On December 11, 2006 was the day I found out Sean was coming! What a Christmas miracle. And at 5:28 p.m. he was born. All ten fingers and all ten toes, just how every mother dreams. He was what had seemed to be “normal”. We were sent home on December 13, 2006! What an amazing day. Then as time went on at home Sean had seemed to very fussy! Something wasn’t right. And his eye was acting up. He had an infection that he could not fight. So on Christmas Eve I took him into the ER to see what was wrong. They gave him meds, said he was fine other than that eye and sent us home. Little did I know this was the beginning to many doctors’ visits.

But as time went on with Sean things were getting worse. Nothing seemed to be getting better. His eye was continuing to act up. His head had started to swell. Just at the soft spot, then went to the front of his head. The doctors had said they would do a CT scan and he would probably have to do surgery to let the fluid out. AT WORST! This is a day I will never forget!

 We went in for the CT. Everything went smoothly, but our doctor hesitated to give us the verdict. He sent us home said he would get another doctor to look at it and he would call us. To be honest I wasn’t that worried.  A few hours later I was called in to the office and this is the day that would change my life forever. I found out Sean had a condition called Hydranencephaly. I was told there was nothing they could do to help. And Sean would die before he was 3 months. And the life he would have wouldn’t be worth living. He would remain in a “veggie state”. I was sent home with nothing more than a good luck and see ya later!

He would need a shunt. But finding a doctor to do it would be half the battle. We traveled to see numerous doctors all over the Tri-State area. We found a willing doctor about 8 hours from we live. He had a shunt 3 days later after we learned his condition.

He was a changed boy after this shunt surgery. More aware of EVERYTHING! For the next three months it was hard, but very joyous. Bittersweet if you will. I was always at the thoughts that every sneeze would lead to something worse. Or every cough would lead to the end. And trying to live like this and enjoy him. It was hard.

When Sean was just over 4 months we were sent into an ambulance to the hospital. Sean’s shunt had stopped working! When we got to the hospital it was blood test. Calling doctors… A few hours after waiting Sean went off into surgery. Now I was sure I was never going to see him again! 3 hours later... Out came Sean. Breathing and crying. Just how I liked him! >sigh< We were told we would have to stay there for a week, since Sean had such a hard time out of surgery. In this visit that took a MONTH! He caught thrush very badly. Then caught Rotavirus the day after they took out the IV. Then one morning Sean FORGOT how to eat. He received a NG tube. And we were sent home for Mothers day! (My first mothers day!)

The next week back to the hospital for his very own GJ peg. This went like a breeze; Sean was a trooper at surgeries at this point! And then 6 months later he had the low profile GJ Button placed. No more major surgeries since. Now I am proud to say Sean is ONE YEARS OLD.  Another grateful day that I will never take for granted. Sean is one, and all the doctors said this was a day I WOULD never be able to have. A day that I should never look forward to.

But now I know Sean isn’t confined to a text book description of how a Hydran baby should be. He is a baby with Hydran learning to live. He is happy and he loves his family dearly. I know his condition is unchanged and I could loose him at any moment in the day. But he is a FIGHTER, he urns to live and to love. I feel all mothers should live there life as if it was the last with there child. You would learn to take nothing for granted. Every smirk, laugh, look, touch, cry, smell, kick, whimper, blink would seem like a miracle each time. The bond you have with a child with Hydran will always remain UNREPLACEABLE and UNEXPLAINABLE. And each moment Sean tries to talk to me, and looks my way. My heart swells with happiness. That is nothing anyone should take for granted.

“There is two ways to live your life. One is as though nothing is a miracle.  The other as EVERYTHING is.”   ~Albert Einstein

Here is the link to Sean saying ma! http://www.youtube.com/watch?v=rMcKHjL22EA

"Life is not measured by how many breaths you take, but by the moments that take your breath away."