Have you heard the song, "I Won't Give Up", by Jason Mraz? I think he wrote it for me and Owen. I haven't completely lost my mind, I do realize it is intended as a love song, but with just a few simple tweaks of wording, it could easily be my ode to Owen. Listen to it- I challenge you not to tear up.
Over the past few days, that is the mantra in our house. Owen is just a roller coaster. He has had a string of days with his typical irritability. It is exhausting. We are exhausted. Sometimes I wonder if he is being as bad as we think he is, or if our tolerance is just so skewed after 10 months of screaming, that we have nothing left to give. When he starts up, Pete and I just look at each other like, "You take him? What, it is my turn? Oh Owen..." Compound this with how sorry we feel for him...why has he been dealt such a terrible journey? When is it going to end?
We have successfully captured some of his irritability and I would say his quality of life is tremendously improved since last Fall, but there is still tremendous room for it to get better. He remains at the developmental state of approximately a 1 month old. He continues to have seizures. The positives are: we have seen smiles and even, when vigorously tickled, giggles. We never dreamed we would see Owen smile and it is a great sight- he uses his entire face- much like Jack Nickolson's Joker from
Batman.
From a diagnosis standpoint, I feel lost. Is it really possible we will never know what is wrong with Owen? We are still waiting on the cholesterol test (yes, we are over a month now...does it really take that long to test for it??). When that comes back, assuming it is negative, what is next? His doctors are at a loss and have tested for everything that fits his profile. I am not a neurologist nor a geneticist, so I am stumped at this point. When we first received the news about our son, Pete and I both anticipated seeing a rapid decline in Owen. Through medication, we have been able to organize him and allow Owen to show us his personality. I am tremendously grateful for this because I will always truly know my little guy no matter what his future holds. I couldn't say that back when he was two months old.
But what does his future hold? I cannot stand the unknown. How do I plan for his future and the future of our family if it is just a giant question mark? We are doing our best to enjoy each day and be thankful for each memory we create with Owen by our side. He is growing, slowly, but he is getting bigger. At this point he still requires a tremendous amount of holding. In two years, am I going to be writing a blog about how I carry my two year old around the house because his intense irritability will not allow us to put him down? Will we have a chiropractor living in our house?
Owen desperately craves human contact and it often is the only thing that seems to calm him. It doesn't have to be his mom, it often just needs to be a warm body and soothing
shushing. When we are out, I stare at kids in wheelchairs. Have you noticed them? There are a lot of sick little kids around. I stare for a different reason then others might stare. I am looking to see if these kids are happy. I just don't see how Owen will someday be pushed in a wheelchair independently and content. These children might not be happy in the true emotional sense, but they are by no means screaming and arching as I envision my little Irishman to do when put into his chair.
As long as Owen continues to fight, I will fight right along side him. My mission is to give him every positive experience he can have while he is with us, whether that is 10 more months or 10 more years. The details of how we can keep up the lifestyle we are living with Owen frightens me. What is the eventual toll going to be on me, Pete, and Ellie? On our marriage? I have no idea, probably not good if we continue living the way we are for years on end. It is very hard to see the light at the end of this tunnel. For now, I will just keep fighting for Owen, I won't give up.
