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(Childrens Hospital - July 5, 1998)

"So much has been given to me; I have no time to ponder that which has been denied."
                                                                       Helen Keller


This is the story about the end of Jack’s time here on earth.  I write what happened here for two reasons--one, because it helps to put down on paper what actually happened.  It's not something that's talked about often, and the exercise of writing it makes us deal with what really happened.   The second reason I write it, is so when people read it they can think to themselves that no baby, or family, should ever have to go through this again.   Maybe, this will prompt us to think of ways that we can make SMA just a bad memory.   There are so many ways to help.  Many of us are regular United Way donors.   You can write in Families of SMA as your organization of choice.  You can also participate in FSMA sponsored 5K runs, or fundraising activites.  There is only one way this will end, and that is with research and clinical trials.  Unfortunately, these things take money.  So, if you're going to give anyway, consider giving to this cause.  I know one family that would certainly appreciate it. 

Jack's condition declined rather quickly.  One day we found ourselves rushing him to the hospital because he was turning blue.  He had experienced bad days before, but this time it was different.  When we got to the hospital and they laid his little body on the table under all those bright lights, it became obvious just how bad it was. He was so lifeless. He was put on a respirator because he couldn’t breathe on his own, and moved up to pediatric ICU.

We made a decision that night to wait until Jack was out of ICU before we would let Matthew visit him. We didn’t want Matthew to see Jack with the tube down his throat. After several days we had to rethink that decision.   We realized that perhaps if Matthew would see Jack again, it would be with that tube in his throat, because unfortunately it seemed to be the only thing keeping him alive.  One of the nurses told us that with children, sometimes the fear of the unknown was worse than the truth.  So we brought Matthew in.  It was the right decision -- for everyone. The nurse was right. Matthew didn’t care about all the machines and tubes, and Jack was so happy to see him. Matthew told me after his visit with Jack "Mommy, I was beginning to think Jack wasn’t really there." It never occurred to me that he questioned whether Jack was still around. After that, Matthew visited Jack every day.

After almost a week in the hospital Jack was still on the ventilator, but everyone involved felt it was time to try to transition him to a negative pressure ventilator (iron lung). Our hope was that he could eventually just sleep in it at night. There had been some recent success with iron lungs for kids with SMA and it seemed to be our only chance of getting him off the ventilator. The iron lung can be frightening to look at, but to us, it was better than the tube sticking down his throat.

Unfortunately, the iron lung didn’t really do the job for Jack. He held his own in the iron lung for about 12 hours, but couldn't go anymore  The tube had to go back in.  After the first transition attempt failed, we knew we had to make a choice before we tried it again. If he couldn’t successfully breathe in the iron lung, would we choose to let him go, or would we have them put the tube back in? With each day that went by, any ability he had to breathe without the ventilator was fading. Chances were if he couldn’t breathe without it then, he never would.

I can’t describe the agony of that decision. It was the one decision I believe Mark and I prayed we somehow wouldn't have to make.   Knowing Jack was going to die was hard enough, I really didn't want to have to decide when it would happen.  But here we were, faced with that horrible choice -- if you can really call it that.  If we left him on the ventilator, he could stay in the hospital and live for a while -- how long, we really couldn't know.  If we chose to remove the ventilator, chances were he would die within hours.  Without going into all the details of each choice, I can only say it was the most difficult decision of our lives.

We made our decision and got ready for the second attempt.  It quickly became obvious that it wasn't going to work. He just couldn’t do it. He was tired and he was scared. I couldn't believe this was happening.  We were going to have to make that choice after all.  I kept thinking he would somehow start making a miraculous recovery and pull through it.   But, he had really had enough and I could see it in his face. The pain of watching him that way was unbearable. I just wanted to hold him and make it all okay, unfortunately, there was only one way left for it to be okay. If he was going to die, I wanted him to be as comfortable and secure as he could be and I knew the only place for that was in my arms.

The iron lung was taken out of the room. The alarms were going off and people were crying. Everyone had  this horrible look on their faces.   They were pulling for him too, and they could see what was happening.  I can’t describe the look on Jack's face as this was all taking place, but I’ll always remember it. I just felt like he wanted all of this to be over and he was looking to me to make that happen. We told them we wanted to hold him.  Our doctor supported us. When they handed him to me I sobbed because I knew what it meant.  My baby was going to die tonight.  For two months since his diagnosis, we lived with the knowledge that he would die, probably before he was two years old, but it had come down to this one moment--and I wasn't ready for it.

For four hours I held him in my arms and rocked him.   I tried to absorb everything about him – his smell, his taste, how his skin felt, the silky feeling of his beautiful blonde hair - because I knew the day would come when I would long to remember it all. I had done this same thing so many times since we learned his diagnosis, but this time was different - I knew it would be my last chance.  At 12:15 a.m. Jack died.

I used to worry about how it would feel to hold my dead child in my arms. But once he was gone, I could see that Jack was no longer in this body. We could see that Jack was gone and that this body had simply been a vehicle to use while he was here. We knew he had moved on – and moved on to a better place.

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