Our son Garrett has a mitochondrial dna depletion syndrome, exact gene(s) unidentified. Our oldest child, Addie, probably has it as well. That leaves our gorgeous ball of energy, the middle child, Ainslee, appearing to be untouched by this disease. Follow along and peep through the window at our victories, struggles and lessons learned living with mito.
Wednesday, April 6, 2011
Thoughts Settling Into Living
Know how a house has to be built, but then settling occurs? You know, like those little cracks in sheetrock all the way to the extreme of cracked foundations? So you build a great house, move in to make it home, but still the settling happens while you are moving in, sleeping at night, away on vacation, or even decades after you have lived there. It happens without people noticing, usually, and most of the time does not affect the live-ability of the home. We are experiencing settling of thoughts, facts, and the plans we need to make for the future for Garrett and all of us in our home. Last week we learned that our son has brain problems, techincally, his IQ isn't nearly what we would love it to be. He may not live independently. He will likely always need care.....all of that. Somehow, the settling is happening, and I think it is good. Sure, news about our child isn't good, but it is settling into our souls and our daily lives. It is almost like a weight is lifted. Similar to how it felt when he was diagnosed with Mito, it's like the psychologist's mentioning lower IQ and life-loong care gave Garrett a pass. It helps us see how clearly we have not seen things clearly over these past three years. There's an explaination. He isn't TRYING to make life difficult. He doesn't WANT to scream every time he gets frustrated or his routine changes or we ask him to comply. He doesn't WANT to wear diapers forever. He simply isn't capable to live in this world the same way we do. He has to react..... No, it does not let him off the hook for needing to learn to cope better, speak correctly, and learn...... However, it is HUGE, HUGE, HUGE to know he does not wish to act differently than his peers. It isn't a choice. It's just what he was dealt and gosh, I will always want to scream 'WHY?!?!?!?!?!?!?!?!?" But that doesn't help. I think I see Grouchy letting this all settle into his life as well. I see even more of the amazing patience he has with Garrett. I see love flowing at 50 times the normal volume, but I also, somewhere deep down in his soul, see pain and sorrow and disappointment. He is not disappointed in his son, but rather in the cards his only son has been dealt. I cannot begin to imagine how a father feels right now. For me, I am the mom, and I could have Garrett as a baby forever and it would work out for me because I love caring for him. But for a dad. All of the missed opportunities. Shoot, they are not missed. They just will never be. Hunting. Baseball. Or golf, Grouchy would have taught him. Tennis for sure. How to work on cars.....and tractors. How to wow the ladies....or girls. How to throw a rope, break a colt, gentle a worried horse. How to drive a car. How to get by in school just well enough to make teachers think you care without really doing much at all (Grouchy's favorite!!). How to fly a plane.....one of my favorites. Ride a bike. Play cards. Make a speech. Give a firm handshake and be respectful. Save money and invest. Study God's word and live it. It is heavy for him, I know. Grouchy won't let me know. He is open, but I know he doesn't want me to stress me out more than I already am...... more than we are. He already has so much on him. His consulting job, an agricultural venture he is starting, where to live and how to afford it, and then there are all of these new thoughts about the future......will the future with Garrett be long or short? Should we pack away cash, making all we can and stockpiling for Garrett's long term care? Do we take on someone to live in our guest home in return for helping us with Garrett at home and in school? So much to decide. Baby steps. On a very light note, two of my closest girlfriends are going to be here this weekend. One of them, Jolie, arrived this morning from Baton Rouge, LA. The other, Rebecca, arrives late tomorrow night from Louisiana. Grouchy has been so kind offering to have the kiddos so us girls can slip away and enjoy some girl time. I need it. I love it!!!! I am so honored they spent their money and now their time to come out to Idaho and spend time with us. We will ski, hike a short hike to a waterfall, see a few wineries, shop, enjoy a couple dinners out, worship together, take a couple runs together. Gosh I miss these gals!!!! They probably know more about me than anyone on the planet besides Grouchy....and my mom!!!! We adventure raced together and ran one half marathon and one full marathon. We had a 2.5 year stretch of dreamy time together working out 3-5 days per week in the mornings at the YMCA when our kiddos were young enough to be cool in YMCA childcare. We were so fit, so motivated, and we WON!! We won adventure races. Our team was so consistent....unless we got lost.....and we dominated one season...our first!!! We have canoed at night with alligators, swam carrying our bikes with snakes, ran carrying a canoe over our heads, peed under a tree on a college campus during a race (I will not say which one, but it is home of a few national championship football teams and sports the colors blue and gold), picked up each other after horrific mountain bike wrecks and flips, were attacked by killer mosquitoes while Jolie almost bled to death, and yes, laughed our heads off at my marathon photo where my right inner thigh flab was sailing across the finish line of the Houston Marathon about 2 minutes before the rest of me. These are sisters, people!!!! I hope everyone has people like these girls in their lives. You know, friends who make you look good, who always take up for you, who tell you when you need new highlights, and who you can be completely YOU around. I am blessed. I hope we can take a couple jogs while they are here, but I know it will be hard to run the route here across the area without them after they leave because I have never run like I run with them. Life is so incredibly different now than I could have ever imagined. It will be sad to run the route alone after sharing it with them. Or maybe it will just make it sweeter......to enjoy and savor the memories.....make it last. Goodnight and God bless each of you. To my fellow Mito moms, know I am thinking of you and praying for each of you. I do not know how you do this!! You are my heroes!!!! Godspeed, Clara-Leigh
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I love getting updates...sorry to hear all this ...wish there was someething i could do or say. But you are one of the strongest women I know ....you two are excellent parents and mentors...I strive to be half of what yall are. Love yall!
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