I know, I know. I’ve been really slacking on writing blog posts. To be honest, I simply didn’t feel like talking about Wyatt anymore. It’s such a bitter sweet tool. This blog started out as my own personal therapy session. I could put in writing any and every thought that crossed my mind. I didn’t have to hold back and it allowed me to process all the ups and downs of this thing called CCHS. While this blog certainly has served its purpose and today I even hope that this naked truth of my emotional roller coaster ride can help someone is this world, it has now become a tool for me that can also easily backfire.
When Wyatt was first diagnosed, all the other families affected by CCHS told us, the first year is the hardest and then it gets easier. What no one told us was why. So here’s my viewpoint so far having surpasses that one year mark by a couple of months now. I think the term easier is misleading. Having a healthy infant is hard. We have to get to know that new person, their likes and dislikes, their personality and what life changes that will entail. As exhausting and sometimes isolating as it may be, every new accomplishment of that perfect little human being seems worth a celebration and we can’t wait to see when the next milestone is going to be reached. Having kids turns us into this whole new person who almost overnight becomes less concerned with their own personal goals and suddenly feels the urge to tackle the world in the best interest of their child. Having any subsequent children, we start to have less and less time focusing on all the little accomplishments and shift more towards tackling the bigger battles such as what school to choose. Now consider having a child like Wyatt in the mix of that already challenging balancing act. Initially when we got the diagnosis, it almost felt like a relief to me because at least the medical problems that remained a mystery for so long finally somewhat made sense. Somehow putting a name to it made it all just a little bit easier to deal with. While waiting for several weeks for the test results of course, I had already done my research on what such a diagnosis would mean and what future medical options we might have. I felt prepared even though my mind played tricks on me every second of every day wishing for a medical answer yet hoping I’ll magically wake up from this nightmare. Once we got the answer that we were and were not hoping for, I went even further into overdrive mode. Now the practical aspect kicks in of learning everything there medically is to know so that I can adequately take care of the daily needs of this special child. There wasn’t really any time to reflect and process what’s going on. The complete load of that freight train of emotions hit me much later after we were already settle in at home for several months. One day something seemingly unimportant just opened the flood gates. Suddenly I realized, to no fault of my own but simply out of necessity, I was so busy juggling the medical needs of this one special child and chasing the next hopeful treatment option that I didn’t really even know who that person who’s living in our house attached to all the medical equipment was. I suddenly realized how much time taking care of that one special child has led to me missing valuable time with our other children, how much we all had to give up to be where we are today. The first year is the hardest not because of all the medical reasons. Sure, those are challenging and come with their own up and own emotions. But what was the hardest for me was to take the time to grief the loss of my hopes for my family’s future and accepting what is, the unknown. I had to learn to accept that doctors are not the heroes with the magical answers and cures like most of us were taught when we were young. With such a rare and not well understood diagnosis with an unclear medical treatment plan, doctors don’t know anything. In fact they are even scared of your child and we as the parents are all alone in making the right medical and non-medical decisions. Looking that fear in the eye and believing that the unknown and the loss of control are not my worst enemies, that took time. Hell, I still fight the battle in my own head sometimes. That’s what makes the first year the hardest. The first year was very isolating because we were just treating water and didn’t even realize that we were losing a part of ourselves. If I was not dealing with insurance, medical equipment or yet another medical challenge, I was busy contacting every researcher and other affected family. While it is great to have those contacts and that support system, I’ve also noticed that because of my personality it can become a downward spiral. Not even the most experienced specialists nor the CCHS families who have been living with this condition the longest have clear cut answers. Just like a healthy infant, each child is so vastly different. I had to learn to stop looking for answers and stop looking at my child medically and stop over-analyzing every move he makes. Instead I had to pay attention to who he is as a person and how we as a family could repair that unintentional disconnect that slowly marched in between us over the last year. In my darkest days I realized that I will not be a good mother to any of my children nor a good wife to my amazing husband if I only focus on life with CCHS. Since I am an all or nothing type of person though, that meant I had to let go of doing research and making treatment plans which is the complete contrary to my hard to break habit of always having to have a plan. It takes a huge amount of effort for me to simply live in the moment and not make comparisons to the way things should have been. Coming to that realization and taking that dive into the deep also known as leaving my own comfort zone, that’s what made the first year so incredible hard for me.
I can’t say that I have succeeded in putting that realization into action just yet but it’s work in progress. This is the reason why I haven’t been posting on here much anymore. I have to make the conscious effort to get to know my four children all over again for who they are today. I have to ask out loud for quality time with my husband so we can get to know each other all over again in the middle of our new life together. I also have to speak up and demand time to myself so I can figure out who I am now instead of trying to chase down who I used to be. So here I am making the first step.
To all my friends and family out there: I know you care and I am sorry for previously turning down your efforts to help. I’m not good at asking or accepting help, nor do I even know exactly what kind of help I could use. I will work on that. It must be difficult for someone on the outside to know what to say or do. Sometimes the best help is to simply be there. Even if it hardly ever works out, please don’t give up on offering to include me or my husband in get-togethers. Don’t worry about how much effort it would be for us, suggesting a play date or a cookout is still a good idea. Discussing parenting or career issues is actually nice because in the end we all face similar difficulties. So let’s face the world together again!