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!
I think back now on being told what was wrong with him, and I do know I was told in a normal doctor’s room. But my memory shows me a TINY room no bigger than a 3’ by 3’ box. I remember feeling as if my chest had been ripped out and although I could not imagine the concept that my child was dying my heart knew. I was crying uncontrollably, the doctor said sorry but he ran out of words to say so he just left. The nurse came in I think to get me tissues however she seen me then walked back out. I still remember her face. And the car ride home, I had to drive, I don’t even remember it. It’s all a blur. But I do remember getting home and as I walked through the door, still crying nonstop saying to my mom, “he’s dying, my son is dying.” She finally got the story out of me, and then I went to his bed picked him up and stood in a corner in cried for hours. My world fell so into shambles that I didn’t know what to do. Overwhelmed was an understatement.
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. The Neuro- surgeon who was willing to do his surgery sat me down before the surgery and told me I needed to understand he wasn’t fixable, and that this would only ease the pain as he dies. He told me he might die due to this surgery I was about to put him in and if that was something I can live with. And although at this point I didn’t even know what a shunt was, heck I didn’t even know a child could be born with such problems as this. I did know he needed this surgery to help his pain, so I fought for it.
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. You’re constantly torn between two worlds. I almost was scared to love my own child because of the risk of him being taken away from me. Most days I didn’t know whether to celebrate his life with me or start saying goodbye. For months I couldn’t even watch him sleep because that is how he would look when he passes. It was a scary world that can really take a toll on a mother’s heart.
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 Mother’s day! (My first mother’s 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 3 months later he had the low profile GJ Button placed. No more major surgeries since. Now I am proud to say Sean is Five YEARS OLD. Each day is a miracle that I will never take for granted.
Sean remained relatively healthy till February 2011, he caught RSV that turned into Pneumonia twice. He fell asleep one day and didn’t wake up for a month. His body temp dropped below what a thermometer could read. I would put him in a super warm bath, almost hot then put him in clothes from dryer, then his snow suite then under a heating blanket. Just to get a temp to register. I was doing breathing treatments and Vest therapies every 30 mins to 60 mins 24/7. Our nurse and social worker continued to tell me it was time to let go and to start to plan funeral arrangements. I couldn’t accept it, just kept fighting, then one morning he just woke up. He still to this day hasn’t been the same. He gets sick often, pneumonia is like his common cold. His body temp still remains very low. His normal is about 94 degrees. We keep our house set at 70 degrees, and at night he sleeps under a heating blanket with winter hat and gloves on.
Sean now enjoys going to school during the spring and summer months. He loves music and books. He has a vision room which it this tiny room he lays in and it has high contrast toys and lights in it. His favorite thing in the world is Christmas bells. He is also a new big brother and he loves to listen to his brother’s noises. Sean is a typical boy who loves rough and tough play. He is happy, that’s what’s most important to me.
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 lose 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 their 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 Hydranencephaly 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.
Death does not discriminate, it does not see age, nor race. I have learned through Sean that simple pleasures are big ones, he has taught me to be present in the life I live. Every second has beauty that shouldn’t be taken for granted. For you never really know what it means to live, till you live your life like you are dying.