One of the most difficult things about being the parent of a special needs child is that progress isn’t linear. There are periods of time when Mattie seems to be improving in leaps and bounds, followed by months of seemingly static capabilities. This result’s in a constant emotional roller coaster: feelings of elation when things are going well; and downright depression when they aren’t. You see, as parents our efforts don’t change, they are constant and all encompassing. Jess and I have devoted the vast majority of our time, money and energy to improving Mattie’s prognosis, with the hope that one day, these efforts won’t be necessary. But it’s difficult. Time seems to exist in snapshots, from one therapy to the next. And sometimes I get so caught up in what we’re doing, that I forget why we’re doing it.
The end of the year provides a fantastic opportunity to look back at the year and attempt to put our efforts, as well as Mattie’s progress, into some perspective. In 2013, Mattie was able to attend:
96 ABM sessions
20 Occupational therapy sessions
21 Speech therapy sessions
27 Early intervention sessions
10 Gymboree group visits
17 Hippotherapy sessions
4 Craniosacral therapy sessions
1 MNRI session
Wow! When we added all of this up, we were astounded. The logistics of getting to all of these therapy sessions was no small feat, and included 4 out of state trips. Mattie also went out of state in October for SPML surgery to reduce the spasticity in her legs.
2013 was a great year for Mattie. At the beginning of the year, her primary mode of transportation was rolling around. This past year Mattie first learned how to army crawl, then later developed her “frog-hop” (patent-pending). Mattie also learned to sit up on her own, albeit in ways you and I wouldn’t even think about attempting. Mattie’s biggest progress this past year came in her language and cognitive skills. A year ago, Mattie could only say a small handful of words. Now, Mattie is capable of talking to you in 4 -5 word sentences. The other day when I came home from work for lunch, she exclaimed to the nanny, “I want to play with my daddy!” It was the highlight of my week.
Just recently Mattie has started to develop her sense of humor. One of her favorite games occurs when Joba jumps on my back. The conversation goes like this:
Me: Mattie, is there something on my back??!!
Mattie: Yes.
Me: What is it?
Mattie: A monkey. (with a big smile on her face)
Me: What’s the monkey’s name?
Mattie: Joba! (Both kids laughing hysterically)
2013 was also a busy year for the Hope for Mattie charity. We held our first major fund raiser in April, the Hope for Mattie 5K and 1 Mile Fun Run. This event was a huge success, with over 200 runners coming out to show their support for our daughter. Later in the year we had our second fund raising event, the Hope for Mattie Charity Golf Tournament and Banquet Dinner. Over 100 people participated on a beautiful fall day. Between these two events we were able to raise over $11,500; all of which went directly to Mattie’s therapies! We are currently in the planning stages for the 2nd Annual Hope for Mattie 5k and 1 Mile Fun Run, to be held on April 12th, 2014. This year we are adding a bounce house for the kids and a cookout for all attendees. For more information about participating in this event, CLICK HERE! If you would like to volunteer to help or to become a sponsor, email us at runforhopetampa@yahoo.com.
2013 was a great year for Mattie and our family. It was hard work, but Mattie has really made amazing progress. All of this is possible because of the support and generosity of our friends and family. Thank you all for being a part of Team Mattie! – Jim
Hope For Mattie 