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It was just another non-standard OB-GYN appointment in late January of 2015. It was time for the non-stress test, and let me tell you, when you’ve had the roller coaster ride of a pregnancy we were going through, you stress at every. single. appointment. Each appointment I had with our amazing doctor was a crap shoot.
In the Beginning
If you don’t know our story, check out the about me page. The quick and dirty recap of an overly eventful pregnancy… We were expecting twins, mono-mono, turned out to be mono-di. Twin B, my angel Laila, had a heart defect and we lost her at 16 weeks. My surviving warrior was heavily monitored every one to two weeks. When January rolled around, we got the all clear to travel three hours to my best friends wedding, so I thought things were finally looking up.
Then I showed up for this appointment. Frustrated with some stuff at work, and simply dreading every appointment. I’m almost 34 weeks in, mentally exhausted and hooked up to this monitor for more than an hour. I apparently didn’t realize there was something wrong but should have.
Riley’s heartbeat wasn’t normal. So off to the hospital we went. I would be in the hospital, on a monitor until it was time for this warrior to make her appearance. She didn’t wait too long.
We’re in the hospital for 24 hours, couldn’t get comfortable, the wonderful nurses kept asking me to change positions because Riley’s heartbeat kept dropping… and now I’m having contractions. Riley said enough of the hostage situation, I want fresh air, and was delivered. That’s when my heart started to break for her, and quite regularly.
The Moment Your Future Changed
She had an inutero stroke. She was later diagnosed with hydrocephalus and epilepsy. She’s missing 60% of her brain. She’ll never develop mentally past an infant. She has some serious hurdles in life.
So, back on topic… What do you do when as a mother or father, your child doesn’t meet milestones? How does that make you feel? From my experience, it sucks. I’d swear and drop a lot of f-bombs, because, let’s face it, the first two years of her life I struggled with acceptance of her situation and I did swear, frequently.
Let me tell you right now. I would give my life for her… She is my little girl, my best friend and I love her forever and day. With that said, this special needs mama life is hard. There’s no manuals, no classes on how to fight with insurance on a weekly basis. There isn’t a how-to guide on what’s normal for typical kids, and even less on the special needs world. Then you toss in a medically fragile little girl who wants nothing more out of life than to be in the arms of someone who loves her.
Not Talking Milestones
As a parent, though, I find it really difficult to talk about how she’s not meeting her milestones. Due to the hydrocephalus, she still can’t hold her head up on her own. We work on it, but she’s not there yet.
She rolled over once, before her two brain surgeries. So we considered that one a milestone she’s met. She does smile and sometimes laughs, but that took a long time to happen as well.
When people ask me how she’s doing, I feel like a horrible parent because I simply say “She’s doing really well.” In my head, I continue with “considering the hand she’s been dealt.” I know, I know. I sound like a bad person. I know I’m not the only parent who would rather not talk about the things my kid can’t do because of her medical conditions, but you also can’t tell people to bugger off.
OK, Let’s Talk OUR Milestones
I want to talk about her successes. I want to talk about how beautiful she is, and how opinionated she is, and oh boy, this girl has some serious opinions. She gets hangry!!
When you’re faced with having to have the milestone talk and you’re a special needs parent like me, it’s OK to redirect the conversation away from milestones and talk about your child’s successes, because those ARE her milestones.
There is this older lady at my office who knows Riley’s history, we don’t talk very often, but when we do see each other she always asks about how she’s doing and how she’s progressing. She has such a good heart, but God bless her, she wants to know too much, and she tends to focus on her past instead of looking to the future.
I try to be kind to her, I know it’s coming from a good place, but I always steer the conversation to some of Riley’s recent successes. Like being on the stander for 15 minutes without fussing and also staying focused on the class in front of her.
To Each Their Own
This post really took a different direction than I had originally planned. It started because I was angry. I was reading another Mom Blog, I was intrigued by its title and felt totally let down by the content. This is of no fault of the blogger, she had a legit topic… I just couldn’t relate when milestones are completely different for our family than it is for theirs.
Moral of the story, everyone’s journey is different. Our milestones are happening completely different than yours, than theirs, then everyone else’s. It’s your journey, you set the pace. And if someone tries to talk to you about it and how you plan to fix it, steer them in a different direction.
Good luck out there, Mamas and Papas. The road may be bumpy, but the journey is worth it.
