Angel Luke’s Story

Hello from Sturgeon Bay, Wisconsin,

We are Luke, Barb, and Mike Madden. Luke is 4 1/2 years old and was diagnosed with hydranencephaly soon after birth. Barb and I were asked if we would like to adopt Luke. Luke's birth mom was very young and a former student of mine. We have been together since Luke was a few days old. The state of Wisconsin made the adoption process very long, complicated, and trying. Many people felt Luke would not live long, but he has proven to be a tough little boy.

Luke has a shunt, takes many pills, and is on the Ketogenic diet to control seizures. Wonderful therapists have helped us give our angel a better life. Doctors from Green Bay and Madison, Wisconsin have also been great. We have learned the most from fellow parents of hydranencephaly children and common sense. The neurosurgeon who put Luke's shunt in told us most doctors will never come across a patient like Luke during their career. We therefore have found we have to be more assertive and self taught.

Barb and my life, especially Barb's, has changed much because of Luke. Our hobbies, travel, and even friendships have gone through a metamorphosis. We feel very lucky and thankful to have our son. Even when the first two years was crying, crying, crying, we never regretted our adoption decision. Luke loves being held, being outside, and listening to voices and singing. I want to close this letter with the poem I sang over and over to Luke those first crying years.

Rest your head on my shoulder little buddy.
Close your eyes my special pal.
Go to sleep my little Lukey.
Things will be better after while.
Just hold me is all you ask,
Rock in the chair and sing a tune.
You don't expect much from this life,
Like the rest of us do.
Your place in heaven is secure.
You will be waiting there for us.
I can see you sitting on the lap of Jesus.
In that we can really trust.

Mike

Luke died peacefully on November 6, 2007 after not being well for several months.