I am a dirt bag mom. That is all I could hear over and over the whole way home. I could not wait until we got to our house so I could go into my room and sob. For real. How did I not see all this? Why was I so unaware of these challenges my kid was having? I feel like I pay close attention and am very engaged and involved on a daily basis, yet I didn’t really see what was going on. I didn’t get it.
It is hard to have a child with a chronic illness. There is just so much that comes with it. You always have to be “on”, aware, proactive, reactive, flexible, strong – the list goes on. It is quite a ride. Just when you think you have it down, something (or everything) changes, and you are back to figuring it out again. The situation around here used to be a lot more turbulent, a roller coaster ride for sure with us never knowing when something was going to hit requiring us to go back to the hospital with our daughter and what felt like constant upheaval for our family. Her body was in constant struggle, and we were working regularly with the doctors to to figure out how to get things more stable for her, changing up her medications, and regularly assessing her situation to confirm whether more serious underlying issues were emerging such as strokes. It was clear she was not doing well. You could tell by looking at her. It was painful as a parent, a very helpless place. But, it was something we became used to and knew how to function in. It was our normal and we got quite good at the crisis management and hospital protocol/preparation. I even had "hospital clothes" that were comfy and ready to go just in case.
Then, by the grace of God and with some key medication and treatment changes, things began to level out. Hospital stays became fewer and fewer and we were able to move into a place of more stability at home. That is not to say our daughter was without challenges. With a chronic illness, rarely are you issue free. Often the victory is merely staying out of the hospital. I consider that a victory for sure. It is a gift to be able to manage the issues at home, to be able to stay home as a family. The downside of moving into this new season is that it, for me at least, was somewhat misleading. In the calm, I didn’t see what else was going on.
My daughter has shared many times that she wants people to understand, but she does not want to be treated differently or pitied. Often times, her classmates and friends forget she even has an illness. She looks like she is capable of doing the same things as them. She is mobile and does not require walking assistance. She “looks normal”. She likes it that way, but is does come at a cost. When you look normal, people expect you to be able to function in the same way. YOU expect yourself to be able to function at the same level as others. The fact is; however, you can’t.
Sometimes even I forget. That is so crazy to me. How could I forget? I have been dealing with the reality that my child has a chronic illness, mitochondrial disease, for years. I have read all about it, educated others, and advocated on behalf of my daughter and others with the condition. I know all about it and what can come with it, yet my eyes betray me just as her body betrays her.
I sat in these appointments with her and just felt sick. Not because the specialists were telling me there were issues, but because somehow I missed much of them. Not only did I miss the difficulties, but more importantly I missed her. I am her mom and I didn’t really see her and what she was experiencing. Dirt bag mom, that was me.
Evaluations by the specialists validated random things my daughter had been saying for a while and brought to light things she had kept quiet, either hiding or working hard to compensate for. She had struggled in silence not wanting to be different or less than. If she didn’t say anything, people wouldn’t know. She could hide it. The difficulties may seem like no big deal to some, but to her, at 14, they were everything. They were things that set her apart, made her feel vulnerable, and caused her to feel she could lose everything. The fact is she was already was losing things. Though she was bright, school was so much harder. She was now struggling to tie her own shoes, cut her food, and complete other tasks that involved fine motor skills. Her ability to visually track had decreased to that of someone half her age. Her coordination had decreased. Her ankles, wrists, knees and other joints were extremely lax which was why she often complained about them and had such a hard time recovering from a minor ankle injury a while back. She had increased spasticity, hypotonia and other muscle related issues. The list went on and on. And after it all, she and I sat through a surreal appointment where we got to listen to someone walk her through adaptive recommendations and tools that were deemed necessary to both support her and prevent some things from getting worse.
My daughter felt so many things– embarrassed, exposed, weak, scared. “What if I lose everything mom? If I am already losing things, how do we stop from me losing more? Am I going to just keep on getting worse? Am I some day not going to be able to do anything?” My heart, her mama’s heart, just broke in half.
How do you even answer what you do not know? Because the truth is, I have no idea what is going to happen. I didn’t even really grasp where things currently were then. The reality is I still don’t know. No one does. It is each day at a time, working through the now, continuing to be thankful for the more stable medical situation while being mindful of the new found challenges. It is keeping the dialogue going so we are aware of how things are progressing, for the better or worse, and making sure she has the support she needs. It is about maintaining a safe space for her to communicate exactly how she feels and respecting the fact that while her mitochondrial disease affects us all, it is Her Story. It is about reminding her that no matter what her situation, what she loses or gains, what newfound challenges come her way, she is amazing, strong, beautiful, loving, worthy, and special. She is not her illness. And it is about trusting God along this journey for guidance, peace and wisdom.
This dirt bag mom knows that she needs to give herself some grace. I tell myself I can’t know all or be all in this or any situation. I am just "a mom" doing the best I can with what I have where I am. I try to listen to myself. Some days it is easier than others.