I recently found out a mother I work with has a disabled son. When we first started talking about it I had no idea the magnitude of his disability I just knew we shared a few of the same specialists and took frequent trips to Cooks in Ft. Worth. After more in depth conversation I realized he is a Cooks way more than we were so I know at that moment she was very thankful for Tricare because they help reimburse for travel and hotel stays. Oh how I miss those days now.
When me and her would work there would be a few casual conversations not much about her son. I just knew enough that she also had a older son and nurses who cared for youngest around the clock. At first I really couldn't wrap my head around how she could actually get up and go to work every day and let others take care of her son. I also didn't know how severe his disability was so it was I guess easy to make judgment. I mean I know plenty of mom's who have disabled kids and work outside the home but then I have others who make it a point to be the primary caretaker of their child no questions asked.
About a month ago she was subbing in my room and I had overheard her mention about being late due to the nurse being late and that she was a bit more stressed because her son's condition had begun to change. She spoke of the Make a Wish foundation and how she hoped it would be granted soon. I realized at that point her child was no like mine at all. While my child my struggle to live on his own, maintain social and behavior skills along with some self help her son would NEVER live outside her home let alone maybe never live long enough to experience the teenage and adult years. It was at that moment it but my thoughts of my own child into a big check.
I listened as she talked about his rare disorder so rare they are still trying to name it. He has such a wide array of severe complications they are surprised at the age of 18 months he is even still alive. My heart broke as I thought of my own child being just a year older than hers knowing he was healthy just different. She had asked for a Disney Cruise for her son because they had not had a family been able to take a trip. However her son had began to decline in his health and she feared it might not even happen. She also talked about a stroller she needed for her son that insurance said she didn't need that would allow her to take her son for walks without the use of a bulky wheelchair Here I was just days earlier submitting my forms to the Joseph Thomas Foundation for a few small key items my child needed for therapy. I don't know why but it suddenly made me feel selfish and greedy. I did tell her to contact the foundation to see if they could help her.
I went home and really thought about what my life would be like if Hunter or any of my other children for that matter where in that situation like her son. I really couldn't grasp it, that is until the following day where our therapies coincided for the first time ever. I saw what a great team that little boy had. Mom was right up there cheering him on for just attempting to hold himself up on his stomach or sitting up in a boppy. I really grasped celebrating small accomplishments meant. I saw the rapport and relationship she had with her nurse and it was amazing. I realized now how she could get up every day and go to work. She couldn't just sit at home and feel helpless she needed to feel productive in her life and sitting at home watching her son who is essentially dying was not going to help her. While most would say "I would never leave my child's side" or "she will regret that time she didn't have with him" I realized she might not given that those nurses who are with him and that the time she is with her son he knows how truly loved and taken care of he is.
I was sort of lost in thought and not focused on my own child's therapy and realized I am so lucky. I could never want or wish for my child to be in a situation where I knew I had to have other take care of him. I could never imagine what her daily life is like except for what she reveals at work. While I know I push for doctors and specialists I do it as a precaution while she does her out of sheer necessity. She takes offence when she hears parents say "Oh I think my child has this rare such and such disorder because of this." I can see why when her child truly does live with such a rare disorder it still needs to be identified and there are no answers or cure.
While for us ASD does not have a cure we do have so many resources that we can utilize and know that in some way it will help our child. Whether it be OT, PT, SP, ABA, HIPPO, Therapeutic riding, Service dogs, and a variety of other therapies those are all things that will do something to help our child gain a better quality of life. We should be so thankful to have these options and not feel like we are sitting with our hands tied when it comes to helping our child. I know after hearing her story it really made me appreciate what I had more even despite my insurance battles. I could never wish for my child to have rare incurable, untreatable, unhelpable diseases. I just sit and be thankful that I saw through another mother's eyes just what I need to be thankful for everyday.
Jamie
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