Yes, there are actual words to account for my absence here in this space over the past six months or so. And words to account for why over the past year, I haven’t been posting in any regular fashion. Strings of words even.
Sentences such as…
The whole thing started almost three years ago when my mom thought she had bit her tongue. A few months later, her tongue hadn’t “healed” and you could hear it in her speech.
Questions like…
Maybe it’s shingles? Maybe it’s Bells Palsy? What about Lyme’s Disease? Or, Bulbar Palsey? Or, God forbid, ALS?
And two years ago, in this month of April, in this very chair that I’m currently sitting in, looking at this same computer screen, I read a string of words that said,
Life expectancy for Bulbar ALS is 2-3 years.
And I shook when I read that. An electric shock went through my body and my stomach felt hot. I sat there for a long time, with my hand over my mouth, staring at that string of words and I could feel my heart beat deep inside my ears.
Nobody was really sure what was ailing my mom. Every doctor she went to differed in his or her diagnosis of her progressive symptoms. Over the course of a few years, the possibilities were narrowed down to Lyme’s Disease or Bulbar ALS (Lou Gehrig’s disease.)
My mom gave all of her energy and emotion to the Lyme’s Disease diagnosis. There is no cure for ALS. It will eventually take your life. But with Lyme’s Disease, there is treatment. There is hope.
Growing up, whenever I’d ask my mom deeply personal questions, she’d laugh it off by quoting her mother who always said, “Don’t air your dirty laundry to the neighbors.” And that was that.
She never talked about whether she thought this diagnosis was wrong. About what would happen if the treatments didn’t work. About how she felt living inside a physically declining body. About the possibility of death. Not when she lost the ability to speak over a year ago and had to communicate by writing on an LCD writing tablet called a Boogie Board. Not when she could no longer eat through her mouth. Nor when she could no longer walk.
By a single glance from her eyes to ours, we knew that any questions regarding negative outcomes were forbidden. Any discussion of her illness outside immediately family without her consent was also forbidden.
She bravely and privately handled every uncertain day with grace and stoicism.
Me being me…a word person with wide swings of emotion…struggled with not being able to discuss her declining health with her. Her feelings about it.
Last fall, I was sitting next to the bed that had become my mom’s home. There were caregivers coming in and out. The windows were closed. The Chew was playing on the TV and Catherine McCord was on that day making her Pumpkin Pie Tarts. My mom was tapping out text message to her friends, and writing on her board, saying things like, “Those Pop Tarts look yummy. Didn’t you meet Catherine last spring? Now that I’m thinking about it, those pop tarts might be too much work.” Just another day of watching cooking shows.
And in that moment of smells and noise and emotion and stale air and people coming in and out, I wanted to fling the window open, put her pen down, take her face in my hands and ask, “Mom?! Don’t you just want to shout from the top of your lungs, ‘FUCK THIS!!!’??
But, I didn’t move. I sat there silently with my hands wrapped around my cup of chai tea while activity buzzed around me. And, of course, my mom would never yell that. She never swore and she wasn’t prone to extreme emotion.
The Sunday before Christmas, my dad called in the late afternoon to say that my mom’s breathing was labored. I better come over.
When I arrived, it was almost dark outside. The house was quiet and dim except for the lights on the Christmas tree. No caregivers were to be found. I slipped down the hallway to my mom’s bedroom. My dad was sitting in the upright chair next to his spouse of 48 years tenderly stroking her arm. My mom rested quietly on her inclined bed. “Hitched for the Holidays” was playing on the Hallmark Channel.
We have never been an overly affectionate family. Hugs upon greeting someone and saying goodbye – yes – but cuddling, holding hands and such have never been our style.
In that moment, I climbed up on my mom’s bed and cuddled next to her body, my head on her shoulder, like I haven’t done since I was a little girl.
She gently reached over and patted my hand with hers. The long fingers. The custom wedding ring with emerald and diamond stones. The self-manicured nails.
My dad asked her if she wanted to watch anything else on TV. She shook her head and wrote, “Hallmark” with a smiley face. My dad patted her arm and said to her, “My sweetie loves her Hallmark channel.”
We stared at the TV while the full volume of what was not being said seemed to fill the room with warm, compressed air like inside a balloon.
We didn’t talk about death. We didn’t talk about her illness. Not about ALS versus Lyme’s Disease. Thoughts on life. Thoughts on life after death. Thoughts on my life without her. What she’s learned in life. No, I want you to know. No, have a great rest of your life. No, don’t waste a minute of it. No, I’m scared.
Instead, we sat in silence watching a grown-up Joey Lawrence from the ‘80s sitcom, Gimme a Break, in a cheesy, made-for-TV Hallmark holiday movie.
But, really, what is there to say during those final moments that can actually be expressed with words? You hope that you haven’t saved up everything you want to say to someone as important as your mother until the end. That you told her regularly what she meant to you, what she has done for you, how she’s inspired you and what you are proud of her for doing in her life. And I know for certain that I did that over the years. But in your final moments with her, there are no words to describe the impending loss.
At some point, I felt my mom squeeze my hand and break the silence by tapping on her board.
I looked over and she’d written, “I’m glad you are here” with a smiley face.
I laid my head back down on her shoulder, squeezed her hand, and said, “Me too.”
My beautiful mother passed away on December 30th. I still can’t believe it. Even typing those words seems surreal. That particular string of words cannot really be a part of my life but, alas, they are.
So, yes, I’m back but I’m changed. Life is different. And my corner of the world wide web will be different.
I feel such built-up excitement over where I will be taking this space over the next few months, six months, years. I hope we can enjoy the journey together. It’s time. I know my mom would want me to get back on it. She always said during times like these, “C’mon, get off the pity party and get to it, Care!”
Please do not feel like you need to leave a comment unless the moment moves you. Death is awkward and sad and emotional and more often that not, words about loss are hard to come by.
I needed to put these words out there because that’s how I make sense of life…through words.
Instead, move away from the screen, pick up your phone and call your mom, your dad, your spouse, your child, your best friend. Let that person know what she’s done for you, what it means to have him in your life, how she inspires you, and what you are proud of him for doing. Go. Git. Do it now. Don’t wait.
With love,
Carrie
So sorry for your loss. I lost my father-in-law to ALS.
Carrie – I was just thinking about you last week and actually check here to see if you had posted anything recently. There are no words for the loss of your mother – I’m so sorry to hear about her passing but I also want to thank you for sharing your story and hers here with all of us. Smiling at that photo of you and her through the tears. Glad to have you back in the blogosphere 🙂
I love you Carrie.
That was so moving Carrie. I’m wiping my tears and heading off to cook up some breakfast for my kiddos and will do so with extra hugs and love this morning. And when I see them off, I’ll call my family. Thanks for the reminder to share our love for one another. Hugs to you!! xo
My heart is breaking for what you and your family have been through. I have been there and can empathize. May you find peace and joy in your memories of your mother as you slowly, step by step, live a new life with her in your heart. Thinking of you.
Betty was one classy lady! She always seemed poised and together, but so full of love and caring, always with a smile, a wise word when asked, and practical, down-to-earth. From the day of Kip & Teri’s baptism to the weeks your family stayed with us before your move from O.H., there are so many memories. And then the many visits since we all left that beautiful island home, including the last one where we met your folks at a restaurant near a ferry landing for lunch. Thanks for your words, Carrie. With tears, I treasure Betty and all of the family she nurtured! She left us too soon. Ruby
Thank you Carrie for sharing this and for the reminder to cherish our families. I look forward to reading your words in this space.
Thank you, Carrie – this is a gift to us all. Calling my family now. XOXO
You mom sounded like an amazing woman. Hugs to you Carrie.
Carrie,
Your post brought tears to my eyes. I’m so very sorry about your loss. It’s so hard to lose a parent. I’m glad you realize that she would want you to go on. “For everything there is a season, a time to mourn, and a time to dance.” Any mother who loves her child wants them to move on and not be unhappy. It’s the best way to honor her memory. I’m glad that you have children as they will help you to heal. You’ll see her in them. When my mom passed it helped so much to have a daughter that I could share all those things I used to share with my mom. Excited to see what your blog changes will be.
Sue in FL.
Carrie, as always, that was so well said. Thank you so much for reminding me how important it is to let those we love know how much they mean to us each and every day. I’m sorry for your family and the heartache you have all been through. Lots of love, Lisa
Virtual hug!!
Hugs from one of your Eugene truffle buddies. Your love bond with your mom will stay ever strong and present. It will be with you for all of your days and never fade. 14 years for me, and her love is still like a warm blanket.
Oh Carrie, I so appreciate your words. They are healing…for you, and for those reading that have in some way been touched in a similar way in their own journey. I too, watched as my mom slipped away, wanting to talk about life and all of the things that were left unsaid. It wasn’t “our way” to do that…I have had to accept it for what it is…the way it was. Betty was such a beautiful woman, inside and out and so much of her beauty and talents are seen in her children…in you! I have been blessed by your words…by you taking the time to share your thoughts and feelings. You honor her in this process…Hugs.
Thank you for your wonderful words and I am so sorry for your loss. I feel your hurt. My mom and I live 3,000 miles apart but we were able to spend the last two weeks together. She is not as well as she once was and there are some questions about her health as we go forward. We spent a few days just the two of us before my hubby and kids joined us and they were wonderful days. Just thinking about her not being just a phone call away is too much to think about. Take care and I hope you find comfort in your memories of her. Glad you are back, I have missed your posts.
I learned so much from her strength and determination all the way to the end when most people would have given up. She lit up my day with her smile every time. Truly an example to live by!
Carrie,
You and Courtney have been in my thoughts since the day you shared the news about your mom. This entry is so beautifully written, thank you for sharing with us all. Hugs to you. Nic
A beautiful tribute, Carrie, and so very well-said. Looking forward to what you have in store here.
My mom passed almost a year ago and I woke up thinking about her this morning. Your gentle but profound tribute brought tears to my eyes and warmth to my heart. The love and closeness you and your mom shared caressed the room in that moment and through your words, in moments to come for your children. Thank you for so beautifully sharing your time with her.
Oh Carrie, thank you for sharing! I have been missing your posts and praying for you as I knew you had to be grieving, processing and regrouping. I cannot even imagine life without my mother, or father, but it is a reality that I must grasp. But I know God will give me the grace when the time comes. I am so sorry that your time came. But as always, God will bring goodness out of the ashes. I am excited you are stepping back into sharing and look forward to reading your posts. Big hugs to you!
Love you sis! xoxo
Carrie, your words touched me to my core. It seems that all of those unspoken words were suddenly spoken in that moment when you curled up beside your mum in her bed. I’m sorry for your loss. You are in my thoughts, sweet lady.
Hi Carrie – what beautiful words! One of my dearest friends lost her husband to ALS in January. Although you grieve throughout the course of the disease, nothing really prepares you for the loss once they are gone. As I have been walking this journey with my friend from the beginning, I can really feel your heart. Thank you for sharing. May God continue to bless you and your family with love and peace.
Julie
Carrie – so beautifully written. I am wiping away the tears and thinking about your amazing mom and what a special daughter you are. Words cannot express how sorry I am for your loss. As we’ve discussed in the past, I unfortunately understand how hard this whole process is to watch your mom go through. Just sucks. Much love to you and your family!! xoxo Heather
Carrie, this is so beautifully written and so heart felt. I look forward to you coming back in your own way and time in this space as you have much to offer the community of blogging. Hugs to you and thanks for making me take a moment and count the blessings and people I’m lucky to still have with me.
Thank you for your beautiful words. I, too , lost my mother 34 years ago and it warms my heart when I think of her each day. I’m so sorry for you loss.
Carrie, you are such a beautiful writer. Thank you for sharing this very difficult journey, I cannot even imagine. Hugs to you and your family.
So sad. So moving. Welcome back, Carrie. We’ve missed you.
Carrie, we all experience these journeys at one point with our parents and, at some point, so will our children. All we can really do is remember to love strong and tell them. This may sound horrid but as much as I loved my mother, when she was so ill, I took a 3 month leave of absence to help care for her. As rewarding as it was, I told my husband if she hadn’t died, I probably would have killed her! Be strong and live life fully. Your mom would definitely want that.
Thank you all for your kind and generous words. They mean so much. xo
oh carrie this is so sad. I bet you miss your mom so much. she sounds like she was a wonderful person. your words are poignant – they brought tears to my eyes. I am sure you have many special memories. I am thinking of you and your family who I am sure are all missing your mom and their grandmother… xoxoxoxoxo kris
Hi Carrie – I had wondered why you had not posted. I am soooooo very sorry to hear of your mom’s illness and your family’s loss. My father had ALS and died 10 years ago. Actually today a nurse asked me about my father’s health history as if he were alive. I had to say he was gone……. Grieving is a tough but necessary process. May you come out stronger and able to help others from what you have learned!
I agree with what others have written – you are a beautiful writer. I still think of the posting you had of your son swimming….. You must find that courage as your son did.
https://lapommedeportland.com/2012/01/a-new-year-a-new-word
Hugs to you!!!
My friend Carrie,
What a beautiful, caring, and loving tribute to your mom and also to your family. Thank you for trusting us, your readers, with your heartfelt thoughts. My thoughts are with you…with love.
Carrie- I read this and it truly moved me. I remember feeling many of those same feelings after my Dad passed away. It was and still is so extrememely hard to lose a parent. I miss my Dad every day. It does gets easier, but like you said, one will never be the same. Thank you for sharing this. We all need to be reminded to love and appreciate those around us whole-heartedly.
Lots of love to you, friend. Carrie
No words just love I send. So much love.
Oh Carrie, you are wonderfully brave and giving to share your words and its deep message with us. It has brought such a special meaning to my day. One of the main reasons that we decided to move from the US to Germany was to be closer to our elderly parents. Even now that we are adults, with children of our own, our parents will always remain a part of who we are and your Mom contributed so much to making you the beautiful, creative and soulful person that you are. Your message will guide me to appreciate every moment I have together with my parents as we are planning our visits together in the coming months. Much, much love to you – your Mom will always be a delicate part of you. Gerri.
you and your mom are beautiful women. Hugs and love Carrie.
Carrie ~
Thank you for sharing this with us. I’m so sorry for your loss. Truly.
Just beautiful. Thank you.
So sorry to hear of this, Carrie. Thinking of you!
Carrie, that was beautifully written and a wonderful reminder about time being precious and how quickly it passes. my uncle passed away from Als a few years ago and my mom is a cancer survivor. we are so lucky to get a second chance with her and she is really enjoying life with her newfound health. thank you for sharing with us, and good for you for honoring your mom by getting back to the work that you love!
Dear Carrie,
What a wonderful tribute to your beautiful mom. I cherish her memories and her uplifting text in September wishing me a year full of God’s blessings in my last year as a first grade teacher. What will stand out in my memories is the way she lit up when she talked about your dad, you, Courtney, Tim and the rest of your family. Although your mom has left way too soon, her memories of how she loved you and all of us will remain.
I love you dear friend! You inspire me daily, and I am so thankful for the gifts you give me by having you in my life! Keep spreading your beautiful words!
Carrie, I know we’ve had many conversations and texting over this. You were truly an amazing daughter to your mom, and she was a gift to you and your family. It’s hard, I know. No words … I agree. It sucks. I’m proud of you and love you very much. Call, text any time you need an ear. XO