Wednesday, September 18, 2013

Nope Jacob - we are NOT all done yet

In light of Mitochondrial Disease Awareness week, we are asking key people surrounding our Mito kids what they have learned about Mito. Jacob's speech therapist Brittany wrote the following blog entry, and it made me both cry and laugh this morning. Enjoy!

Hi everyone – my name is Brittany and I am Jacob’s speech-language therapist who works with him 1-2x a week helping him become more proficient with his talker.

When Maria first asked if anyone working with Jacob wanted to write on the Miracles for Mito blog I was a little hesitant. What would I say? I’ve only known Jacob for a few months and there is still so much about mitochondrial disease that I don’t know about or understand. However, after a few minutes of thinking, so many thoughts came to mind. Here is a little glimpse of my relationship with Jacob and what I do know about mitochondrial disease.   

I started working with Jacob in the beginning of June. I am a new graduate who specialized in school at working with individuals with more complex communication needs who required AAC (talkers) to communicate. I never in a million years thought I would get the opportunity to work with so many COOL kids who use talkers. Jacob, along with many of my other clients, is one of those amazing, brilliant, and extremely cool kids. When I first met Jacob I had no idea what to expect from him – how will he communicate? What can I do to help him? Will he be able to use this talker? Boy was I surprised. I quickly learned that he was not only able to use the talker proficiently but he was using it in so many FUNNY ways! By the second session he had told me he loved me. Now usually I will run away from a boy who says those words after only 2 meetings, but with Jacob I welcomed those words with open arms. I frequently get an “I love you” each session. Another phrase Jacob loves to use with me is “All done”. The first time he said it I was only at his house for about 10 min (I usually stay for an hour). I, along with his nurse, cracked up laughing saying, “Jacob, I am not leaving yet! I just got here.” I told him I appreciated the fact that he was advocating for himself but I was staying another 50 min whether he liked it or not. It’s become a ritual now for him to say “All done” about halfway through the session – I think this is more as his little joke with me rather than he really wanting me to leave. At least I hope it is. When I can tell he’s becoming a little tired with the session I pull out one of his many iPad games that he enjoys playing. He’s really good at them, especially bumper cars, and usually beats me even when I am trying my hardest. Boy when he wants to he can be pretty accurate with hitting that switch. 
In August I did a race with Jacob. It was an early Saturday morning and I was so excited to be able to run with him. ‘He’s going to love this’ I thought. He always wants to go outside so I thought this would be fun for him. The race day wasn’t too hot and although I was pushing him in the stroller it wasn’t too much of a struggle to finish. I couldn’t wait to ask him what he thought about the race when I saw him next. Well to my surprise he said “Bad” “No” when I asked him how he felt about it. Maria, his Mom, still thinks he enjoyed it so maybe he was just giving me guff like he frequently does J
That’s just a small glimpse of my relationship with Jacob. Working with him and some of my other kids has taught me several things about a disease I knew nothing about prior to June of this year. I now know that this is a disease that affects people very differently. For example, some people with mitochondrial disease are able to move their bodies and show expression via vocalizations, body movements, and even speech. With Jacob, however, his body doesn’t let him express himself too much in these ways. Once you give him his talker, though, he DEFINITELY lets you know how he feels.  I also know that although mitochondrial disease can cause a person’s body to fail them at times, it doesn’t take away the best parts about them. Jacob’s spirit, brilliance, wittiness, and kindness are very much present inside of him. Working with individuals affected by this disease has taught me to NEVER look at a person and assume their brain is as affected as their body. The greatest things about them are still very present and when given the opportunities they have the ability to show that.  

I look up to the individuals, families, caregivers, and friends who have been affected by and are helping to increase awareness of mitochondrial disease. I feel extremely blessed to work with these individuals and get to see inside their world for a few hours each week.

P.S. Jacob didn't get out of the PICU today...he started having excessive diarrhea, and everyone agreed that the floor is not as good about making sure that Jacob's fluid intake is sufficient when his stool is out of control.  We are hoping he can leave the PICU tomorrow. Unfortunately, Jacob will miss Gemma's wedding tomorrow...

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