Time. It’s our most precious resource.
For everyone, finding time is challenging. There are untold classes and articles about how to optimize time, but many acknowledge that during extraordinary periods in life, it’s necessary to focus all one’s energy and everything else will have to wait. One of those periods for parents is the birth of a baby; the good news is that the time of greatest demand is limited.
For a caregiver of a child with special needs, though, many of the demands associated with a newborn never go away.
This is a truth I accepted years ago. But it makes me think a lot about time, and about different ways we and other caregivers have to make time to keep ourselves sane.
One of my recent New Year’s Resolutions this year was to make time for family and friends. When I wrote that, I was casting a broad net. Here I want to focus on the need to make time for our immediate family.
1. Make time for ourselves. During the many years I commuted to New York City, I found different ways to maximize my “in between” time. One example was my writing. I’ve been crafting fiction for most of my life, and earlier in my career I wrote for an hour at home before I left for work. When I changed employers twenty years ago, then moved a little further out, it became untenable to rise any earlier. At the same time, our new life with Gabriella limited my time at home. I feared I would lose my dream of authorship. When Lisa encouraged me to try writing on my trip in, I was reluctant. I wrote in silence, and the crowded train was too distracting. As usual, she was right and I spent my morning commute over the next twenty years on my fiction.
For Lisa, it’s often been harder to find daily alone-time, although she’s a night owl and enjoys the peace in the house after the rest of us have gone to sleep. Sometimes grander events are the answer, and this past weekend marked her eighth annual New York City getaway, a chance for her to recharge and focus on one of her hobbies.
2. Make time for us as a couple. For many years, we were unable to have a “date night”. Gabriella’s complex medical needs (including transferring her from her wheelchair to her bed) made it difficult to get out even for an afternoon meal. We made do. We got to know all the takeout places in the area, watched movies at home, and did without other forms of entertainment we had once enjoyed. But we were in the house, which meant Gabriella was always a short distance away, and we were always on duty. In addition to stress, this created a sense of isolation.
Then one of her teachers offered to babysit for us. She was used to lifting and changing her, and could transport her upstairs and into bed. We were thrilled. For a while, we got out once a month because of her kindness. And when she was no longer available, a second teacher volunteered to take her place, continuing to allow our date nights for several years. Now that we have capable nurses helping with Gabriella’s care, we have been able to step out a bit more often. It’s still extremely rare to go away overnight, but we have taken advantage of our time together to refresh ourselves as a couple.
3. Make time for her sibling. Since Gabriella’s brother Alexander was born, and perhaps even back to when he gave us the thumbs-up on the Level II Ultrasound, we’ve recognized the need to give him his own time. It was easy to devote all our attention to his sister because she needed so much, and that brought guilt. As a child, he exhibited only occasional jealousy, and he showed signs of being an introvert just like his parents, enjoying solitary activities.
Especially when he was young, however, we sought ways to make him feel special, too. We made sure one of us was there for soccer games or piano lessons, and we also tried to find unique activities to do with him, independent of his sister. When we had Nonni with us in Wildwood, for example, we would leave Gabriella with her and take him for “three spoon ice cream”, an oversized sundae for us to share. We’re proud of his independence now that he’s grown up, but we still look for things we can do with him alone.
4. Make time for our daughter herself. This one sounds counterintuitive, but so much of our life with Gabriella is spent on the tasks of daily living (dressing her, feeding her, giving her medicines). It’s tiring, and often overwhelming. But we seek out special pleasures for her as well. I’ve written about some of our big activities in the past, such as sensory-friendly shows and trips to the zoo or even Disney World, but these are the grand gestures and occur only a few times each year. So we try to enjoy the smaller things.
When we’re home, it’s easy to get sucked into the daily routine. Because Gabriella is a music-lover, it can be as simple as listening with her to salsa music (a favorite of hers).
If we’re successful, in each of these ways, we can make time beautiful for one another.