A day in her shoes- Loving a little one with Trisomy 18

Meet Hannah Sudlow! A wonderful momma I've had the privilege of meeting via social media. She is a busy working mom of two. Below Hannah will share what a day in her life looks like. I'm so excited about this ongoing series that will share in a bit more detail what the day to day of a special needs parent looks like. I hope you'll take some time to walk in our shoes.

If I were to describe my day to someone, having two little ones 10.5 months apart would likely occupy my conversation, more than having a child with special needs would. Although my daughter Evelyn who has Trisomy 18, three 18th chromosomes in every cell of her body, as well as a single ventricle heart, requires a lot of medical care during the day, it’s normal to us.

Evelyn is our first child, she made me a mom. So strangely enough, I forget how abnormal our life, to me, I’m simply taking care of my little girl who requires extra care, and I know any mom would do the same for her own child.

Our mornings start like a lot of others, Sesame Street goes on the TV as Esme, our healthy one-year-old, points and dances towards the screen. During this time, I clean Evelyn’s G-tube site, prime a new food bag with her liquid meals for the day, and administer her morning water flush. As Esme dances away, I give Evelyn her daily nebulizer, which is a steroid to prevent viruses in her respiratory system, and an albuterol to open up her lungs. Then, we see what’s in store for our day.

Three days out of the week, we generally have a doctor’s appointment or a therapy. That’ll dictate a lot of what we do, and how our time at home is spent. If that’s the case, I pack our diaper bag and medical bags and load up. Snacks, toys, and entertainment come with us to make the most of this time. If we have a day at home, we embrace every second of it. My girls love when I read books and sing and dance with them. Their nap time is NOT in sync, go figure! But it ends up being for everyone’s benefit. While Esme naps, I take that hour and a half to work on Evelyn’s therapy goals. We stretch, work on assisted sitting, and strengthening our trunk support as well as our fine motor skills. When Evelyn naps, I use my one-on-one time with Esme to run around with her, teach her objects and colors, and get in our daily snuggles. Any other free time I may have, I am a WAHM (Work at Home Mom) so you can say things are busy!

Evelyn eats every four hours from her tube and gets most of her heart and support medicine at night. Although I may be downplaying it, life really is that simple. If Evelyn’s sick & requires oxygen or more respiratory care, we add that in. We take each day as it comes, and we don’t complain. Life WITH our special girl is so much better than life without. I wouldn’t want it any other way. These are, as Amanda likes to say, Our Glory Days.


1 comment

  • I’m a WAHM too & can completely relate to free time equaling work time! Its neverending, but I love our busy lifestyle!

    Amber

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