When Expectation Does Not Meet Reality
This marks the first of our monthly Mom-To-Mom Blog series.
Please note- TRIGGER WARNING. The below may be difficult to read if you are an anxious pregnant or postpartum mom. This post speaks about the struggles of having a child with medical challenges. If you are actively anxious about these issues, consider not reading the following post. Though- its message is one of hope and encouragement.
My mom was a NICU nurse at one of the busiest hospitals in Boston for 25 years. She LOVED it. I however, did not. She would come home with stories of the day, some of them incredibly happy, filled with all the warm fuzzies, but most of them not. What’s that saying: no news is better than bad news? I wish she would have abided by that rule.
When my husband and I decided to start trying, it only took a month to get pregnant. It was awesome; we were so excited. But I also felt this incredible guilt and sheer panic. I remembered the stories from my mom and was afraid one of those scary scenarios was going to play out with us.
I have always been an anxious person and have been on meds since I was about 15. During my pregnancy I was told it was best for the baby to go off of them. So, not having any idea about being pregnant, I did. Let’s just say, in hindsight, I wish I hadn’t. I pretty much spent the next 9 months in a sheer state of anxiety and panic. No one really prepared me for the nausea or the constant acid reflux. Or the weird pains that would come and go; pretty much anything that happened I was worried something was wrong. I am just going to come out and say it.…
I hated being pregnant, it was like nothing I saw on TV.
Fast forward to 37 weeks, and my blood pressure went up, and I was induced. All in all the labor was fast; it was 12 hours from when I walked in to when I had my little girl- born at 4lbs 10oz. She was a PEANUT. I still can't believe how small she was. We spent 3 days in the hospital and went home. That was the scariest night of my life. I think I called my mom 10 times throughout the night for various reasons. I mean, I’m a first time mom and the hospital is like ok, see ya, good luck! Like what!?!
For the next 3 years, our world was turned upside down. At 4 months old, my daughter was diagnosed with late-late-onset GBS meningitis. It took 4 doctors appointments and begging the ER not to dismiss me as a crazy first-time mom to recognize something was wrong. At 6 months old she had strokes and seizures and at 22 months old she had RSV that infected her brain. We spent Thanksgiving in the PICU. We are now up to 12 specialties at Children’s hospital, and she gets monthly infusions and we try our best “not to get her sick”.
There is nothing to prepare you when you have your first child. There is definitely nothing that prepares you to have a medically challenged child. I know more about the brain than I ever thought possible and ask questions with complicated jargon that sometimes even I don't know what i'm asking. A fellow mom said one time “I’m not sure what information was pushed out of my brain to fit this new information, but here we are”.
Things have not gone the way I thought they were going to go— far from it. Actually, I would say a complete 180 to how I envisioned it going. But we are here, and this is our life. And it’s taken a really long time to get to this place without being angry. My “perfect” first child experience didn’t happen, but what I have learned is that there are so many completely perfect moments that happen on a daily basis. When my daughter was in the PICU, my dad started a list on his phone of good things that happened that day. Literally we put “she picked her nose” as one of the things because the coordination you need to do that is astounding, we even had taped it for her neurologist. Those things literally got me through the day. I try to remember to come back to things like that on a daily basis.
“The days aren’t all good, but there is good in every day” was also one of my favorites my dad told me regularly.
I don’t think i’ll ever fully get over having my daughter’s doctor look at me and say “I don’t know if she’s going to survive”. And when she gets a fever, a part of me, I think, will always panic a little. But she is literally the light of my life and I believe she was suppose to be my child. And I am truly thankful for that little human.
Being a mom is the fucking hardest job on the world. Some days are going to be awful, and that is ok. You can still love your kid, with your whole being, and still feel like you need a break. Give yourself grace. Your dinners might not be as elaborate as they used to be, and you may live in leggings (I may never wear real pants again), and you may not be at your pre-baby weight, but you are doing it- we’re all doing it. And we’re doing a really good job no matter how different it looks.
- Jackie Bradley, mom of Sunny (4 years, meeting all of her milestones, thriving, and the strongest person I know)..