When Scott and I decided to have children, prematurity was something that never crossed my mind. Sure, I worried the normal first time parent worries. Would our children be born healthy, would they have ten fingers and ten toes, what if something was wrong when they were born?
When we found out we had fraternal twins on the way, we were told to expect them to come five or six weeks early—not sixteen weeks early. I didn’t know that babies born that early had a chance at survival. I was prepared to stay in the NICU a couple of weeks—not seven and a half months.
I was at an event recently and everyone was introducing themselves. A lady introduced herself to the group and had a similar story to mine—child born early, multiple diagnoses, NICU stay, feeding tube—she was clearly still quite traumatized and very bitter.
Several other people introduced themselves and it was soon my turn. I started my normal “quick synopsis of our NICU stay” speech that I could give in my sleep: “My name is Laura. Our twin boys, Joseph and Campbell, were born at 24 weeks…”
Before I could continue, she abruptly interrupts me and says, “I’m sorry,” quite emphatically. I’m sure I had a strange look on my face because I wasn’t quite sure what she was apologizing for. I continued, “Campbell passed away after 23 days and Joseph spent 228 days in the NICU. He has Auditory Neuropathy, hypotonic CP, Short Bowel Syndrome and has a G-tube…”
Before I could even continue, she interrupted me again in front of everyone. “I am sorry you are a preemie parent. I don’t know what else to say to anyone who has been in the NICU but ‘I’m sorry’ because it stinks.”
I kept my cool but was I livid. There were two things about this situation that infuriated me: why do preemie parents try to “outdo” each other in who has the worst NICU story, and did someone really just tell me she was sorry I’m a preemie parent?
This was a first. I’ve had a lot of things said to me over the last four years but never, “I’m sorry you are a preemie parent.”
I couldn’t get this off my mind for days. Being a preemie parent is a “title” I never expected—especially a 24-week preemie parent. Are there days I wish I didn’t have this title? Sure. However, that would mean that Joseph wouldn’t be who he is and that I cannot fathom.
Do I wish our boys hadn’t been born at 24 weeks? Yes. Do I wish Campbell hadn’t died as a result of prematurity? Absolutely. Do I wish Joseph hadn’t spent 228 long, long days in the NICU? Yes.
Do I wish that Joseph didn’t have a feeding tube? Do I wish he didn’t have Short Bowel Syndrome? Do I wish Joseph could hear? Do I wish he could talk where people can understand him? Do I wish that Joseph didn’t have to work so, so hard in everything he does? Do I wish he could keep up with other kids his age? Do I wish he didn’t get strange looks in public because he wears a hearing aid or cochlear implant or because he doesn’t answer when someone speaks to him? Do I wish he didn’t get sick so easily? Do I wish he didn’t have to be poked and prodded at almost every doctor appointment? Do I wish he could just be a “regular” kid?
Yes, yes, and yes a million times over.
Do I wish that Campbell was alive? Do I wish I didn’t know what it feels like to hold my child as he passed from this world to the next? Do I wish I didn’t know what it’s like to meet with a funeral home director to plan my child’s funeral? Do I wish I didn’t know what it’s like to pick out an outfit for your child to be buried in? Do I wish I didn’t know what it’s like to sit on the front row at the cemetery while your child is being lowered into the ground? Do I wish I knew what Campbell would look like today? Do I wish that Joseph had his twin brother to play with?
Yes, yes, and yes a million times over.
Finding the Good
If I wasn’t a preemie parent, I would not have witnessed a 2 pound 1 ounce miracle make it home after a 228-day hospital stay with so many odds stacked against him. I would not be inspired by Joseph’s strength, hard work, and determination every second of the day as he works so hard to overcome his challenges. I wouldn’t have this amazing little boy who loves life more than anyone I know and has a smile that melts my heart every time I see it. And that laugh of his—there are no words to describe how it feeds my soul. There are many times we wondered if we would hear him laugh.
If I weren’t a preemie parent, I wouldn’t have met so many amazing doctors, nurses, therapists, and teachers who work, and have worked, so hard with Joseph. I would not have met so many amazing parents of other preemies. I would not be working for a wonderful foundation that supports parents of preemies. I would not have the outlook on life I now have.
Some things in life just aren’t a big deal anymore. My perspective on life is completely different now that I am the mom of a miracle. I treasure the little things so much more. I also realize that no matter how bad some of our days have been, there are people in this world who have it much worse than we ever did.
Being a preemie parent is hard. Any resemblance of a social life is gone. Some friends have remained by my side through the entire journey. Some friends fell by the way side—I guess they were afraid of the journey. I have new friends I wouldn’t have made if it weren’t for this journey.
I saw the lady a few days later and I had this whole speech prepared to spout off if I ever saw her again. Before I could say a word, she said, “I just want to tell you I am sorry for the loss of your son. I don’t think I could do it. I would want to curl up in a fetal position the rest of my life. I don’t think I could go on.”
I quickly let down my guard.
I looked at her and after thanking her said, “You know, I always wondered how people who lost a child did it. This is not the path I would have picked for my life but it is what it is—you do what you have to do. If I had been dealt a different hand in life, I wouldn’t have all of the amazing things I have now. I wouldn’t have met so many wonderful people and would not be in the line of work I am in now. Do I wish things were different? Sure. But, I am so grateful for everything we have, and I am grateful for the 23 days Campbell was with us. Some people don’t even get that.”
We both smiled and went our separate ways.
Yes, I am a proud preemie mom and I am grateful for this journey. No apologies needed.