When I posted this, I promised to share how I reacted when the Beautiful Mama made a general, public comment. Admittedly, I reacted very defensively to begin with and am embarrassed by that.
Please know, this post is not meant to make anyone feel sorry for us. It is not meant to be a pity party. This post serves a single purpose – Information. I want this post to give those around families like ours a glimpse of what we are really dealing with. Hopefully, it will help others understand what we are keeping bottled inside.
The Beautiful Mama commented that she didn’t understand how a child with a serious illness has his family with him. His family is there to love him and comfort him during his illness, but a child with autism is different. Many times, those children are placed outside of their home and do not have the love and comfort of their family when they struggle the most.
In response, and please remember, my response was unnecessarily defensive, I said the following things.
- Maybe this will help you understand – http://luvmycrzylife.blogspot.com/2011/05/my-beautiful-son-his-current-placement.html
- This was not our first choice. In fact, it was disgustingly painful, terrifying, and I have guilt that I pray to God none of my readers ever have to feel.
- Comments (and honestly, the silence of some) from family members, supposed friends, and complete strangers make that guilt even worse.
- I call my son every single night!
- My family has literally lost everything so that we can go see our son every other weekend.
- We live in an extended stay motel. My husband’s job transferred us, but we didn’t have money to pay deposits, etc because every single penny we have goes to spending time with D.
- We have only the absolute necessary and most basic groceries because each trip to see our son is the same as a month’s worth of groceries for our family.
- I hope to God you never know my pain.
- The pain of someone saying, “You have 3 kids?” and then trying to explain you have 4, but one isn’t home.
- The pain of answering WHY one isn’t home.
- The pain of feeling guilty for watching certain movies or TV shows because you know your son loves them and he isn’t there to watch.
- The pain of not wanting to take pictures of your children because one is not there to participate.
- There was the pain before making the choice of watching my 4 year old consoling my 2 year old and baby while I held my son during his rages.
- Now there is the pain of hearing my 4 year old saying, “Mommy, I miss my big brother. If he comes home, maybe he will be a good boy and be nice to me. I’ll play whatever he wants to play if he can come home.”
- And hearing her say, “Mommy, in my head right now I’m wishing my big brother home. I’m wishing so hard that he could come home right now.”
- The pain is immense, it is scary, it is overpowering. I pray to God that none of you ever have to know about it.
- There is the fear that insurance will stop paying any day.
- The struggles of working through the appeal when insurance has had enough.
- The guilt for silently rejoicing when my son has a bad day (it means insurance is more likely to pay for another week).
- The excitement when he has a great day that adds to the fear insurance will not pay next week.
- The concern that on our next trip he will have a difficult time on our off campus pass which will set him back in treatment, as well as causing the girls more PTSD symptoms.
- The concern that on our next trip he will have an amazing time and superb behavior on the off campus pass. It will be such an awesome success for him, will reassure the girls that he loves them and they are safe. It will also give the insurance another reason to stop paying.
- The worry and fear that we might not have the money to make that next trip to see him and have an off campus pass.
- The fear of the unknown. What will happen if insurance does stop paying? Where will we get the kind of services he needs? How will we ensure we have the things he needs when he comes home? How will we ensure he continues to improve if he comes home before completing the program? Will we be able to find a therapist he connects with the way he has the therapist there; especially since he has never connected with another therapist?
- And so many other unknowns…