After an exhausting morning of physical therapy, two sisters lie down on the itchy carpet to watch Disney princesses on the TV. Eve can sit up, but she knows sitting is hard for her little sister, Lissy, so she lies down beside her. Lissy is three, but cannot speak yet, so she just reaches across and holds tightly the little nub of an arm her sister was born with. Lissy has no clue that other children are sometimes afraid of the soft nub. She has no clue that it’s not common to see a double amputee daily defying gravity and the expectations of others. To her, she’s her big sister whom she adores, so she continues to grasp tightly. It’s a beautiful moment to watch between two sisters. Two sisters, who have very different challenges and diagnoses, share the unique condition having issues since their birth (i.e., congenital birth defects).
Being a parent to a child with congenital issues is an incredibly messy and beautifully paradoxical blend of challenge, heartbreak, and joy. I am the mother to two children born with moderate-severe issues. Neither of my girls have known life outside of the struggles they face daily. All parents of children with special needs face unique and hard—hard—challenges. Yet one of the unique challenges parents of kiddos with congenital defects face is the cruel reality that our sweet babies have known struggle since the day they were born. From the moment both my daughters were born, they were thrown into an uphill battle as they attempt to learn tasks that, for most children, come easily and naturally. It wasn’t as bad when they were babies. Beyond feedings and bowel functions, there just isn’t much babies have to learn how to do. The sting of my children’s congenital issues began to rise to the surface as their peers began learning new skills. Leaving us behind in the world of newborn cuddles and burps, their friends quickly started crawling, eating, and walking. As our friends developed new skills right on time, their parents would notice how quickly the baby stages flew by. They wanted time to slow down in order to cherish those baby days a little longer.
I know that no parent has ever wished for time to slow down from a place of cruelty or malice, but there are few things in my life that sting as badly as hearing mothers naively wish for what is ultimately, my reality — my hard, challenging, rewarding, heartbreaking, beautiful, reality.
The reality of time standing still means that while others are posting adorable videos of first crawls, steps, words, and meals, being unable to showcase your child feels like a silent megaphone screaming to the world, “We aren’t doing that yet!”
The reality of time standing still means holding your heart steady when you see friends struggling with potty training toddlers and wondering if you will diaper your 16-year-old child and wondering what that even looks like?
The reality of time standing still means embarrassing meltdowns when the words aren’t there and they should be — trying to explain to strangers that your child cannot say her name when her peers are speaking in full sentences.
The reality is, we sometimes feel utterly left behind by time. The days/nights/years start to blur together as progress comes in inches, not miles.
But . . .
Somewhere in the middle of our slow and still progress, we also have a strangely beautiful reality.
A reality that means getting to snuggle my babies long past when they outgrow their baby sizes.
A reality that means getting to enjoy innocent and pure giggles much longer.
A reality that means when we do master new skills, we have an entire village of family, friends, and therapists that celebrates and parties with us!
Our reality has placed us in a unique position. When we reach milestones, we don’t weep or sigh for time to slow down. We embrace the moment, cherish it, and treasure it. We don’t know how many we’ll get, and each victory is sweeter than the last. Perhaps the greatest part of our reality is the fact we are able to celebrate the progress without wishing for the past. We are just in the moment, celebrating in pure joy.
Raising children with congenital disabilities is a taxing blend of hardships and pure love. We rejoice when there are victories and make accommodations when time passes and skills are simply not there. Ultimately, our life is a lot like the scene with my daughters lying on the floor. It’s simultaneously beautiful and sad. But, just like my girls’ lying on the floor together, we do what we do because of love. We truly love our family. It really is that simple. Because we love our family, we do what we need to do. We press on. We work hard. We celebrate.
The Fort Worth Moms Blog hosts 19 Neighbor Groups via Facebook, including the Moms of Special Needs Tarrant County. These groups are free to join and offer online and offline opportunities to build relationships and gain resources from other moms in the area.
Katie Frugé lives in south Fort Worth with her husband and their two daughters, Eve (2011) and Felicity (2014). When she isn’t caring for her daughters she’s working towards completing a Ph.D. from Southwestern Baptist Theological Seminary, writing for various online publications, and working as an advocate for special needs families in the community. She loves a good cup of coffee, a good run, and a good musical. Feel free to connect with Katie via Instagram or her family website.
Katie, I relate to all you’ve said and thank God for each small victory in our lives, too! My daughter was born with a rare disease and we’ve learned a lot about throwing out the rule book and meeting things as they come. Your girls are beautiful!