Today I am deciding to give up. Not giving up on fighting MS or whatever the hell that means, but giving up on trying to be pleasant 24/7. I’m about to crack. The dam is leaking. I’ve been on the verge of tears for too long than I care for. To give you a bit of perspective on me and my tolerance for crying, too long means around two weeks. I’m tired of being on the verge of tears. I’m sick of being consumed by this disease. I’m done hearing myself talk about it all the time (as are those around me, I’m sure).
So here is what needs to happen. I need to stop pretending everything is okay, accept what’s going on with my body, embrace it, and move on. I’m moving through the stages of grief, that’s all. Denial, anger, bargaining, depression, acceptance. I imagine I may have to move through the stages again with every relapse, but have hope that it will get easier each time.
I still have so much to be thankful for. I have an amazing husband. Beautiful son and daughter. Terrific extended family and friends. Great job, church, house, a car that runs. And to top it all off I now have a cane with flames. So take that! If I’m gonna live with this disease I’m gonna do it with some syle.
Can we talk about me for a minute? Well, of course we can. It’s my blog, right?
Here’s the deal: I believe I’m having an MS relapse. Last year when I had my first (or second if you count the third nerve palsy in 2004) attack I had all kinds of numbness from my breastbone to my toes and I couldn’t walk a straight line to save my life. My balance was all messed up and my legs were weak. But then it got better. I wouldn’t say I got 100% function back, but I at least felt like my gait was starting to resemble normal. Now normal has left the building. The numbness is back, the weakness especially in my left leg, my gait and balance are all over the place. Not to mention my left hand is starting to feel a little weird too. I’m officially walking with a cane. I bring it with me wherever I go and it helps me to walk a little faster and safer. If I start to lose my balance I lean on the cane. It shares the burden of weight with my left leg so that my left leg doesn’t fail while I’m trying to step with the right.
When I first started using the cane I felt quite embarrassed, like all eyes were on me. That went away after a few days of realizing that it was mostly in my head. Once I got used to having the cane around it wasn’t a big deal. And obviously the benefits far outweigh any negative reactions I could possibly receive from others. The cane is helping my legs to not get fatigued so quickly and is keeping me safe.
My only issue now is that the cane I use is boring. It’s just a shiny blue and black marble cane and is shaped a little like a shepherd’s hook. If I have to carry this thing around I want it to have a little personality, a little flair. I’ve seen all kinds of different canes on the internet and some of them are pretty cool and not even that expensive! So I’m thinking about getting one. We’ll see.
I did get a new pair of glasses and that has me feeling pretty good. They are a nice design, not all that different from my old glasses so that’s not the exciting part. The exciting part is that they refined my prescription and added a prism to the left lens. I am blown away at how well I can see now! The world is a much clearer place! And with the prism and anti-glare lens my eyes don’t wig out with the bright light anymore. It’s amazing, simply amazing. The true test will be at the grocery store because that’s where I generally have the most trouble. Lots of things to focus on, bright lights, moving objects. I’m very anxious to see if these new spectacles can pass the test.
About a week or two ago my two-year old son (almost three!) told me he wanted more snow. The little bit of snow that we had at the time had mostly melted and there wasn’t enough to make snowmen or even have a snowball fight. I do have control over some things, juice and crayons and whatnot, but precipitation I cannot provide. I told Luke that he would have to take that one up with God. Surprisingly, he took that as an acceptable answer and went on his way.
This morning Luke got up while I was getting ready for work. He came into the bathroom (I’ve gotta teach him about knocking) and told me matter-of-factly that he talked to Jesus. Yes, they had a talk. Luke and Jesus had a talk and Luke asked Jesus for more snow. Now how he knows that Jesus and God are one in the same, I have no idea. We’ve never really explained that to him, but he must have picked up on it somehow.
I’ve been pretty busy lately with work and tax season. When I’m home I pretty much crash so I have been neglecting to blog. But today I was at my nephew’s 2nd birthday party and when I came home my sister had already posted the pictures. There were some good pictures but the link she sent also gave me access to her photo album from her wedding five and a half years ago. I had a good time reminiscing through the photos and I had an especially good laugh when I came to one picture in particular. Bloggers, I give you “The Hug”:
The element of surprise is a big help, but it still gets a laugh every single time.
Twice today I’ve heard Luke repeat phrases that he could have only heard from his dad.
He was unzipping his sister’s diaper bag and I asked him “What are you doing?”
And he answered,”What do you think I’m doing?”
Then later he was boxing with Mike. They use boxing gloves and Luke takes his shirt off, just like the professionals. They even have a rule about shouting “ding! ding!” before they start a round. Mike must have started fighting too early at one point because I heard Luke shout,
“I didn’t hear a bell!”
Now if I ever hear Luke say “This cost $10 bucks, shipped!” I’ll start to get really worried.
Mike rearranged the living room this week. And when I say “rearranged” I mean “moved the loveseat 7 inches to the right. It’s not a huge change, but the change is huge. It makes the living room feel more cozy and living room-ish. See, our living area blends in with our dining area, so it’s easy to lose it’s identity. See how it used to look?
Moving the loveseat gives the room more definition. I don’t have a picture of it now, so you’ll just have to imagine. I notice I’ve been feeling more inspired to blog lately. Maybe it’s the couch.
I’m spread out on the couch with my wool blanket and laptop, just hanging out with Natalie. She woke up at 6:30 this morning and I fed her but she deviated from her usual pattern of going back to sleep. She is wide awake! So we’re just sitting here, hangin’ out. At this age, 3 months, she is starting to get a bit more entertaining. She loves her rocking chair, and the toys that hang over the top of it. She’ll sit there for hours (just kidding) and smile and coo. She’s getting very talkative. Just a moment ago she discovered the toy in the middle has a handle, and if you pull the handle, it plays a song. I remember when Luke found that same toy, in that same chair. It was one of the early milestones we remember the best.
Luke is just getting out of bed. We took the child-proof cover off his doorknob so he can come out of his room sans parental assistance. That’s nice. We had the cover on ever since he switched to the big boy bed because he just. would. not. stay in bed. But now he gives us no trouble. The luster wore off so it’s not a big deal to stay in bed. The boy is becoming more and more independent. He’s potty trained – all around. Number Two was a bit more of a challenge but all in all he has exceeded my expectations of the whole process. It’s cute, he runs to the bathroom when he has to go and insists that we shut the door, he can do it himself! Of course we insist on supervising. It’s a special treat watching your kid poop on the potty.
Natalie is over here making lots of happy noise and Luke just asked me “what is she talking about?” I have no idea Son, but I’m sure it’s worth hearing.
Luke and I will be going bowling later today. A woman in the area puts on a bowl-a-thon every year to benefit children with special needs. Her son passed away five years ago, at age five, and she does the benefit in memory of him. I love a good cause and I think Luke will have a blast. He has a toy set of bowling pins here at home that he loves playing with. Seeing a whole bowling alley with lanes and pins and balls and special shoes and oh my, it’s just going to blow his mind. A friend of mine will be bringing her nephew, who is just 6 months older than Luke. Bowling is fun, but bowling with friends is even better!
Ahh, we are just really enjoying life right now. We have our stressors to be sure, but when the day is done we know we are blessed. God has been walking with us every step of the way. And how can you not love life when you have these two beautiful kids staring back at you?
Luke learned a new word today. It’s actually a word he’s heard before, if he’s ever ridden in the backseat while daddy drives through rush hour traffic in Oakland, Ingham, or Kent Counties. I’ll just give you a recap. Mike said it best on Facebook:
“almost got in a fight this morning. It went a little like this; guy walks in, says the F word in front of my kids, I tell him to watch his mouth, he tells me to screw myself, I stand up, he runs out the door, I chase him out the door, he runs to his car, Mcdonalds employees give me free food.”
And then Luke spent all day reenacting the incident:
Can you make out the word? The word that is now confidently cemented into Luke’s vocabulary? Yes, the word is moron. I know it’s an insulting word for a 2 year old to be using but don’t worry, Luke remembered him when we prayed before bedtime. Right after he thanked Jesus for Mommy, Daddy, and his boxing gloves, he thanked Jesus for the moron.
I bought a couple different kinds of juice at my last grocery trip on Saturday. When I got home I put one jug of apple juice in the fridge so it would be cold later. Later, when it was cold, I poured myself a drink. I drank the whole glass and thought to myself, “this apple juice tastes funny.” I even asked Mike if he noticed that the apple juice tasted a little funny. He hadn’t noticed. Then at dinner time I drank another glass and thought to myself, “boy, this apple juice tastes funny.” A few hours passed and I went to the fridge to get another glass of apple juice (I do love me some apple juice, even if it tastes funny) and it was no where to be found. In its place was a jug of white cranberry juice.
Hmm. I’m thinkin’ maybe it wasn’t apple juice I was drinking all day.
I am Mindy. I have a husband, a son, a daughter, and two cats. I like to talk about them. Well, not the cats. I'm glad you're here and I hope you stay awhile and come back often!