Otto sleeps in a crate next to Rob’s side of the bed. He’s not a quiet sleeper. First of all, he snores like a drunk old man. Second, at various times during the night he moves around in his crate so roughly and wildly that I’m almost positive he is transforming into some kind of werewolf, and that when he finally bursts out of his crate, he’ll be wearing a cape he fashioned using only his doggie blankets.
It can be hard to sleep through.
I’m back to wearing the BiPap with nasal pillows at night, which has really put a damper on my goal to never have anything that far up my nose. I’m also using the chinstrap, which helps me keep my mouth closed while I’m sleeping. To quote my friend Kevin Swan, the chinstrap has definitely not brought the sexy back. It makes me look like an emaciated high school wrestler, but I must admit I’m sleeping better.
I can no longer lift my left arm over my head for a stretch, and it’s been ages since my right was able to move that way. So I wake up in the middle of the night with shoulder pain, and if it’s really bad, I have to wake Rob and ask him to raise my arms towards the head of the bed. Obviously, this is the highlight of his night, especially when he was comfortable and snoring just as loud as Otto.
Rob doesn’t actually snore very often, but I think back to the days when I would gently nudge his side to get him to stop. Because I can no longer do that, I just yell, “Stop it!” through my mask, so that he wakes up thinking he’s being yelled at by Darth Vader.
Nighttime rules.
Things have been a little difficult here lately. Stress levels are high, and the lack of sleep certainly doesn’t help. I got angry this weekend over something that really didn’t merit the level of attention I was giving it. That’s code for: I’m too embarrassed to share what it was. Sometimes I’m able to let things go, but this was not one of those times, and I ended up yelling at Scarlett pretty severely.
That upset me so much that I went into my room and started crying, and she followed me, climbed into my lap, and said, “I’ll help you.” Over and over. “I’ll help you.”
Then she went into the garage, where she has a little art studio, and cut up a gold beaded necklace. She put the beads into a plastic orange bowl and came back to my room.
“These beads,” she started. “This is how much I love you. Actually,” and here she sifted through the beads, as if counting them, “I love you more than this.”
This did not stop the crying, but it did shift me from self-pity and regret to admiration for my daughter’s ability to be empathic and stay cool while the adult in charge had a freak out.
People always ask me how Scarlett is doing, and I usually respond that she’s doing great. That she is loving school, that she is dramatic and energetic, that she can read, but that she is still working on her listening skills. I don’t usually share stories like the one above, because it doesn’t feel good to admit to losing your shit, to having your five-year-old be the one who pulls the situation together.
But I’m guessing that with or without ALS, we’ve all had those moments when suddenly a little person in our lives seems like the wise one. This week I am planning to work harder to control my temper, to be better at letting the myriad difficulties go. I have a bowl full of golden beads to remind me of what’s important.
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Regrets, forgets, over reacting, do overs! I have several as well, but one that kept me up lots of nights ~ well listen to this doozy ~ My oldest son wanted to only go to Fenwick so after a summer of tutoring he was taking the final for summer school. Driving to the test I asked where his books were he told me “I didn’t bring them” OMG I lost it, and slapped him! Yes just before dropping him off I cracked him across the face. (DCFS don’t read this) He sulked out of the car and I was crushed that I had lost it. I never forgot that I did that and wished I could take it back. He did graduate from Fenwick but more importantly while playing a “tell the truth” family game 15 years later I fessed up that that event was most regrettable. Guess what ~ he didn’t remember it at all. Still makes me feel bad, kids are so nice about taking care of us too. Hope you have a good night tonight Sarah.
It’s okay to lose your shit….. Not that you need permission. Your daughter’s empathy is from you and your husband. Sometimes parents forget the good they unknowingly teach their children. ALS can’t take that away. What a beautiful story of the beads. That should be published somewhere for inspiration. It touched my soul. Thank Scarlett for all of us who need a warm fuzzy moment. Keep sharing your gift of storytelling for the rest of us in the fight. Thank you
thank you. i have been reading your blog for several months now. am sorry for what you are going through but your perspective is a guiding light for me. LOVE your stories. thanks again
Thank you, Sarah, for your very human loving ” slice of life” story.
I raised 5 children and lost my “shit” with all of them. The regret and remorse
Is a big burden to carry in your heart. Scarlett is a huge part of your love
and charity towards her and your family . Please continue to be the loving.generous, funny person I find in your writing.
Love ,
Judy Dooley
Emily Gallagher mom, ask her , I lost my “shit” with her
Take comfort in knowing we all lose it. My confession would be that when Josh was in the hospital in 2008 for a month and Leah was 3, Lauren 8 months, I lost it. One night, Leah kept toddling over to me asking for things. I was so stressed out that I screamed “GO AWAY!” She instantly burst into tears but I was the one more hurt by how I had probably made her feel. That’s just one example. As always, we pray for you every night and are sending love and hugs
what a sweet child – you created that compassion in her.
Hi Sarah. You do not know me personally, but I worked at Willard in River Forest with your mom. You are an amazing person and a wonderful, caring mother! I read your stories and they are so inspiring! I have heard so many great things about you and Scarlett.
I have two little boys and there have been many occasions where I have lost my patience. When we see ourselves through our child’s eyes, all they see is love. We are their heroes! Even if we think we are failing. If I remember that, then I can forgive myself and start a new the next day. You are a fantastic mother!
This one hit home for me. And the other about sharing movies that you love with her at possibly too young an age (Harry Potter? NEVER to young!).
My son is 16, and very clearly finding his parents deficient and trying in so many ways. We’ve been close till very recently- and now I fear his last memories of me will be seen through the filter of teenaged shittiness. The eye rolls are SO HARD he has to be looking at the inside of his skull most of the time. Anyhow, I feel like I’m running out of time to make up for all the times I’ve lost it, and my life insurance should just be ear marked for all the counselling he’s going to need for having such a crappy mum. Me forcing him to watch Repo Man and Wayne’s World being the top of the most damaging things I have done recently.
Enjoy your golden beads. Generosity and empathy are the foundation for a quality human being.
Fiona
Ah, this is so sweet! No apologies, Sarah. Your little girl is wonderful!
Scarlett is going to fly through this world like supergirl. What an empathetic, strong, creative daughter you have. By the way your prose regarding Otto always, always makes me laugh out loud.
I have been reading your blog for a couple of months now. This story about the golden beads, like all your writing, is so inspirational and touching. Thank you so much for sharing your wisdom.
Sarah – I love reading your blogs and so identify with your feeling and reactions. I was diagnosed in 2013 (after a year of misdiagnosis). Not wheelchair bound yet, but know it won’t be long. Fighting with all I have in me – it’s tough. I do admire both Kevin’s and your strength and humor and try to follow your lead. I will be going in March as a pALS to VA for the 2016 ALS Clinical Trials Guidelines Worksop at the request of my fantastic Doctor to give a “patient’s perspective”. If you are going please let me know – would love to meet you!
Sarah,
I read your blog faithfully because you’re a wonderful writer. Thank you for sharing both the sweet, uncomplicated stories and also the difficult, complicated ones. You shine a light on an awful disease and do it with such grace and humor. Glad you share the bad days too. Keeping it real.
Sarah first thank you for your friendship with Jay your humor keeps us all going and Jay continues to keep his as well we all need our golden beads to remind us to stay in balance
Sarah, you are a wonderful mom an don’t you ever doubt that. Ever. Ahhh, all those losing shit moments we moms have…. ask Michele and Shannon sometime about what I said to them when we were driving through St. Louis in a blinding blizzard and they were truly getting on my nerves! Not pretty. But we are all human. And you and Rob are raising a beautiful, smart, sensitive and funny daughter. The golden beads story is a beautiful testament to how much she loves you.
Love you,
Beth
Sarah you are such an inspiration to all of us. Scarlett is who she is because the way you both have taught her. Such an empathetic child. When my husband had ALS, I lost it one time when I was hooking up his feeding tube. The end slipped and fluids went everywhere. I still feel horrible about that time and cannot think about it without tears. He took my hand and just held it. It has been a long time since his death but I’ll never forget that. He was such a kind and patient person. We all need those kind of people in our lives and Scarlett is yours.