So far it’s been easy-ish managing the engagements of a non-verbal, wheelchair bound almost seven year old, a four-and-a-half year old, and a two-and-a-half year old. It’s the year of Covid so school and play dates are minimum and sports don’t yet exist for us. So when Haven had a “Halloween parade” scheduled for her two-day-a-week preschool, I was PUMPED.
We’ve attended multiple, ADORABLE little performances for Jane and her classmates, representing a range of disabilities and unfiltered goodness. But this would be the very first “school thing” for our typical, kind of Type A , internal processor child.
I do not buy Halloween costumes because of older cousin’s hand-me-downs, and wearing the costume for 3 hours on one day. I’d rather not. I usually thrift or borrow, but since this year involved a Halloween PARADE, I bought. My porcelain skin, blonde haired daughter wanted to be her hero, Doc McStuffins, MD. An African American seven year old Doctor of Toys. So I straight up, big box store, made in China, bought. I didn’t let her wear her costume until the day of so her doctor’s coat would stay white and everything would be perfect.
I was so excited the morning of, I did her hair in a version of Doc’s braids, fixed her socks just right and sent her off to school with Rich assuring her that me, Jane and Millie would be there later to see her in her big show.
With Jane’s Zoom meetings and getting me and Millie ready, the next two hours were a showdown of scheduling expertise. Me, workout. Millie, snack. Jane, class. Me, shower. Millie, diaper. Jane, class. Me, makeup, Millie, get dressed. Jane, get dressed. Millie, shoes. Jane, hair. After 120 minutes I couldn’t believe that we did it and we were about to leave the house on time. The only thing left to do was give Jane her medicine.
….
…
I know you’re already holding your breath.
I inserted Jane’s first medication easy. As for her second, not so much. Per usual, it decided to jam up in her tube. I microwaved some water hoping to unclog it with some heat, but no go. The extra five minute cushion we had was entirely used up by a medication that is out to ruin our lives. I decided to leave her tube clogged and deal with it when we got home. We weren’t comfortably leaving the house anymore but as long as the parade started 2-3 minutes late, we would still totally make it on time.
The parade didn’t start 2-3 minutes late, it started 2-3 minutes early.
As our minivan hustled into the handicap parking space facing Haven’s playground I could see my little Doc marching with her friends. I could easily get Millie out of the car and run up through the gate and into the play ground. But Jane was with us too. And I suddenly had a terrible terrible decision to make. Leave Jane unattended in a vehicle an uncomfortable distance away from the class, or, risk an extra 1.5 minutes getting her out and into her wheelchair.
Before I made my decision I quickly ran up to the gate and yelled “Haven! Haven!” as loud as I could, just in case we never made it in she would know I had showed up.
I ran back and unbuckled Millie, and with a lump in my throat got Jane down and into her chair. We ran ahead to where all the parents were already taking pictures and cheering for their kiddos. We got there just in time to see Haven walk back into her classroom. We had basically, although not completely, missed it. And not by a lot of time, which may have been better. By just about the time it takes to insert a med or unload a child. We had missed it by that many minutes.
My heart sunk. I got a very short video of Haven walking in her classroom , dressed like her favorite doctor and I’m SO grateful our friend took pictures of her for us when they noticed we weren’t there. I kept telling myself that she did get to see me and it really wasn’t that big of a deal to her. But it was a big deal to me.
It wasn’t just Haven’s school experience, it was mine. To be a part of and see something that seemed “normal”, especially during this wild stay-at-home time. With the world as it is, would she be homeschooled next year and for how long after that? Was this it? Was this the only chance I had to “show up” for her?
On the other hand, how do you make the choice between leaving one child or missing the joy of the other? And how do you not get angry at yourself or the people involved when things are not in your control? The foreboding part of me told me that this was just a glimpse. Just a glimpse in to the future choices I would have to make. Leave the disabled child so the other one can finally go on a hike? Skip the sibling’s performance because the special needs sister is sick? What decisions would I have to make and how many would end up scarring my girls as they grow up?
But the hopeful side of me said: Daily choices. Hard choices. Little daily choices make the big ones not so bad. When Haven wants to go on a walk with me when I’d rather just sit and watch TV because the morning has been hard. Choices. When we go on a vacation but have to leave Jane at home or at the hotel because it’s not conducive for the fun of the other two kids. Choices.
I can’t control every event, but I can control daily choices. And sometimes I may not be able to be a part of every big thing, but I can show up for the little things and I think that my girl’s will know the difference.
P.S. Haven has no idea I ” kind of” missed the parade and no emotional damage seems to be done 😉
Oh sweet mama, I know this feeling well. In some ways it’s a re-grieving process in moments when no one is watching and where most parents cannot understand. It is mom guilt on steroids… a constant worry that someone will feel neglected or suffer a loss of childhood memories and experiences. It is a sorrow over having to choose one child over the other, to leave one behind or to forgo possible opportunities and adventures. It is a constant counting the cost and weighing out the energy needed and the timing required. Even recognizing the weather can completely dismantle the hopes of one of your children because it will prohibit the health and safety of your more vulnerable child. It is cuddling and being present when you feel like crying and withdrawing, smiling patiently when others complain of situations that would feel breathtakingly easy, and of letting your own dreams die when life starts unraveling as your child declines and regresses.
Oh but for the love, giggles, and opportunities to hug and hold such a precious gift from God in your arms. To depend more deeply on His strength and grace to make it through another day. Such a blessing that your children have parents who love them so well. They are watching how well you love and that is what matters most. Grace to you both.