Sunday, September 25, 2011

"Bee"-ography: Grandparents edition

To wrap up the month of September and our celebration of grandparents day, which was officially on September 11, this "bee"-ography comes from Dawn, gee to Haydin:

My Grandson, Haydin is the most important person in my life. He is my hero, my reason for living and is the light of my life. He and my daughter Haylee live with me so I am fortunate to be with him everyday. We didn't get his diagnosis until he was almost 3 months old. My daughter didn't find out she was pregnant until she was already 6 months along. I was nervous and made sure that the OB/GYN did an ultrasound often. She told me that if she thought there was a problem she would tell me. I listened to his heartbeat strong and steady. From the first time I heard it I was wrapped around his little finger. 
Haydin was born on 3/23/2009 @ 6:22 am. His head was so small and he was so tiny and perfect. The nurses thought he had a lactose allergy so when we got him home and to his first doctor appointment we got him on a soy formula. That seemed to help w/ his fussiness but didn't eliminate it. Through this Haylee finished her Junior year of highschool and was looking forward to a summer of taking care of her son, working and getting ready for Senior year. 

The colic continued so another doctor appointment. Over his first 2 1/2 months the doctor noted his head circumference was increasing. I told her it was a family trait and not to be concerned. Just to be safe she scheduled him for an ultra sound she thought maybe hydrocephalus but I knew I was right. So on June 18, 2009 we went to our local Nationwide Children's Close to Home Center for the ultrasound of Haydin's skull. The tech looked concerned and went to get the doctor. He told us he saw a lot of fluid and wanted us to go to the main hospital downtown to get a CT to get a better look at his brain. He took me out of the room and was explaining as we walked down the hall then he said "I don't know how much brain damage there is. We have to get a better look." I was in shock what the hell was he talking about? He told us they would be waiting for us and would get him in as soon as we got there. Sure enough we got there and in minutes we were watching Haydin get strapped to the board and the CT was done. When we left the room a Resident that worked w/ the Head of Neurosurgery was walking toward Haydin, Haylee, Haydin's dad and I. We were told Haydin was being admitted and that a shunt would be surgically implanted the next day. Ok this is no big deal. We get admitted my daughter goes home to get some things to stay at the hospital w/ her son. Haydin's Dad and I stayed at the hospital and would await her return w/ his family. A little while later the head of the Neurosurgery department comes in to talk to me and Haydin's dad. He says this word I'd never heard of before, Hydranencephaly. He said Haydin would never walk, crawl, talk, know us, know what was going on around him, doesn't feel pain doesn't anything he's a vegetable don't get attached. Then had the gall to ask if I had any questions. All I could think was you SOB I AM attached. I didn't know what to say or ask I just told him he had come in punched me in the stomach, reached in my chest ripped my heart out, stomped it on the floor and threw it out the window then ran over it with his car. He'd need to give me a minute to process. Then he hit me with the blindside punch. "He won't live to be a year old." he said. Then said how sorry he was and left the room w/ his residents, students and such. I had to tell my daughter and the rest of the family. I blamed myself. I don't know why I just knew God was punishing my Grandson and Daughter for something I had done. I knew it wasn't true but as a Mom/Grandma I take everything onto myself. 

I went home that night and looked on line I found the Rays of Sunshine site and what a help that was. I wasn't alone! Haylee wasn't alone! Haydin wasn't alone! There was somewhere to go to. People to ask questions and get advise from. 

His shunt was placed and our nonstop appointments w/ specialists I never thought I'd be working with started. We saw so many doctors so many offices so many specialist and I was there for everyone of the them. I HAD to know what was going on. What I could do. What I could do to help my daughter get through this and be the best mom she could be to a special needs child. I am so thankful that we have a team of doctors that hasn't given up on him. We went to doctor appointments it seemed 1 or 2 a week. 

The next thing I knew Haydin was turning 1 and our appointments were slowing down to every 6 months. He was in PT/OT. biannual visits to the CP clinic, going to the Developmentally Disabled school 2 days a week and we had Help Me Grow. He had had 1 ear infection and a few colds but nothing major. Wow this was getting easy. He wasn't rolling over but he was making sounds and he definitely knew Mommy and me. He sometimes says Ma for his mommy and Gee for me. I love that. I also love coming home from work and getting a huge smile of acknowledgement from him. He gets bigger, stronger and he's on the weight chart! He loves to stand with help. He's letting us know what toys he likes and what ones he doesn't. Then it's almost his second birthday. The Neurosurgeon isn't nearly as doom and gloom as originally. CP clinic helps us by giving us Rx's for a medical stroller and a stander. We get the medical stroller but are fighting w/ insurance for the stander. He had his first bout of Bronchitis in the early spring but didn't need to be hospitalized. Haydin had to have abductor & inflexor surgery this past spring and came through that like a champ. I'm afraid to jinx it but over all he's healthy. 

In June I became his home health aide. His mom will graduate from Dental Assisting school this month and we are so proud of her. We have stopped only living in the "now" we actually make plans and look ahead to birthdays and vacations. We don't worry about the what if's we just go on about life and include Haydin in the most mundane things as a trip to the grocery store to the most grandiose as him being in his auntie's wedding. We don't worry about the people who weren't strong enough to stay in our lives we cherish the ones that looked beyond the diagnosis and prognosis and love us and him more. 

Haydin loves to be outside, he loves his pool and loves to be around people. He loves the zoo and walks in the park or across the dam. He knows he is the center of the universe. He plays w/ switch toys he activates w/ his head. He loves food. He's not picky he will eat whatever we feed him but somethings go down easier than others. He has sleeping issues but is the happiest non sleeping person ever. He rarely cries, always smiles and laughes. When he started school last week everyone knew him, came to see him and comment on how big he's getting and how healthy he looks. It makes me proud b/c that's all his mommy's doing. She has never given up on him never questioned why and never thought twice. She's stronger than parents twice her age and wise beyond her 19 years. We are so thankful for our family and friends for their love and support. We cherished our extended Hydran family and thank them for their support and compassion. 


I am so thankful to have Haydin as my Grandson. He has given me faith, perspective and meaning. All I can give him is love.

1 comment:

  1. Wow!!! What a beautiful story and and what a gift God has trusted you with, eh? I have had such admiration for Haley and just thought Haydin was so beautiful since I met them on facebook. Thank you so much for sharing this. From Jen, mum to Malcolm.


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