It’s been nearly two and a half years since my daughters diagnosis and sometimes I feel like I’m only just now starting to process it. And I’m struggling.
Maybe it’s because we are only just now starting to feel the effects of her diagnosis. I mean for so long her diagnosis didn’t mean much more to us in our day to day life than an extended baby season. That’s changing now.
Maybe some of these feelings were brought on by traveling and imagining what that will mean for us in the future. It was difficult and challenging and will only become more of a struggle as she gets older.
I don’t really know what brought it on but I’ve cried a lot in the past three days. Over what could have been. What should have been.
I remember laying in bed late at night one night soon after Sage’s diagnosis and telling Bryan, “She is God’s grace to us. And I wouldn’t change her.”
I still believe that she is God’s grace to us, but lately I would change her if I could.
If I could magically heal her and make her normally developing I would.
I wish. I long. I desire so much lately for my daughter.
I wish that she was a normally developing almost three year old. I wish she was making mischief and getting into trouble. I wish she was starting to play together with her brother and other kids and learning how to make friends. I wish she was talking and walking and jumping. I wish she was eating real food and sleeping through the night like a normally developing almost three year old. I wish other people felt comfortable watching her and that I felt comfortable leaving her with them like I would if she was a normally developing two year old.
I wish I could change her.
And then I feel completely overwhelmed with guilt for having that thought, that desire.
Mostly though I just feel sad.
And I think that’s ok. It is sad.
This sadness, this sense of loss, these things are grace to me too. It is in these that I learn to lean. It is in this pain that I learn to look to the God who made my daughter and loves her even more than I do. It is in this that I learn to trust. And it is through this that I receive grace upon grace.
I imagine that I will probably need to cycle through this grief multiple times, again and again, in the coming years. I’m sure there will be days of gratitude, days when God seems near, and then there will be days like these. Days when all I can do is fall on grace, call out to love, cry, and then open my hands to receive.
Rejoicing in the journey,