the inner crazies revealed…
My grandfather is home from the hospital, though the doctors are still closely monitoring him and his heart. My parents are scheduled to visit in another week, and I’d rather they didn’t so that they can stay close to home to be there if my grandparents need them, but I can’t bring myself to say ‘don’t visit.’
I posted for a promotion at work, again, and got turned down, again. A new position was created within my department at work, doing something I really excel at within the job description, and I expressed an interest. Got turned down for that one as well. I’m beginning to see that my supervisor, while not hurting me in any sense, isn’t so much going out of his way to help me either (his fave got the position).
I’m discouraged because I’m finding that just being good at my job isn’t enough.
I’m frustrated by my continually messy house. I’m annoyed at my slower than desired weightloss.
I am tired and worn out, sad and angry, irrational and sentimental. I feel like a giant, exposed, raw nerve.
Which is fitting since at the heart of this mixed-up, unhappy soup that is me at the moment is a tangled mass of potentially raw, exposed nerves.
Last month, they diagnosed my friend, Mandy, with a rare and aggressive form of Multiple Sclerosis. In the last six weeks, she’s gone from being this bright, vibrant woman whom I talked to every day to a woman who can’t say the days of the week in order. There are days when I honesty cannot fully wrap my mind around all that is happening.
Mike and I spent the weekend taking turns texting with her husband, Josh, about DNRs and how to approach it when the time comes. In six weeks, she’s arrived at the point Mike’s mom arrived at after 40 years (Mike’s mom died of MS). And at that point, Mike’s mom was about two years away from death.
Mandy’s been in the hospital more than out, and they’re beginning a therapy treatment for her on Friday that carries huge risks. But, at this point, she doesn’t really have anything to lose. And how awful is it to say that?!
Mandy’s essentially non-responsive most of the time, which I think is good. I prefer to think that she’s not aware of what’s going on. But then, Josh told me she sat up this morning and asked for a copy of the newspaper. Surely that’s not unresponsive! So where is my faith that I’m thinking these other things?
It’s this awful up and down situation in which some days she seems not right but not awful and then other days, she can’t tell you if one or two is the larger number.
It’s really hard to think that if the treatment doesn’t make dramatic changes in her cognitive abilities, she could die… soon. And I want the treatment to either work really well or not work at all because I don’t want her and Josh and … us … in this never-ending limbo of uncertainty. And what a rotten friend am I to think that?
Mike and I are both trying so hard to be there for Josh because as much as we love Mandy, Josh is where our hearts are right now. I started a FB group for them, and I send out emails to the group every day to let them know what’s going on, so Josh doesn’t have to do that. But that means I get lots of emails every day from people telling me how wonderful she is, which is good, but draining nonetheless.
Mike says I don’t have to respond to every email, but I feel like I do. I want people to know how much we appreciate their love and concern. But I’m so tired. It’s the last thing I do at night and the first thing I do in the morning, and how awful am I to think about it that way when Josh goes to sleep in a hospital recliner every night, and his daughter hasn’t slept at home in forever.
And we haven’t even begun to tell Griff about the severity of Mandy’s illness. He grew up with her, loves her like family. He will be crushed when he finds out how ill she is. We’ve never lied to him, and we won’t start now, but we are trying to give him information slowly.
Mandy’s 30 years old and has a toddler. I don’t want her to die, but I don’t want her to live like this either. I watched Mike’s mom die, and I would never want that for Mandy. I’m praying for God’s will, praying that He won’t make this harder on Mandy and Josh than it already is. I’m tired of people telling me that God has a plan and that this is all for good. I know that. But it doesn’t feel good at all right now. It feels like waiting for a friend to die.
It feels like not believing in hope again. It feels like a general, unrelenting sadness.
Filed under Faith, Most Everything | Permalink | Comments (7)Tagged with: Josh • Mandy • MS
Normalcy…
February was a whirlwind month, and I spent the first weekend of March taking all manner of meds, sleeping through most of it. Today is my last steroid day, and I’m feeling better, grateful for a Saturday at home.
We’ve got the cousins for part of the weekend, and it’s really quite wonderful, I think. The girls are running in and out of the house playing secret spies… driving Mike crazy because they can’t seem to close a door. The boys are watching HSM3, though they’d be appalled if anyone knew that. It’s a day that’s loud and bright and full of movement and pleasure. And it’s really quite wonderful.
Last night, Mike and I had a date night. We were headed out to the Astros Spring Training game when we realized we’d gotten gametime wrong & were going to miss the first few innings. Mike, being the sweetie that he is, offered instead to go to Cafe TuTu Tango on I-Drive in Orlando, one of my favorite places to go. We had a really nice time… eating and talking and laughing.
On the way home, I told him that I had always known it would happen this way, unexpectedly. I would suddenly realize one day that I was on the other side of the great unhappiness and uncertainty of moving to Florida. And here I am… on the other side.
I don’t love my job, probably never will (and yes, I did get turned down yet again for a promotion), but I don’t hate it any longer. It pays the mortgage and has great health insurance, and I have friends there. I love this Florida weather, and I love that my kids get to play with their cousins all the time. I love that Griff and Hayden have become such close friends that they’re sharing secrets and intimate thoughts.
Of course, I wish we were closer to Mandy, Josh and Olivia so we could help with this new journey they are on with Mandy’s MS. Of course, I wish we were closer to my family in Arkansas, so I could go by every afternoon after work and hold baby London. My grandfather is in the hospital again this weekend for the second time in less than a week (he has pneumonia, an infection, and an enlarged heart), and I wish I was close enough to drop by and see how he’s doing myself.
And yet, standing at the kitchen counter in this messy house, with HSM3 playing loudly in the background and little girl giggles punctuating the air, I’m good here.
And that, is a beautiful thing.
Filed under Faith, Most Everything | Permalink | Comments (2)Tagged with: Florida • MS • TuTu Tango
A prayer…
My friend, Mandy, isn’t feeling well. Mandy is the strongest woman I know, outside of a litle lady named Dannie, who happens to be Mandy’s mama. Mandy used to tease me about being sick all the time. I told her it was because she didn’t have kids that she was well all the time. I never got sick before having babies. 
And then Mandy had a really difficult delivery and time after her sweet Olivia was born, and not only did Mandy get sick more, but she worried more about being sick. It’s been a struggle for her to overcome the fear.
Last week, she had a headache and some fatigue that didn’t go away like it should have for a working mama (come on, we’ve all got a headache and some fatigue). She called the doctor, got some meds, and then still didn’t feel better.
Because she’s got a amazing physician (yep, I recommended him), she’s getting good care. But as a GP, he can’t do it all himself. So she’s waiting for the needed tests and diagnosis.
Until then, she’s sick, barely able to care for herself. She and Josh have been blessed because Dannie has taken both Mandy and Olivia home with her so she can watch over both of her girls. A mother’s love is unending, isn’t it? Thankfully, Mandy and Dannie have a friendship as well as a love.
The waiting is difficult. The doctors have mentioned the possibility of MS as a diagnosis, and we have some knowledge of that. Mike’s mom had MS back so long ago that they didn’t offer her any treatment at all. My sweet friend, Mika, has MS and is on a treatment plan that allows her to do things that, frankly, amaze me. (She’s one of my heroes.)
I’m too far away to take Josh dinner while he’s home alone and missing his girls. I’m too far away to take a turn staying with Mandy to make sure she’s ok. So I’m asking people to say a quick prayer… for knowledge and healing and peace.
Filed under Faith | Permalink | Comment (1)Tagged with: Josh • Mandy • Mika • MS • prayer
