Our daughter Sara is hilarious, smart, motivated, beautiful, and medically complex. Sara has multiple diagnoses, including a chromosomal deletion syndrome, chronic lung disease, and global developmental delays. In order for her to be healthy and safe, she is trach-dependent, uses a ventilator approximately 16-hours a day, takes all feeds via g-tube, and requires frequent suctioning. She joined our family when she was one year old, and she has qualified for 70-80+ hours of skilled nursing per week since that time. While we were living in New Mexico, we had a couple of great nurses who could come to our home one or two days a week, but they moved on to other positions after a couple months. For half of the one year that we lived in New Mexico with Sara, she had zero hours of available nursing filled. But last week, we had our first ever “full time” nurse start since moving to a metro location.
And I had a lot of feelings about that. When the nursing agency called to say that they thought they had a good fit for our family’s needs, they said that they were happy they would be able to provide us with some “relief.” However, the expected “relief” was not one of the emotions that I felt. Honestly, I felt guilt over the fact that I was taking a nurse during a nursing shortage when I knew that I could do everything on my own and with my husband’s help (when he isn’t working). She’s my baby. I shouldn’t need someone to come help me with her five days a week. As a stay-at-home mom to her and three other children, I felt that 100% of their care was my job. My duty.
While Sara was place inpatient at our new children’s hospital as we were transitioning to Arizona, the social worker asked me what kind of supports we had in place at our prior residence. Among other things, I told the social worker that she had previously qualified for 84 hours of nursing care each week, but I quickly followed up with, “But she never had those filled and we definitely don’t need that many.” He said, “Take everything you can get!” I felt almost indignant at those words. Why would he want me to accept that many hours? Do I come across inadequate? Do they think that she isn’t receiving proper care? Does he think that I see my daughter as an inconvenience? Does he assume less of us because we are her adoptive parents?
And I felt that creeping worry that if I actually did want those nursing hours filled, I would be a “bad” mom. I’m still fighting the belief that I need to prove that we are capable of parenting our daughter. From the moment we inquired about her, I always felt like I needed to prove that I knew what I was doing. To show the nurses and doctors and social workers and therapists and lawyers and judge and family members and everyone in between that we weren’t going to fail her. Part of me believed that accepting help was admitting defeat. Even though I know logically that is not the truth.
Beyond the inner turmoil that came with the idea of accepting help, I was also concerned about how it would affect our family’s day-to-day routine and life. I felt nervous about what it would feel like to have a new personality in the house 40 hours a week. Anyone can put on a nice show for a few hours a week, but how would a nurse feel about seeing our very real family all day everyday? How would it feel to be “on” every week day? Do we even want that? Were we capable of letting our guard down?
Then she started. And there were some awkward moments. And I’m not yet to the place of not wanting to do a little extra cleaning before she arrives each morning. But she fit right in. Sara likes her. She trusts her. I started handing over more of “my” duties. I let the nurse suction, make/start/stop/flush feeds, administer medications, give a bath, brush her teeth, change her dressing around her g-tube, help me with trach cares, fold her laundry, sanitize her everyday equipment, start and stop her ventilator and heater, check the alarm that’s going off randomly for the fiftieth time, check her oxygen, check her temperature, chase her around the house to stop her from eating crayons and LEGOs, help her with developmental play, and so on.
And you know what? Today, I realized how much more relaxed I am. How much more present I am for all of my kids. My eyes teared up on multiple occasions because I was able to enjoy being a mom instead of having my running list of medical care going on in the back of my brain full time that I didn’t even realize was always there. My kids are happier. They’re more engaged. I’m more engaged! I don’t have to stop in the middle of reading a page because boogies need suctioned. Sara’s nurse can suction, and I can continue reading to my four babies. I can focus on helping my homeschooled older two with their math problems. I can read a long book to my 3-year-old. I can help Sara paint a picture while her nurse mixes her food. I can have meaningful conversations with Sara’s therapists and specialists without worrying that taking my focus off of Sara will be risking her life.
I had a friend comment how nice it was that someone could focus on the nursing duties while I could focus on the mothering duties, and I realized that I hadn’t even realized that there was a line between the two. Now, that line is becoming more defined. And I’m so incredibly thankful for amazing nurses who can blend in and enhance a family dynamic. I’m thankful that her presence doesn’t diminish my role as mom. It gives me the permission to be her mom more fully. What an incredible gift to our whole family! It’s been humbling to realize how much I really did need the help. Even more than humbling, it has been freeing to be able to admit that help is helpful.