Grieving Lost Time

“I did not enjoy Carter as a newborn and yes, I for sure feel like a terrible mother for saying that”


It’s funny; I’ve never been one of those moms who cries at their child’s birthday or milestones or even TV shows about giving birth. Though I certainly can fondly look back on my older two children as babies, I feel like I’ve equally enjoyed all of their years and milestones and don’t long to go back to the days when they were little. However, with Carter I feel like all of those feelings are different. It’s going to sound absolutely crazy but I feel like being hospitalized for 31 days stole something from Carter’s infancy from me that I’ll never get back.


Carter was a handful from the start. He never wanted to be put down, he didn’t sleep easily and never took long-enough naps. He was always crabby and nothing settled him down. Not many family members even wanted to attempt to hold him because all he ever did was cry. Obviously, we now know why his infancy was so difficult, but I feel like I spent all of his newborn days very stressed out and overwhelmed. I did not enjoy Carter as a newborn and yes, I for sure feel like a terrible mother for saying that. He made me feel like a first time mom all over again; clueless, at the very least.


But it all changed when he got diagnosed. Once the Neonatal Diabetes was identified and Carter got the insulin he so desperately needed to help control his blood sugar, he was like a new baby. However, I didn’t get to take said “new baby” back home and enjoy my now-happy infant. We remained hospitalized while we titrated Carter’s insulin doses and fought insurance for a CGM and a pump. So everyone in the hospital got to enjoy happy-go-lucky Carter. Everyone on Carter’s care team got to see him pull himself up in his crib for the first time, sit on his own, and even attempt to crawl for the first time. None of those moments were precious family moments that we got to experience together. They were all during an excruciatingly stressful time where I longed to be home and yearned to see my other 2 kids for more than a few hours at a time in a hospital room.


When we did finally come back home, it was the beginning of December; the day before my oldest son’s birthday, to be exact. I had fought tooth and nail to be discharged for my son’s birthday and birthday party, which I’d coordinated from our hospital room at Boston Children’s Hospital. Carter was in a totally new size of clothing. All the size 6 month clothing I’d been preparing for Carter to wear pre-hospitalization were now too small- an entire size of clothing he never got to wear. His wardrobe at 6 months old instead consisted of 2 packs of onesies we’d bought on a Target outing one afternoon. He couldn’t wear the cute one piece pajamas or even pants because of all the monitors he was hooked up to and devices he now had on his body.  My favorite pieces of infant clothing have always been the sleep & plays; they are so comfy and cute and Carter couldn’t even wear them, even if I did have them in his size.


Now that Carter’s first birthday is coming up, for the first time ever since beginning motherhood, it makes me want to cry. I feel like his disease stole pieces of his infancy from me that I’ll never get back. We never got to sit and play on the floor with his siblings in his pre-crawling stage. Some of my fondest memories of Corey and Hayley are when, before they could crawl, we just got to sit on the floor and roll balls back and forth or build a tower with blocks. They couldn’t quite crawl yet, but they still had that super social personality which made them incredibly enjoyable pre-mobile stage. That entire stage was robbed from me because we spent that stage in the hospital. Hell, Carter’s first Thanksgiving was spent in a hospital room, with his carb-intake carefully being monitored. There was no turkey or potatoes or the tiniest bite of apple or pumpkin pie for him to enjoy. He sat in his crib watching Mickey Mouse Clubhouse, away from his siblings and all of his family. My heart breaks for him and I am thankful he won’t actually remember what his first Thanksgiving entailed.


I have a lot to be grateful for, I know. The most important, of course, being that Carter is still here with us to enjoy his upcoming birthday nuptials. I thank God, my mother and my father-in-law in heaven every single day for watching over Carter and keeping him here with us. But all of these thoughts about why I’m such an emotional mess when thinking about Carter’s first birthday just keep weaving themselves into the forefront of my brain. I just wish I’d gotten to enjoy my happy baby at home and that I didn’t feel like I missed out on the “good parts” of his infancy. Yes, I saw all these milestones and the long-awaited emergence of his happiness right there with him. In the hospital, I spent all 31 of those days with Carter. I am grateful I didn’t have to go home and leave Carter’s care to nurses; I had the support from my husband and family to focus on Carter while they took care of our other 2. I don’t want to sound like I’m complaining, I just needed to get these thoughts out of my head. T1 stole parts of Carter’s early life from me and changed our entire world. But I am letting go and moving forward with optimism and pride.


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