My life is going well, my kids are healthy. Even Danny is stable. And rarely do I let the shadow of what he has affect my day. I am sharing this today because we have had a great day. I am in such a polly positive place. The shadow is so light this afternoon, you can barely see it. But it is still there.
This is a horrible, vile disease that can turn from being stable to having someone be in distress on a dime.
It doesn’t matter your age… A very dear friend of mine not only fights mito with her children, but she also battles the illness herself. She had a “crash” a week or so ago. I thought you may be interested in hearing it from the horse’s (or zebra’s) mouth:
“Today…the sun is coming out on my autonomic nervous system. Pressure in neck and chest much better. Neuropathy improved. What horrible nightmare to be coming out of. It has been 7 days since I went in to hospital last week. Still have not regained much loss, but maybe won’t…and not setting up myself for this disappointment. At night things get worse, but each day coming out of this storm. Today I can walk with walker, around my house…still need chair for harder things. Thank God for stair lift, it turned part of our house into a RANCH. V is using it as much as me…nice to not worry about her weakness causing her to fall. At night, we no longer have to carry her up to bed!”
She was a typical mom ten days ago. Well, not typical, she was and is always an amazing mom.
This disease is still not understood. It is barely understood by pediatric docs, almost no adult docs have any experience with it. I have come to the conclusion that as of right now, the docs are guessing. Now they are guessing armed with experience and an amazing education, but they are still guessing… I need science to move a bit faster. Danny is eleven.
Well, that is it, no more school for a couple of months! Yipee!
I think I love unplugging as much as the kids do. I know I love the warm weather, and sunshine more.
D is on one of his swings soaking up the sun, Katie is in her room doing whatever it is she does up there, and Jack is still at the pool with friends. He should be home soon. I told him he could stay until the next adult swim, but then he needs to come home.
Days like today are why I like that I get to stay home. I was able to dash down to Shaffer and help with the end of year party. Dan and I hung out this morning. And once the other two kids were out of school, up the hill we went to the pool. My blood pressure is so under control…
Time to bring the laundry in and start dinner….
Happy last day of school.
Jack is doing the “it’s the last day of school…the last day of school” dance on the stairs. Katie is rolling her eyes because I made her change her shorts. “You know mom, it’s the last day of school.” “Yes, I know, and the rules are the same on the last day as they are on the first day, go and change your shorts…” yes, I am that mom.
“Swimming, swimming, swimming please, swimming?” a bit later today Dan.
Holy ike…it’s the last day…yipee!
I just love the mornings when I go from 0 to 60 in 15 seconds. Today was one of those.
So here is a quick, non g-rated version of our morning.
What wakes D up every morning is having to go potty. Some times it is ok, others it is a huge mess. Today was a huge mess day. So, not only was I washing sheets, I was also cleaning the bathroom again (including the shower curtain) this morning. Poor kid, he woke me up with “mom” and signed bath…
Almost every morning is a 0 to 60 day, one way or another…
Every summer I toy with the idea of a new house. Not because we need more room, we don’t. Or because I want a new kitchen. But because some red-head wants to go “swimming, swimming, swimming please, swimming…”
He has been asking every twenty minutes or so since 3:14am. We finally gave in at 3pm. It was as warm as it was going to get for “swimming, swimming, swimming please, swimming…”
I totally need a pool in my back yard….
Hugh is not the man I met 18 years ago, but I’m not the same person either.
Our marriage looked very different a dozen years ago. Hugh has always been a good dad and an involved one, but we had a definite division of responsibilities. And we kept that division when D was a toddler, he was working all the time to make sure we could put groceries on the table while we went into early intervention debt.
But slowly, over the last five years, he has been taking over some of the responsibilities from this house. Now, not for the first six months of the year, he can’t physically do anything more than his job. However, from now until the end of the year, I can call him and ask him to grab groceries from the store on his way home, he does half of the night-time shifts, is more aware around the house….things like that. I know that sounds trite, but it is so helpful not to be the only one responsible for the day-to-day operations of Marrs inc…
Hugh was always going to be an involved dad, but having Danny made him be change his definition of involved. And while it looks to the outside world that we have traditional roles in this home, Hugh is a bit more like Mr Mom than we planned.
You know what is up at 3:14am? Danny, mommy, and the song birds who hang out in the big tree right in front of our bedroom window…
He slept the right amount of time last night, he just started so darn early. He was totally beat from swimming. That’s ok, it allowed Hugh and I to enjoy some time with dear friends when they came over for dessert. We don’t see them much so it was lovely to catch up.
The other two kids are socked out, I think the first weekend of summer has wiped them out as well.
I just love the sunshine and the green grass! Life is so much easier in bare feet…
…and I am not sure if it was quite warm enough…
Earlier today, we tried to take the boys down to the school playground to swing. We are one block west and one block north of the school, but it might as well have been ten miles with how Dan complained about walking. But he rallied, and made it down there. We played for about five minutes until he asked to go home.
The sun came out and the temp warmed up. You know what…the pool is open. So, Hugh and I gathered all of our fabulous pool stuff. Dan helped me with the swim goggles and we were off. Would he go in? Is it still too cold?
He jumped in (well, with a little help from mom) and we were off to the races. He swam for 45 minutes. Holy Ike. He hasn’t been in a pool for five months. But he was a trooper. Shivering, he asked for a hot dog and fries and a bath all at once. He was ready to go home. He has had his bath, and polished off some fries, let’s see if he still wants that hot dog…
Jack is still there… two and half hours so far…
What a fun day yesterday. I unpugged…sorry.
Friday exhausted everyone. Danny was at school until after continuation, so he was wiped out. he socked out early. With Hugh and the other two kids at the Rockies game, I had the house all to myself Friday night, thank you Anna! I guess Jack was bouncing all night until he crashed in the car on the way home. He was so out of it, Hugh carried him from the car to bed.
In fact, we started our day at…..8:30am! I don’t think we have ever stared our day that late….yep, not in twelve years.
The weather was too chilly to hit the pools, so we packed everyone up and headed to the cabin for a couple of hours. Mulligan was so excited! He even barked at the motorcycles that would come up behind us. It was perfect cabin weather. Not too hot, not too cold…June is my favorite month up there. In a week or so, the wild flowers will all start to bloom. It is so pretty, and quiet…
After a couple of hours, we headed back down the hill and home. Time to wash the dog, pick up the house, and start the ribs because a couple of dear friends were coming over. What a lovely evening.
Dan decided he didn’t want to miss a minute of summer and fought going to bed. Little stinker was up last night until after midnight, which put me to bed after 2am. He woke up early though…so I am moving a bit slowly this morning. Dan and I are sitting with our dueling computers, I am posting…he is watching Barney in Chinese. You haven’t lived until you have heard the big purple dinosaur sing “I Love You” in a foreign language…
There is Jack…gotta dash…
So, here we are, officially out of elementary school. Danny did a fantastic job at continuation today. Hugh teared up a few times. We both were so very proud of him. But you know what I have realized? He’s ready to move up. He is ready for a new school and new experiences. The last two weeks, he has seen all the choices he can have and that people will talk to him, he’s ready to go. And, I am ready to let him go.
My baby who has such challenges and who has worked so hard for everything he does, is ready.
I am going to put my feet up, have a glass of wine in my quiet house, and celebrate everything he has accomplished in the last six and a half years. We know so much more now than we knew then, and even with the regression we just had, he is in a great place.
Thanks Anna for the Rockies tickets. Hugh has taken Katie and Jack and they are meeting cousin Jake at the stadium. It’s just D and I right now, well, and Mulligan. What a lovely way to start the summer…