Ready, set, go…
I have a love/hate relationship with Adelaide’s progress. When she does anything new, I practically throw a ticker tape parade. But then I quickly remember just how far behind we are. How we are so far from where she should be. And when I’m honest about these feelings, most people try to say stuff about how God will work through it. Or the dreaded ‘normal is just a setting on a dryer’ bumper sticker response. I can’t just pour out my heart about how incredibly difficult it is to watch my kid try to stand a hundred times in one day and not succeed. Before someone says that she will inspire others with her deficits, I double dare them to spend one day watching her try. Or not try. Some days, she does nothing. Nothing at all. And I post all these positive inchstones to avoid the label of Negative Nancy, but there are days when my hope is gone. There are days when I realize I will still be doing the beginning stages of mothering when all my peers are grandmothers and great-grandmothers. I get the opportunity to raise this incredible person, who will most likely live with me until I am too old to care for her. That’s not what I thought would happen. No thought of disability was in my mind until it was our life. My plans were changed for me. And I still battle with that reality, while people migrate in and out of her life. I am the constant. And I can’t do it all or even delegate it all. So, I rejoice that she said ‘walk’ today. But she can’t even do what she said. She can’t walk. And we don’t know if she ever will. I keep the hope, but I also cry at the irony and wonder what I can do, if anything, to get us closer to independence. Whatever that looks like for her.
You can join me with your five minutes of raw and unedited thoughts. No judgment from me if you feel like you were sucker-punched today.