A Sad Reality

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.

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14 thoughts on “A Sad Reality

  1. I hear this, and feel this one deeply.When we were in last week overnight for surgery, our roommate was a 2 month old boy, who had been there for 7 weeks. His parents didn't come at all in the 24 hours we were there, even as he was being wheeled out for surgery just before we were discharged. The nurses left the TV on so he'd hear voices, and when he cried at night, I whispered to him that it was ok as I went to get his nurse. Because there was no one else to do that for him. It made me SO incredibly sad.I think about him every day. Hoping he's ok. Wishing I could have done more for him. Wishing he had parents who wanted to and were able to care for him.I was actually going to post about him today .. but you've done it for me.

  2. When my cousin's newborn was in the NICU, there were several babies who were alone every single visitation period. The nurses would spend all of their time holding them because they thrived on contact. So incredibly sad that you could feel okay about leaving them for weeks or even months… you are a great mama!!!

  3. SO SO SO sad to hear of these stories, makes me teary eyed just thinking of it. 😦 I can't imagine not wanting to be with your child in the hospital, I struggle with giving birth to baby #2 and knowing I'll be away from Aiden at least overnight.

  4. Wow! This post and related comments people have put have really opened my eyes. I am so saddened for these children and shocked that it is very common in hospitals all over the country. I agree, some people have to work, but at 5:15 I would expect them to come rushing in to stay the night (or at least to visit for a few hours). My girls have thankfully never been hospitalized, but the thought of them there sick and scared and to open their eyes and not see me (or Daddy or Grandma, you know what I mean) makes me feel ill and my heart hurt. I forget that not everyone parents like I and my friends do…thanks for the thought provoking post.

  5. This stories make me so sad–just sick with grief. I don't know what else to say except Grayson is so, so lucky to have his family. So, so incredibly lucky. I wish all kids were as lucky as he is.

  6. I struggle with this, as a hospital social worker (working primarily in the children's hospital). It is really hard to see kiddos by themselves. They need family there to love them (and heck to just provide care b/c the nurses and other hospital staff aren't able to provide much interaction b/c of all the other patients they have to care for). That said, not all of the families have the resources necessary to allow them to be with their children all that time. And I don't just mean financial resources, though those are certainly significant issues. Some of those families don't have the emotional resources to be able to be there and care for their children. Some of them don't know what to do when they're there. Some of them don't have the extended family support to allow them to drop everything else and be there. Some of them – I admit – just flat out suck (sadly). I don't think it's as high as half of children are virtually abandoned. At least, that's not been my experience.Also, G is lucky to have his family. For so very many reasons.

  7. We see that all the time on the CF floor at the hospital. It is always the same kids. I'm like you. When I ran out for a few minutes to grab lunch it was horrible. I can't imagine what it would feel like to never be there for them.

  8. I experienced this as a candy striper when I was 14. I worked on the peds floor and there was a 6 week old baby I was told to "just go hold her and snuggle her" because she'd been there for 2 weeks and her parents hadn't visited once. I've never forgotten it.Grayson is more than lucky. He is truly blessed!

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