If you have a medically complex child or loved one, then you can relate to how life altering the experience of being in an intensive care unit is, especially for the first time, and ESPECIALLY when you are postpartum.
Like… all the hair raising mama bear instinct senses, zero sleep, not leaving your child’s side, standing up for your point of view, trying to learn medical jargon, praying it’s over soon kinda life altering.
As with other events that happen, this kind of thing is often the beginning of the next chapter in the story of our lives. You go to college, chapter, you get married, chapter, buy a house, chapter, move to a new city, chapter, train for and run a half marathon, chapter, etc., etc.
Each of these milestones that we cross define the person we are becoming. Consciously or not, we’ve decided how to act in each of these situations, and who we wanted to be. It’s this, ‘who we’ve decided to become’ that I want to tell you a story about.
It’s about a conscious decision, a choice, that has forever shaped the course of my life, and I believe that whatever you are facing right now, you also have a choice. You can consciously decide to be the person you wish to be.
So let me tell ya a little story…
In 2012 our oldest daughter was born and we had a very typical first year as parents. It was hard yet blissful, as those wee babies tend to be. I was working from home at the time and we had waited about 3 years after we were married to have our first baby. So brilliant us… before our oldest was even ONE, decided… ah what the heck, let’s go ahead and try for our second. Well, that plan sure worked. I was pregnant again before I could bat an eye and so the journey to number two began.
My pregnancy was completely normal, so you can imagine our surprise when our second daughter came along in 2013 and we quickly realized that something was not right. She could not keep her oxygen saturation levels up and we were whisked away to the nearest Children’s Hospital.
I’ll never forget the night they took our baby away from us, shooed us out of the room as I heard her screams coming from the middle of a sea of white coats, and proceeded to run tests on her to see what could be wrong as my husband and I counted the hours helplessly in cold, dark waiting rooms. We have named this, our night from hell.
That night would begin a 2 month stay for us in the hospital with our daughter. My husband and I would divide and conquer, me staying at the hospital mostly, and him staying home, two hours away, with our older daughter, our sweet little 19 month old.
The initial tests came back negative, one after the next. At first the doctors were baffled, they didn’t understand why she couldn’t keep her oxygen saturations up. Then, as the days passed and our bedside nurses figured out that it was primarily while she was sleeping, they passed along the information to the pulmonology department. Within 10 days we would receive a working diagnosis of Congenital Central Hypoventilation Syndrome.
Hallelujah! A diagnosis. But what the heck does it mean???
It means that she has a rare genetic syndrome that only 1,200 other people in the world have. I’ll share more some other time, but you can read about it HERE.
The doctors explained the syndrome to us and that having a trach would be the best way to approach her condition. We gave the go ahead to have a tracheostomy performed on day 12.
NEVER IN A MILLION YEARS DID I EVER THINK I WOULD HAVE A BABY WITH A TRACH.
Prior to this hospital stay, I always joked around that I was one of the least medically inclined people on Earth and relied on friends and family for the usual baby questions.
Despite this new challenge, I had an unexpected, overwhelming sense of peace. Deep down, I had the knowing that we could do this, that things were going to be ok, and that I was CALLED to care for this child. As a long time student of personal development and an avid reader, the book that had made its way into the NICU with me was No Excuses by Brian Tracy. It was no coincidence, that Brian discussed in the book the power of self-discipline as it applied to every single area of your life. As I read that book, it was made clear that we are all responsible for where we are in our lives, and we have the power to decide what we are going to do about the circumstances we find ourselves in.
That’s when I knew. I knew that we were not going to be a victim to this situation. I knew that we were going to continue to live our lives, get the best care possible for our daughter, and never feel bad for ourselves, or treat her any differently.
As I write this, she will be 6 years old in just a few days. We’ve had a long medical journey, but she is living a full, vibrant life, and has received (and is receiving) the best medical care available in. the. world. We’ve been to the international conference for her syndrome and met dozens of other families and individuals going through the same thing.
We’ve pulled strength, perspective, and appreciation from this experience. Just remember, it’s not what happens to you that defines you, it’s how you RESPOND to what happens FOR you that counts.
I hope that by sharing our vulnerable story, you can draw some strength to face whatever it is you are dealing with. I see you, I know you are doing a great job, and I know that whatever the “IT” is for you, you can Make It Happen!!
Have you made a similar life changing decision? Share it with us in the comments below!