Wishing Happy 1st Birthday to Michael B.

[Michael's mom]

Thanks, Jackie!!! Anyone who wishes to come by, is certainly welcome. For those who cannot, I wanted to share with you Michael's birth story and an update. One year ago on the 27th of April, I gave birth to Michael Benjamin. He was a full term baby weighing 8 lbs 14 ounces. My husband delivered him and layed him on my stomach. The midwife immediately swept him away and called for the NICU perinatologist. Within 2 minutes he was intubated and taken away. I was told - he's okay, he's fine - but having a totally unmedicated birth, I was completely sober and wanted to see my baby. They wheeled me into the NICU so that I could see my baby before they evacuated him to a larger hospital 60 miles away. My husband stayed with the baby, and I was left all alone. Laying in the bed hearing the other babies cry in the rooms next door was like knives piercing my heart. It would be 11 days until I could hold my baby. I went home and passed the nursery - the beautifully decorated nursery that still is empty. We spent 9 weeks in the NICU and another 6 in a chronic care facility seeing every specialist that could be charged. We had pulmonologists, neurologists, cardiologists, geneticists, therapists, ENTs, you name it, we had it. Our beautiful baby boy was poked and tested to find no diagnosis. We know that he does have hypotonia- severe at birth, he didn't kick, he just layed there. He cannot breath on his own. At first requiring oxygen 24 hours a day, now he requires a vent (life support) only when sleeping, but has to have a trach in his throat. The trach doesn't allow Michael to speak. Through the year I have felt hopeful, believing in miracles, helpless, believing in nothing but death, and I have survived - and MICHAEL has survived - the highest highs, and the lowest of lows. We have held his lifeless, blue body in our arms while he loses his bowels and life is sucked out of him, pumped air into his lifeless body until he would open his eyes and we all cried together, over and over and over. I can say one thing - we have LIVED this year. We have felt life and we know how very precious and fragile every human is. And so, on Saturday, we celebrate this life...this wonderful and miraculous life that has been given to us. And I thank each of you who have ever read or responded to my messages over the year. You are my lifeline, my hope, my encouragement, my friends. Thanks for sharing Michael with me. Michael, 4/27/01, 22 lbs 10 ounces, finally sitting and breathing during the day.

[Gretchen(Celia's mom)]

HAPPY B-DAY MICHAEL!!!!! What a year you've had!! Sue, you are an awsome mom to have stayed so strong and brought your son to this point!!!! You will only enjoy and cherish more b-day's with Michael every year. This is just the 1st of many to come!!! Happy happy b-day!!!!! Gretchen

[Michael's mom]

We had an AWESOME birthday party! To all of you who feel all alone, I would like to suggest you host a party and invite other kids with trachs or special needs. I can't tell you how good I felt. I didn't feel awkward or like I had to shield Michael from stares or anything like that. For once, I felt like a normal mom with a normal baby! I have asked my county's EIG if there are local moms with trached kids, but there are none. So a great big thank you to Jackie and Susan who travelled about an hour to see us! Your friendship is forever imprinted on my heart. Sue