Tuesday, October 26, 2010

4 years ago today

My baby. Eating a phone and wearing the bonnet she put on herselfHer first biter biscuit. What a mess. Took her and the chair to the shower afterwards.Chubby lil Monkey with toys in each handDestroying my living room as usualCaught her kissing herself in my Tiffany Mirror. Got this shot when she looked up at me. PricelessFeeding herself. The night before Rett came in the night and stole herThat day. Took this pic because we couldn't figure out why she was so blank and wouldn't stop messing with her fingers2 days before they told us Last year. Beautiful. My entire world

Most important. She is happy. Nothing else matters.

Four years ago today our world as we knew it and hoped for it came tumbling down.
Four years ago today we went to the hospital to visit the Genetics scientist. We were under the impression we were going to give them a medical history and draw more blood. We knew she didn't have Rett Syndrome because the test had already come back negative. We knew they had sent it off to Houston to what they called a backup deletion test but we didn't know what that was or what it meant.

We calmly walked in and sat down. The Doctor came in and smiled at us and got out his notebook and started going though the history on both sides. All the normal history questions. Heart, lung,cancer,lupus,diabetes..........This lasted almost an hour.

He then put down his notebook and said,"Well what we can tell you about Rett Syndrome is unfortunately not much......" He said more things but I stopped breathing and the room started spinning. I stopped him and told him that Abby didn't have Rett Syndrome because we had already taken the test. I just looked at him and said,"Did you just tell me my child has Rett Syndrome and just slipped it into conversation?"
He looked at me and said,"No Mrs. Vejrosta. What I am telling you is that Abigail DOES have Rett Syndrome.

I started to hyperventilate. The room went dark and I just shook and kept saying no, no, no over and over again. I looked over at my husband for help and his face was red and he was sliding out of his chair and shaking uncontrollably. He had gone into shock. I yelled at them to get somebody, to do something. They got him up on a table and gave him juice and I held him and told him it was OK and we were gonna do this. I told him she was still our baby and she was the same baby we had yesterday and the same baby we had this morning.

By the time we got George on his feet there was several of the genetics doctors and nurses in the room. I remember looking at my daughter who was wobbling around the room and twisting her fingers and smiling. I looked at one of the doctors and said, 'What do we do?"
She looked at me and said, "Take her home and make her comfortable."
I thought she was gonna die. I was so sick. I just shook. I was more worried about my husband though. He was inconsolable.

I went home with the website address they had given me on an over xeroxed piece of paper. The thing he handed me when he told me all I could do was find other families. That they would be the only support I would have and the only people who knew how to deal with Rett Syndrome.

I went home with this hard to read flyer and started to look up information. It did not make me feel any better. It made me feel horrible and empty.
I started looking up online Rett Support Groups an finally found one. They welcomed me immediately and the very next day I heard from the Rett Syndrome Association rep in our area. Later that day we heard from Kathy Hunter the founder of the Rett Syndrome association. We talked to these ladies several times over the next week and they assured me that although it was horrible we could handle it. That Abby was still our baby and we were just going to have to choose to be happy and to learn how to dream new dreams.

This year hasn't been much different from all the other years. This may sound horrible to say but D day...October 26th never goes away. It's almost like they day our baby died. She was lost many many months before but that was the day they told us for sure that nothing would ever be the same. Every time I pass the man who told us in the hall of the hospital part of me wants to kick him. Or beat him senseless with my purse. Not his fault that she has Rett Syndrome but I will never forgive THE WAY he told us.

One thing did come up this year. Day before yesterday. I had blocked it I guess. I remembered while volunteering in the church nursery what one of the last things Abby had said to me was. I have previously recounted over and over words or phrases she had..one of the things you have to tell ever medical person you see over and over..even at the same hospital. You think they'd just look it up rather then ask you time and time again. Something one of the kids did made it come back...
I was carrying Abby through the mall. She was on my left hip and I was drinking a fountain coke in the red and white cup. She kept leaning forward trying to get it. When I wouldn't give it to her she grabbed my shirt and stuck her face in mine and said, "I love you!.. Coke?" Completely normal. Totally a toddler. Never to hear again.

There are still days even four years later when I don't want to get out of bed. There are still nights when I cry myself to sleep. It usually hits after we have been around a girl her age and we see all that she can do. Or we meet a small child who has something we previously thought was the worst and watch him run circles around Abby and watch while he signs to his Dad and is able to communicate.

Abby is very wobbly like a infant just learning to walk. She can't climb up or downstairs. She cannot pick up or hold anything or talk or used her hands. She will never gain these skills unless there is a cure.

In the last four years we have met wonderful families in the same boat as us. They have become our family. I don't know what I would have done in the last four years without The Rettlanders, , Kelly and Carrie, Ingrid and all the new families that now come to me for advice and guidance.
To help, Learn, Advocate and Donate:


Dawn said...

It's always hard to read "D" day posts and it seems that there have been a lot of them lately, all in the month of October. I enjoy reading your blog and the way that you embrace everything about your daughter! Big hugs to you today!

Kelly said...

I love you SO much! I completely hate that we had to meet because of Rett Syndrome but love that you are part of my life. Abby is SO amazing and is part of my inspiration for fighting each day! YOU are part of that too. "d" day is ALWAYS hard - well, everyday with Rett is hard actually. But we do it - for our girls. Abby is one lucky lady to have you as her mommy! Keep fighting for her! I love ya both!! BIG HUGS from Indiana!!

Erica said...

its amazing to me that so many of us have october/november D-days. ours is on 11/9. one year. i also keep hearing more and more stories like yours-how you were told. being told it wasnt rett and then oh yes it is. big hugs to you. thank you for your blog.xooo

The MacDonald Family said...

HUGS! HUGS! Our cure is coming, hang on to that and keep being the awesome mom that you are!!