Last year, Grayson qualified for a program for medically complex children. One of the main benefits is it gives him Medicaid coverage, which is one of the biggest blessings to our family. Medicaid covers most of his doctor copays, ER and hospital visits, therapy, and medications. Having a special needs kid is outrageously expensive, and we are so grateful for Medicaid and all it provides for Grayson. Another benefit of the program is he qualifies for in-home nursing care. Since I am a SAHM and Grayson goes to school 5 days/week, right now we are using most of our allotted hours at night. Our nurse comes Saturdays during the day, and then 3 nights/week. She gives him his bath and medications, puts him to bed and then takes care of him if he wakes up at night for any reason. This has been a huge help to me the last few weeks, especially with the adjustment of now having two kids.
Yesterday evening, it was almost time for Grayson’s bath, and I took him from the nurse to snuggle with him for a few minutes before she took him upstairs. She told me Grayson is very lucky because I play with him and take care of him, even when she is here. She said most other homes she has worked in, the parents were gone as soon as her shift began and she often had to go searching for them so she could leave (12 or 15 hours later). I know I shouldn’t have been shocked but I was. I told her it sounded like neglect to me, and she said it absolutely is.
Then I thought about a post on FB from another Mito mom last week- her son was in the hospital and said one of the nurses told her that about half of kids with complex medical needs are abandoned by their parents when they are in the hospital. She said there was an 18 month old next door who had been there for weeks and the parents came for about 15 minutes at a time, and not even every day. Horrifying. Yes, people have to work. But not 24 hours a day. You don’t abandon your BABY in the hospital.
I guess this is so shocking to me because my network of special needs parents all love their children deeply and do anything and everything to give them the best quality of life possible. Yes, we hate our children’s disease and the limits it puts on their lives, and would do anything to see them cured, but we don’t love our children any less because of it. Last week when Grayson was in the hospital I rushed as fast as I could down the hall to get something to eat so I could be back in his room- I was gone probably 2 minutes max, and I felt bad I had to leave him alone that long. I simply can’t imagine leaving him alone in a hospital for days or weeks at a time. It makes me sick to my stomach to think about.
No one is guaranteed a healthy child and all children need to know they matter (and yes, I know healthy children are also abandoned and neglected). Sick children have “special needs” but they have basic human needs too; they need affection, attention and security. They get bored and need to get out of their house sometimes, if possible. They need to know that the people who brought them into the world don’t see them as less than, or an inconvenience, but rather a precious member of the family.
Today, I’m grieving and praying for all those special children who don’t get snuggles before bedtime or who are spending yet another night alone in a hospital room.