We are asked all the time, “How can we help?”
Our daughter Callie is a lower limb amputee and walks with the help of a mermaid print prosthetic running blade. She also has a chronic heart condition called tetrology of Fallot that she has had two open heart surgeries to combat. She is a beautiful little mosaic of scars — her light shining through them.
But with managing her multiple appointments, therapies, surgeries, prosthetic adjustments, insurance documents, medical bills and life hurdles, sometimes we struggle. It can be so overwhelming, scary, time-consuming, financially crushing, an emotional overload, and a logistical nightmare. Parenting is already an exhausting job. Parenting a child with disabilities can take that exhaustion to a whole other level.
Here is a list of some things that people have done for us that have been so helpful to our family. I share these in hopes that if you have someone in your life in the same situation, you can show up for them in one of these ways!
1. Ask how you can help — and then just show up. We have had so many people just show up for us and they have been lifesavers. When I’m in the thick of it, I sometimes can’t articulate what I need. But if someone shows up, they can look at the situation and step in to help. Whether it be showing up at my house and helping me with the mountain of laundry they see, or showing up at the hospital and getting food after seeing I haven’t eaten that day. We had friends come over and cut our grass! Simply having those extra set of hands have never been taken for granted.
2. Feed us. This one is so easy. Send gift cards for restaurants. Set up a group to make meals for when we are in the hospital or at home recovering. Drop by with dinner. Use one of the meal delivery services like Door Dash, Grub Hub, or even Hello Fresh. Go pick up some basic groceries because you know it will be hard for us to go to the store with a kiddo in a wheelchair.
3. Make a care package. Several times when we were in the hospital with Callie, our friends and family made us care packages. They included things like soft cozy pants for Callie (because those hospital gowns are never comfortable), slippers for me because my feet are always cold, books/stickers/bubbles/toys for Callie and snacks for the family. They were a little reminder of “home” and our normal life. They were also a little beacon of hope during the day and something to keep Callie occupied while we spent long days in the hospital.
4. Text or call us, but understand we might not answer right away. Those messages mean the world to us. We might not be able to respond right away, but knowing we are in your thoughts uplifts us during those dark hours. There would be times when we would be having a really bad day and I would read back through the sweet messages that were sent to us. When Callie got old enough to understand, we shared them with her as well.
5. Come give us a breather. This one was hard for us to get used to accepting, but so important. We had a hard time leaving Callie and even acknowledging that we needed a break. We needed them though — whether it was to reconnect with each other or to simply rest. One of the best things anyone ever did for us was to come watch Callie so we could have that disconnect. Sometimes we used that time for a quick date. Other times we simply used it to take a nap or go work out. Either way, the little time outs were such a blessing to us.
I hope some of these tips are helpful, not only to the people looking to help others but the parents themselves. Share this list with the people you love to give them some insight into what you need!