Relearning to Accept My Chronic Illness Symptoms as a New Parent

I’ve been sick for a while now, so I went through the acceptance and grieving process a long time ago. I would even tell people that it was through acceptance and gratitude that I was able to deal with all the things that come with being chronically ill. But no one ever told me that I may have to continually go through that process of acceptance.

I recently had a baby. Since that time, I’ve found myself having to accept all the things about my illness that I thought I had accepted years ago. For instance I haven’t driven a car since 2014, and until now, I didn’t even think about it. I figure out how to get everywhere I need to. I know I can order a Lyft or ask a family member or a friend for a ride. But now, I’m relearning to be OK with the fact that I don’t drive.

I have to be OK with the fact that I’ll never be able to pack my son up and drive him to the park. To sit in the dreaded pickup line after school and take him home. To simply go on a drive alone. To drive him to pick up a gift for his dad. None of those things will happen without someone’s help, and that makes me sad. There’s nothing I can do about it, I will learn ways to get out with him alone, but it does make me sad.

I’m learning how to accept the limits of what my body can do. I learned a long time ago that I can’t physically do everything. There are times when I have to take a break. There are events I can’t always make it to. I’m not able to jump on trampolines and hang upside down on jungle gyms.

I was OK with all of my symptoms — until now.

My son may want to do things that I may not always be able to do. Even at this age, chasing his quickly crawling self around the living room is physically exhausting. But I’m learning to be OK with my body again in spite of its limitations. I remind myself my best is all that I can do and that it’s OK to not be OK. My son will love me regardless, and he’ll see that his mommy always tried her hardest. I don’t have to be at 100 percent every day — I just have to be there for him.

In my son’s lifetime, I will likely have to have major surgeries to treat my intracranial hypertension. It scares me, and it’s a fear I didn’t have before I had my son. I knew I would need surgeries eventually, and I even asked for them at times. I was OK with the fact that multiple brain and spinal surgeries were in my future. I’ve gone through this process 15 times, but recently, I’ve had to accept it all over again. I have to accept the fact if something were to happen during one of these surgeries, my son could lose me. I also fear that I will lose my vision and the ability to see my son.

I’m in a phase of accepting that parenting — which already feels like the hardest job in the world — is likely going to be even harder for me. This phase is something my able-bodied, healthy parents can’t necessarily understand. When you become a parent everything often changes, but in my case, some things are changing, and others are staying the same. I have to remember that it’s all OK.

My son won’t care how we get to the park, and he won’t care if I’ll have to use my cane in order to play with him. He will love me through my surgeries — and any side effects that may arise from them. No matter what, everything will be well, and my son will have all he needs. I will always do my best, I will learn to adapt in every situation, and we will have an amazing life together — even if it looks a little different from others’ lives with their children. Hopefully my adaptation in life will teach my son to do the same — no matter what life throws at him.

I hope you remember that acceptance — like healing — isn’t linear. You often can’t just decide one day that you have accepted something and then the process is over. Life will change, circumstances will change, and you may need to reevaluate your feelings in new ways. Change may force you to go through the acceptance process over and over again, so don’t feel too discouraged when you struggle with acceptance. Face the situation, and do the work to accept what you can’t change. Accept your situation for what it is, and make the best out of it whenever you can. Remain positive and thrive — however that looks for you.