Today is my Mandy’s birthday. I’ve always enjoyed having Mandy’s birthday the day before mine, but this year, it’s extra special.
Mandy’s been sick this year, struggling with hospital visits and physical weakness and all manner of other things since her diagnosis with MS earlier in 2009. At various points, I wasn’t sure if she would be with us for her birthday… or would understand what was going on for her birthday.
Thankfully, neither of those unpleasant options are what Mandy’s birthday is this year. In the last week, it’s as if Mandy has come alive again, moving better, speaking better, being generally more alert and aware. She’s done really well in PT and went on a short road trip with Josh to pick out Easter dresses for herself and their toddler, Olivia.
I don’t know if Mandy’s enjoying her birthday or not, but I know that her doing better is an amazing birthday present for me.
She is strong and principled and loyal and determined. She is the ultimate champion of the underdog, of the overlooked. I am always humbled by her strength and work ethic, by her fierce protection of those she loves. I am honored to be among those she calls ‘friend.’
Happy birthday, Mandy Lou.Filed under Most Everything | Permalink | Comments (5)
Tagged with: birthday • Mandy
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
I wrote last week about my friend, Mandy, and her illness. They did diagnose her with MS this week, and they began a steroid IV treatment Sunday evening. Her strength and coordination improved, as did her general alertness. There are, however, things that haven’t improved… things that concern us.
Two weeks ago, my Mandy was the news editor of the fifth largest newspaper in the state of Louisiana. And she was really good at it. Today, she’s having difficulty completing a worksheet that most first graders could complete with ease. It’s startling and shocking.
It hurts my heart.
Now, MS is a notoriously tricky disease to deal with because it affects each person differently. My friend, Mika, has responded well to the MS drug therapies. Mike’s mom didn’t have those therapies as an option when she was diagnosed with MS.
We want the very best for Mandy. We love her unfailingly. I know Mike must be thinking about his mom a lot these days. I know we’re both thinking that we want things to turn out differently for Mandy.
I keep thinking about the similarities between Mike’s dad and Josh, men who now share a similar path. Mike’s dad is hands down the most compassionate individual I have ever met. He nurtured and carried for Lillie (Eliza’s named after her paternal grandmother) even when Lillie was angry and upset and unhappy to be cared for at all.
Josh talks about reading that MS patients are often angry with their caregivers. I saw that in Lillie. I want to tell Josh that won’t happen, but I don’t believe that. Josh is like Jerry in more ways that he knows. He’s more prepared for this journey than he thinks, though I surely understand his fears. I can’t bring myself to tell him that God won’t give him more than he can handle. It feels patronizing even if it is what I believe.
This is hard for everyone. Mandy’s mom is caring for little Olivia, who has to miss her mommy and daddy. Mandy’s mom has to be frightened for her daughter, for both of her precious little girls. Josh is missing his Mandy, even while she lies in the room with him. Everyone in this hurts.
I’m leaving work early tomorrow and flying back to spend the weekend. My friend, Linda, will pick me up at the airport, regardless of how long my layover in Houston ends up being (I always get stuck in Houston). She’ll drive me to the hospital where I will most likely stay all weekend.
Me being at the hospital with Mandy will allow Josh to go home and rest and play with Olivia.
I’m so thankful for the opportunity to go. I know it will be hard to be there, hard to leave. But I’m grateful to have easily found a workable flight, to have tax money coming in to cover the flight, to have a husband who cares about this enough to send me away for the weekend.
I am thankful that I am far enough removed from my period of doubt that I can say, even in this uncertainty, that I trust in my God to provide, to care for us all.Filed under Faith, Thankful Thursday | Permalink | Comments (3)
Tagged with: Faith • Mandy • Thankful Thursday
The doctors checked my friend, Mandy, into the hospital yesterday for tests. They need to do an MRI to make a diagnosis, but Mandy’s having trouble with the MRI. Have you ever had an MRI? Tiny little opening in a huge machine. The loudest machine I’ve ever heard. It’s no surprise that she’s had trouble with it.
Blessedly, her GP agreed to sedate her for the testing. We’re praying they are able to do the test tonight.
The diagnosis they feel like are most likely are MS or a stroke. We appreciate all of the prayers. We’re hoping they’ll be able to give Mandy and Josh a diagnosis this weekend so they can go ahead and begin treatment to help Mandy begin feeling better.
This afternoon, as I was worried and tense at work, I got the most exciting email from my brother. His wife, Nicole, was in labor. On my way home, I got the call that little London Victoria had made her arrival. I am beyond excited for them!Filed under Faith | Permalink | Comments (3)
Tagged with: Josh • London • Mandy