What If
Elizabeth had a blog post this morning which made me think about the things that didn't happen because of Katie's disability and how they have affected our family. It made me think about the unexpressed grief that comes with a disability too.
What if Katie was normal? What if she could talk? What if she could call her sister and they could share their day? What if she could call me and just chat? What if she had a boyfriend? What if she got engaged? What if she had a baby? What if she had a job that she loves? What if she got a dog? What if she could go to the off leash with her dog and a cup of coffee? What if she could be screened for cancer? What if she could drive? What if she could could make art?
What if she didn't have to stare at people, desparate to make a connection? What if she could tell us what's upset her so much that she bangs her head against the corner of the wall until it bleeds? What if she could just talk? What if she could work? What if she could play a sport or a musical instrument? What if she could read a book? What if she could write her story?
What if I didn't worry about her living longer than me? What if I wasn't her voice, her advocate? What if she could tell us when she has a headache, or cramps? What if she wasn't born here? I worry about that one a lot, about the disabled children born in other countries, to families that can't care for them.
With each of those questions, there is grief attached. A grief that is never talked about, never shared, just buried, but it exists. It's the grief that all parents have for their disabled child I think, all of those what ifs, and we carry that grief with us everyday. It gets better, lighter, more manageable, but something happens, another daughter gets engaged for instance, and the grief surfaces.
Despite all that, I am thankful Katie was born into our family. It's never been easy caring for her but that girl gives the best hugs and she has the best laugh. She lives in my heart, still a little girl who needs her mama to watch over her, in a way that my other two children no longer need me. She is my hard gift.
You know, my thoughts were very similar when I read Elizabeth's post. The what if's of my life have been spinning in my head ever since, what if my mother would not have been an addict, what if she would not have us locked us up for hours, days at times, what if she would have never experienced the war, her father's past, what if she could have had a life, her career without children, no doctors doling out the valium, it goes on and on.
ReplyDeleteI hadn't thought of that but you're right, there are so many what ifs. We all have them, all carry them around with us and we never know how they affect people. I have empathy for Gracie but I also know how much damage addictions and chaos do to children.
DeleteI wonder about my own mum sometimes, what she would have liked if she'd had choices, or different choices I suppose. Sending hugs.
We never escape the what ifs. They pop up unexpectedly, often for no apparent reason. I cannot comprehend the what ifs of you or Elizabeth. I can feel empathy and I do.
ReplyDeleteWe each have them, all unique to us.
DeleteLike Sabine, I, too, have wondered what my life would be like if some of the traumatic things that happened to me as a child had never occurred. Some would probably say that a lot of my strengths came from getting through that childhood but I really wish I could know. I don't feel strong in any way.
ReplyDeleteI love your term, "hard gift."
That is beautiful and descriptive.
There are things nobody should have to go through and what you went through is in that category. We can't change the past but it sure changes us. As for "What doesn't kill you makes you stronger." Bullshit.
Delete"Hard Gift". Mary is right, that's beautiful.
ReplyDeleteXoxo
Barbara
Thank you.
DeleteA hard gift indeed. She is fortunate to have you but the what ifs are powerful with her. Sometimes there are just a couple of them whereas you have to deal with a long list of potential lost.
ReplyDeleteSo many what ifs, sigh. And yet she is happy for the most part and isn't that what we want for our children?
DeleteA hard gift indeed. But what a beautiful way of looking at her.
ReplyDeleteShe will always be my baby girl.
DeletePixie: yes. xoxo Kate
ReplyDeleteYou know too.
DeleteIndeed. All of it. I’m glad to know you and to share these with you. I’m not sure I could live without that camaraderie.
ReplyDeleteIt's so strange that I call you friend and yet we've never met. Sending hugs to you and Sophie.
DeleteNot sure why I’m Anonymous, but this is Elizabeth! ❤️
ReplyDeleteI think "what if" must be two of the most torturous words ever. My sewing teacher's son, at the age of 26, was dashing down the stairs to go out when he fell and landed on his head. His skull was pushed in and he suffered pretty severe brain damage. He had just moved into his own place and was so excited about it. And now? His rages are getting worse and she has had to place him in a secure institution for all of their safety. "What if" haunts her to this day! I'm so sorry for all those haunted by "what if"!
ReplyDeleteWhat if is hard, especially when nothing can be done about it, except acceptance.
DeleteI feel for you Pixie, I really do - just as I feel for any parents who have had to cope with a disabled child who will never tread the path of "normality". I don't know if I could have ever carried such a weight but I am tremendously grateful that I never had to face such a relentless challenge.
ReplyDeleteI'm fine now but it took years to accept Katie's disability. I still feel sad sometimes, like her sister's wedding but for the most part, it's ok. It was hard though. It was the hardest thing I've ever done.
DeleteThere are so many what ifs aren't there? What if my birth mother hadn't given me away at 2 weeks old? My whole life would be different. My younger daughter hits her head against the wall until it bleeds because it's the only way she can cope with the voice in her head. Either that or she cuts herself. Life is a bitch.
ReplyDeleteI think it's perfectly understandable to wonder about those "what ifs." How could you not? The bottom line, though, is the love you feel for Katie just as she is. I too think "hard gift" is a great description.
ReplyDeleteYour hard gift. Wow, that rocked me, those words. I think those of us who have not walked the path you and Elizabeth walk each day can never truly understand what it takes, what it gives, the grief you live with. Even so, I am so grateful you choose to share your experience, so I can at least grasp a mere millimeter of it. I send so much love.
ReplyDelete