Lately, it is not like that. Rett Syndrome has trapped her inside her body so bad that some days, I don't see my funny little girl. I see a little girl who screams, yells, pulls her hair, has seizures, can't control her body... and it's so hard. She has so much medical equipment that she now looks like a special needs child at first glance. Don't get me wrong, it's not a bad thing to look like a special needs child. My daughter didn't come to me as a special needs child, she came as a typical child. I got to see her as a typical child. I got to see her sit and walk with no medical equipment. So to have her change so much and now see her be surrounded by some kind of equipment at all times, it's hard... really hard! Some days I feel like I got the Rett Syndrome diagnosis all over again. The emotion and heartache hits me really hard lately. I find myself of the verge of tears, or crying in public, a lot lately. I think about those days where my little girl had control of her body and her words. I look at her now and see her yelling to get out. Trying so hard to break free of this broken body and be a little girl again. It's been so hard having so many Rett girls passing away and knowing that if a cure doesn't come soon, that will be her.
I often wish I was warned about this second wave of grief. When she was diagnosed, she hadn't completely regressed. The grief was of what we would loose and what would happen to our daughter. I have just hit the second wave. The part where the regression is over and she has lost everything. That part where we are now living what we feared when we got the diagnosis. The anxiety, seizures, scoliosis, breath holding (where she passes out), GI problems, constipation, G-tube, tremors, screaming fits.... etc. It breaks my heart in a million pieces and I hate going through this grief all over again.
I am so grateful to the friends who have reached out to me to tell me they are thinking about me. These people have no clue what I have been going through but they felt the need to reach out to me and I am so appreciative of them in my life right now. This diagnosis is hard and this life is harder than I ever imagined.
I do have to say that I am so incredibly grateful for Oaklynn in my life, she has taught me so much and she is one of the sweetest little girls I know. I wouldn't give her up for anything in this world.
I am often contacted by moms whose daughters are recently diagnosed and have found me due to my blog. I want them to know about this second wave of grief as I wish I did. So to them:
You will grieve now... a lot! You will be scared of what is to come and you will be so incredibly sad. You will come to terms with Rett Syndrome and that it will be your life. Just know that most likely, it will hit you again (and maybe even a couple more times). When the regression is over and she is trapped inside her body, you will grieve all over again. If this happens, I am here for you. I know how you feel. I wish I could throw my arms around you and cry along with you. Rett Syndrome sucks, but you aren't alone.