Tuesday, October 27, 2009

The Speech

This is the speech I gave today for Wonderland Developmental Center's 40th Anniversary Celebration in a large ballroom in the convention center.

Frist I want to tell you about a little girl named Cheri Lee, born in the late fifties. She was born healthy and beautiful. Big blue eyes, bright blond curls and she loved to run. Then one day she became terribly ill. Seizure after seizure and then apparently a stroke. She was placed in a bed. Her parents were told to put her in an institution. She was never given therapy or moved. She lay in a bed. For years she lay in a bed. Back then they didn't know you had to move so she lay in her bed.

When I was seven months along with our fourth child, something odd happened. I felt my baby girl within me do something she'd never done before. I felt her have a seizure.

At the time I didn't know it was a seizure---but it felt that way to me.

Then I felt...nothing.

For two days I did everything I could possibly do to make the baby move within me. I ate chocolate, I ate more sugar than I'd eating in the previous six months. I lay on my bed and poked my swollen belly. Nothing. I called the doctor and she had me come right in. Her ultra sound showed the same thing---my baby floating in amniotic fluid but no movement. She sent me to the hospital where they preformed more tests. There was a faint heartbeat but no movement.

They told me my baby was dying and they didn't know why. There was enough amniotic fluid. They didn't know why she was dying. They told me I needed a crash C-section. As I lay in the surgical suite, the anesthesiologist told me that he was going to put a tube down my throat, that his nurse was going to press on my neck and then I would be unconscious. I told him I'd give him fifty dollars if he'd put me out BEFORE he did that. He didn't laugh. He told me this was serious. What I didn't know at the time was that I could die too.

The I was out. Then I was awake. I didn't see my baby girl for two days.

When I did, she was perfection. Tiny, tiny perfection, but perfection nonetheless. They told me she was fine.

Fine? I was pretty muddled from the drugs but fine? How could she be fine? What had happened?

After a month, we were allowed to take our tiny, beautiful miracle home.

After a few weeks I knew she was not fine. I didn't know what was wrong, but I knew she wasn't right. She would lay on her blanket and not move. She'd be so still my heart would nearly stop in fear---was she dead? No, she was breathing. She did this again and again. Then she moved and I knew what she was doing.

Seizing.

I took her to the doctor and told her what was going on. She sent me to Children's Hospital and Ashley Rose had her first EEG. It came back abnormal so she had her first MRI.

Because there was such a long wait to get into see a Neurologist from the hospital, they sent us to see one in private practice. In the meantime I had the MRI films for two weeks. Two weeks is an eternity when you're in a situation like this. I pored over the films. I looked online to find MRI's of the human brain and I compared them to the films of Ashley's brain.

I knew there was something wrong but I didn't know what it was. There was this big black hole where I thought there should be....more..but I didn't know.

Then the Neuro walked into the room and said the words I never expected to hear. The words no parent of an infant ever thinks she's going to hear.

Your baby has had a stroke.

A stroke? My baby? A stroke? A STROKE?? Babies don't have strokes. Old people have strokes. A stroke??? What was she saying?

A stroke, A massive event that probably took place in the womb and since the location of the stroke was where language developed she might not speak, she might not walk and she could have vision issues.

You know when you first take a very bad hit? It knocks the breath right out of you and you're not sure you're ever going to breathe again. You can't get oxygen. You panic. You claw at the air, trying to force it into your lungs.

There were tears of course. Many, many tears. When the future is unknown for your child, there is fear.

Once we got over the initial shock, I went into fight mode.

I pored over research, I looked for intervention.

And I found Wonderland.

When I called Wonderland that first time, Marilyn answered the phone. I remember suddenly feeling choked up as I tried to explain why I was calling. What I wanted to say was “My entire world has just collapsed in on me, can you help me? Oh please, please help me. Help my baby”

What I said was that my infant daughter had suffered a stroke and I was looking for a place for her to receive therapy. Could I come see Wonderland?

Although that was what I said---Marilyn heard what I didn't say. She knew. She understood.

I bundled my little angel up and I drove to Wonderland.

I will freely admit to you that I was frightened. I was scared. My heart was in agony.

They wrapped me in a warm embrace from the moment I walked through the door carrying my tiny bundle. Mary Kay took Ashley from me and held her while I took the tour. Marilyn comforted me with her words and her demeanor.

Pam Neighbor led me through the labyrinth of paperwork I needed to navigate. The parent groups gave me other moms who were in exactly the same boat I was in. We sat and talked. We shared. We hugged. We cried. We were all worried sick about our babies. We were not alone on this very heart-wrenching voyage.

We could share our laughter and our tears. We could say things to each other that we could never say to the other moms at the bus stops in the morning as they complained about ear infections, or stuffy noses or skinned knees . I knew that saying Ashley had had a grand mal seizure the night before and then stopped breathing and turned blue would be a conversation stopper. So I simply nodded as they spoke. It was a club I didn't belong to any longer.

I belonged to Wonderland, where I could share life and death stories and it was all right.

While I was being cared for, so was Ashley Rose. She received physical therapy, occupational therapy, speech therapy.

After a while I took to taking walks outside while Ashley was receiving therapy. One day when she was nearing three years of age, I came back inside and everyone was grinning. They took me by the hand. “come here! Come here! We want to show you something!” They looked like cats that had just feasted on very plump canaries.

They took me into the room with the floor padding and the therapy balls and there was Ashley Rose sitting on the floor. Mind you, helping her learn to even sit had taken a year or more. We'd taken the furniture out of our living room and installed a ball pit so she could have fun as she learned to sit by herself. Often she'd slowly tip over and disappear under the colored balls and one of our other children would dive in to pull her out and prop her back up. So sitting was still a big deal to us.

As I stood there in Wonderland, I watched as Ashley took a step. A step! She took a step! Then another and BOOM down she went. But she'd TAKEN A STEP! The entire staff, therapists, office staff and Marilyn were there clapping and laughing and crying like we'd won the super bowl.

And we had. Ashley could walk!

Have any of your children had to wear one of these? I think this is her first leg brace. Over the years, we were casted many times over by Don at Cascade Orthotics. Ashley needed to wear these in order to give her stability as she toddled around. Every six months we'd get casted again and start out with a new brace. Ashley still fell a lot, but she fell less when she wore her brace. Once when she was about four years old, we couldn't find her brace anywhere in the house. We searched and we searched....nothing. Finally we found it in the garbage can. Ashley had made her feelings very clear on the subject of braces. Very EXPENSIVE braces.

Wonderland was an oasis and a haven for us. One of the therapists sewed a neopryne hand brace for Ash to wear. When we first began Wonderland, Ashley couldn't open her right hand, It was always fisted. We called it her stinky paw and lovingly pried it open and to wash it and put a cloth inside it. Her soft hand-brace helped her open her hand and keep her thumb out. When I found a new therapy online called CIT, constraint induced therapy from a doctor in Alabama who was treating adult stroke victims, I asked Children's Hospital if they would do it for Ashley. They said no.

Wonderland said yes. Barb sewed a little shirt for Ashley so she had no access to her left arm and hand. It was like a tiny pediatric straight jacket. She could only use her stroke affected side. It was amazing. She progressed in leaps and bounds because she HAD to.

I'm here to tell you that Wonderland is amazing, wonderful, and all things good for parents who have landed in Holland and not in Italy. I will forever be grateful to Wonderland and it's staff for their kindness, their compassion, their love. They do not just treat the child, they treat the entire family.

My baby girl can walk because of Wonderland. There are no words to express our gratitude for that.

Braces like these give stability and support. Wonderland is the source of stability and support for grieving parents who are ready to stand and fight for their little angels.

Remember this little girl I told you about in the beginning? She is my sister. She's out of bed now, but lives in a wheelchair, unable to use the left side of her body. She can't open her hand, she can't walk. There was no intervention in her time of crisis. There was no Wonderland for my sister and so she has spent her life in a wheelchair and living in an institution.

Thank you Wonderland. Thank you for being there and blessing the lives of so many children and so many families.

Ashley? Please come up. This is what Wonderland has done. Thank you.

(Ashley came up to the podium and gave me a bouquet of flowers and stood there while the audience clapped for her)

5 comments:

  1. Wow Pam! Very well done. Too bad I couldn't have come or even Dad & Cheri. I'm proud of you.

    Keep it up Ash!

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  2. I don't know what to say. That was an amazing speech. It made me teary to picture Ashley walking up to hand you flowers. What a journey.

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  3. Sniff sniff..... thanks for a good cry, that was amazing

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  4. Thanks.

    You know that picture of Cheri in the dining room? On the wall? The big black and white one? I took it with me and held it up when I began my speech..and then when I finished.

    I wished Cheri could have been there in person. The impact would have been incredible.

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  5. That's so sad about your sister!! But it's so wonderful for Ashley. What a wonderful talk!

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