November brings us to Prematurity Awareness Month. For my heart it has been a long journey through the fall to this month. September marked 16 years of my sweet baby boy, Kristofer being in Heaven. October brought us through Infant Loss Awareness and those two months bring me back through the dark 182 days my son spent in the NICU.
Then we get to November, it is about the struggles and the loss but also about the hope for our kids that survived. It is about celebrating how far my bright shining 16-year old daughter has come in these years. It is about honoring her fight. It is about the fact she was not supposed to walk or talk, but somehow she is crazy smart with amazing grades and twirls baton.
But this year, what come to mind the most for me is that prematurity is forever. Nothing will ever undo the fact that Kaeli came into this world 14 weeks too soon. Forever she will have missed time she should have been developing inside my body. Those 73 days in the NICU never go away. The consequences of weighing less than 2 pounds at birth cannot be undone. Those 73 days of pokes and prodding left her needle phobic forever, she can manage it now, but it is forever part of her fight or flight response. Forever her brain is wired differently. Forever she will perceive pain differently.
Prematurity marks a child’s life forever. First you give adjusted age…accounting for those 14 weeks that your child entered the world too soon. The doctors and nurses say “She’ll catch up by kindergarten, maybe sooner.” Maybe all the benchmarks are hit by kindergarten, but as a parent you can still see the difference. The ways your kid doesn’t fit the norm. You wait for them to fit the norm.
Granted, I was blessed with that shining moment when your child does something and she blends in even for a moment. When my daughter was 6 years old, she picked up a shiny metal stick and found her place to be “normal”. I cried tears of joy during her first show when I realized I had lost track of which one was my daughter. There was that brief moment when she was just one in the crowd. The differences from being a preemie did not show.
For a while, you take a breath and you think your life will be normal. You’re your child will outgrow the accommodations. The days of running a pharmacy in your kitchen will pass. There are days, weeks and months where you think you have escaped the impacts of a premature birth. Then, something happens and you see the differences between your preemie and the full term kids around her. Your normal is not the same.
Right now those differences in her are really coming to light again. The truth is Kaeli has been in constant intense pain for about 7 months. We have seen so many doctors, tried every crazy thing. No one can figure out what is going on. My gut tells me, that it is her prematurely wired brain making this so difficult to diagnose. No MRI can show what years of mothering a preemie can teach you. You can hear that slight difference in a cough across the house and shout “take your inhaler” when no doctor would perceive anything wrong.
The fight never stops. What will it take to conquer this latest battle? What will come next? Will my preemie ever be able to have kids of her own, and if she does will they be preemies too? November 17th may be World Prematurity Day, but in this house we are aware of the impact every single day.
Thank you for sharing this. It truly does impact us every single day and the normal is not our normal.... very powerful words that only WE can understand.....
"... in this house we are aware of the impact every single day."
Truer words have never been spoken. And we are the group that know the true impact of that statement.
I hope you find the answers to your latest challenge for Kaeli and can find her comfort.
Thank you for sharing your story.
Hugs and love to you!!! Thank you for continuing to share your story and raising awareness.
Thanks so much for this very honest and heartbreaking post. For some its one month of the year, but for too many its an everyday reality. I hope that you can find answers and she can regain her own sense of normalcy, and at least be free of pain to do what she loves. Sending you strength.
Love and Hugs
We help moms have full-term pregnancies and healthy babies. And if something goes wrong, we offer information and comfort to families. We research the problems that threaten our babies and work on preventing them.
© Privacy, terms and notices