Watching my husband for the last two years and seeing all of the changes he has attempted (some successful, some failed), some good, some bad. I realize that I have silently been on a journey of my own. I will be turning 35 in 6 weeks and I am the proud mother of 4. By my next (36th) birthday I hope to have finalized the legalities with my husband after our 10 year marriage, and that our journey as friends will have developed to a place where we can peacefully and pleasantly co-raise great kids (I wrote 4 great kids, then 3, then 4 and have decided to cut the number out because it sucks to write 3 when you currently have 4 children).
I became a mother at age 21, by choice. I’ve spent the last 14 years raising children and focusing on my kids and lots of things (and taking care of people) other than myself. Since Rachel’s diagnosis I’ve spent a lot of time organizing her care (medical/educational) and I’ve been working super hard to give all 4 of my children awesome experiences to ensure that my 3 unaffected children look back and feel they had a good childhood. I’ve also worked at raising awareness for Juvenile Batten Disease (Batten Disease in general) and have raised thousands of dollars. It has been important to me to do this because her disease is 100% fatal and I can’t look back on this and wish I had done more. Medically, there is nothing I can do to cure her, I need to do what I can to help others that will be dignosed in future. If gene therapy starts working, there is a chance that with more research and funding they will be able to provide a treatment for this disease.
Within the last year or so I started to look at myself and I’ve made some changes (slowly, very slowly) and sometimes it has been 2 steps forward, 1 step back. Lots of silent tears have been shed, lots of nights I went to bed early because, as we have all experienced, some nights are easier cut short rather than stay up and wallow.
I’ve spent more time with my friends, got back into Jeeps (<3) and started eating better. I recently started seeing a new therapist who is helping me transition into the next stage of my life and last week she asked me where I want to be at the end of this. I quickly rattled off my answer to her and the look she gave me made it clear she really wants me to think about this. I realized that while I can fire off a short answer, I deserve to think it through and come up with a longer, more detailed answer. A picture for my future. I know the picture includes me in flip flops with toenails matching my jeep with kids at my side, but the rest is pretty blurry. I’m looking forward to wading through that fog and sketching out a clear drawing then coloring it in as time goes by.
Life is good, even in the midst of struggle, hurt and disease. Life has been very good to me.
Let us toast to our lives with this merlot snow cone that my 6 year old suggested to me at a birthday party for the remarkable baby Charlie. It was a great idea, Boston.