The last 6 months

It's been a little over 6 months since Tucker was diagnosed with Mitochondrial Disease. We have had 6 months to process the news, and some days I feel like we are still in shock. Warning: this post will be brutally honest, you may not want to continue. The day that Dr. K told us Tucker had mitochondrial disease, all of our hopes and dreams flew out of the room. We had worked so hard and hoped for so long that Tucker had some genetic problem that could be cured by some gene therapy or magic pill....or that we could put him in some new medical study, and they'd have him "fixed" before we knew it.... I really expected to leave Dr. K's office that day feeling confident that the mitochondrial testing was a dead end, but still glad that we tried that route. I was so deep in denial at that point, and clung to any hope that my child would one day be "healthy", "whole", or "normal." When Tucker was born, we got our one-way trip to Holland....we just didn't realize it, always hoping to somehow take our precious boy back to Italy with us....the day we got his mito diagnosis, we realized "we were in Holland, and in Holland we must stay." Over the next few months, we learned how to best care for Tucker. We never go a long time without feeding him (mito kids need their nutrition), and know that sometime, maybe soon, we will move to more continuous feedings to help him with his energy levels. We added 3 more supplements to his regime, and I had to come to grips with the fact that for as long as Tucker lives, we will be adding medicines, not taking them away. We use Tucker's stroller and/or grocery carts anytime we can, so he doesn't waste energy on walking places. As he gets bigger he will move into a medical stroller (aka wheelchair) which will come with its own emotions. We watch every behavioral cue to catch sicknesses or new problems when they first emerge. We also started Tucker in all day special needs preschool, which had been a goal of mine for a long time. He came home exhausted and frustrated, and I wondered if we were all pushing him too hard. He started hitting everyone-kids, adults, animals, and I worried that he was getting out of control. In October, a stomach bug went around school, and while most kids were out for 1 or 2 days, Tucker had the most disgusting diarrhea for 12 days....and missed 2 weeks of school. At the end of October, the diarrhea came back with the introduction of Glucerna, as his blood sugar levels neared 500 on some nights. Looking back, without a mito diagnosis, I probably would have lost it at that point....why is my "healthy" boy having all of these issues?? But with the mito diagnosis, I knew to "expect" these problems, and I had a doctor and a group of parents to turn to with questions and frustrations. I also came to the realization that Tucker was never going to be in a normal classroom, and if he is for parts of the day, he will likely have a one-on-one aide. Tucker will be 5 years old soon, and it is SO hard to look at him and realize he may never read or write. We know that the mito affects his nervous system in so many ways, and it has robbed him of the boy he could have become....that makes me so mad!! Yes, he is growing by leaps and bounds since we started the mito protocol....his speech and cognitive skills are exploding, but it only takes 5 minutes with a "typical" toddler to realize that Tucker is so behind that he will never catch up. I worry about his same-age peers, and when they will realize they have outgrown him both socially and cognitively. Right now, kids love to come over and play with Tucker-he has cool toys, he has fun parties.....but that will only last so long. There will be a time when Tucker is not invited to birthday parties or social events....and my heart breaks at that thought. His friends will become younger and younger than him (at least we know there are lots of younger cousins in his future!), and while he may never care, it is hard for us to think about. For years, I focused on how strong Tucker was with gross motor skills. No, he couldn't talk or eat, but you should watch him run!! As he gets older, his physical problems are much more obvious. He doesn't walk or run normally, and has a hard time with swimming, throwing a ball, and pushing himself on a swing. The dreams of watching Tucker play on a baseball team or run all over a soccer field have also gone away in the last 6 months. I have always been a planner and a worrier....Chris is the laid back one. But for months I could not look more than one day in front of me....it is really a crippling feeling to not have any idea what your child's future will look like. Will we be taking total care of him for decades, with ever-increasing medical care? Will something happen to us, and someone else will have to step up and cover this care? Am I worrying about all this for nothing, because he won't be around in a few decades, and I will have to deal with that devastating loss for the rest of my life? It was hard to get through each day, not knowing what the next one would look like. We still feel that....I think for anyone who knows us, the real change in Chris and me over the last 6 months is an obvious change....we don't have the spark in our eyes we used to have, we get frustrated more easily, and good gosh, we weigh more!! I looked at a few pictures of myself the other day, one from June and one very recent, and I thought, my goodness, how I have aged in 6 months! We carry a big burden, and it is wearing on us both emotionally and physically. I have become much closer to Christ in the last 6 months. My cry to God has changed from "fix him!!" to asking him that I can somehow make Tucker's story reflect His great plan and work in us all.....that He would somehow give me the strength to get through each day and keep smiling, hold my head up as life continues on all around us. I think this experience has really and truly broken me down, brought me back to the real goal of life, which is to honor God and bring people closer to Him.....and if there is one thing Tucker is amazing at, it's bringing people to God and inspiring them to press on no matter what. This doesn't mean that God doesn't get an earful everyday from me! I am mad!! But over and over Tucker shows me what really matters in life, and no matter how hard it is for me, I am learning more each day. The KLOVE challenge (a Christian radio station) is to pick one word for 2011 and stick with it....to try to live out that word and try to have that word speak to you. Some people called in and picked "discipline" or "love". The word that popped out to me right away was "Hope." I feel like I lost so much hope, and I need it back. Ever since I picked that word, I have seen it everywhere....in emails, blog posts, Bible passages, in songs.....and after last Saturday's huge outpouring of love and support, I am full of hope for our family. We will keep going and giving all we can to help Tucker to be all that he can be....my hope is no longer that he will be something he was never meant to be. My hope is that I can lead him on this journey to the best of my ability, and that I ask for help when I need it and am able to be myself outside of just being "Tucker's Mom". My hope is that I can help other families dealing with prematurity and mito, just as other families have helped us. I will cling to that hope in 2011....so far, it is helping me get through each day.