So far, I have not figured out a good way to dictate a blog post while wearing the BiPAP. My voice sounds comical, like a cartoon villain with post-nasal drip. All the Ms become Bs. To the dictation software, manufactured breath sounds like Os and Hs, so the air whooshing out of the mask adds random letters to my words, ghostly forms that were never really there to begin with. The sound of a secret language. The sound of wind.
It’s not like I have to write this way. I could do the blog after the BiPAP, but since I’m just sitting here staring at the computer, it seems like a solid time to get things done. I’ll always be a multi-tasker, even if my arms don’t work, and even if I’m not actually accomplishing anything.
Sparkling water, Sancerre, sweet potatoes. Whenever my thoughts seem like poetry, they usually turn out to be grocery lists.
These stitched-together lists populate my dreams at night. Partly menus, partly schedules, partly just colors that I saw that day. Last night, I had a dream about overwatered orchids. I woke up craving Life cereal, and when Scarlett crawled into bed with me, the gold in her hair seemed like an idea I had put there to save for later. She smelled like the dog, which is unsurprising since she wears him like a sweater.
Clearly I am losing my mind, but only sometimes.
Scarlett is on spring break this week, but we haven’t made any real plans because we are rabidly awaiting the arrival of my niece, who seems not to have received the memo that she is due today. I can’t wait to see her little face, and watch her big brother react to her. I can’t wait to hear her name, and then figure out a nickname for her and call her only that. I can’t wait for someone to place her in my lap, with the knowledge that she is so small, she will fit snugly over my legs and there is no chance I will drop her.
When my nephew Jack was born, I held the video camera and documented his entry into the world. Since I can’t even hold my phone up to take a picture anymore, that will not be my job this time around. But I still plan to be useful, and if not useful exactly, then maybe just loud. All new parents need a cheerleader. Actually, everyone could use a cheerleader. I want one. He or she can just dress in normal clothes.
Also this week, A Life Story Foundation is releasing their profile of my life with ALS. This is very exciting, and I plan to talk about it more in Thursday’s blog. Kevin Swan and the folks at A Life Story Foundation shared two trailers this week, and you can tell just by watching those 30 seconds of what is ultimately a five-minute video that it focuses mainly on Scarlett. That I focus mainly on Scarlett.
She had a sleepover at my sister’s recently, and when I asked her “what should daddy and I do without you here?” she shrugged and said “just have another baby or something.”
We watched The Big Short. Good movie.
Lucky for us, Scarlett’s any–day–now cousin, whom she wants to name Cecilia, should curb her longing to have a permanent baby in our house. I’m just going to let other people have the babies, and make the movies, and do all the other things that superhuman humans do. I’ll cheer. Even louder if I’m wearing a BiPAP.
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Hi Sarah!
I will be your cheerleader! Thank you for your wonderful blog! And congratulations on the impending arrival of your niece! Scarlett and Jack are going to be so excited to hold her!
Praying every single day for you Sarah. You are such a beautiful person, inside and out… and such an inspiration to all who are blessed to know you. Please know you are loved in Oregon.
Respectfully,
Gretchen
Hi Sarah,
I’ve been reading your blog for several years now. I’m an Oak Parker – went to school with your brother and your dad was my junior high school social studies teacher. I’ve never commented before but was compelled to do so today. Your writing continues to become more and more beautiful. Thank you for sharing your story. We are all fighting for you.
Whitney
Sarah…you have thousands of cheerleaders out there!!
“…the gold in her hair seemed like an idea I had put there to save for later’. Sarah, I agree with Whitney. Your writing is becoming luminous. When I “sweater wear” my big chocololate lab for a hug every night you are in my thoughts and prayers. Pam is right. You have many,many cheerleaders.
Sarah, all of us transplants from Chicago to Maryland ARE YOUR CHEERLEADERS!!! … and we LOVE YOU! Mom is my buddy and she has made me yours! I am always holding your heart in mine. Love, Leslie Topus
Sarah,
I have been reading your blog for a while now. At first I cried every time. My big brother has ALS. He was diagnosed in October 2004. The last few years have been tough on all of us, but, now I can share your post with my brother and we can laugh. I didn’t think I would share this post at first. You are such an amazing person to tell your stories and help more people then you will ever know. I didn’t want my brother to feel like I was judging how HE was handling it versus your wonderful, funny stories. He hasn’t been handling things well lately. I think because he has had it over 10 years, that maybe he thought someone would find some cure by now. He gets sad a lot now, but when we read your stories and he laughs and gets that old sparkle in his eyes again, I see how he used to be. Big, strong, invincible. Thank you Sarah, for giving me and my brother a reason to laugh again. Gold bless you and your family.
Sarah – you continue to captivate me with your writing and I also continue to empathize with your challenges. Having a father diagnosed with ALS 6 years ago, I am constantly amazed with his great attitude and of course yours. I always read your blog but have only commented a handful of times although every time I want to say, “you go Sarah – we are cheering for you!”!!!!! In all the years since my Daddy’s diagnosis, i have not heard him complain one time and I feel the same can do attitude after reading your blog every time. You bring out the humor in every situation all the while making us realize the reality you are living in. I so admire you and pray for you every day.
I’ve had ALS for about 3 1/2 years. I’ve enjoyed your point of view. Cheerleading from Seattle, Washington with my eyes!!!
Never met you, cheerleading from Laguna Beach! Keep being you, keep writing!
I love the line about your poetic thoughts, usually being about grocery lists! i think that sums up half of my own thoughts! Were we in any English classes together? Blackburn, urban, spicuzza, lowenthal, etc? i just remember you turning around to me in class to share some of your wit and humor… glad I can get to read some of it here.