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Why I Ache for and Fear 'Normal' All in the Same Breath

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“Maybe soon, you can go there on a day date!” The statement was said with good intentions, but it brought out a large sigh in me, and it stung a little. I smiled and shrugged it off. Explaining would be too much. While I would love to go on a day date with my hubby, it’s not happening anytime soon. It hasn’t happened for nearly two years. We used to enjoy outings often, and I was so proud of the way we have always “dated” each other through our marriage, but after our daughter, Nella, was diagnosed with a terminal neuromuscular disorder, and she became weaker, and weaker, our dating days were over.

Nella was diagnosed with spinal muscular atrophy (SMA) at the age of 11 weeks. It’s a terminal, neuromuscular, degenerative disorder where babies get weaker and weaker. Nella can only move from her forearms up. She needs us for every single thing. She’s lost her ability to swallow, so she needs frequent suctioning, and because her lung muscles are so weak, she must sleep with the help of a ventilator, via a BiPAP mask, and requires intense breathing treatments several times a day to keep her lungs clear and healthy. She needs intense 24/7 care, and my husband and I are the only ones who know how to do it. Despite her disease, Nella is incredibly happy, sassy and so smart. Her mind is unaffected, and there are frequent tantrums over toys and princess pajamas.

We also have a healthy 4-year-old son, Bowen. He’s incredibly bright and social, and he takes such good care of his sister. But his life is hard. In absolutely no way do we live a “normal” life. Our life, pre-diagnosis, consisted of playgroups, church groups and tons of outings to the library, the park or just to walk around Target. Loading up in the car and going anywhere was a breeze. We didn’t stress about going to a birthday party with several other kids during peak cold/flu time. The constant colds all winter long were never a big deal. You see, Nella’s life is threatened by a simple cold. We go into “lockdown” during cold and flu seasons and go to extreme means to protect her.

I often ache to just be able to load both of my children up in the car and drive them easily to the playground without having to pack up an entire mini ICU. I ache for the days of being able to go out on a date with my husband. I ache for the days when my son came home with a cold, and I didn’t have to send him to his grandparents and put Nella into quarantine to keep her healthy. And more than anything, I ache to be able to grow our family, but being carriers of a recessive genetic disease, we have a 25 percent chance of having another child with SMA, and those aren’t odds we feel we can chance.

We spend a lot of time at home as a family. And while I know these are precious moments together as a family of four, it’s still undeniably hard. I am home a majority of the time alone with Nella. I take her out on car errands here and there, but I don’t take her in to the store by myself often. She’s too fragile, and I like to have an extra set of hands in case there is an emergency. I often feel like there is an entire world outside our home that I don’t know anything about. 

But I deeply, deeply fear normal, because I know one day, we’ll have that “normal” back. If my daughter does not get her miracle we so desperately pray for, she’ll go Home. And we’ll be left behind. We’ll be free to go on dates, go to church and get germs without consequence. And I know I will want to go back to the “SMA normal” we had before, because it meant she was here. It meant we were still a family of four. It meant she was still in my arms.

Author and her family laying on the couch together

I hope that by me writing this, you don’t feel like our life is miserable. It’s most certainly not. Ninety percent of the time, I’m enjoying this hard but beautiful life. I thank God for what I believe are His blessings and tiny mercies all day long, which brings me joy. And if you asked if my family was happy, I would smile and tell you, “Yes, we are blessed.” Because we are. We have the most amazing family, friends and followers of my daughter’s journey. I know we — and especially Nella — are loved beyond measure.

Originally published: August 27, 2015
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