Grieving a Child Gone, yet Still Here

For many parents, I’d almost dare to say all, Life can be categorized as “Life before Rett syndrome” and “Life after Rett syndrome”. My daughter, Katie, is 24 now. For 22.5 years I have loved the child in the “Life after Rett syndrome” and grieved the child gone from “Life  before Rett syndrome.”

Before Rett syndrome, my girl was so happy; I can still see her bouncing her little diapered bum when she threw something in the trash can, such a big, little helper. I remember her crawling on the floor, picking up my keys and going to the door and trying to unlock it-she wasn’t even 6 months old. Oh, how SMART she was. So full of giggles and laughter. She had a ring of plastic beads and I’d say “Pretty Princess” and she would put it on her head like a crown. And, when I’d say “What does a dinosaur say?”…she’d roar the cutest little roar ever. Even remembering it now, all these years later, the tears are streaming down my face. My sweet, baby girl, stolen from me by Rett syndrome.

And how can you explain to someone when you are crying for your child that is still right beside you, that your pain is so great. It’s not just that your child was taken, it’s that you feel like your child is trying to reach you, to find YOU, to be back, too. And neither of you can make it happen. It’s a knife in the heart.

Life before Rett syndrome held dreams that were not only possible but probable. You held your sweet, perfect baby and saw sports teams and trophies, a first kiss, first love, the prom, a wedding, a baby for them. You saw pictures on your refrigerator, snuggles in bed and tickle fights, you saw a time when Barney and Sesame Street would one day move the heck on out of your house. You saw an end to diapers and mounds of laundry, and all those planned endings would just be the start of new beginnings. And the thief that stole your child, stole all that away, too.

And there you are-left to cradle a living child and grieving for all that was now dead to you. Grief gets easier to bear, except when you see children on a playground climbing up a slide and your child can no longer walk; it’s easier to bear until you are holding your daughter or son in bed cuddling…after a seizure; it’s easier to bear until prom comes along and no handsome young man is going to ask your girl to her first dance or your son is not pulling at his necktie nervous as all hell as he knocks on his date’s door; it’s easier to bear until your younger children surpass their older sibling and help feed them, run for diapers, wipe drool from their mouth, have to defend them at school. It’s easier, until so many times it isn’t.

And those were just MY dreams. What about Katie’s dreams? I grieve for them as well. What would she have been? My girl loves space, so I imagine she would’ve been a scientist. All these could’ve beens, SHOULD’VE beens. They haunt me at times. Yes, in the Life after Rett syndrome there are amazing times. You learn to appreciate every little thing in life, a breath, a heartbeat, a new first word, laughter, hand use, a step. And you love this child fiercely, your child. This is how I know Love is supreme, because it is strong enough to exist in the conundrum of “the child I had is gone for ever, this is the child I have now and so I will love this child to my dying breath” even while suffering such a great loss.

Who Katie is now, is amazing. She is kind, empathetic, compassionate. She is part leprechaun, I say, because she is a jokester. She doesn’t care what color people are or who they love. Everything about her is pure, every emotion is real. She doesn’t have it in her to lie. She is an incredible human being; she’s brave and daring and has to fight every day to win a battle against Rett syndrome. I like to think that each fight she wins, she’s saying “I’m still here, mom, I’m trying hard to get back to you.” And, yes, in many ways I’m lucky. I have a child who will never leave me. I will always get to experience Life in a wondrous way full of small miracles, because of her. But, whether it makes sense or not, I will still always grieve.

Does it seem I am so ungrateful? That my child is alive and so what is wrong with me? I suppose it does. But, you see I am a mother who has to live with grieving a child gone, while loving the child I have and they’re both the same. I love them both, I just miss one.