#nicugrad

We have plenty of photos, photo albums, some of the little diapers and outfits and other assorted baby things in the attic. We even have my trache from when it was removed and I received the scar that goes across my neck. All I have to remember that time in my life are the handful of surgery scars on my body. I’ve always been told that I am a fighter and had so much strength and resilience and honestly I started to get sick of hearing it. I’m 20 and I STILL hear about my strength and resilience from a time in my life that gave me surgery scars to remind me of everything I’ve gone through.

When family friends or extended family tell me how strong and resilient I am , I just want them to see me for who I am today rather than the teeny tiny baby I used to be. It got to the point where I started to invalidate my own feelings and experiences because I went through so many surgeries as a baby and spent the first seven months of my life in the NICU at John’s Hopkins hospital in Maryland. My mental health has been rocky this year nd i’ve been battling depression for the past few months. I went through so many surgeries and only had the scars as souvenirs for surgeries that gave me the chance to see, breathe, speak and have a chance at a normal life despite the extraordinary experiences that brought me into the world and got me this far.

I’ve been battling with my own mental health issues for the last 4 months and experienced suicidal thoughts on a regular basis. I’d tell myself something along the lines of ‘I’ve been in worse situations that were life or death and I’ll get through it.’ I always felt like the strength and resilience people always brought up when I was around was a way for me to put on a brave face and keep my guard up so I can keep the image of the miracle grandbaby that was known as a fighter, an inspiration and a gift from god. It kind of felt like a publicity thing from time to time but my grandma and grandpap didn’t do it for their own egos, they did it to show that miracles can come true and bring incredible, inspiring things into the world.

Now when I see pictures of premies and super premies my heart breaks a little bit. I know what its like to grow up with so many people taking about you and people you didn’t even know were praying for you to survive. I know most people meant well but after hearing a lot of the same stuff for years, I started to feel like a sought after commodity. Honestly, its degrading, and insulting. I was born ten weeks early but that shouldn’t be the only important, defining thing about me. I’m so much more than the tiny 21oz baby that came into the world 10 weeks early in Spring 2002.

I rarely tell people about being premature because I’m 20 years old and a college student. Being referred to as the ‘miracle grandbaby’ lead to me putting unnecessary pressure on myself. My immediate and extended family saw me as a miracle and hearing it countless times growing up, i felt like I had something to live up to, regardless of how old I was, partially because I was my grandpap’s favorite grandkid, and was often referred to as being mature for my age by family members and family friends on both sides. I feel like I grew up fast in a sense that i had the ‘miracle grandbaby’ association following me around from day one. I know some people will always view me as the 1lb 5oz oz miracle baby and I know I won’t be able to change how some people perceive me, which doesn’t really bother me, but I REALLY wish more people would see me as the young adult I’ve become. I’m still treated like a child by my grammy even though I’m 20. She refuses to let go of when I would spend weekends at her house and we’d go out for dinner and a movie. It’s honestly pretty frustrating and she definitely infantilizes me even though I’m a capable young adult now. I can practically hear the tone of voice she’d use when she talks to me. I know people mean well when they say I’m strong and resilient but as I get older it feels more like a backhanded compliment than anything else. I feel like I’ve always had to act stronger than I really felt and had expectations following me around.

My grammy (mom’s side) definitely saw posting and writing about me was a relatively easy way to get attention and she tried to make things all about her while I was clearly uncomfortable sitting on the sidelines as she’d post pictures or write about me for attention. For my 16th birthday I received a ridiculous amount of birthday cards from family friends of hers and people I didn’t even know. It didn’t bother me during the first week but it went on for almost a month. As I kept receiving cards from people I didn’t even know, I became more uncomfortable with the situation. It was clearly about her wanting to show off how many people know about my story and prayed for me as a baby and the fact that she did it knowing that using a milestone birthday to show me how she used my life story to gain sympathy and attention and so many people still wrote to me. she uses me as a topic of conversation to get praise and attention and it’s obvious that she refuses to view me as the young adult i really am and focus on stuff that I have no memory of from 20 years ago. It’s insulting, degrading, and selfish.

I want to be my own person and I know being a super-premie is an important part of my life story, but it happened so long ago and I feel no need to hold on to the months I spent in and out of the hospital, but I take pride in my surgery scars. I’ve always liked my surgery scars and thought they were cool, plus they’re a unique reminders of how far I’ve come in the last 20 years.

F had his 18 month check up yesterday! The doctor said he looks amazing, that he can’t believe how far he has come. The only cause for concern was that he still is not talking much. We mostly just get “Mama”, “Dada”, “Baillll (trying to saying Bailey, our dogs name), and a lot of loud screeches and jabbering. He used to say “baby”, but has stopped now. The doctor doesn’t think it’s a sign of anything else, just that he was born early and needs more time to catch up in that department. When I mentioned F hears two languages at home he said that could be another reason. I am lucky enough to stay home with him and pretty much narrate our entire life to him, ask him lots of questions, and he has always loved being read to. When M gets home he talks to him a lot as well, but in Dutch. If anyone has any tips for working on language skills please feel free to pass them along, I would really appreciate it!