Tuesday, January 13, 2015

The second wave of grief

It's been hard lately... really hard. Oaklynn use to be a typical child. She use to walk, talk, feed herself, play with her toys... do everything a typical child could do. Rett Syndrome hit, and she lost all of that. But to me, she was still the same Oaklynn. She still had her fun, silly personality and her witty humor. She still looked like a typical child until you got to know her a little more. Then you realized she had special needs.

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.


Anonymous said...

I know what you're going through, as my daughter too has Rett. There's no comforting words I can provide for you but... just stay strong. There are the hard days and the great days. Every day is a great day to me no matter what. "MY" "A"nage "MYA" will always be my my angle, dear sweetheart and I love her with all my heart . And don't think I didn't shed a tear or two writing this.

Unknown said...

I happened on your blog when starting a new Board on Pinterest for Special Needs. I was amazed at the number of Pins I found when I searched Rett Syndrome! I searched & searched for some other Mother, someone to hear me in the 1970's when I knew something was terribly wrong with my Kristy. It wasn't until a couple of years before her death in 1998 that I first heard of Rett Syndrome. I still grieve. Not all the time, not every day, not even every month. But the love a Mother has for her child has no end even if that child's life has ended. I am thrilled to see all the support all over the world. You are not alone in your pain. This Mother grieves with you. This Mother knows what the days & nights are like, the feeding problems, the seizures, the hands that twist - Oh! those precious hands.

Unknown said...

I just left another comment, scrolled down & found you are here in AZ. I hope the first comment was not lost as this blog business is all new to me. I am in AZ also, in the far east valley of Phoenix. God Bless You! Marilyn Hersey

Peter Sellick / Eye Gaze for Keoni-ann said...

Hi Whitney

My name is Peter and I am writing to you from Australia.
I have dear friends who's 18yr old daughter has rett syndrome.

I hope you don't mind but I have watched your video(even made a 47yr old wipe his eyes) and have shared it. We are currently setting up a fund to get Keoni a tobii eye gaze device and have a facebook page called Eye Gaze for Keoni-Ann. Please read her story. Un diagnosed for 10years as an example. Please share her page if you can.
My heart goes out to you and your family. Stay strong as we know our girls are