We often hear that “time is of the essence” and I understand that means SO much when it comes to our boys who have Duchenne but I did not realize that meant Gabe would be asking questions at age 5 that are very difficult to answer and our answers would play an important part along this journey! He recently was talking about our cat Kelsey that passed away last year. Gabe looked at Traci with the most inquisitive look and asked “Mommy, am I going to Heaven first?!” Now I ask you this…I know children ask lots of difficult questions, but having three other children we have never encountered one like this. Where did this come from??? Traci did a great job as usual and said “We will all go to Heaven Gabe, hopefully when we’re all real old.” Gabe then said “I want to be in Heaven with God. Will I be in heaven when I am 8 years old?” Traci said “No…you will be in Heaven when you are 100!” Gabe smiled and said “OK!” What 5 year old asks this question??!! Needless to say Traci was holding back the tears when she answered him and Cooper was standing their listening to it all which did not make it any easier! The questions are starting to get more difficult and more frequent. Last week when he was being hooked up for one of his treatments he asked “Mommy, when can I stop my treatments?” Traci stated “well the machine is making your muscles feel better so we need to keep using the machine!” Gabe then looked at her and asked “Mommy when will I be like Turner and be able to play football?” Traci was not sure how to answer this comment but did a great job deflecting the answer. It has been a tough week of questions and it is only going to get tougher but I want to end on a positive note.
The VECTTOR treatments continue to go well and Gabe is now asking to get on the machine right after dinner which is an incredible surprise. He gets done eating and says, “It’s time for the machine…” and then he runs into the bedroom and jumps on the bed for his 80 minute treatment! I often write about the physical improvements but just as important are the cognitive improvements! It’s almost impossible to say that Gabe would have naturally progressed to the point he is now if we hadn’t taken that trip to Texas. He was starting to show signs of improving in all areas, but I have to believe this treatment has only accelerated his progress. I think he’s able to think and talk more clearly, has more energy, more coordination, etc. I have written in the past about Gabe and how he is not turning as many cards like he was in school before the machine (see previous posts), but I want to tell you about his newest achievement. Gabe was starting to read some single three letter words but was having trouble putting sounds together before December 27 and day one of VECTTOR. Traci had a meeting with Gabe’s teacher last week and she told her that she thought he was ready to move on to first grade b/c of how well he was reading. What? Excuse me? Gabe Griffin??!! We decided to put him to the test. We got out our “Dick and Jane” book, just like we did with all of our other children, to see if he could read. Not only can he read…BUT HE READ 5 CHAPTERS WITHOUT MISSING A BEAT!!! 48 pages!!!! We could not believe it!!! Since that day his reading continues to improve. His teacher said send him on to 1st grade with Addie! What great news! This was as exciting as the day he WILL graduate from college! As additional insight to his cognitive improvements after being on VECTTOR, his writing skills seem to have improved tremendously since being on VECTTOR. He is now copying words from the board to his paper whereas before he was just tracing letters. One of the benefits of having Addie and Gabe in the same class is we can compare their school work each day. Some of his worksheets now look as good as hers!
At the end of the day, Gabe is constantly improving in many areas and as his parents who are with him everyday, it is obvious what the improvements are monthly. I’m sure the “normal” child would have naturally progressed like this, but knowing the delays Gabe has, it’s amazing to see how fast he is catching up to his peers! Gabe – you are my hero and there is no way I could sit there for 80 minutes taped up like a mummy with electrodes on my upper and lower body and never complain…yet you don’t complain! You are teaching me so much and you are only 5! Love you all my heart!!