I am not sure when it was exactly, that I stopped planning ahead. It could have been when Zoe was little and ill all the time. Maybe when her big sister Olivia was still catching every virus too- but somewhere along the years with appointments, kids school stuff, daily care and flu seasons- and trying to work from home- I stopped looking ahead on my calendar and started my focus of just keeping my head above water. One day at a time.
Sometime after that, I gave up the guilt too. Feeling remiss about the appointments I had to reschedule, the lunches I could never follow through with , the birthdays I missed, the social calls I could not return. There isn’t enough room in my head to stuff guilt in there too- it’s already full of worry, constant care reminders, health stuff and detailed plot plans for tomorrow on how to be more productive, more efficient and to have a better day. A long while ago I gave up pedicures, dinners out, date night or hobbies- I am good intentioned, but it’s tough. And I still feel bad- but mostly I have accepted the idea that I am probably misunderstood. That others probably just “ don’t get it”.
I think a lot about how to apologize and explain. All the time, when the days pass I don’t get a minute to return that call- because I am behind on the family stuff, the medical stuff, the work stuff. How to explain that just “ maintaining” takes every minute of every day- prioritizing the kids health- when it’s 110 and just “ one more errand” causes obvious physical stress, how snacks, food issues, medicine , Zoe’s hands-on personal care and general mothering sucks the day away, there just is no extra time- and I wish how I could explain it better to someone who may not “ get it” . That caring for a special needs child who needs extra assistance is very much like that “ hands on mothering of a toddler” – you know, that time when you could never be out of the room for more than a few minutes without elaborate planing,because need and sometimes danger are always a few steps away. There are bathroom issues, assisting your child to get set up to play a game , do a craft or play with her toys successfully. Even streamlining your home so your child can be their most independent , takes extra time throughout the day plus the usual Mom stuff reading with your children, teaching your children, encouraging your children. There are other mothering issues too- my tween daughter with her own health issues, plus occasional yet real anxiety, a tween who is suddenly “ annoyed” by her sweet younger sister ,who until recently was her favored companion. A tween who is suddenly needing extra alone time with Mom as she tries to navigate through the maze and mystery of growing up.
And then when you get past maintaining the priority of mothering your children, there is the priority of your relationship with your husband. Mine is my best friend, my partner, my children’s father and as patient as he is – he deserves more time and attention than I have to give. We steal our moments when we can. Next there is work- from home for the summer, at the office during the school year. The priority there is obvious and necessary. Finally- there is the maintenance of the home, the dogs- and the extra stuff.
I accept that I can’t live up to the social standards for most relationships that need to happen outside my home. Sometimes I can’t even live up to the expectations of the people that live here- but I carry on and start every day fresh, reenergized and determined to do better. I have also learned to celebrate success when I can.
In the last week, there was cause for much celebration. A long anticipated , overdue date night with my husband. Preceded by some primping, an at- home pedicure, and pink lipstick there I sat in a girly ruffled summer blouse enjoying one on one conversation, a lot of sushi and some cold beer- alone time with my husband that made two hours feel like an entire weekend.
Yesterday, O and I went out on a lunch date, shared some cool conversation and had leisurely girl time together hanging at our favorite local library. It was amazing to see her excitement to be out and about with me alone- and hear the things that girl holds in her head.
This week, O and I also took Zoe to our neighborhood Aquatic center for the first time. Zoe loves the water, but pool time can be nerve wracking as she often sucks up water. She cannot swim, nor can she keep her balance in the water- so I alternate between hovering when she has her noodle wrapped around her, or holding her like a toddler who can’t yet swim. This summer she has done the best so far, holding on to her own flotation device and for the first time in her nine years, she is sporting a golden tan. It seemed possible to try the Aquatic center if I could find a day with no heat warning and get an early start. Packed with fluids, sunscreen , water sandals and leaving the power chair at home in favor of the manual method- we were off! And oh the squeals, the joy, the excitement, hanging in a public pool, floating on the lazy river ( 7 times!) splashing under the fountains and watching big sister do the diving boards and the high slide.
It had it’s own share of challenges- putting on the life vest each time, figuring out the safest way to ride the float , ( read: fitting and launching mom and Zoe on one raft was possible, but NOTgraceful!) water sandals. Zoe lurched right and left under the fountains, as I held her hands and held her up and we were both drenched by fountain buckets again and again.I learned to zig when she zagged, discovered where the most slippery spots were on the bottom of the pool and began to celebrate the success of our fun. And though Zoe’s legs were growing more wobbly from fatigue, she loved being there so we surged on for our last 10 minutes of a two hour excursion – and that’s when it happened. She lunged- hard, as we walked across the play pool in the waters current. We hit a slippery spot and although I tried to right her balance, we both went down. I watched as she slipped, and in a split second I realized I could not keep her head above water. Instinctively, I jerked her back up again yanking her upper body out from under the water and she coughed and sputtered behind the wet hair plastered against her hidden face. I smacked her on the back, hard and wrapped my arms around her, prepared to pull her out of the pool quickly. But she coughed and coughed again, then smiled , grabbing my hand to continue her trek to the fountains. She was talking to me, but I couldn’t hear her words. My heart was beating too loudly, as the words kept pounding through my head “ She could have.. she almost..what if she..?” I wanted to sob then, I was shaken- but then we were there under the fountain “ Hold on, Mom.. Here it comes!” she shrieked , squeezing my hand tightly.
I lay in bed later that night, thinking about her fall. Her joy, my fear, her elation with her trip to the water park, my inability to protect her , her future. I tried to tell myself then what I know to be true. I don’t succeed every day, but I do the best I can -and sometimes that means ..just keeping your head above water.