We just wanted to let you know that we think about you all the time and we are both excited about the match testing. That’s just one step closer!
Jill, I know you said that you hope neither one of the kids remembers any of this, but I don’t believe that this experience is all bad. I remember, when Ronnie was around Gavin’s age, he had a lot of breathing problems. My mom had to give him treatments all the time. Now, you would think that seeing your little brother hooked up to a machine might be scary. However, I believe it brought us (me and Ronnie) closer together. I developed a great sense of pride for him and I wanted to protect him from anything that would cause him harm. As I look back on it now, I didn’t see him hooked up to the machine, I just saw him as my baby brother:) If Lauren remembers this, I believe she will look passed all the negative stuff also. You and Jay give them so much love and such a great home and that’s the only thing that they will dwell on.

We love you all very much! Hope to see you soon!
Joanna & Lance

Good luck on your testing for a match for Gavin. I hope everything goes well for you and your family. I bet the kids really enjoy the zoo. That is such a neat place to go and leave your troubles behind even if it is just for a moment. Hang in there. You all are in our prayers. Thanks for the up-date.

Love Nancy

I’m not an expert, but I did grow up in a somewhat similar situation. When I was 6 1/2 and my brother Mike was 3, our brother Scotty was born. He was 3 months premature and weight 1 pound 14 ounces. These days a birth like that may have a happy ending, but in 1979 it typically didn’t. Unlike Gavin, the problems Scotty was born with are incurable, and from the time Scotty was born we knew he’d never lead an even close to normal life. Also at this very time my dad left, so my mom was raising the 3 of us alone and trying to work 1 full- and 2 part-time jobs as well.

All of childhood Mike and I can remember included Scotty. He had seizures, operations on his skull to insert and fix his shunt, eye surgery, multiple hip surgeries, etc. But the only ‘bad’ moment I can remember was when I was about 8 and my friend’s dad came running to the park where I was swinging on a swingset to tell me an ambulance was at my house. When I got home my mom, Scotty and Mike were gone. None of the neighbors were sure what occurred, so for awhile I cried on the porch not knowing what happened, or to whom it happened. (It turned out Scotty had a bad seizure, but he was OK.)

My memories of childhood are good ones. It didn’t feel ‘abnormal’. Many people in the community supported us. Teachers at my school obviously cared deeply about me and my family. Yes, as kids we were probably exposed to subject matter and thoughts that most would hope their kids wouldn’t have to endure. But it really was ok. Scotty was, and is my brother, after all. I was always proud that I was able to help him, by singing songs or helping with his baths. As an adult I know it’s helped make me accepting of all sorts of disabilities and differences. My brother Mike too – he was in the Peace Corps, and now lives in Washington DC working for a company helping people living with HIV/AIDS in Africa. Now I live in Madison, in part because my brother Scotty lives in a home here. And I still love how he smiles when I sing songs to him.

I bet Lauren’s okay. It sounds like you guys are giving both of your kids a wonderful, loving, happy life. And Gavin’s getting closer to having a transplant every day! Thanks for all your updates.

Best regards,
Melissa Manske
(of explorejeffersoncounty.com)