It’s been a frustrating few days. My wheelchair footrest has been broken, and I’ve been trying to get the company, California Home Medical Equipment, to fix it since May. I won’t even go into all of the mishaps between then and now, except to say that they finally picked up my chair on Wednesday, and left me with a loaner that makes the electric chair seem like a lounge seat on Air Force One.
The loaner chair was rock hard, and too big for me, and I couldn’t reach the button I needed to push in order to switch the chair from driving mode to seat adjusting mode. It was a very uncomfortable two days, and I called the company right away to tell them I needed my chair back. They were supposed to make many changes to it, switch out the battery, revamp the armrests and the controls which are becoming harder for me to use, and do a general maintenance check since the chair is now two years old. But I couldn’t stand one more day in the loaner from hell, so all they fixed was the foot rest, and now I’m getting my still-flawed-but-sorely-missed wheelchair back. If you can, I would avoid working with CHME.
Being uncomfortable in your wheelchair does not make it easy to handle other challenges with patience and a calm demeanor, and that is why the unfortunate following conversation took place this morning, when I was still sitting in the iron throne. Scarlett and I were really getting on each other’s nerves, as I kept asking her to get ready for camp by brushing her teeth and putting on shoes, and she kept climbing into a storage box instead of listening. Finally, I’d had it, and I raised my voice. Let me just say that my voice isn’t even that loud anymore, but my daughter always gets the picture, and responds not like a contrite six-year-old, but more like a demonic 16-year-old.
So by the time we got into the car, after I had shakily navigated my monster chair down the ramp in our garage and up the ramp into our van, and she asked me to put on the my little pony soundtrack, I told her it was not happening because she had been disrespectful.
“You can’t talk to me that way,” I said.
“YOU can’t talk to ME that way!” she shot back.
“I’m not talking to you in any way,” I told her. “Right now, I’mnot talking to you at all.”
And then…
“I wish I didn’t even have a mom!” she yelled.
“Well, don’t worry, soon you won’t have one, honey!”
I know. And right now dictation is having trouble picking up what I’m saying through my tears. I said that to her.
She was quiet for a minute, and then asked, “Why?” but her voice was still angry, challenging, and it did nothing to soften me. I couldn’t get any words out.
She continued. “Because you’re going to die.”
“Yes” is all I said, and that was the end of it. We kissed goodbye, and she went off to camp. I had wanted to apologize for saying it, I had wanted to take it back, and be reassuring. But in that moment, I didn’t know how. I really didn’t.
I’ve said it before here, I’m not going to die soon. My doctor thinks I have a couple more years, although I don’t know what those years will look like. And I wasn’t trying to be cruel to my daughter, I was just reacting. And then I was thinking about how quickly two years could go by. About how, to me, that does seem soon.
And so today, all I have is a confession. I was not the best mom this morning. And I will talk to her about it later, but for now, I think I’m going to cry a little more.
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I am crying with You. I am so sorry, Sarah. So Cry, breath deep, and try again. You are amazing and this was only a moment.
As Moms, we have ALL said things we regret. Be gentle with yourself … You are human. Kids have a knack of saying things that cut to our core. Cry as much as you need to, and then start planning the lesson you will teach later today on the topic of “forgiveness”. Hugs to you … you are remarkable and gracious xoxo
Dear Sarah,
I cannot imagine the times of helplessness and frustration!! My response to your “confession” is to hold you in my heart and be with you as you cry!! Actually, right now, i am crying with you!! The outbursts of anger, so often rooted in grief or helplessness or fear …HAPPEN. We hate it when it happens with those we love the most. You are loved! Scarlett is loved! and this is hard!!
much love,
Gail
Sarah…we pALS all have those days when those words come out! We’re still hurting humans who desperately try hide our emotions so not to burden our loved ones! As for CMHE…it’s unconscionable they are taking so long to fix and check your chair!! Good thoughts from me every day!!
All moms get frustrated and say things we regret, take some time and talk later. I think of you often even tho I don’t know you I follow your every post and can’t imagine your struggles and frustrations of your health, but you are a wonderful inspiration to others and are a great wife and mother. Praying for you today.
Heidi Ernst
Minnesota
I agree with all previous advice…but my first reaction was, why can’t als supporters create a great medical equipment company? startup, anyone? this should never happen again. and its a great job/manufacturing opportunity, also service, high quality, American, needed.
I’m sorry Sarah. I have some regrets and wish I could “do over”. I bet everyone does. You’ll have the chance to tell Scout you love her and she you. You’re real, human and we all say or do out of frustration don’t be so hard on yourself ! You need a pillow for your bum and your spirit today. Hugs your way
Hey… a (hug), because I understand how hard it is to be as good as we want to be, because I recognize your frustration, your sadness. I’m wishing you some peace of mind, an awesome wheelchair, and lots of good days.
As I read your post tears were streaming down my face. Be easy on yourself and we all have had these moments of anger and saying things we regret as we navigate through this disease. You are entitled to these outbursts we all are. Forgive yourself and give yourself lots of hugs from us.
Having just read these nine or ten comments I suggest keeping a copy handy. Truth. They are so right on point and a reminder of our humanity. After reading your post a second time I saw something very different. I saw a very intimate and compassionate interchange between a mother and daughter each acknowledging their deep love for one another and with great courage sharing the reality they face daily.
Moms with or without illness can totally empathize and feel your pain.
Kids push buttons and we are allowed to be on overload, say things we wish we could have back, and cry because things spun out of control.
You are a wonderful Mom. It’s so obvious. Scarlet will be unscathed; she’ll probably be in your lap having let it all go long before you.
You are amazing and ALS sucks.
I am a mom of young daughters as well as a loyal reader and supporter of yours from Philadelphia. Motherhood is so freaking hard. It pulls at our heart strings in a way nothing else ever could. I consider you an incredibly brave woman and a tireless advocate for ALS research and cure. But more than anything, I think of you as a devoted, selfless and loving mama. My heart is with you today.
Disease or no disease, we’ve all said things to our children that we wish we could take back. Please forgive yourself and turn this into a teachable moment for your daughter. You are a wonderful mother. Don’t ever forget that.
Crying with you dear Sarah. Heard of a recent breakthrough earlier this week for ALS researchers. Hoping it is your cure to give you many years to argue with Scout. Prayers and hugs.
Sarah, I am 70 yrs old and have ALS, I am a mother of two and grandma to three grandsons. My husband traveled a lot for his job, and I was alone a lot to parent our children. Believe me, many times I have said things I regretted. When things settled down I would sit down with my kids and we would talk things over. I am a perfectionist and no matter what I do, I never felt it was good enough. I am hoping that by talking to my children (at different ages & different times) I could teach them no one is perfect. I would confess to have been wrong to have said (did) the wrong thing and I was truly sorry I had done/ said something unkind or hurtful, but Mom’s make mistakes and are not perfect. I truly believe that it is good for our children to know that we grownups (Mom’s & Dad’s) do things wrong as much as children do, but it is okay, if you tell some
one you are sorry, and that you love them. Parenting is the hardest job any of us can have, but also the best job to have. I now have two children who are a much better parents than I think I was. I also have three of the kindest and most caring grandsons from 4 to 11 yrs. I love your posts. they give me courage to face what lies ahead for me. God Bless You!
I wish you a life long enough to fuck up bigger than this. If you don’t know how, call me.
You’re amazing. And human.
Teachable moments arrive on bad days as well as good; your baby girl is growing & learning to deal with frustration while you are teaching her compassion for others…..some adults have never learned these lessons…..enjoy the good times …..as for the sorry moments, ” Let it go, Let it go”
……your ongoing love for each other is all that really matters…..keep writing, Sarah……we all learn so much from you!
You are human and we say things we wish we had not said . Scarlett is human as well and prone to making mistakes as well . Problem is the hurt lingers and your memory holds on to things you wish it would forget ! It happens to s all –but I do understand how your situation makes this so real and painful . I ask God to ease your pain and erase the memory . Neither of you meant the words that were exchanged . Again , we all have our moments — ALS moments are just more painful . God bless you and your family !!.p m dnp
Crying with you sweet Sarah. I once told one of my children ‘I will never forgive you.’ My anger should have been directed at this child’s father, but I feared him too much. I wish I could take those words back, more than 35 years later. You are not alone. You are a wonderful mother, and that is what Scout will always remember. You are so loved, and I am so sorry this happened to you both. Praying treatment will come soon enough to help you in your battle with ALS.
Hello my dear,
Yes, all of these wonderful people gave you the best advice, I can’t add anything else other than you are in my thoughts and are loved.
Jon
Ah Sarah, I really can’t add much to the many wonderful comments above…. Jolene’s especially resonated with me. It really is all about love, saying we’re sorry and forgiveness. Love really does outlast all of our very human moments. All Scout knows is how much her mom loves her and how strong she truly is. We ALL love you, Sarah! I’m sure you and Scout are already back to snuggling and giggling and doing what you do best together.
One thing I have learned about being a mom is that we mothers tend to harp and linger on things like this when our children move on and completely forget them. Why? Because all they know is our love. A few words don’t change that – she feels and receives your warm and loving intentions every day. Get a good cry out – and then try not to be too hard on yourself. Words come and go and we move on to the next day. Focus on today. With warmest regards from Philadelphia-Kristine
We are crying with you Sarah ! You are a terrific mom – no matter what you said this morning . And Scarlett knows it too
After reading the column that you wrote, I agree with everyone about the difficult job of parenting. I also wonder if perhaps your daughter’s antics began as a cry for information. Perhaps she wants some information about you . The older she is the more she sees the differences between you and the other moms. My husband is disabled and sometimes my Sarah’s outbursts were less about what was really happening and more about her lack of understanding why our family was different. It might be she needs reassurance. Time for an ice cream social . Maybe this will help. Anita
When my mother was dealing with stage IV cancer, we had an argument in the car. She said “don’t worry, I’ll be gone soon and you won’t have to deal with me anymore” and I said “I can’t wait.” OUCH!
Then she laughed and I followed, which was even more bizarre.
I agree with the comments above. I have been reading for months and felt I needed to comment for the first time.
You write from your heart and you are teaching so many about this horrible diese, but mostly how to be a better person. Thank you so much for sharing. I pray for you, your family and a cure.