“Can I please get that surgery? Please!” It was Saturday night, December 5, 2009 in Missoula, Montana. The urgent plea was coming from our 6 foot, 220 pound, 17 year old son. Jesse, who was in extreme pain with tourettes’ tics and muscle spasms is now nearly symptom free.
The story of Jesse’s long journey to health and well being is recorded on his Caring Bridge Journal site which I began in December 2009 when we learned his severe tourettes condition could possibly be helped with a yet unproven surgery at Mayo Clinic in Minneapolis, Minnesota.
On June 19, 2010, his “before and after” story as was presented on KPAX our local television news station. I wish that every one of you could have been sitting with us watching the follow up news story about Jesse’s progress since his DBS surgery! It was so amazing……and so difficult to watch.
When Jill Valley, our local KPAX newscaster, called a couple of weeks ago about doing a follow story on Jesse, I had an idea. I thought that this might be a great opportunity to show the “before and after” miracle of Jesse’s DBS surgery as well as the amazing difference the recently discovered pharmacogenomic testing has made in Jesse’s life.
Jesse and Jake liked the idea, so I asked Jill if she could include some clips from our visit to Mayo in December when the Neurology Department filmed Jesse’s tics. She graciously agreed and we called up DBS coordinator Debb Gorman, to see if we could obtain the footage. She copied it and had it sent to us a week ago.
While Jesse was at school, we opened it up on the computer to watch. We both stopped talking and the room started feeling dark and sad to me. I guess Jake felt the same way because we both started crying. Seeing the horrible, grinding neck tic, along with black circles under his eyes from years of not sleeping regularly, triggered some very painful feelings inside of us. How Jesse has managed this level of physical, mental and emotional pain for 10 years is beyond my comprehension.
In the video, he isn’t able to walk normally due to the intensity and strength of the tic. He’s obviously suffering and in great pain. I think what started me crying was noticing in the video how hard he was trying, and how sweet he was to the nurse as he tried to follow her directions. When I complain, it’s usually about something so non important that it’s embarrassing that it even passes through my lips. He shows such perseverance and sheer endurance. I think I need to watch it whenever I feel like grumbling or being negative. No more! Unfortunately I’m human, so I suppose I won’t be perfect, but I sure hope I become a lot more like my son.
The follow up story was filmed at Community Hospital’s brain rehab program here in Missoula. Jill and I were there with Jesse and the wonderful staff that is working so hard to help him regain the many lost years of his life. To Theresa, Dr. Harrison, Tawna, Cindy, Kathleen, Chris and the rest of the staff, thank you for giving many, many years of your lives to rehabilitating those with brain injuries. You are unsung heroes in so many ways, but know that the Jensen’s and so many other families love the beautiful music you bring to so many in need. And I personally think you are tons of fun!!
Another reason I wish that all of you reading Jesse’s journal lived here, is because we celebrated Jesse’s 18th birthday June 24, 2010. Yes….18!! It’s hard to believe he’s been a Jensen for 12 years! God gave us our wonderful son and we couldn’t imagine life without him. God’s gifts to us have been numerous over the years, but I think the rest of the Jensen’s would agree that Jesse tops the list!
I wish every one of you were here to enjoy the victory of Jesse’s 18th birthday together! Your prayers have meant so much more than the hamburgers and potato salad I served. Add a birthday cake and balloons, and we could still never repay any of you who have faithfully been on this journey with us. All I know for sure is that God rejoices greatly in how you have held up the Jensen’s arms through your prayers, encouragement and numerous acts of support and kindness. Those are always remembered.
If you want to view Jesse’s news video, you can view it below or by clicking here on “KPAX Missoula”. I also have it on my Facebook page. I put the new video as well as the one from last February, on my wall. Thank you Jill Valley for not only being a fabulous newscaster, but also a wonderful person. The video you produced will help others for years to come.
Have a wonderful weekend.
Love, Nancy
