It has been nine years since I first entered a NICU. Nine years ago I became a member of a club that I didn’t know existed.
Nine years seems like such a long time but I can still feel myself sitting in that straight back chair beside my son’s isolette like it was yesterday. I can smell the soap that I used to wash my hands with until they were raw. I can hear the machines beeping, reminding me that I wasn’t sitting in the nursery in my home that I had lovingly prepared.
Being in the NICU was a life changing experience but it was an experience that taught me some of the most important life lessons I have ever learned. It was an experience that taught me life lessons that I will carry with me for the rest of my life.
Life doesn’t always work out the way you want it to.
My life has always been well laid out. I live in plans. Before I make any decision I research in depth. I almost always feel prepared for what is about to come.
I was not prepared for the NICU.
I didn’t know that Tyson was sick before he was born. I didn’t know that he would be rushed off to The Hospital for Sick Children, a level 3 hospital, within days of being born. I din’t know that he would need life saving surgery and that he would spend over a month in hospital after his birth.
I was not at all prepared. I was not prepared for the physical ache of a broken heart. I was not prepared for the desperation that fear can bring on.
I was not prepared for what it would feel like to be truly helpless. The kind of helpless that you feel when the alarms scream, warning you that you’re baby has stopped breathing and you don’t know what to do. The kind of helplessness that brings you to your knees when a nurse turns to you and says “This is where you say your goodbyes” before wheeling your two day old baby into an operating room.
I was not at all prepared for the kind of pain that never really goes away but rather digs itself deeper into you, so deep that it finds itself a permanent home right beside your heart and becomes a part of who you are.
This wasn’t in my plan and was not at all what I dreamed of when I thought about my first baby.
Crying is not a sign of weakness.
When we first received our son’s diagnosis, I felt like I had to cry in the privacy of our hospital room. I didn’t know how to react in front of others because it quickly became clear that my tears made most people uncomfortable.
I felt as though I had to present the image of a strong mother and a strong mother doesn’t break down in tears do they?
Before long I was unable to control when the tears came. I cried all the time and everywhere. Sometimes my husband and I would cling to each other and cry together. Sometimes I locked myself in the bathroom and cried while I kicked the door.
I cried silent tears that no one ever witnessed and I cried loud, uncontrollable sobs that echoed through the hallways and prevented me from catching my breath.
I soon realized that my tears weren’t a sign of weakness. They were a sign that I was feeling this experience. We all feel things differently and I soon came to an understanding that my tears were tears of fear, anger, frustration and guilt and that there was nothing wrong with them.
And they surprise. I remember sitting in the quiet darkness of the NICU when we were told we had visitors. My husband and I looked at each other in confusion, our parents had left for the day and we weren’t expecting anyone else.
When I went out to the front desk I was greeted by a friend on mine and her husband. The day before I had left her a voicemail letting her know that our baby had been born and that he was sick, that he was in the hospital and that I would keep her posted as to the progress. She decided that she should come to offer her support. I was so happy to see her. They visited our baby with us, they told us how beautiful he was. We had coffee and chatted about labour and what it felt like to be a mother. I felt like a normal mother celebrating her new baby with friends, if even just for an hour.
Many of our friends and family didn’t know how to react to our situation so it caused quite a few of them to stay away. We felt so lonely and scared. At the time I was angry that people stayed away. Nine years out I have a bit more understanding that it’s hard to know what the right thing to do is. Some stayed away because they felt like we needed our space. Some people stayed away because they were afraid of doing or saying the wrong thing.
Some people did disappoint me, though they didn’t do it on purpose but others really surprised me and I am thankful for both.
You are stronger than you think.
At the end of the long days spent in the hospital, I would come home and pour myself into a steaming shower, lay on the floor of the tub and sob as the hot water rained down on me.
I really thought I wasn’t going to make it to the other side of this ordeal. I thought I wasn’t strong enough. I felt spent and weak.
Truth is, during those 6 weeks, I was the strongest me I have ever been in my life.
When I had cried all my tears or the hot water had run out, I dried myself off and prepared myself for the next day. Just when I thought I had reached my limit and couldn’t possibly manage another day, somehow I found the strength to keep going. There wasn’t any other option. Each and every day I would wake up, sit on the side of my bed and tell myself that I was going to make it through today. That I just had to worry about today.
I haven’t questioned my strength since then. When life throws me a curve ball I remind myself that I survived the NICU experience and if I can survive that, I can get through anything.
Hope can be found in every situation.
Tyson was sick. He was black and blue and needed help to breathe. He wasn’t able to swallow and had to re-learn how to eat. As sick as he was, there were so many babies in there that were much sicker. I would sit in the parent waiting room with other parents who were experiencing their own nightmares and we would chat.
There were babies who were weighed in grams rather than pounds. There was a baby who was born with her stomach outside of her body. There were babies who had cancer.
The NICU at a level three hospital is filled with the sickest of the sick, yet there was hope. They had a strength that I could only dream of. They were fighters.
Right at the entrance of the NICU was a big wall of NICU graduates. Babies who had spent months sometimes years in the hospital but had gotten better, been released from hospital, grown up. They were playing baseball, graduating University, becoming doctors.
Hope can be found in even the most hopeless situations. Although my mind tended to drift towards the worst case possibilities, I tried my hardest to find and focus on the hope that could be found. That hope is what helped me get through each day.
Those weeks in the NICU were the most difficult weeks of my life. I had moments when I felt like I wouldn’t make it through another second. But I did make it. It made me stronger, it made my husband stronger, it made my son stronger. We are stronger as a family because of it.
I would have changed spots with my son in a heartbeat if I could have but to be perfectly honest, I can’t regret our experience. It made us all who we are today.
September is NICU awareness month. I spend the month reflecting on our experience and how far we have come. I think of those families who are going through such a difficult and life changing experience. I know I can’t change it for them but I hope that I can at least help those families know that they aren’t alone.
If I could send them a message it would be that there will come a day when you will be able to look back on your experience and see the lessons you learned, even though you may not see it now.
Until then, we stand with you.