesitation, and then vigour as he grabbed, ripped, dropped and ate the masterpiece in front of him. He will need the same initiative and stamina in the years to come throughout the various physiotherapies he will attend. James will need to attack them the same way he attacked the cake. We were all so proud of him as we stood around with our phones taking pictures and videos of his exploration. Ali and I had our family each write a letter to James that he will open on his 18th birthday.
