When a Stranger Saw Us at a Birthday Party and Said, 'It Must Be So Hard'
“It must be so hard,” a stranger said.
I was at a birthday party with my two kids. We only knew the host family. My daughter was playing in the jump house, and I was sitting with my son.
My son is 2 and a half years old and has spinal muscular atrophy type 1, a rare neuromuscular disorder that affects his ability to breathe, move, sit up, walk and talk.
Upon his diagnosis when he was just 4 months old, he was hospitalized for quite awhile. I used to say we were faced with some hard decisions, but we weren’t. The decision to give him a G-tube was a no brainer. We did it three days after the blood work came back confirming SMA, day 13 in the hospital. I mourned the end of our nursing journey for like a minute and got right to pumping my milk. How glorious it is to feed my child without the risk of choking and aspiration! All the nutrition he needs along with yucky medicines, without a hassle? I’ll take it.
On day 39 of our hospital stay he was finally successful extubated to biPAP after a few previous failed attempts. The biPAP mask covered the majority of my 5-month-old’s face and couldn’t be sealed properly. Within a few hours his weak body started to shut down due to the inadequate respiratory support. He was reintubated.
The plan was to take both our kids home, and at this rate that seemed devastatingly impossible. The hospital had become our home. The staff had become our family. I’ll never forget the conversation I had with a seasoned RT. I asked him what to do, and he told me, “Trach him, take him home and get on with life.” I needed to hear that, and we needed to do that. We didn’t ponder the what ifs much. We signed him up for surgery for the next day.
On day 40, my baby boy had a stable airway. He could breath. I could see his face. So again that decision wasn’t so hard. Making sure a child is eating and breathing is a no brainer. SMA or not.
SMA’s challenges suck, but life doesn’t have to. Hearing your baby is terminal is nauseating. But we all are terminal. It’s life. No one is promised tomorrow. We all have different needs to keep us healthy and thriving. I don’t believe anyone should assume anything based on the way things look. Our family’s life may be different than most, but to us it’s normal. It’s all we know.
“No it’s not,” I responded and handed her one of our awareness cards.
As a mother, my job is to take care of my children, and that is what I do and will continue to do every day for the rest of my life — no matter what. Our circumstances may not be “appealing.” Not many would want to be in our shoes. But if you were to try them on you’d see the world through our eyes. An amazing world full of raw meaning: beauty, blessings, love, miracles, struggle, strength, perseverance, bravery and will power.
And that makes everything worth it.
The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.