When my daughter told me she was pregnant, I began doing the happy dance in the middle of Pet Smart. I was going to be a grandma! She was crying on the phone, asking me if I could verify the results of the ultrasound she had done at her doctor’s office. I went to nursing school and had been in the medical field for almost 25 years. Nothing shook me as much as this. I worked with a physician who studied pediatrics and she looked at the paper results. She said there was no way they could diagnose that baby with Dandy Walker Syndrome without a more extensive ultrasound. My daughter, K, went to a specialist after some convincing from myself and my sister who didn’t live far from her. The specialist was rude and condescending. He tried to talk my daughter and J (the father) into an abortion. I knew my daughter’s views on abortion and was proud she stood up and refused. She ended up leaving that office as he was less then helpful and went to the University of Michigan. There, she was given a more extensive ultrasound that confirmed the diagnosis and also that the baby was a girl. Our Bean. That is the nickname she has gotten from all of us.
Living 600 miles away was emotionally hard for a lot of reasons. As a mother you want to be there to watch the baby grow and the glow on your daughter’s face. You want to hear the heartbeat. I was in a position where I was blessed to have FaceTime and be connected to her on social media.
She was more calm then I ever could be.
She went into labor early and I was able to catch a flight to be by her side. I waited in her room along with her dad, my mom, and J’s family, awaiting the news of Bean’s birth. Finally, her dad got a text. She was here! I begged to see the picture. When he showed me, I fell to the floor. Not only was she born with a brain cyst, she had severe hydrocephalus (water on the brain). The condition caused her face to be deformed and her head was larger than normal.
My mom picked me up off the floor. K was brought back to her room several hours later and I hugged her. She was still the calm she had been all along. I knew I couldn’t cry, at least not in front of her. They hospital us to go down and see Bean. My mom and I went alone. K’s dad said he could not handle seeing her like that.
As I walked up to the incubator, I saw her chubby little legs. She had a head of dark curly hair. By now they had her hooked to many IVs. I took pictures but avoided her head. I realized that K would want to share her miracle online and that she wanted to keep the issues at hand our own. She loved the pics and those were the first to hit Facebook. Within 24 hours of her birth, little Bean underwent surgery to place shunts in her head to drain the fluid. It was amazing the changes that occurred within hours of that surgery. Her face changed and she smiled.
I stayed for a few days and within a week she was able to come home. I got a call shortly after they came home and my daughter informed me Bean was back in the hospital. It was critical. One of the shunts had grown Ecoli and she now had Ecoli and meningitis. I was sobbing beyond control. My husband put me on a plane to Ohio and my employer was more than understanding.
I didn’t tell K I was coming. As I got to the floor where Bean was in ICU, the nurse had to tell K I was there. She came out smiling and said, “Mom, why are you here? I don’t want you to get in trouble with your job!”
Typical K, worried about everyone else but herself. I hugged her and I knew she was scared. She is not the hugging type and she hugged me back. Bean was hooked up to several machines and every antibiotic the hospital had. Her room resembled a NASA base center. The doctor came in and talked to K’s dad and I. He did not give much hope for her going home and told us to prepare for the worst. He explained that Dandy Walker Syndrome causes webs in the brain that trap fluid. He could place a shunt for some but not for all Bean had. It was all up to Bean now. I called my husband who flew in. For the first time he met Bean and held her hand.
Bean not only came out of that critical situation, the stinker pulled out her breathing tube! Bean is a pillar of strength just like her mom. Next week she turns three years old and has defied more odds than any child I know. She learned to sit up, she loves the pool and the beach, and she loves cartoons especially Doc McStuffins. She does not walk yet but has some pretty strong legs. Bean will do her thing in her own time. That is how she has been from day one. When she is ready she will. My daughter is raising her alone and she is fine with that. Some days are harder especially with no help. K is strong. No wonder Bean is that way, too.
A friend who has a child with special needs told me something to say to people when they ask about Bean: I can tell you what she did today. I can tell you what she did yesterday. Tomorrow, if you call me, I will certainly let you know. That has been the best words of advice.
I will watch her go off to pre-school in her specially made stroller. I will be there next week to celebrate her birthday. I have not missed one yet and I never plan to. Bean has a therapy horse named Sophie, and I will be there to watch her sit in the saddle. I am Grams to Bean. She is not a miracle, she is our Bean. And she proves how to fight every single day. I love how little things like a ball with texture, a noise on a toy, or smooching her on the cheek makes her laugh so hard.
To learn more about Dandy Walker see www.dandywalkeralliance.com or see the Dandy Walker or Dandy Walker Grandparents pages on Facebook. To learn more about the University of Michigan Motts Childrens Hospital www.mottchildren,org.