There is a whole host of people who take care of my son: his incomparable nanny, Gloria; two aides, ten therapists, three teachers; a pediatrician, a surgeon and six other specialists who oversee his eyes, heart, lungs, and brain; the provider who coordinates his social services; and the agency that sends us Gloria. The list goes on and on, and each Christmas I find myself remembering yet another generous soul who has contributed that year to caring for my son. A child like Evan can’t get through a moment of his day without someone at his side, guiding him, helping him to eat or to use his communication devices, zipping up his jacket, and getting him on and off the swings. I dream of the day Evan can do it all by himself, but for now, due to his needs, he’s a boy with constant companionship, and never-ending care.
When my daughter was born, I learned, as a first-time mother, just how all-encompassing the caretaking of motherhood could be. A friend, watching me breastfeed Josie as an infant, said to me, “I can’t believe it. Everything she is right now at this very moment has to do with you. Your body grew her, now your body is feeding her. It’s incredible.” Indeed, my daughter’s health, comfort, safety, happiness — so much of it — had more or less to do with me, and her father, of course.
And yet, as my daughter grew up, began to walk and talk and see to her own needs over time, the caretaking diminished. Soon enough she could dress herself, brush her own teeth, and make herself a snack. Not so Evan. With Evan, I have learned a different kind of caretaking, one that seems to come with a deeper vigilance. With my daughter I will always worry, but with Evan there is always more work, and constant concerns. He’s not the kid I send off to school in the morning and catch up with at the end of the day or when he comes home. Instead, I wonder about his day: the interventions and instruction, the progress or not, the good mood or bad. When he’s not home, I’m writing about him, or making calls about his therapy or care, or scheduling appointments with doctors, dentists, and hospitals. It’s not a job that ends when he’s in bed, or off at school.
Because of all the caretaking I do, over the years I have also had to learn the art of taking care of myself. It wasn’t easy at first, listening to all the encouragement — “Take a break, give yourself a rest, spend the day doing nothing.” My first trip out of town after Evan was born happened to coincide with a severe setback of his in the NICU. “Go, go,” the nurse said, literally pushing me out the door. “You can’t do anything for him here. Go!” I called the hospital five times a day during that trip, and didn’t schedule another until Evan was safely home. It seemed like a hidden message. If I were to leave, and stop taking care, things would not turn out well.
When Evan was in the hospital the caretaking took on a kind of vigilance unlike anything I had ever known in the years of caring for my daughter. Sure, I was always careful to keep a close eye on my daughter; my fears for her safety were palpable from the start. When she was a newborn, I awoke to her smallest cry. But with Evan, the vigilance took on epic proportions. If I didn’t learn how to change his two-inch square diaper, who would? To relieve myself, even for a moment, of duty, felt like life and death, and in a way it was. “He seemed to get worse when we lowered the steroids,” I remember telling a doctor about that same setback. “What if we increase them again?” Indeed, a day later the crisis had abated, my son’s breathing had improved and it looked like he’d pull through.
Amidst all that vigilance and hard work, I did learn to take a break — a day off from my hospital visits, or a night out with my husband. Lunch with a friend, a movie by myself. As Evan’s caretaking has evolved, so too has my own ability to pull back, and away. This happens when I hand my son over to his teachers, therapists and aides, allowing them to step into the essential moments of care.
With my vigilance eased, I’ve been able to reconsider my own care as well. Sometimes it feels selfish to read a book or watch a movie, knowing all that Evan still needs. I should get out the braille books, or teach him how to button, zip and snap. I should play pattycake and sing, “Row, row, row your boat.” Like any mother I feel guilty about all I neglect. And yet, if I allow myself, I also see how all the care we have taken — me, his father, glorious Gloria, ten teachers, two aides, half a dozen medical specialists and more — is on display right there, in Evan himself. He is happy, healthy, loved. He’s learning and growing. These truths permit me the luxury of taking a break, the other side of taking care.
14 replies on “Taking Care”
This is a great post! While our situations aren’t identical- I can totally relate. How true… the caretaking never ends and there is always something that needs to be done. However, it is hard to “make” time for self, but so important. The guilt is the worse thing about it and I’m still working on not feeling guilty for taking time out for myself. Thanks for sharing your great writing skills.
Oh, my friend, such impeccable timing! “If I were to leave, and stop taking care, things would not turn out well.” There are days I still feel that way with Nik. I know it will change eventually but for now…
I take heart in your lessons and will try to relax my vigil a bit. :-)
Vicki, this is beautifully written. Well-said. And I am so glad you find the time for yourself, to take care, to regroup. There are words of wisdom there for all of us…
I know the feeling…. It is still hard for me to relax and let go!!! But I can’t help it with 2 ASD boys, it never ends… in april I plan to go to Philadelphia to the Institutes for the acheivment of Human Potential… for a 5 day intensive course, on brain injured children and how to help them!!! April 21-25 ( This will also be a chance to let go…) … anyone up for it!!! See you there then!!! Love, Gabby. :0)
Yes, leaving to do something for myself. What a concept. Sounds nice in theory, but in practice….I just can’t leave. I’m afraid no one else knows my son as I do and if something were to happen. Ugh! Can anyone else relate? I assume so.
I’m so tired this morning, and yet I turned on the computer to write about my son and/or research more about his many diagnosis…but first I checked email, and got your message, and came here to read. So I have three hours till my son’s short bus returns him to my doorstep, I think I’ll reset the alarm clock and get back in bed. As always, thanks for your wisdom, Vicki.
Vicki: I’m so glad you manage to write about your situation while in the middle of it. That’s something I was unable to do when my son was growing up, and he didn’t need half the care that your son does. One of my biggest frustrations back then (and still, to a certain extent) was that mothers of temporarily abled kids had absolutely no clue…that’s why I’m glad you’re writing; I notice however that all your commenters are mothers in similar situations. I hope that’s not true of all your readers. Attention must be paid to you, your son, and lives like ours.
Especially in the beginning, I had a whole chain of things I _had_ to do each day, little rituals that I felt would keep me and the babies intact while they were in the NICU. It made no sense! To anyone but me, it was my own magical thinking.
Now, I don’t do that anymore, or maybe, as often. Thank you for this gentle reminder that taking care of ourselves is a way of taking care of our children…and I will try to let go of a few more links on my magical chain (especially the part about how only I can care for them…).
bravo, my friend. i love that the care you have provided, yours, your husbands, and that which is expressed by the impressive team you have created, is so visible in Evan’s happiness.
You have captured and put into words, so impressively, what so many of us, like yourself, feel. I am trying to give in a little, it is just so hard. My almost 5 yr old son, Cason, has a trach, gtube, ventillated at night, and cannot walk or stand. I have just recently started taking short trips to the grocery store without him and that has been a big step for me. I feel guilt when I don’t spend every waking moment giving him full attention. Pulling back is so hard. You have inspired me to try a little harder and I thank you for that.
Vicki, such a timely and wise post. I have to say, I dip in and out of caring for myself, and it feels so good when I recharge. Bravo for doing it, and thanks for reminding us it’s a good thing.
wonderfully put and brave, vicki! I especially loved the last graph about how all your care is shown in evan. wonderful.
I knew it intellectually, but actually making the commitment to care for myself was another thing. It didn’t help that on a number of occasions, my suggestion to the doctor or nurse actually did make a big medical difference for my son – or that avoidable incidents occurred in my absence – worstened by other parents’ terrible stories. I never expected or wanted to be THE authority for my child, but it kept coming to that. (My healthy daughter said, “just like Harry Potter.”)
I needed to be able to trust the other caregivers. I felt like I had to lower my standards, and I hated that. But when my wonderful Licensed Clinical Social Worker (MY caregiver!) asked me what I liked to do and I burst into tears because I couldn’t remember a thing, I realized that putting myself back in the center of my life had to take precedence.
Vicki, your article reminded me that part of taking care of myself is to recognize, accept and work with the strengths of the other caregivers.
And that makes sense too – what we ask for in others (to see our children’s abilities, not their deficits) should also be considered for them as well.
Thanks again for helping me reassess my preconceived ideas.
You’re writing is amazing and truly touches me. I have twin 23 weekers. I don’t know how much time you have to read blogs, but I keep a private blog about them and can add you if you email me at firstname.lastname@example.org
I just wanted you to know that I throughly enjoy your words and you are extremely talented…in writing and in parenting.