One of the very first things John and I talked about after Madison got sick was the future of our family. We had always planned on having 3 or 4 kids, but as we sat in the hospital room watching our 11 day old babygirl fight for her life, we knew our entire future had just changed. How did Madison get sick? Could this happen again? Will we be able to handle another child or children with so much unknown ahead of us? We didn’t know the answers to those questions then, and we still don’t know the answers now, but we knew in our hearts that adding more children to our family still felt right to us.
The first year of Madison’s life was all about survival and learning more medical jargon then any typical parent will ever have to know. It was a very hard year. And although every year since has still been far from easy, we’re in it now. We know what we’re doing (most of the time). Therapy, medications, appointments, equipment; it’s all become a part of our daily life. We always wanted our children close in age as we are both very close with our siblings, so once we felt “comfortable” with Madison’s routine we began talking about trying for another.
What we didn’t expect was that round two wouldn’t come as easily as Madison did. Although we got pregnant without an issue, we wound up losing 3 babies between the fall of 2018 and spring of 2019. It was devastating. It was shocking. It was awful in every way you can imagine. After everything we had already been through with Madison, all of the heartache and pain, I felt that we had met our lifetime quota of loss and hard times. And yet there we were, grieving again. Experiencing more unimaginable and surprising loss, over and over. It truly felt as though all we experienced for 2 years straight was heartache. It was HARD. After lots of bloodwork and genetic tests, we thankfully conceived a sticky little baby in January of this year. “What a great year 2020 is going to be!”, we thought lol.
Now anyone who has experienced a miscarriage will tell you that pregnancy after that is unfortunately not so joyous and exciting, it’s scary. You question every twinge and every symptom. You become terrified of every ultrasound fearing the worst because that’s what you’ve become accustomed to. Pregnancy loss truly robs you of so much joy, it sucks. I didn’t feel “safe” and excited until I began feeling baby moving on a daily basis, halfway through this pregnancy. And while lots of moms in this position finally feel fully relieved and looking forward to the final trimester and meeting their baby, I’m filled with a whole bag of new fears because of my experience with Madison.
Madison was born healthy. She was perfect. But at 11 days old she wasn’t, and I will never know why. I’ll never know what happened. I’ll never know how she contracted meningitis, an extremely rare disease. And the not knowing makes it hard to get excited for another birth because what if something goes wrong again? The thought of having another child experience something so awful absolutely terrifies me. The thought of having two severely disabled children absolutely terrifies me. And even though I know the chances of this happening again are so extremely rare, it doesn’t matter. When something rare happens to you all statistics go out the window. You become so aware of how anything can happen at any time to anyone and completely change their life forever.
Pregnancy after rare disease is a whole different ballgame. It comes with so much more fear than a typical pregnancy does. I’m finally at the point where I can feel good about this pregnancy, it’s viability, and meeting my new baby, but now I’m worried something will happen to her once she gets here. Like most mother’s, when I was pregnant with Madison I never thought about something going wrong. All our testing had come back perfect. She was growing on track. I never thought about what if something happens once she gets here. And now when I see expecting mamas I worry about them. I know they too are elated for the journey, but do they know that things might not go the way they’re imagining? Do they know things might not be ok? Do they know they could be thrown a curve ball that will completely change their lives forever? I can’t un-know this fear and it haunts me.
I’m also worried about how I will manage a newborn and a 3 year old who can’t do anything for herself. My entire day revolves around Madison. There are no real breaks for medical mamas because our kids need us to function. Madison can’t feed herself, use the potty, tell me what she wants, or even move from one position to another on her own. Now throw in an infant who will also require me 24/7. Overwhelming to think about, right? But even through all of the fear I have for our future and how we will manage, I know that we will.
I spoke with A LOT of special needs mamas who have both medical and neuro-typical children about their experiences, and while all of them expressed it’s hard, sometimes very hard, they all agreed that the joy and positives outweigh all of the difficult and stressful times. John and I both believe a sibling will be so incredibly good for Madison and her development and if I’m being honest, will be so good for our own souls as well. We’ve been parents for 3 years and have never been called mommy or daddy. We’ve never heard our child laugh. We’ve missed out on all of the typical milestones that children bring to the world and that’s a hard pill to swallow. We need a little joy to help us through Madison’s hard days. And Madison needs someone to watch grow; to hear laugh; to see playing; so that she is hopefully inspired to do the same.
I have seen through so many of the warrior mamas I’ve met on this journey how wonderful a sibling can be for a special needs child. I’ve seen their children develop real relationships with their siblings and grow in their own development. And while it does sadden me to know that this new baby will experience scary times and see and know things that no child should have to, I also know how compassionate and inclusive and loving she will grow up to be because of Madison.
And so while this pregnancy has been very different. And while I’m fully expecting to be a paranoid mess once baby girl gets here (I mean I am dealing with pregnancy after loss, pregnancy after special needs, and pregnancy during a global pandemic here people – one hell of a hat trick, no?), I’m still elated to meet our newest addition! I can’t wait to see how she changes us. I can’t wait to see her interact with Madison. I can’t wait to experience all of the “normal” stresses of parenthood and not just the life threatening scary ones I’m used to. I simply can’t wait for her to be here. Time to shake our fears the best we can and to get ready to embrace this new journey as a family of 4. See ya in 10 weeks BB2!