You want to know what’s not relaxing? Vacation, for Rob. To be fair, vacation for anyone with children cannot be described as relaxing, as these little bundles of energy tend to get up early, ask for things like food, and then want you to watch them and take care of them all day. So it’s just like being at home, but without most of your stuff.
Of course, we have some added stressors, as everyone who reads this blog is more than well aware. I’m sure Rob could have a truly lovely vacation, if he would just travel alone. But instead he brought a puppy, a five-year-old, and his increasingly disabled wife. Not his smartest decision. Not a recipe for sleeping in (or even sleeping through the night.)
You know your situation is unusual when the five-year-old is the second most self-reliant person in the family, and the 12-week-old puppy is handling himself pretty well, too. Sigh. I am the weakest link.
For example, both Scarlett and Otto can at least feed themselves. When Rob finally settles down by the pool to enjoy a sandwich, he has to balance his own food intake with mine. This is a completely new development, and it’s sort of unfortunate that it began when all of our meals are on display. I keep my attention on our table at each restaurant, quietly wondering what other people are thinking of our performance. Maybe they just think we’re really in love? I doubt it, and I don’t care that much (less so every time), but I do wish my husband could enjoy a meal without having to help me enjoy mine.
It makes me reflect once again on the reactions of the #whatwouldyougive team members. I think when the situation is new, when you’re just getting a sense of how it feels to give up your abilities, you end up thinking a lot about how it affects you personally. But as the disease continues, the reality sinking in, the focus shifts to the people who have to help you all the time. How unfair it is to them.
Don’t get me wrong, we’re enjoying our time away. Once Otto has been walked, and once I’ve been detached from my mask, hoisted out of bed, and dressed, we can all manage a little easier. For me, the worst part is lying in bed every morning, wishing I could just get out on my own, knowing that I’m one more obligation in my husband’s life. He doesn’t complain, but that doesn’t mean it’s not surreal for both of us.
My sister and her family arrived yesterday: reinforcements for Rob, a playmate for Scarlett, more fun for everybody. Right now they’re all sitting on our deck, under the trees, listening to one of the noisy toys that Scarlett brought. Toys that make noise should be illegal.
As I said in my last post, the hotel is fantastic, but like many places we’ve stayed over the last couple of years, we realize that accessibility is often a subjective concept. Case in point: the outdoor shower in our room.
Sometimes things just don’t make sense. But my brother-in-law laughed so hard when he saw this that my annoyance faded fast, and all I could see was the humor. We called the front desk to request a shower chair.
Last night, past 9 o’clock, when Scarlett should have been fast asleep, she and Rob and I took Otto for a walk. It was so dark on the path, and Scarlett climbed into my lap and snuggled in. I nestled my nose into her hair and kissed her. I told her we were on a magical walk and asked her if she would remember it forever. “Yes,” she said sleepily, leaning into my arms.
It’s not a fair question. I don’t know if she’ll really remember that moment, or the thousands of others we’ve spent together. Maybe what she’ll remember is something less tangible. The smell of lavender, chilly mornings giving way to hot days, two surprise bags of colorful jellybeans that appeared on her bed one night. Her father, taking care of everything, always.
If not, we have photos.
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She will remember far more than you think. She will remember the smells, the sounds of laughter, the moment when you kissed, her, your funny faces. She will remember the when you awoke and looked at her, the tenderness in your smile. She will remember how Daddy loves Mommy so much, how you all spent this wonderful time together. She will remember Otto and her having adventures, wishing you were with her. She will remember you always.
Another great writing job, Sarah, and I totally agree with Richard McBride’s comment above! I lost my Dad at the age of 4. I woke up one morning & he had passed during the nite at the age of 46 from a massive heart attack. I still remember that morning very clearly. I also remember his face, his smile, his kindness towards his 7 kids, our middle-of-the-nite long drives from NYC to Pennsylvania for summer vacations & how I used his stomach as my pillow while I laid on the couch watching tv after he’d get home from work. Trust me on this one, Sarah, Scarlett won’t forget. But if Scarlett should forget, she will have your blogs to read & family/friends reminding her of how lucky Scarlett was to have such a wonderful mom like you. Now go enjoy the rest of your family vacation, Sarah:)
Although not the same as a child .We will remember you . All of us that read your blog.
You have given more that you can imagine to so many . You have helped me discover what real priorities in life are.
Your sharing and careing have touched my heart.
I will remember you.
Marsha Cohen
She will always remember her brave and amazing mom. You will inspire her with your love and courage and sense of humor in the face of such astounding challenges.