In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey.
Recently, I have read many articles and blog posts addressing quality of life issues. While I was hesitant at first to weigh in on the matter, I thought I should write a post rather than comment on every article or post. It is an incredibly complex issue and I want to share my thoughts.
A few years ago, if someone would have told me that I was going to be a special needs mom I would not have believed them. I thought there was no way I could do it. I believed that it takes a special kind of person who is incredibly patient, understanding, and strong. In short, anyone who was not me. It turns out that I was wrong, it simply takes a parent.
I have written about a conversation I had with Charlie’s NICU nurse. While I was concerned about the long term consequences of Charlie’s premature birth, she described a severely disabled baby and the parents. I do not remember the point she was trying to make. But I remember thinking, “If my baby can only hear, then I will play music for her.” It was then that I had made the decision to focus on what my baby can do and to engage with her based on her abilities. After which, I was no longer afraid of my baby’s future.
Later, I remember sitting in the NICU waiting room while on the phone. Someone had asked me, “What if something is wrong with her?” I tried to explain, “She is my baby and has medical issues. I don’t see a disabled or special needs baby. I see my baby.” First and foremost, I see Charlie and her strong personality. All the therapy, the orthotics, doctor appointments, and special considerations are secondary. While I sometimes grow frustrated or worry about some of her health concerns, I am incredibly grateful that she is here with us and that I have the privilege of being her mom.
I do wish I would have carried Charlie to term, but it did not work out that way for us. Because of her early arrival, our lives are much different, more complicated, and more challenging than we originally planned or expected. However, because it is hard does not necessarily mean it is bad. Nor, is the quality of our lives diminished.
What I did not realize before all this is that quality of life is independent of ability. I know of many people who are not disabled but, for whatever reason, their quality of life is compromised. To me, quality of life means utilizing one’s abilities to enrich their life through engagement, exploration, and connection to the world around them. I wonder if it is our competitive society that has placed the importance of being the best or most important over basic human desires such as acceptance, belonging, being loved, and participating in leisure activities.
While I don’t know if Charlie will be the best in any field (no one really knows that about their kids), I can say that she is loved, accepted, engaged, challenged, and entertained. Currently, she is unable to tell me if she is happy. However, I hope her frequent laughs and smiles are her way of exhibiting that she is. I know, as her mom, I am.
In summary, I would not say our quality of life is any less due to her early arrival or special needs. Our lives are merely different and that, in itself, is not a bad thing.