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.
Family, hope and love are what is keeping your family strong; right along with the rest of us. Reading all of the behind the scene stories from you and Jess always chokes me up. I hope that you always know the love we all share in our family, no matter how near or far we are from each other! If you ever need anything, please don’t hesitate to ask! I love you guys all so much!
Jim, Jess is amazing, but so are you! Mattie has terrific parents and I know that she will thrive because of it. I can’t wait to meet Mattie and see you, Jess and Joba. You are all in my prayers everyday!
Jim, so nice to hear from you and your thoughts. It is usually the moms who are more sharing of their stories. I believe that the more you talk about it, the more comfortable you are with the situation. I have always been open and shared the fact that my daughter has special needs. It is amazing to then find that the person I am talking to is somehow connected to someone with special needs. I then do not feel so isolated and alone, that there are a lot more people out there in similar situations.
Stay strong and remember that there is a big learning curve and eventually it wont be so hard (until she hits puberty, but thats a whole other story. lol)
Jim, Jess, I’m so proud that you guys are my family…
I have yet to meet sweet Mattie, but I do know she is surrounded by the greatest people, most notably, her parents. The Patrick family send their love, support and gratitude towards such an inspiring and beautiful family.