Before I dive into this topic I feel something needs to be clarified. There’s this misconception in the special needs community that all of our stories need to filled with hope and joy and a light at the end of the tunnel. That everything we write about should be rays of sunshine. And oh yes we had a little struggle but look at how amazing everything is now and how much we have over come! I’m here to call bullshit. Not every story has a happy ending. And our stories certainly don’t just begin and end with one struggle we have overcome. There’s a lot more to the journey that is the life of a medically dependent or special needs child and it’s full of constant battles that never allow us to come up for air. And yes. Maybe we will have a happy ending and win the war. But that doesn’t mean I’m going to tell our story in a way that makes you feel all warm and fuzzy inside. So here it is. Here’s just a sliver of one of our current realities.
Don’t get me wrong. I’m not saying there are no happy endings and that we aren’t filled with amazement and happiness for everything our son accomplishes and endures. We are beyond luckier than most families in our position and are often far better off with our incredible support network. What I am saying is just as anyone who has lived this life. Happy endings and fuzzy feelings are not a constant.
The idea that the NICU experience is a never ending rollercoaster was setting in for us. Never in our lives had we been so exhausted. We were complete zombies and to this day I have no idea how we were able to function during those first several weeks in the NICU. The best example I could compare this feeling to is in movies where a boxer has been beaten down so much, is barely standing and they are about to receive the final blow that will knock them to the ground. We barely came out on the other side of Beckham’s bowel surgery and hearing it was a localized perforation versus NEC was a definite win. This gave us a little boost, as we soaked in the mini victory, but the fight was not over.
The NICU is not exactly a place of rest and relaxation. As a parent of a NICU baby it can feel like you are constantly drowning in a sea of uncertainty, stress, sleep deprivation, medical terminology and emotional turmoil. All of this can pile on quickly, if not all at once, and it is important to take a step back whenever a small moment arises to care for yourself. These moments may be few, between all of the doctors, nurses, respiratory specialists, scans, and bloodwork rotations. Not to mention feeds, diaper changes and your child’s change in medical status, but every now and then the stars align and you will find yourself maybe 5 minutes or even 2 hours of actual time to yourself. How you choose to use this time could be key to surviving the roller coaster that is life in the NICU. Rather than diving into Google to research more about your child’s condition and statistics here are some helpful tips of self care for parents in the NICU.
January 19th 2016. The time stamp on the voicemail of my phone.
The Call I missed by one second.
The moment I glanced at my phone to see it was our surrogates call I just missed.
The second my heart plummeted to the floor knowing whatever she was calling for was not good.
The ding my cell phone made indicating I had a voicemail.
The unsteadiness of my hand as I went to click on the message while holding my breath.
The pain that overcame me when she started speaking crying that she was bleeding and going to the hospital.
So I’ve been in the hospital for 4 days having an adrenal crisis after a recent diagnosis of Addison’s disease. It’s been hell to say the least being stuck in a tiny room while my son is home sick and my daughter experiences her most stressful week before her big show and my husband tries to juggle it all. So as per usual I take to writing to get my feeling out. I call the below “Hospital”
The second you get your baby in the car for the very first time.
Everything Changes. Every Facet of your life. You have made it. No more driving back and forth to and from the hospital, no more eating only whats close by, no more alarms giving you heart attacks, no more cave. You have been reintroduced to sunlight. Your baby has been introduced to it for the first time. Everything is a shock factor and everything is a first. Even for the parents…
It’s been over a year since my last post. If there’s anything I have learned about prematurity it is that even after the NICU everything is a fight. A lot has changed. We have moved, Beckham has grown, I am working again and the fight continues for his health, always. I’ve had to regain myself. Give myself time again to be me, to do the things I love. Slowly but surely I try to when I have the time but still feel I have a ways to go. There are so many new things I want to write about as Beckham grows but I want to finish his story in the Nicu as well. So I plan to do both as we go along. I will have the NICU series labelled separately and also write about the now with some flashbacks of what has been going on since we left the NICU almost 2 years ago. It’s hard to believe it’s been that long. Seems like yesterday. So, lets begin with where I left off from my last post “From Hope to Horror”.
It’s been three months since I started this blog post and 16 months since the next part of this story. I haven’t been able to wrap my head around writing about this experience. It was the worst day of our family’s life…
There is nothing more lonely than being a mom of a baby in the NICU.
Our Son was featured on CNN today enabling us to share our story with the world! We are over the moon to share is story of thanks for the NICU staff and everyone who has helped us and also as awareness for premature birth!
The story can be found here: