The Year of Firsts

Surprisingly, we are half way through our "year of firsts". It doesn't feel like it at times. Sometimes it feels longer and sometime it feels like we lost her yesterday. We've already been through some tough firsts - birthdays, anniversaries, events that she was a huge part of. They were hard. We are coming up on a season of really tough firsts. The thing about them is, we know they are coming. Thanksgiving, Christmas, New Year's - we know they are coming and we know they are going to be hard - there's no getting around them but at least we kind of have a heads up.

The firsts that get me are the ones that sneak up on me. The first time I was sick and wanted my mom. The first time Cole got a home run and the game ball and he wanted to tell her. The first time I figured out how to "do" my hair so that I looked like I just rolled out of bed... but in a cute way... not like how I actually roll out of bed. The first time I made a recipe written out in her handwriting. Those sneaky little ones are the ones that really get me. And those are mean because you don't see them coming - you don't get a heads up. 

That being said, there are some "firsts" that come and don't make me sad but rather, make me smile and sometimes even laugh. Tonight was one of those nights. Tonight, we played Wii baseball which is not a new thing. The thing about it was that tonight, I was really paying attention. Tonight I realized that mom's Wii character was on one of the teams. Tonight, Cole got so excited that Jahbee was on his team. Tonight, Jahbee played her ass off getting a home run and several outs in the outfield. But the best part about her character popping up on our Wii is, she built this character. I remember her doing it. We had taken the Wii to their house - probably pre-Cole - and she built her person, complete with glasses and a big grin. Then, she named it. Seeing the name she picked pop up on our TV tonight gave me the giggles and reminded me of just how dang funny she was! You see, one day, probably 15+ years ago, Mom got a piece of junk mail addressed to "Merlin Blankinshit". We laughed about it and threw it away but, when it came time to name her Wii character... she went with "Poop Wizard" - you get it? Merlin = Wizard, Blankinshit = poop... Poop Wizard! I mean, that is hilarious!! 

So those are my favorite firsts. The firsts that pop up and punch me in the gut but make me reflect on what an incredible person she was. She was spectacular. And based on the baseball game tonight, she still is spectacular. 

I miss you, momma. More than words can describe. I hope you know that we are doing ok. That you left us with enough love and funny to get us through. I love you. I'm thankful for you. io

Prolonged Grief

From Catron:

It blows my mind that we haven't done a post here since January but, I love that our last post was mom's VERB post. It struck such a chord with so many people, I think it was right that it be there at the top for a while. But now, I'm back. Writing is therapeutic for me and, I have a lot of things on my mind so, consider yourself warned.

Today I want to talk about grief - about grieving. It has been 3 weeks (and 4 days) since mom died and I told Wyatt last week that I felt like maybe something was wrong with me, that maybe I wasn't grieving the way I should be. I felt like my heart wasn't broken enough, that my world wasn't shattered enough, and I felt a bit like an asshole for not curling up in the corner and crying all day, every day. I felt like my love for mom, our relationship, and her amazing-ness was/is worthy of absolute heartbreak and world-rocking sadness, but I didn't feel it, at least not to the extent that I thought I would or should. Now, don't get me wrong, I cried big ol' fat tears when she took her last breaths. I cried big ol' fat tears when I had to leave the Hospice Facility. Hell, I'm crying big ol' fat tears right now. But, my point is, more often than not, I'm happy. I'm laughing. I'm head-over-heels for my husband. I'm inspired by our kids growing up. I'm amazed by my sweet family and friends. I'm ok. And I was feeling guilty about that.

Then, Wyatt and some of my bests pointed out a few things to me:

1. We have been grieving for almost 2 years. We started grieving the minute we realized she wasn't tripping all the time because she just clumsy. We grieved when she was diagnosed with ALS. We grieved when she lost her ability to write. We grieved when she lost her ability to walk. We grieved when she lost her ability to talk.

We have grieved so many little losses and so many big losses over this time that yes, perhaps the "final" grieving stage may look and feel a little different than had we lost all of these things, and her, suddenly. We've talked often about which is worse, a sudden loss or a prolonged loss and there is no right answer - loss is loss and grief is grief no matter how long it takes.For those of us in the prolonged grief stage, we may feel some relief that she is free from the body that had stopped listening to her. We may feel some relief that we don't have to fear what the end looks like for her anymore. Relief is ok; I know she is relieved.

2. We gave it our all. From the moment she was diagnosed we poured every ounce of love that we had into her and she poured it right back into us. I think we've, for the most part, always lived that way but we really turned it up a notch these past 2 years. I know, without a doubt, that we left nothing on the table. Of course there will always be things I think of that I wonder if I said, little things I wish I had said, but, the big stuff, the stuff that really matters, she knew and she felt and I have complete confidence in that. She was loved. I was loved. We loved.

3. She was ready. Mom was always very clear about how she wanted to leave this world long before ALS ever came into our lives. When she was ready, she wanted us to let her go. More specifically, when she was ready, she wanted us to make sure that the covers weren't tucked too tightly around her feet, that her hair had some volume, and that she didn't have any whiskers on her chin, and then we could let her go. Mom was a do-er, and even though ALS stole most of her verbs, she DID until she couldn't any more and at that point, she was ready. We knew it in our hearts, we could see it in her eyes, and we knew it specifically because she told daddy she was. The amazing thing is that, she told us she was ready, and then waited long enough for all of us to get our last hugs and last words of love in before she left. She prepared us, as best anyone can, for this day and, once again, she went above and beyond.

So, no, my grief doesn't look like I thought it would and that's ok. It's there, I'm not in denial, I feel it, but I feel her more than that. I feel comforted and supported and loved by the people around me and by the people that knew her and loved her, too. I see her - in my kids, in butterflies that show up randomly, in pretty skies, in my dad. It's been 3 weeks and at the same time, it's only been 3 weeks. I know this could all change tomorrow and perhaps there will be days I spend crying in the corner... but I also know that if/when those days come, the next day I'll get up and I'll go VERB like my momma!

i.o. - Cat

Verbs - from M

I wake up almost every morning feeling normal. Before I try to move and discover I can't, I think about what I would like to do today if ALS was just a dream.

Here's today's plan:

I will ROLL OVER on my side and CURL UP in a fetal position for a minute, then JUMP (really) out of bed. Both feet on floor, I will RAISE BOTH ARMS over my head, look up at the ceiling and STRETCH my back. I will STANDUP HUG Bill with 2 arms for a long time. CALL my whole family to come home. I will GO POTTY all by myself. BRUSH my teeth STANDING in the shower with hot water pounding on my head. RUB lotion all over me. DRY my hair, BRUSH it one hundred times and maybe PAINT my face a bit. DRESS in tight blue jeans and a not-stretchy shirt and relish every ZIP SNAP and BUTTON. PULL on my socks and my cherished cowgirl boots. I will HUG Bill again and PLAY-GALLOP to the kitchen. POUR a cup of coffee and HOLD the mug in two hands. COOK and EAT runny eggs and crunchy toast. DRINK a glass of water. I will CALL some of the people I love and TELL them I love them.  Bill and I will WALK around and look at the outside of the house and hold hands.  I will PLAY the piano and KNIT for five minutes.   I will DRIVE too fast with the windows open and WCPE playing too loudly on my way to meet Deede at a restaurant on Person Street for pork-belly sandwiches. I will go home to HOLD my family. KICK the ball with Cole. CHASE Beckett. PLAY hide and seek. Ask lots of questions. SQUIRT shaving cream in the air. FLY airplanes and RUN kites down the street. TALK about stuff. ROLL in the grass and HUNT for bugs. WASH my hands with hot soapy water. HUG. KISS. SNUGGLE.  SING Cowboy Joe with Catron and Phoebe. For hours. Family dinner date. I will DRINK a dirty martini. Order caprese salad, veggie pizza, sea bass, roasted Brussels sprouts, popcorn, hotdog, cashews and bacon. I will EAT as much as I can.  Another martini. More I love you calls. Then home with my family to SIT in my Mama's old chair with somebody else and laugh and TALK and TELL stories until my day is almost over. I will HUG and SAY I love you one hundred more times. Then I will CLIMB in bed unassisted, put my head on Bill's shoulder and go to sleep. I'll wake up in the morning and wonder what I would like to do today.

ALS kills motor neurons.
It also kills VERBS.

Sitting - from M

I have never been a good sitter. More a squirmer, wiggler, fidgeter, pacer, putzer.  I never sat still. When I watched TV, I knitted or did crossword puzzles. When I went to the movies I sat on one leg, then the other, or left early.  When I watched my children play volleyball, I paced. When I waited for food at restaurants, I made origami frogs out of napkins. Now I spend 99% of my time sitting or lying down, interrupted only by moving between the two. I can't talk so I spend a lot of time looking and listening. For these I am grateful.

Enough of that.  Here's the good news. ALS sucks but it has also given me many gifts. Two of them are looking and listening - more. I have seen and heard things I probably never would have before ALS grounded me.

The path a breeze takes across a tree.
The path a butterfly takes when it's just playing.
The pattern branches and stems make when the wind blows.
Leaves can float upward.
How many bird voices I can hear.  I wish I knew who was singing. My father did.
The cars whooshing down the street sound like the ocean.
How nervous the wrens are and how chilled the cardinals are.
Leaf blowers are auditory bullies.
Walkers who hold hands talk more.
How much the sound of a little plane's motor changes on the short trip over my house.
The free fall journey a leaf makes on the way down.
The hummingbirds will come if I am very still. 
How many little flying things are in my yard.
The gurgle of the little pond fountain never repeats.
One dog barks, then two, then three.
The rare thud of a pine cone hitting the ground.
You can watch the sun go behind the tree with your eyes closed.


I wish I had discovered these earlier.

WORDS  (not funny) - by M

When I was a sophomore in college, I took a psychology course in summer school. One of those 200 students stuffed in a hot stadium seating old classroom at 8 am classes. The teacher was a young, very geeky, slightly too hairy visiting professor. He asked us to call him Paul. He managed to fascinate this group of unmotivated sleepy students - well at least one of us. When we came in to class he was usually sitting yogi style on the table at the front of the classroom with his too big Birkenstocks neatly placed on the floor in front of him. One morning he wasn't there. About the time we were deciding to bail for the coffee shop, he walked in the back of the room and said “Masturbation.  Repeat after me, masturbation". Confused and uncomfortable,we responded weakly. He continued his prompt maybe 20 times as he walked to his table while we responded with more confidence and volume with every repetition. When he got to his table and settled himself, he looked around the room and said "is anyone still uncomfortable saying or hearing the word “masturbation”?  Okay, now we can discuss it".

Harry Potter says, “a word you can't speak has power over you.” 

I'm fascinated by words. Phoebe thinks there are too many of them. I collect them. I think they are our most power weapon and ally. I am usually not afraid of them. Some are fun to say like falafel and onomatopoeia.  Some represent my answer to world peace - tolerance and kindness. There are words I could never hear again and be just fine - like ointment, gristle and panties. Words that make my heart hurt like cruelty and stupidity. Words that I don't use because they are too adult, too personal and too awkward like masturbation, intercourse and die.

Talking (typing) to our hospice social worker last week, I started a sentence with "After I die..."  It was one of those moments when multiple strong contradictory emotions and revelations all collide in your brain.  The strongest was the revelation that I had not used those words before. I didn't think I had been avoiding them but apparently I had. Anybody who has done their homework knows ALS has a 99% mortality rate. This is not news. So Paul and Harry Potter, I am using the words.

I am going to die. No more "when the time comes", or "at the end" or "after I'm gone".  I am going to die.  Maybe tomorrow if lightning strikes, maybe in 20 years if I'm in line for a miracle. The next feeling was the unexpected relief of having spoken the words. No more being politically correct with myself. No more dancing around the word because I don't want to upset anyone or make them uncomfortable.

Everyone's assignment now is to repeat the words 17 more times. Is anyone still uncomfortable saying or hearing "You are going to die?” 
Okay, now we can discuss it".


-M

The elephant in the room

Man, we've neglected this thing a bit haven't we?? Whoops.

I felt the need to put some thoughts down tonight and, to be honest, there's only one person I really hope reads this post.

Momma, I love you. I cannot even begin to understand what must go on inside that amazing mind of yours. I'm sitting here with so much I want to say to you but I can't even get my head wrapped around my thoughts. Dad is going out of town this weekend and Phoebe and I are your substitute "caregivers". I really don't like that word. What I really want to say is that we're having a girls' weekend (with a husband or two and some children included). What I really want to say is that I'm spending the weekend with my mom. I don't want to say that I'm "taking care of my mom" this weekend. It makes it sound like a chore. Like a to do list item.

Mom, you are not a chore. You are not a to do list item. You are not a burden.

You, momma, are the woman who has taken care of me my entire life. You've loved me, supported me, picked me up, kicked my butt, encouraged me, praised me, comforted me, taught me, guided me, and stood by me through every up and down. There were seasons when I know it had to have been a struggle. I had some serious downs. The one thing I always knew I had though, even when I felt like I had nothing, I always knew I had you behind me.

I wish, oh how I wish, I didn't have to "take care" of you this weekend. I wish you could do all of these everyday tasks that we all take for granted by yourself. I wish that you didn't have to worry that your helplessness was going to make us sad. It's going to make us sad. There's just no getting around that. It's the elephant in the room. I'm sad. I'm angry. I'm scared. But, most of all, I am honored and grateful that you are still here for me to take care of. I'm grateful that I have the chance to love and support and care for you.

There is no greater gift from a parent to a child than their unconditional love and support. I'm grateful for it everyday and, I'm a better parent because of it. To be able to turn around as a child and give that back to you, because I want to, not because I have to... I just hope that you see and feel that same love and support that I have always felt from you.

I love you, momma, and I can't wait for this weekend!

io

Don't go chasing butterflies...

from Cat:

Mom took a nasty spill on Wednesday. She and her wheelchair went off of a curb and landed hard on the pavement. 7 stitches, 1 missing tooth, 3 broken teeth, 1 broken hand, and some hurt feelings later, she is home and doing as well as can be expected.

I was working when dad called to tell me that, while everyone was ok, he was on his way to the ER to meet mom and the ambulance because she had fallen at Lowe's. He told me that he had been in the store buying what has now become the most expensive basil plant ever. He turned around and mom wasn't there. She likes to pace in her wheelchair and she also likes to go fast. She has been known to pull a Houdini before so dad set off to find her. He told me that he had to look a few different places before finally going around a back corner and he saw her, and Amigo (the wheelchair), down on the pavement. Thanks to the help of some awesome Lowe's employees and Wake County EMS, he was able to get her and the chair up, get her into the ambulance and to the hospital where the staff there stitched her up and took great care of us all.

When I got to the hospital, mom gave me a funny look and said, "Did daddy tell you what I was doing?" I said that I thought she was trying to get around a display, over shot it, and her wheel slipped off the curb. She got this sheepish look on her face and shook her head. Then she looked at me with a smirk and said... "I was chasing a butterfly."

Say what??

Yep, she saw a butterfly and wanted to see what kind it was so she was following it when she ran off the curb. Then she told us that she didn't even know there was a curb there! Daddy said, "The big yellow stripe painted on the ground didn't give you a clue?" Mom kind of giggled and said, "I wasn't looking at the ground, I was looking up at the butterfly!"

Now, I tell you all of that so I can tell you this... after getting her home, washing her hair in the sink, and fixing her some soup, daddy put the whole day into amazing perspective. He said,

"You know what? At least you were out there chasing butterflies."

That statement struck me right in my heart. Yes, at least she was out there chasing butterflies. At least she was out there chasing after something that makes her smile.

ALS is a horrible disease. It can easily become as emotionally and psychologically debilitating as it is physically. My momma isn't going down like that. She has no control over what ALS does to her body but she is not letting it beat her spirit. She's out there looking up. And consistently beside her in that fight is my daddy - constantly supporting her, dancing with her, encouraging her, making her laugh, loving her, and taking care of her.

So, my blog title is a bit misleading because I mean the exact opposite. Go chase those butterflies. Find something that makes you happy or that brings joy to your life and you do it. And if you happen to fall off of a curb in the process, I pray that you have someone beside you who will feed you tomato soup while singing, "Good 'Fang', Good 'Fang'" to you... because that is life. That is living and that is loving.

and this is Fang...

oh man, she's gonna kill me! :)