Stephanie Cooper 2022

My experiences and stories are never meant to be a comparison or measure up to what others have been through. I am so sorry if you have ever lost a child, and my heart is heavy for you. I warn you that you may not want to read past this passage. My story is one of expression, never comparison.

This is probably the hardest blog post I have ever written, but it is itching at my eyeballs to be on a screen. It has sat in the "drafts" file for four weeks. This is going to take some raw transparency. So I am here to write about my "almost fear." I live with it daily, and my future self worries, too, even though I do not yet know her. I worry for her now. I worry for her, then. I worry for her in her afterlife. I remind her not to bear the burden of fault for two sick children, for the circumstances surrounding their illnesses could not possibly be her fault. Their pain and struggles weigh heavy on her all the same.

I was told I had two copies of the MTHFR C677T mutation during my second pregnancy. One copy of this mutated gene is pretty standard; 50% of our population has it. It is when you get handed 2-3 of them that it gets complicated. Unfortunately for me, I had no idea until 2015. For me, migraines/fatigue are my most prominent symptoms. I started a new B-complex vitamin with folate (my body cannot break down folic acid), and it helps when I take it. I've tried hard to avoid migraine medication and am still on that path. However, under the surface, it does affect my body in ways I will not be able to see until I age some more. An increased risk of blood clots and a threefold risk of premature cardiovascular disease follow me around like a ball and chain to my ankle. I will never be able to leave these kids behind without me. I recently bought a book about getting things lined out for your special needs child because I am so unprepared. I do not plan on leaving this earth anytime soon, but I have to know they have money and somewhere safe to go. My biggest fear is for Rey to go into a facility at a young age, and I will spend this year with my family and a lawyer making sure that never happens. Just learning to relax for me is not easy, but I try. Knowing my condition directly caused what is wrong with my son, and my poor daughter not only had to suffer from my condition but has an additional, unrelated disease, IS.SO.HARD. I knew nothing about any of it. It just happened to us. There was no way I could have known or prevented what had happened.

I have spent so much of the last 13 years in hospitals, and I know my time there is not over; just been postponed for now. New ages will reveal new issues, and medications will build up resistance. Either way, I will be at their bedside with my hand out and a warm blanket to wrap them with. They will never know the fear of being alone, being neglected, or worrying if someone is coming to see them that day. They will always come first. My rightful place is standing next to the IV pump and muting it before it is my place to sit in a classroom, on a couch, or anywhere else. I will give up everything before I give up the time I have with them on this earth. I sometimes feel guilty for working; however, I need that for my mental health. I have been calculating how old Rey will be by the time I can retire without penalty. She will be 28 (without penalty) and 25 (with penalty). She can attend school until she is 21, and those seven years are my worry. To make things worse, I got lost in a thread of moms for the disease she has and got carried away with the number of comments stating many of their severe epileptic children were gone by 25. I think to myself, will I work so hard away from them for years to reach 28, and none of it even matter? The only thing that mattered was her time out of high school when I was at work and NOT with her. I would never forgive myself. That is a thought navigation I cannot follow; it's too debilitating.

The fear of being "almost gone" stems from the fear that you aren't promised time with your children. However, it is a little different because you have watched them almost leave. You were fibers away from your whole life-changing. Unfortunately, I have had this happen with both of my kids.

One early weekend morning in the ICU, after an easy surgery turned severe, I woke up to loud alarms, the ones no hospital mom ever wants to hear. I was alone because the ICU allows one adult to sleep in a chair overnight. The feet shuffled in, and the rest seemed like a blur today. Aiden's lung collapsed, and he spent the next four weeks hooked up to that tube with no luck when they tried to remove it. Even when they could, the weeks of his withdrawal from morphine were almost just as painful to a mother, and we ended up being there for months in total. All of his issues heightened my awareness, and now that I deal with more from Rey, I am glad I have some scars on my hands. That way, when I grab the hot pan, it's not as painful as it could be for a brand-new mom.

This last Friday, Rey had another significant seizure and was sent to the ER. Usually, I am calm and collected. I can keep my composure in dangerous situations and compartmentalize what needs to be done. I don't think I have that ability anymore, and I have to try to find a way to be okay with that and not deduce it down to failure or weakness on my behalf. My hands started shaking as soon as she had the seizure, but I held on well enough to administer the rescue medication. I did better in the past, but currently, I still remember Jan 18, 2022. It was the first thing I thought about, and it made me terrified to walk through the hospital's double doors again. I don't think I will ever forget what I saw last year, and it is still a crystal clear picture in my mind- it is not a blur. Your slumped on a gurney, blue-hued child is not so quickly whipped away. When it happens, it honestly feels like you are in a movie, and it just isn't real. Early Saturday morning, we were sent home and found out later they never even called the on-call Neuro Doctor at Memphis!!! The paperwork said "Generalized seizure--Child has poorly controlled and medication-resistant epilepsy." Anytime she is too quiet and I "think" I smell vomit in the hallway as I walk back, panic sets in. It happened to me just this morning. It took me a bit to come back down, and it was just my mind playing tricks. When I do that, it is like hitting a brick wall, and I'm back to Jan 18. She continues to be happy but lies around more while clumsy and exhausted. Her dark, sunken eyes tell a story of things we cannot see. I see it, her teacher sees it, and her therapists do, but I feel like no one in the medical field cares. However, I know that is not true and they do what they can. They have been responsive and fast acting in Memphis for the last week. We have to go back on Tuesday again.

My biggest challenge is that I have to accept that I have a child with a condition that is not curable nor can always be controlled with medicine or therapy. Aiden's issues had clear, solvable problems. I search for validation, an answer, or a fix, and there isn't one. I am someone who very much likes to be in control, and with her I have none. In the end, I think it is some journaling with hard truths that might get me through it and to a better place. I have to give away thinking I can control the outcome of everything because I can't.