Avleigh's Journey

We are constantly in and out of doctors appointments. From pediatrician to neurologist, genesis, orthopedic, physiatrist, Ophthmalogist and the list goes on and on. Each appointmemt we begin by giving a preview of what’s happened since the last visit to the nurse. Most of the time there are also med students that will come in to get the overview all over again as they are trying to learn more in these speciality areas. Then we finally are able to discuss the same things we just spoke about two or more times within only a few minutes. Of course our conversation with the specialist is much more in depth and that’s were my questions get answered. But there was one appointment that has marked me.

After a long morning of appointments, we once again were sitting there waiting for her last doctor to come in. We had already given the overview to her assistant. Avleigh had fallen asleep on my shoulder as we waited. The door opens and both the nurse and her specialist walk in. She began by confirming the information the nurse had gathered. Then she sits on her stool and rolls it right in front of me, gently placed her hand on my knee and asks “How are you doing, mom?”. For once I was lost for words. I wasn’t expecting that question. Everything on my mind for appointment days is Avleigh and how she’s been. So I sat there with a blank on my face and just responded “Good, I guess”.

As parents of special needs children we often get lost in their world and forget to listen to our own needs. I am one that will tell anyone you have to take care of yourself before you can properly care for another. But in that moment I was just lost. Why does that simple question that I couldn’t answer bother me so much? I know I do my best to care for myself. I take time to myself 2-3 hours a week as my “me time” whether it’s at the gym or an extra long bath. I have time with my friends, not as often as I used to but still make time. So why when I’m asked how I’ve been I’m so lost for words?

So I’m now months later and I’m still sitting here really thinking about what that question means for me and all I can think is “I’m scared to death!” I’m afraid to face the reality of my daughters prognosis. I’m afraid of each of these appointments and what will come of them or what they will unveil. When your child has a terminal illness you are constantly reminded that things are totally out of your control. Any day, anytime this ugly disorder can take her away from us. I fight with all I have to stay ahead and give Avleigh the best treatment and care possible but will it ever be enough? I know I’m giving it my all and making the best decisions with the information at hand. The rest just I have to leave up to god. He has blessed us with this little angel and she has given so much inspiration and strength to not only myself but everyone that crosses her path. She is what keeps me strong and helps me put this fear in the back of my mind.