I want to say thank you to everyone who's taken time to send me nice messages, cards and write to me. My Mom and Dad tell me everything you say and it helps me thru each day. Thank you for your generous, gracious donations and for buying my special T-shirts. The help from everyone makes my family so emotional and we are so thankful for such great people in our lives. You'll never fully understand the impact you're making for me. THANK YOU!
I've been in the hospital systems now, my entire existence. It's expensive and stressful for my family, but they are cutting no corners in my care. They will and are doing everything, with the help of some truly amazing staff, to figure out why and what happened to me to cause all of this. It's hard to explain what this situation feels like. Not only for me, but for them too. For me, I know no different...I've never been outside, never laid on my tummy on the living room floor, never nursed or been in a crib...Mom hasn't even heard me cry or held me close to her skin so I can hear her heart beat. I am doing okay in here. I have great nurses and doctors. I get upset with cords and tubes. My little body is stiff and my muscles are weak. I don't get to have a bottle, move around much or do much "baby" stuff. At least I'm little though. My family hopes I won't remember any of this nightmare. For my Mom and Dad, this situation is just that, a nightmare. They were so excited to find out they were pregnant with me. After several miscarriages prior to me, they were overly cautious in my prenatal care. Pregnancy and delivery went great...so why? Why? They tried so hard to get me here in the first place. Then finding out I was a boy was very emotional and brewed even more excitement. So, to have all this happen to me...it was so unexpected and absolutely shocked us all. I know Dad is good at putting on a tough face, but he cried to hard the first few days of my life. He was just like any other Dad-to-be...excited to teach me what he knows, raise a good man and have an heir to his name. Mom was just happy I was okay at all my appointments and excited to love me when I came out. She just wanted to hold me in her arms, teach me to be a good man and to love life, love our family, love our land. But, the day I arrived, Dad and my Grandpa & Grandma rushed behind an ambulance after me to UW AFCH. Mom stayed at the hospital...I was just born. I had just died in front of my family, too. Mom needed to be alone with her thoughts. The staff at the Sauk Prairie medical center basically preserved my body with great CPR and a pacer until UW AFCH could get me onto the ECMO machine. My Dad had to see that situation first. He didn't handle it well. His dreams for my life were flashing in his head. He thought I was gone. Mom and my grandparents thought so, too. Time has moved on and even though we still think back to that day, my birthday, we are getting through this as a family. Mom and Dad are getting more educated as my stay at the hospitals lengthens and with that knowledge comes acceptance of my situation. They have learned to manage, organize and endure this all on an hour-to-hour basis. Between me being their loved baby boy and learning to be parents, paying expenses from my care, accepting my status every day as changes happen, organizing work and home life, traveling about 230 miles a day from hospital to home and just keeping everyone's questions answered and keeping family updated...it is extremely exhausting and overwhelming every day. Mom is still very emotional about me being in this condition and blames herself. She thinks she is cruel for bringing a baby into this world just to have all this happen. She doesn't feel like a Mom. Dad, he keeps her strong through this and hides his emotions better, but has his days too. Thursdays are always hard for us all...I was born on a Thursday, so it means I'm a week older. I can't believe that tomorrow I will be a month and a half old already. What a journey I have already been thru! Praying my heart gift comes soon. My family needs me and I can't wait to join them in our great life.