A Custom Sock for a Special Girl
We got such an incredibly thoughtful surprise, which reminded me that despite all the scary and horrible things that are happening in the world, there are good people and good stories.
Our daughter, Everly, was born with a congenital heart defect. She had her first open heart surgery, a STAT 5, at just three days old. She had a total of three open heart surgeries, two cardiac catheterizations and one infection surgery before her first birthday. Although we’ve gotten almost a year “break” from open heart surgeries, we know there are many, many more in her future because there is no cure for CHD.
Today’s story doesn’t focus on her heart directly. During her first hospitalization, she had an IV that leaked out into her foot. This led to the appearance of a huge and yellow open wound on her foot for almost the entire first year of her life. It resulted in lots of extra appointments, painful dressing changes, new specialists and new medications.
Although we’re grateful this was the biggest complication she had after her first major heart surgery, it was one more thing on a long list of things we had to keep an eye on when we brought our newborn home.
While the most important thing to fix is her heart, as a mom, I do wonder if the infiltration injury will impact her in other ways. What if her feet are never the same size? What if she has a large scar and is embarrassed? We’ll cross that bridge when we come to it. But for now, we’re happy that she’s alive because of the care she’s received. A scar is a small thing, comparatively, when her heart condition is literally life or death. We’ll work to find beauty and strength in the scars because they are a symbol of her will to fight.
Fast forward from the infiltrate almost two years ago, and Everly’s right foot is still larger than her left. There also appears to be some nerve and circulation issues as she doesn’t like to keep a shoe on that foot and bangs that foot repeatedly when walking. Everly’s team of specialists decided that we should try a compression sock.
A few weeks ago, we met with a CPed/LPed who measured Everly to have a custom sock made for her. She shared with someone at the company who was making the sock all about our little fashionista Everly and how I was worried she wasn’t going to tolerate it well. At our first appointment, I asked if we had color options and she said she would ask. However, she thought it would just be a plain, nude sock.
I got a call two weeks ago that the sock was in. To be honest, I kind of dragged my feet about scheduling the appointment to go in and get it. It was 50 minutes away, and we had fun summer plans and nice weather in the days ahead. Remember, this was our first summer in two years without an open heart surgery scheduled, and Everly had finally been cleared to get out of the house and meet family and friends.
We walked into the appointment and the CPed/LPed surprised us with a beautiful custom sock. Not only did it have pink stitching, but it also had butterfly patches. Someone had gone out and bought a baby doll with butterflies on her clothes and made Everly’s doll a sock that matches.
Can you believe this?! Some stranger who doesn’t even know us thought of all of this. I was just truly blown away.
We’ve been lucky enough to have the very best, most compassionate medical team for Everly. They love her like she is their own. But this lady at the compression sock company didn’t know us or Everly. She hadn’t had the opportunity to spend time with Evie and fall in love with our little sweet and spicy firecracker.
Sometimes, the days feel hard, and it’s tough to watch/hear what’s going on in the world, but then something like this happens and you remember that there are a lot of really good people out there. I wish we could hear more stories like this.
Please note: We are so incredibly grateful there is something that can be done to and for Everly’s heart. We are so grateful for all the doctors, nurses, clinicians, etc. who have dedicated their lives to finding a cure for CHD. It’s not lost on us that had Everly been born a few decades ago, we wouldn’t have had these two beautiful years with her so far.
While taking care of Everly’s foot is hard work, and she is not thrilled with wearing the compression sock, we remind ourselves of our family motto, “We can do anything for a short time.” We remind ourselves how lucky we are for every single day and moment with her. Everly will be two in about a month and is thriving thanks to advances made in CHD care.
