Scarlett started her third and final year of preschool last week. Rob and I both brought her to the first day, like we have done every year, and took pictures in front of the building. What could provide a starker realization of how much my illness has changed our lives than images of my daughter growing up each year, while I become more disabled?
The first year, when she was two, I drove her to school and walked her into class, wearing flats to avoid tripping, but without any real difficulty. The next year, she was three, getting so much taller and talking all the time. I pushed a walker into the classroom, watched her play, and kissed her goodbye.
This year, I was the mom in the wheelchair. In most ways, I felt great, because I will always be a huge nerd who absolutely loves the first day of school. And because I’m so in love with my daughter that I relish any and every milestone I get to experience with her. But I can’t pretend that this is the way I wanted it to be. Rob having to be so late to work, because he had to drive us all to school, and then take me back home again after. Other parents looking down (I only mean this literally) to talk to me. Awkward hugs from a chair. Maneuvering through the little school, trying to avoid tiny feet.
I don’t know what next year’s drop off will look like, when Scarlett starts kindergarten. Will my arms reach out to hug her goodbye? Will it even make sense for me to be there?
I know—I KNOW—not to look too far into the future with this disease. I KNOW that I’m supposed to stay positive. I KNOW that anything can happen and that I have to enjoy the life I have now. I KNOW that there may come a day when I wish for the ease of this time, just as I currently wish for the strength I had two years ago, even though it wasn’t the strength I had two years before that.
I’m angry and I’m sad. It’s going to pass. I know that, too. This is called watching the weather. When I was pregnant with Scarlett, I had a midwife, a German woman who was working towards becoming a Buddhist nun. After I got my diagnosis, she was one of the first people I went to see. I sat on her couch and cried into my tea. And she told me that I had to let those feelings of sadness wash over me, much the way she once told me to let contractions wash over me.
Don’t tighten against it. Don’t fight it off. Just accept the pain, accept the sadness, let it wash over you and then go away. It will come back. But I can’t control it any more than I can control the fog that is currently rushing across the Pacific Ocean and enveloping my house. Weather inside, weather outside.
I love that Scarlett is getting older. While many people talk about wanting their kids to stay babies, stay small, stay sweet, I want her to grow. I measure it as time we have together. I watched her sleeping the other night, and thought about how much she—just she—has changed in four years. I’ve been here for all of it. And I want to be here for more.
There are a lot of things you can say about life. It’s funny. It’s beautiful. It isn’t fair. What I think is true is that life holds a lot of promise, but no promises. Except for one, that it will end. It may not be the way I expected. It may not even be close to what I expected. But here I am, at the end of this post, and I actually don’t feel angry or sad anymore. I’ll just take the weather as it comes.
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Beautiful, Sarah. A real tear-jerker too. Thank you for sharing this.
Thanks, Sarah, for welcoming us along on this journey with you. I don’t know you, but your dad was my son’s teacher at Julian. So many people in so many places are sending you love and strength. It’s pouring rain here in Oak Park but I am wishing for sun-filled days for you and your family.
Dear Sarah,
I think that any parent wonder if life will allow him/her to be here to see his/her/children become adults. I saw my mother struggled with these thoughts. She got a rather pessimistic prognosis about her cardiac condition few weeks before I was born, back in 1976. She though too much about that, it was too present during my childhood, it was very hard to think continually that she could dye any minute. But, 38 years later, here she is and in a remarkable good condition and with a much better aptitude.
Now it is me. 38 years old and a 23 months old and four doctors that seem not to agree with my diagnosis. I feel sad and sometimes beat down by the circumstances. Too many appointments with doctors, too many health exams, not a clear path. But though I feel sad and angry many times, I try to remember my mother story. I lost many happy moments during my childhood because she was too afraid to dye. I lived with so much fear that it has not abandoned me up to today.
Well, I must say that I understand her better than ever and that I cannot blame her. But my goal is more than to heal, to avoid this sad inheritance for my son. It is very difficult and many times I don’t do well. That is when you come to help. You are helping me a lot. We do not know what the future will hold for us. I have in store a brain operation and who knows what more… but… as you, in stead of fearing the moment, I dream with a young neurosurgeon that come with a fantastic procedure to remove a brain tumor from the base of the brain without radiotherapy, and therefore, no more damage to the brain. I know that eventually will happen, so I hope it will be happening in the very near future… At the end of the day, that is what happened with my mother. She never went through valve replacement surgery. By the time her valves were too deteriorated to function, there was a fantastic technique that just required a minor incision in her leg and a couple of days in hospital…
So… let’s try to dream… you do it better than me… and for that I admire you and thank you!!!
Thank you Sar. Love you. Love Scarlett. Hate ALS.
(Rob is pretty awesome too)
Live how you write my friend.
Love I meant love how you write. dang ALS fingers!
Ha! Trickett, I think it makes sense either way. Love ya!
Beautifully written. Thank you for sharing.
Beautiful post, Sarah, thanks for writing and sharing it. Best wishes to you and your husband and sweet daughter, Philip
Thank you, Philip! Hope you and your family are well.
Thanks, Sara. Just checked out your great blog!
Sarah, your writing is so lovely. And you know what’s funny….I envy your life a little and I don’t even have a terminal disease. I look at the picture of you three – even in your wheelchair – and you look like such a beautiful family. Two great looking parents and their predictably gorgeous daughter.
I have this innate thought when I read your story, when I look at your pictures, that you will overcome this. Perhaps the stem cell clinical trials going on right now will yield sufficient results. I don’t know what or how but I feel as though you will not be silenced by this, in any manner. And that you’ll be Scarlett’s mother until she’s a mother herself.
Jane
Oh my goodness, Jane. Thank you for this.
… Profound wisdom can only be gained
Through profound suffering. That, you are
Clearly demonstrating to us. Thank you for
Inspiring us to be with what “is” . _/\_ may your heart be happy in any kind of weather darling.