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.
Sunday, April 10, 2011
Sweet Times, Bitter Moments, Friends
Two of my dearest girlfriends spent a long weekend here with us. They actually leave in the morning, very early. We have had a wonderful time! We spent Friday on the ski slopes all day, shopped for ski wear, ate out a few times, enjoyed my "worlds colliding" once more when we added one of my sweet local girlfriends to our outing to dinner and shopping last night, hiked to a very pretty waterfall, visited a local winery, worshipped at our church, roasted marshmallows, and just really enjoyed our time together. These are the girls who I mentioned in my last post. But today was weird. No, it was sad. No, it was strange. I don't know how to explain it, really, except that I feel comfortable with them and feel like I can be open and real, and it came out so much today. Grouchy is home and was a sweetheart encouraging me to go enjoy time with my friends, although I usually ended up with one or two of our daughters while we hung out, but that was cool. My girlfriends like my girls and know them well, so it wasn't bad. It was leaving Garrett with Grouchy, or maybe leaving Grouchy with Garrett that was tough. Whenever I leave, I feel guilty. Grouchy doesn't intend to make me feel this way, but I just know how hard it is. I know that when Garrett is home, nothing else can be done. Grouchy is trying to file taxes, pay our bills, schedule travel for his next work trip, buy equipment for a business he is starting 2000 miles away, trying to get logistics to mesh with the business, setting up accounts and payroll and tax stuff......and then there is fencing, weed spraying, working with Ainslee and her heifers, moving dirt to help with irrigation that's about to begin, still unpacking his tools and supplies into the barn.....and then with Garrett, none of that really happens. Add to that our kind neighborhood guys who sometimes stop by to visit and then Garrett turns into a complete out of control monster....hurting Addie and Ainslee, screaming. So I get home from wonderful time spent with friends and there is this man I love who looks like someone hit him with a few trucks. Seriously, it is that bad. I can see it in his eyes: HOPELESSNESS. He doesn't mean to complain, but when he talks about all he got interrupted, a visit cut short, a tantrum, the screaming about everything, almost flipping the little 4wheeler by running under the swings and getting the 4wheeler handle bar stuck on a swing, the blowout diapers, the short nap that took forever to get going.....And I come home and my heart sinks to think I was out enjoying myself while Grouchy was home babysitting. In the past years of parenting, when someone would mention "babysitting" while speaking of him having our children while I was away for whatever reason, he would reply, " It's not babysitting. I am their dad. It's PARENTING!" I always loved the way he said that!!! I am so proud of him. But when he has Garrett, it is babysitting. There's no taking him fishing, having a father-son chat, teaching him to use a hammer, baseball glove, etc. It's plain old babysitting. Simple as that. It's working to keep Garrett alive and not let him hurt himself or anyone else. In fact, one day he was with Grouchy while my friends were here, Garrett opened the pasture gate when Grouchy said to close it, and Ainslee's horse, Ernie went darting past and out the gate as Garrett stood there with the gate open saying, "Why Daddddeeeee??" JUST SHUT THE FRICKIN' GATE!!! Too late. And that's how it goes. There's no visiting with the neighbor, getting a little fencing, working on the tractor. It's sitting here, no, it isn't that easy. It's walking around following Garrett or checking every minute to make sure he is okay or hasn't really messed up something. His brain isn't right. He doesn't process information and act on it. He cannot help it. I know that, and maybe now that makes it all even more sad and frustrating. SO the joy of having my friends come.....we had fun, no doubt. But at dinner tonight I was in tears, and so were they. They want to fix it for us. They felt they might have added stress to our lives by being here. Crap. That's just how I want life to go. I know these two friends will always walk with me.....shoot, we have already run so far together in life literally and physically and spiritually. But it's a burden, this friendship to me....not a burden on them, but on anyone I let into my life now. It's hard to know what to say to new friends. I know what I deal with is heavy. I know it isn't exactly something you chat about at a moms' night out. It is uncomfortable. "So tell me about your kids." Innocent question, right? "Well, I have these two daughters who are so amazing. They make the world a brighter place, keep me proud of them, make me laugh, make me hold my head high as a parent!! They are beautiful in every way I would ask God to make them. And then we have a son who is 5 and a half. He is the cutest guy in the world. He has some health problems that cause him to be mentally challenged. He has a progressive disease and deals with Autism, OCD, anxiety, sensory processing disorder, and screams, hits, asks the same things over and over and over and makes very little sense sometimes. And I love him, but he takes all of my time, energy and prayer. And oh, by the way, he just tested retarded last week and will likely need long term care out of our home because of his mental issues. So we are trying to find out how to make as much money as possible to care for him, still have time with just our girls, and figure out how to make it all work while meanwhile we know we may bury him before we figure it all out. Remember the "progressive disease" part? So how about you. You have kids?" That pretty much sends people into really wanting to get to know us, right??? I like to entertain. I don't anymore. Garrett hates it, gets loud. I would love to have our Sunday School class over for a cookout. But I don't. I want to host a playgroup meeting for the one I am in, but I shutter to imagine.....I would like to have neighbors over, but it has happened twice and was a disaster. Once couple came over and then never has asked to get together again. They have no kids. And I know they were blown away after seeing Garrett in action......good birth control. Did I just say that? So my girlfriends, I love you both!!! You have made me laugh and enjoy my moments this weekend more than I have in a long while. But I am sad. I am sad things are so complicated. I am sad I go out and play while you are here but have the guilt when I return. I am sad I whine to you when your lives have not been easy. I am lonesome thinking you are just across the yard in the guest house sleeping and I have to take you to the airport tomorrow. And then it is back to the biggest thing I look forward to being the bus picking Garrett up in the mornings Monday through Thursday. But back to "normal" (screw normal, it's not here) for us. Or our normal. For months I have prayed WHY!!!!!!???????? I am getting nowhere with that. Before that it was GOD, WHAT DO YOU WANT ME TO DO WITH THIS? And that didn't get me anywhere. I am not sure what to pray for now. WHY doesn't help even if I get an answer. I might not want to know why. WHAT TO DO WITH THIS......no answers there either except I need to be more patient, God told me once in a very clear voice. So tonight I will try to be still and listen.....part of the message at church today. Listen....peace.......still. At least I am the last one up, so it is quiet. On a very, very, very, very high note, my mom told me she and Dad will be living here in the guest house FOUR MONTHS starting June first!!! HOLY COW!! I cannot even begin to explain what a HUGE help that will be for us. Their being able to come out in the summer for a couple of months was a large part of our confidence in our move from Louisiana to Idaho. To have some other hands to help with Garrett...HUGE. I know it will not be without its challenges, but those will likely stem from me over-using my parents while they are here. But the confidence it gives me.....and Grouchy will not be home in August because of the business he is starting, so it will be great to have my folks right here behind our house. I cannot explain my joy and relief in this news!!!! THANK YOU MOM AND DAD!!! Off to bed to lie there and be in God's presence. I hope. If I were God I would have given up on this whiner by now. But God is here....or there....or here....whatever. He exists. I know that, but that's about all I understand of Him tonight. Clara-Leigh
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I hope you are able to get some relief from the guilt, stress and strain on both of you with a home health aide for Garrett. Medicaid/care should pay for that, and the aide will take care of his diapers, dressing, bathing, etc., generally relieving you two of the nonstop care. Please let me know if there's anything I can do to help you with the paperwork mumbo-jumbo - I work with health care related issues just about every day in my job these days. You will find out that the home health aide is a gift from God, I know it!!
ReplyDeleteI really hope we can work out a visit in August. It's been too long!
Love you girl,
Your Terrell
I am so glad that Jolie and Rebecca could come out. I don't have a friend that would ever travel that far to be with me! Compute. -- Your greatest life messages and your most effective ministry will come out of your deepest hurts. All God's giants are weak people. Keep flexing! Mom
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