SMA and family life
Spinal muscular atrophy Caregiver

Ashley B.

Mom

Life, love, and the pursuit of happiness

First comes love, then comes marriage, then comes a baby with a cough machine, bi-pap, and pulse oximeter. That’s how the song goes, right?

06/2017

Three years ago, our life was 180 degrees different than what it is today. Yes, we were parents, parents of 2-and-a-half-year-old twin daughters, with another bundle on the way. We were excited to add to our family, and, believe it or not, a little sad it wasn’t another set of twins. You guessed it, we are slightly crazy! Little did we know what lay ahead of the two, well, four of us.

I had noticed things: no interest reaching for her toes, not rolling over, that she didn’t reach for us when we were near. I kept telling myself that it would come, she was just delayed—I did carry her everywhere. I was in denial that something was wrong; my heart of hearts knew but didn’t want to admit it. Then it happened, my mom said something. I can recall that day and the next 72 hours almost perfectly. A call to her pediatrician, her new pediatrician by the way—hi, nice to meet you. A referral for birth-to-3 services and another referral for a neurologist at the local children’s hospital. They mysteriously got us in in a matter of days. I remember asking “Is there something I need to be worried about? You got us in kind of quick.” I, to this day, feel like they put us in the express lane.

The day was one day before our fifth wedding anniversary. The day we went from a typical family of five to a family of a special needs child. The day that changed us, my husband and I, that is. A day where we learned that wedding vows didn’t just apply to each other, but to our daughter. In sickness and in health, basically another phrase for an emotionally tumultuous roller coaster the day we joined the SMA community. 

At this point my husband and I had been together for almost 10 years, the only time I got even close to seeing him cry was when he proposed.

He’s my rock. He’s my shoulder. He’s the stoic one; me, not so much. He’s not supposed to cry, he’s not supposed to get mad over simple things, he’s not supposed to hate the world—that’s my job. He’s supposed to keep me grounded, wipe my tears, and hold me tight.

There we were, in the same boat for the first time. A boat that I feel like, if we don’t work together and communicate, will sink. But how do we do this? How do we collectively keep our sanity? My friends, there is no one-stop shop to make it all better; it just gets easier. I wanted to scream when people told us that classic cliché, “One day at a time.” But it is the cold, hard truth.

The summer of 2014 proved to be an educational one. We skillfully mastered her cough machine, suction, and pulse ox. We began couples counseling, much to my chagrin. He called and made the appointment, he knew I needed it. I don’t need counseling; I can get through this–my  exact thoughts. He knows me so well it’s scary. I loved counseling (you need to have a good counselor on your side). The couples counseling quickly turned to just me, and I was fine with that. He had found his even ground again, while I was still searching. No shame in my game!

After a solid six months, I felt ready to leave the nest, and boy, did she prepare me. Shortly after my last session, our daughter was admitted to the hospital for the first time. I felt ready. With two little ones at home, our time was divided. For those 10 days, we were ships passing in the night. We talked, texted, and face-timed—anything we could to communicate, since we couldn’t actually be together. Mission accomplished, her first hospital stay under our belt.

Next hurdle, and the one I still struggle with to this day—leaving her. Since her diagnosis, we have been away from her for 4 nights. That was shortly after she was discharged from the hospital. It’s hard to find people that we feel absolutely comfortable leaving her with. We have our list, albeit small; they are people who she and we are more than content with. As she gets older, it gets easier—she can tell you what she needs, when she needs a cough/suction, but it still doesn’t make it any easier to leave. It’s a double-edged sword, really. Spending time, just the two of us, is more important than it was pre-diagnosis, but finding people who you feel comfortable with and are confident in is a task. When you find these people, hold on to them tight! Worship the ground they walk on, as they love your child and you to a different degree than most. We know that our plans are never set in stone and are subject to how she is feeling. Most of the time she is cough free and we are free to mix and mingle, but when it comes time for all hands to be on deck, our friends completely understand and don’t bat an eye that we can’t make it to everything. Those people, they are good people. 

Other posts by Ashley

The support of siblings

Now, in our house we have lots of big sister/little sister dynamics. With 4 girls, I can only imagine the battles over clothes, shoes, friends, and the inevitable boyfriends that will be in my future!

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