Mito Awareness Week Day 4 and 5: I said I was going to make a post everyday this week. Im not gonna lie, I was asleep by 9pm last night and never got to write anything for Day 4. So this is both. Day 4: SHOW UP This disease makes life difficult. There is nothing easy about a day in our life. It makes bath time, bed time, dinner time, pool time, etc. much more work than it should be. Regardless of how hard it is, show up! My wife has to take it easy and go to bed earlier (if this is even possible at our house) when we know we are going to be doing something fun like a night out or a concert. What do I do. Sometimes everything. Dinner, dishes, laundry, baths. And whatever else she needs me to do. Kim and I refuse to let this take over our life and strip us of making more memories together. So its important to us. So we make lifestyle changes and make it work. Finding baby sitters is more difficult because they are complex. Most of the time we dont bother even leaving the house until everyone is in bed. When things got really bad with Addison her care was very difficult. She had been developing well and then at 9 months old she lost all her skills. Our insurance would not let us leave Michigan and we knew the care/help we needed was in Ohio. So we did we do? We moved! We put our house up for rent and found a house to rent. Two weeks later we were Ohioans (oh gosh how I hated moving across enemy lines). It took us so long to get her back on track. Would she ever walk? would she ever talk? These were legitimate questions that we asked ourselves. Today she is doing great. This is not because we just dropped her into some therapy classes a few days a week. This was a combination of a lot of work and time that was put in by many amazing people. It was not easy for us, but we never gave up and we ALWAYS showed up. Addisons obstacles were tough to overcome, but not nearly as tough as her sisters would end up being. Not only was she born earlier, and more dramatically, but right from the start of her symptoms she was always more delicate and had more systems affected by the disease than her sister did. Monitors, oxygen machines, and a LOT of sleepless nights. It was exhausting, sometimes terrifying, and caused us to fight every day even more to find answers. Kim became a mom, nurse, doctor, and advocate. We were forced to make difficult decisions because not to many people really knew how to help us. It was tough on us and it was tough on our marriage. The one thing that stayed a constant was that we showed up. We would never give up, and today our family is closer than ever because of everything we have been through. Day 5: To use an expression from a funny movie Kim and I love. Sometimes you have to ask yourself Is the juice worth the squeeze? What does this mean. Well in life sometimes we have to make difficult decisions. We dont always know what the outcome will be. So you try to figure out if the work required to possibly get what you want is worth doing. For us, for our girls, and for me, for my wife, the juice is definitely worth the squeeze. Always has been! Always will be! With the girls, we had to sit back and watch them go trough hospital stay after hospital stay, countless operations, weve seen them get poked with needles more times than I care to even talk about. They have been through intense therapy, we have fought with insurance, and had to come up with money or assistance at times for things we needed for them but could not afford. Like I said we showed up and today we have two beautiful little girls who have defied the odds of what they could do or should do. You fight for every inch you can get and sometimes you lose an inch or worse a whole yard, but sometimes you gain an inch or sometimes even more. We recently have made a lot of lifestyle changes and one big one we made for my wife was switching to a Paleo lifestyle. For those of you who dont know just google it lol. Its now easy to explain. For some it is a diet or way of losing weight, for us its a way of life. Kim requires more rest than me or you do. As a result,I need to step up and do more. I recently got a third job to help us. We dont question the things we do and even though the decision we make require more work from us, or require us to do things we really do not want to do, we do them anyways. We do them because the juice is worth the squeeze. So every time I see Addison running, playing, swimming, or coloring I know without a doubt it was worth it! When I see Audrina laughing, talking, looking at books, and singing I am so happy we kept fighting for her because we wanted more. Kim has good days, she has bad days, she has good weeks, and she has bad weeks. Sometimes we plan a night out and we cant do much because she cant quite make it through an entire night. Ill say this, if someone told me before married that women that this amazing life we have together would come at such a big price. I wouldnt have blinked! I would have said I DO just like I did and held her real close even more than I have. I know with the girls we would have done the same thing. We have worked hard enough that we are now able to enjoy our time we have with them. So my advice to parents, husbands, wives, and anyone out there that is experiencing difficult times and it feels almost impossible to get through. Show up, because the juice is worth the squeeze :)
Posted on: Thu, 18 Sep 2014 23:05:35 +0000