Category: Life with ALS

On the Eve of my 42nd Birthday

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You know those memory flashbacks that Facebook is so fond of posting, giving us the choice as to whether or not we want to remind others of what happened on that day 1 year, 2 years, or 5 years ago? So this one came up for me today: On the eve of my 40th birthday. Sometimes I’m hesitant to look at the memories of the past because…they hurt too much. And yet I don’t hide that option from my timeline. I’m trying very hard to look back and deal with, if not make sense of, the past couple of years of life. I haven’t wanted to feel the hurt there. There is a major part of me that thinks that feeling the hurt is the same thing as letting bitterness take root. And I want to be very clear – they can be co-mingled for sure, but they are not necessarily the same thing.

And I’m finding a bit of release in embracing the fact that I can still hurt over very real relational wounds without being bitter. I’m allowing myself to feel things a bit more and that means more tears, darn it, but so be it.

I was reading again in the Psalms this week and read this from Psalm 15:

O Lord, who shall sojourn in your tent?
    Who shall dwell on your holy hill?

2 He who walks blamelessly and does what is right
    and speaks truth in his heart;
3 who does not slander with his tongue
    and does no evil to his neighbor,
    nor takes up a reproach against his friend;

I think I understood something that day. From January through the end of May we were not allowed to speak of what happened. I really wanted to. I REALLY wanted to come June. I didn’t. But there has always been this thought inside me that one of these days I will. I’ll write out the whole thing from our perspective just so there’s a fair representation of what happened. I’ve been waiting for some untold amount of time to pass so I can finally unleash it all.

And yet. He who walks blamelessly and does what is right and speaks truth in his heart; who does not slander with his tongue and does no evil to his neighbor, nor takes up a reproach against his friend…that is the one who will sojourn in the tent of the Lord, dwell in His holy hill.

I got the message that day. There are some hurts that may linger for a lifetime. There are some stories never meant to be shared. God hears and that’s enough. It has to be.

So on the eve of this 42nd birthday, while I’m storing a prepped turkey in the front seat of the car in the garage here in Bozeman, Montana, I’m remembering an evening of sweet girls making pies and taking silly photos and watching a Christmas movie and then eating one of the pies and I’m grateful for this space of our lives. We’re in a good place. Educationally, we’re in a better place. Spiritually we’re working towards the same in our hearts. And I’m thankful.

I’m thankful for parents who stayed together through the good and the horrible. I’m thankful for a 4-year period of time where I could live close enough to them to be involved in my mom’s care during her last years. I’m thankful for fourteen little ones who softened our hearts in a fresh way over and over and over. I’m thankful…for the winter here (because if I say that one enough it has to come true, right? Where’s my sweater…)

I’m thankful for the hope of selling our OKC house soon. I’m thankful for the new relationships God is building into our lives. I’m thankful for a warm house here. I’m thankful for hope, for hope is sometimes all I have.

There was once a time when hard things happened in our life and I lost my way. I’m thankful God led me through that wilderness into a place of trust again. And trust in such a way that this time, though I’ve been wandering again for a while, I have not been lost.

And, in fact, I have a pretty clear view of where I’m heading.

And I’m grateful. Tears and all.

Happy Thanksgiving

 

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Missing Milestones

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Dear Mom,

Truett is getting married tomorrow. Maybe you know that or maybe you don’t. I have no idea. I think you had an idea earlier this year that it was coming and it it’s here and it’s super fun, except for this void that is noticeable to me because you aren’t here. Because you would have LOVED this. And you would have been a major presence here. And I wish I could somehow communicate that your lack of presence is felt.

The world is still moving and all of us are moving right along with it and there are days we’re pretty normal, I’m pretty normal, and then all of a sudden we have something major happen, something you would have absolutely loved, and your absence screams to me.

And so I cry tonight because I still miss you. And Michelle misses you. And Dad…oh, how he misses you.

And I just needed to say that tonight.

Love, Megan

Stepping Back into a Scary Place

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WritingSometimes sadness gives way to success, if you want to call it that. I can think of several gals who, after experiencing or currently experiencing really super hard things, started writing about it and became internet-famous. I remember praying once that I would be okay with a lifetime of mediocre blogging if it meant I didn’t have to experience the things those gals have had to. Because I’m super deep like that.

As it turns out, I have nothing to worry about. For me, sadness simply gives way. It dries me up. It takes me to a dark, lonely place where, even if there are people out there who understand and maybe want to walk me through it, I simply do not want to go there and thus I don’t.

I just looked back at my blog. The last post was April 8 and the post before that January 28. Prior to this year, it could be said I spent too much time on my blog. And now: nothing.

January ushered in a six-week period of hell in my heart. Amyotrophic lateral sclerosis is just such a terrible thing and no words can adequately describe how it feels to watch someone you love experience the devastation of that. When my mom died in February, I knew it was coming, so I felt like I should have been a little more prepared. People lose their parents every day, right? But I don’t. I hadn’t. And then suddenly I did and in truth, I wasn’t ready for it and I’m still angry about it. And it’s been almost six months. So six months shouldn’t still be preventing someone from writing about it, talking about it, crying about it, right? But there is a place deep inside me that feels like I used up all of my grief capital with people ages ago and I should really move on now.

Likewise, our foster care story turned the page into a really sad chapter in February as well. And as it happened during the same month of caring for my mom during her last days, we just closed the foster care book for a while. For almost six months.

Next week we open it back up again and add two babies to the chaos of our lives and I must say, it doesn’t feel nearly as romantic as it did the first time we welcomed a new child into our home for a short stay. Our experiences with the system have tainted me, frightened me, and made me second-guess our involvement altogether.

And yet, here we go. Life is just incessant in its constant ready-or-not-here-I-come railroading of my existence.

But then, what would it be if we just stayed in the same place forever?

I imagine…it would be death.

 

A dark and broken place

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There’s a McDonalds I come to on Tuesday nights. I spend $1.08 and get a drink, sometimes tea, sometimes Coke. Sometimes I just get water. Once I ordered nothing at all. I sit here for 75 minutes while the girls are nearby attending choir. There is free wifi here and lots of fodder for the people are broken file. Last week I watched four teenagers eat burgers while two of them pawed each other the entire time and I wondered if they had parents or if their parents cared or if I would one day be foster parenting their not-yet-baby. Tonight there is a couple nearby. She’s crying. He’s yelling. Their toddler baby is wandering close by and their kindergarten age boy is climbing on the play place. I hear DUI and I hear you don’t care and I hear pain. A lot of pain.

On Sunday night Maddie and I stopped at another McDonalds on the turnpike. The options between Oklahoma City and Tulsa are pretty limited when you need gasoline and are hungry. We went in and as we were finishing up we saw a 40-something cowboy come in with a 10-something boy. The man hugged the boy. He hugged him again and again. And the boy was crying. And the boy walked across the restaurant towards the other door where his mother was waiting for him. And he held out his hand to his dad and waved one more time. And the dad held back tears and waved back and then turned around and walked out the door he came in.

And I broke down in tears right there in the McDonalds. Much like I’m about to do right now. Because there is so much that is dark and broken in this world I can hardly breathe.

I went to Owasso this weekend to file some will and trust parents at the county courthouse for my parents. It was the final step in what turned into six month process of me trying to help them get their legal lives in order. I mediated some tension between my dad and the hospice nurse who came out for the first time. Having hospice step into the story was not an easy move for my parents. It is a necessary one, but necessary does not equal easy.  And I watched my mom. And it was hard.

And I’ve been so quiet about the boys lately because they have grown right into my heart and their story is my story and when their story takes a turn next month it’s going to rip a hole right through me.

And there is so much that is dark and broken in this world I can barely breathe.

I can’t pray. I can’t talk. I can’t think. I can only cry.

And I have to hope that God hears my tears and translates them into the prayer I mean them to be.

Because there is just so much that is dark and broken in this world I can hardly breathe.

Happy Birthday, Mom

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My mom turned 67 today and we celebrated by invading her space with 8 additional people and being present with her for the evening. I’m thankful to be able to celebrate with her today.

I made French Mousse for her birthday because she really can’t handle breads and cakes anymore. I’m here to tell you, the birthday mousse was a happy thing that may become a more permanent rotation on the birthday menu around here. It was pretty fantastic if I do say so and my ability to follow a recipe is still intact. *grin*

In other news, I went to Walmart earlier today for the ingredients, only I’d forgotten to search for them before I went. So I googled on my phone “French Mouse Recipe” by accident. And, y’all, that’s a completely different type of food and not one I was willing to experiment with today.

So, Mom, your real birthday present today was that I caught my spelling mistake and found the right recipe.

I love you, Mom.

Happy Birthday

 

Saturday Silhouette

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I’ve been doing some legal work for my parents this week that requires I check my emotions at the door in order to engage with what I need to do here. This has happened more than I like to admit over the past 15 months and I’ve found that when I check my emotions at the door for one thing I check them at the door for everything. And then I can’t feel anything at all. I don’t like not feeling anything at all, but sometimes it beats feeling everything all at once.

Because once I start feeling I can’t stop and it’s ugly. It usually gets triggered by something unexpected. Yesterday it was triggered by this song by Owl City, so I thought I’d post this today and sign off.

Silhouette by Owl City

I’m tired of waking up in tears
Cause I can’t put to bed these phobias and fears
I’m new to this grief, I can’t explain
But I’m no stranger to, the heartache and the pain
The fire I began is burning me alive
But I know better than to leave and let it die
I’m a silhouette, asking every now and then
Is it over yet? Will I ever feel again?
I’m a silhouette, chasing rainbows on my own
But the more I try to move on, the more I feel alone
So I watch the summer stars to lead me home
I’m sick of the past I can’t erase
A jumble of footprints, and hasty steps I can’t retrace
The mountain of things I still regret
Is a vile reminder that I would rather just forget (No matter where I go)
The fire I began is burning me alive
But I know better than to leave and let it die
I’m a silhouette, asking every now and then (Now and then)
Is it over yet? Will I ever smile again?
I’m a silhouette, chasing rainbows on my own
But the more I try to move on, the more I feel alone
So I watch the summer stars to lead me home
Cause I walk alone (No matter where I go)
Cause I walk alone (No matter where I go)
Cause I walk alone (No matter where I go)
I’m a silhouette, asking every now and then (Now and then)
Is it over yet? Will I ever love again? (Love again)
I’m a silhouette, chasing rainbows on my own
But the more I try to move on, the more I feel alone
So I watch the summer stars to lead me home
I watch the summer stars to lead me home

Tea Party

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Recently my mom gave me her grandmother’s china and several of her pretty serving pieces. As I was storing them away the thought came to me that my mom can’t really enjoy a trip to a proper tea shop anymore, so I decided to bring the proper tea shop to her. We set the table with my great-grandma’s china and I made scones, Devonshire cream, chocolate covered strawberries, lemon bars, and chicken salad sandwiches on croissants. There was also English Breakfast tea, of course.

It was a lovely lunch today with the six ladies (my mom, myself, and my four girls) and worth all the time in the kitchen both in prep and clean up. And now we have a lot of scones left over, so guess what’s for breakfast tomorrow?

A Sad Day

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Hard Stuff
A juxtaposition from today: Preparing to say good-bye to Baby A while simultaneously preparing for a weekend visit from my parents. My mom has ALS and now requires a hospital bed for sleeping. Sweet friends arranged for us to borrow one for the weekend and even while the reality of this, a hospital bed in my living room, lie waiting for one effect of the fall (my mom’s illness); the diapers, formula, onesies, teddy bear, and hospital paperwork being tucked in a small bag awaiting pick up along with a small babe was evident of yet another (the need for foster care).

And as I type this I’m still wearing the same shirt I’ve had on all day and I still smell like the mother of a wee infant – eau de spit up – and my arms are empty. We pray for the future for this little one and wonder what will be and can only hope God hears and that He cares.

My Dad’s Birthday

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My Dad's BirthdayToday my dad turned 69. I drove to Owasso with Katie, Millie, A23m, and A5w to be with my parents and celebrate. I asked my mom what would she cook for dad if she could and then I went to the store and got everything we needed for that meal and made it.

My dad has always erred on the goofy side and this picture is proof. I was happy to celebrate with him today and hope for many more.

Walk & Roll for ALS Awareness in Tulsa

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ALS Walk & RollWe hitched up the wagon and headed back home today. Okay, we didn’t quite make it all the way home, but we did make it to Tulsa where we participated in the Walk & Roll for ALS Awareness with my mom. You can see her and my girls in the photo above, with my dad popping up in the back. My sister and most of her crew came too and a lot of my mom’s friends, so it was a meaningful time. Only…I just wish this cussed disease didn’t exist and there would be no need to raise awareness for it. That’s all.