When a child enters this world prematurely, life is turned upside down. Plans are thrown out the window, and uncertainty becomes the new norm. That is especially true when your child is born on the edge of viability. When it takes months until you spend more time at home with your child instead of in the hospital. The NICU was recently described to me as “the place no one expects to be.” What a perfect description, as a NICU stay is rarely part of an ideal birth plan. It is impossible and amazing all at once. Few other places offer the same opportunity to witness miracles first hand and understand the fragility of life. Not that I appreciated those positives as I was living through it.
Only looking back, with a fresh perspective, I can say that I am thankful for the experience. Not that I would ever want to repeat it. Nor would I wish it on another family. I am just thankful for the lesson, for the reminder that the glass is not always half empty. When you are ready to recognize it, a hospital setting has a way of making you count your blessings. As you do not have to look far to see someone worse off than you. Circumstances no one should experience, especially when they are a child, are behind every turn.
Now the hospital is a place for appointments rather than our second home. The halls no longer spur an overwhelming sense of anxiety in me. Instead they offer a perspective it took time for me to recognize. Oh, there were moments that I wallowed in my own misery. Through this journey, I realized every emotion under the sun. From feelings of fear, disappointment, grief, anxiety, failure, and more. Each of which was an important step to where I am now. To a place of acceptance; that I cannot change what happened, and that our family will be ok. As one who is not the best at expressing her emotions, it is still a work in progress.
With time, I have realized we are one of the lucky ones. While our NICU stay was lengthy, in the end we got to bring our little girl home. She may have her challenges, but she is the daughter that makes our family complete. More so, we are fortunate that with time her challenges have lessened. Many of the initial concerns have disappeared as the months passed. She truly just needs more time to mature and come into her own. It may not be easy, but preemies are fighters, and she will find her way. Given where we started, we are lucky. It is about perspective.
Many families face difficult situations. Situations where the outcome is out of their control, and time feels more like an enemy rather than a cure. As my daughter was fighting for her life in the NICU, my college roommate’s little girl was diagnosed with cancer. Another of our roommate’s father passed away. Other close friends struggle through infertility. Each of these situations cause pain in different ways, but the result is the same. Grief. Grief that at times feels a bit more permanent than our battle with prematurity. True, the emotional scars will last a lifetime, but outwardly the signs are less and less visible of her difficult start to life. Another reason to be grateful.
It was this latest event that spurred the most self-reflection. Through social media, I was introduced to another NICU family fighting cancer for the second time. Yes, one family was dealt unimaginable cards. Premature birth of twins, diagnosis of cancer shortly after, then relapse months later, ending with one of their little girls passing away just weeks ago. Such a situation is inconceivable. I can’t fathom how one comes back from so much suffering, yet they handle their grief with such grace. A remarkable family that serves as a role model for anyone dealing with pain. The loss of a child, coupled with having to explain such loss to young children, is beyond my comprehension.
And so, my lesson on perspective came to an end. A lesson I appreciate on tough days of my own daughter’s treatment. It allows me to treasure the remarkable strides she has made in the last year, and the bright future ahead. It is not the path I wish for her, but we are still incredibly lucky. A little reminder everyone could benefit from now and then.