Jess and I thought it was time that I wrote an update for Hope for Mattie in order to give another perspective of what it’s like being a parent of a child with special needs. It’s weird just saying that out loud. I find myself telling random people when they ask if I have kids. I don’t know why I do it, perhaps because it dominates so much of our lives that I can’t just say “I have a daughter”. Lately I’ve been making a conscience effort to not describe her as having special needs.
For those of you who have not yet had the pleasure of meeting Mattie, she is an extremely happy baby. She’s always smiling and happy to see a familiar face. She’s making a lot of funny noises right now as she tries to figure out how to express herself. She also cracks up laughing at the most random moments, which can be pretty funny in itself. In the mornings when I go to get her out of bed, she always greets me with a big wide grin and a high pitched squeal. Upon picking her up she will take a moment to rest her head on my shoulder with her arms out wide as if she is giving me a hug. This is the best part of my day.
This past year has been a blur. Time seems to move really fast and it seems like there is never enough time to really soak everything in. I’m not sure this will ever change as the thoughts and emotions we deal with greatly vary and are constantly changing. By the time I’ve thought about something long enough to organize it in my head and figure out how I’m going to mentally deal with it, five other thoughts have crept in. To me, that is the most difficult part of all of this-mentally accepting and dealing with everything. Sometimes it’s like being shell shocked-you feel numb and outside of yourself. Thank God for my wife! She is constantly doing things to help Mattie, from researching new therapies to organizing her doctors’ schedule(s), Jess is amazing. While I worry that she’s going to drive herself crazy in the process, there’s no denying that Mattie is so, so lucky to have Jess as her mother. I’m very confident I could not do this without her.
I know this is a blog about Mattie, but I can’t talk about her without bringing up Joba. The resiliency he has shown through all of this is nothing short of remarkable. Between all of the doctors visits and the weekends away from us while we are inGainesville, he never skips a beat. In a weird way he has made this whole process easier, providing comic relief, laughter and a well needed hug at the most desperate of times. Without him I would have lost my sanity by now. He’s also a great reminder that life goes on, regardless of the difficulties that we face.
Lastly, there are all of you-the family, friends and perfect strangers that seem to pop up just when you need them. The outpouring of support has been truly uplifting. Please know that Jess and I really do appreciate everything that has been done to help our family through this past year and a half. As we look to an uncertain future, Hope truly reigns supreme.