There are times when I have encountered the sentiment in others that I don’t have much of a right to express any sort of discomforts over the personal challenges I have faced or the sacrifices I have made to provide the intensive level of support required for our son. He is the one with the disabilities I am told by people who feel that way. And I have chosen to be there and do those things.
True. Of course that is all true.
The disabilities I have written about are his, however, he’s not the only person in this house to have developed additional needs because of them. What happens to him isn’t just happening to him, and sometimes all I want is for people to look at what I am going through and validate the depth of difficulty that has existed for me personally. To hear me and to hold me when the pain of certain experiences has wounded me and left me emotionally limping for a time or even curled up into a mental ball (because as positive as I prefer to be that’s definitely happened). To listen to me when I say this is what he is capable of, this is his clinical history, this is how he’s going to respond to things- especially the part about his capabilities- and to really be willing to give him adequate chances to show all of that to them.
I may understand when they choose not to see all of that the same way, but I still feel a sliver of hurt sometimes when this is the case because I just want to be seen as my own human who also gets to have needs in all of this.
And, I want people to really recognize that as his mom, I’m more than his backdrop. I am my own person, and sometimes the things we go through together profoundly impact me. Have left me feeling like my own self-care needs don’t have the same right to matter if and when they even get to. Because the sacrifices for me personally have run deep, the need I feel for the progress to keep flowing in is sometimes near ravenous.
To be sure what his neurology brought him into the world experiencing has been brutally hard for him (especially in his first three years of life) and my heart has felt a depth of pain for that only a parent can understand. I love my son and I want him to have choices in his future (and again, to be clear, I love both of my children the same, but their needs are dramatically different). I want him to be able to live in the community and find joy. I remember a time when we couldn’t get him into most places, and when we had enough therapeutic break throughs to get in the doors for even a few minutes, we couldn’t do so without me running after him every few seconds. Tonight, we were in a busy Target he’s more familiar with for 54 minutes and he stopped and came back with my verbal request every time he walked more than a few feet away from me. And, it was a school day with ABA afterwards, so he had a full day of activities (many of which were outside of the home) and still tolerated the experience so well.
The skills and tolerance he has now would not have happened without what has been done by everyone involved, and when I see how far he’s come, I feel like it’s been worth it to me the prices I have paid personally.
But sometimes, I still just really need a hug to help me hold it all together.
