He had such a difficult life and had been in and out of the hospital regularly since September. His shunt failed and was replaced 4 times over that span (or maybe it was 5? I lost count a long time ago) and he had a g-tube put in and then replaced as well. We thought for certain that we had gotten over the mountain so to speak since he was gaining weight and looking good after he got his g-tube, but apparently we were wrong. He was seen by his therapists and even his doctors just that week prior, even on that Saturday. But on Sunday morning he just stopped breathing. CPR was administered but apparently it took to long to revive him and the loss of oxygen was too much. His shunt malfunctioned AGAIN and was replaced and then he was put on a ventilator. On Sunday evening we learned that he was too far gone to recover. Perhaps we were naive, but not one of us walked into that hospital on Sunday morning thinking we were going to leave with out him.
On Monday my brother and his wife made the decision to let him go, but that they were going to donate his organs. So I watched as the doctors did their final tests to determine "brain death". I knew that we weren't going to see them take him off of the machines so I needed to be there in that instance to know in my heart that he was gone. For a while on sunday he was breathing over the vents, but that eventually stopped. During the tests they turned the vents off (but kept oxygen flowing) and I watched him not move for 5 solid minutes. At that point we were able to say our goodbyes.
During that period I took photos so that my brother and his wife could have some last memories with him together. I had hoped we'd get some with out the tubes, but that was before they decided on donation. Ayden's older brothers Alex (6) and Evan (5) had to be told of what was happening, and bless their hearts they took it better than I thought. Maybe it was because they're so young, and maybe so used to seeing him in the hospital. They asked a lot of questions and I'm glad I was given the opportunity to sit down with them and explain to them what was happening to Ayden. I told them that he'd be able to rest finally and not be in pain. They held his hand and gave him kisses and we were all able to just be together as a family letting go of our beautiful little boy.
Unfortunately we learned that in the wee hours of Tuesday morning, while in the process of trying to access which organs were viable, Ayden's heart completely stopped which stopped blood flow of course. I had really hoped that some other family could benefit from our tragedy, but I suppose it's just as well. We got to have all of him when we saw him last.
Friday morning was Ayden's visitation and funeral. I knew it would be hard, but I was surprisingly at peace seeing our little guy looking so peaceful. No tubes, no wires or monitors. Just his sweet face in a soft little blue outfit, snuggled up in a fleece blanket and his head covered by a soft blue hat that I crocheted for him. He was perfect, a little angel. It was hard not being able to just hold him.
Everyone loved on him and left tokens and we all talked and laughed about our good times. The boys helped me make a collage for him with drawings and photos. I made a second collage and put more photos in an album for everyone to look at. It was a bitter sweet day for certain. The hardest day of my entire life.
After the service we drove to the cemetery and had a small ceremony there. Most everyone left but a few of us stayed to visit other people who were buried there. When we drove to the back we realized that he was going to be laid to rest in between others who had gone before him. My mom's grandmother watched from the back in the mausoleums, both of my father's parents from one side in the military section, and my aunt's parents literally across the little pathway from him. So I feel better knowing where he is and who he is surrounded by. He even has a small tree right by his plot. One that I'm sure will bring him shade in the summer and beautiful colors to see in the fall.
Looking back I was honored to be able to be there for every milestone in his short life. I was there on the day he was born, one of the first people to hold him. I spent hours upon hours with him on every hospital visit. We celebrated his first Christmas and his first birthday at my apartment, he even had his first bite of ice cream with us. And of course I was able to be there in his final moments in the hospital and then again when they finally lowered him into the ground. All the good, all the bad and everything in between. What a thing to experience.
At this moment I feel like I did have some closure, but it still doesn't feel real. I feel like in a way that I am watching this happen to someone else. That perhaps one day I'll wake up and none of this will have happened. I'm able to fill my days with distractions; work, the computer, music and tv. But it is in the quiet moments before I fall asleep that I have most trouble. Everything is still and my thoughts instantly drift to him. I think of his smile, his laugh, his personality. And I just can't believe he is gone. Every single moment since he has left us has been agonizing and every time the realization creeps back into my thoughts that he's gone hits me like a brick to the face. I just wonder when it will stop hurting so bad?
I guess in the end I am lucky to have been able to love someone so completely. I loved him (and still love his brothers) more than I have every loved anyone in my entire life. And he gave to us so completely as well. He was not jaded or compromised in any way. Even in the hospital bed, covered head to toe with wires, he smiled. He was so strong and and so resilient, I just can't help but to be strengthened by that. I will always, always think of him when I think that life has beat me up too bad. Nothing in my life will ever be as hard as his struggles, except of course for losing him.
So now we carry on, right? That's the only thing one can do. I just hope that I will touch as many lives as our sweet baby Ayden did.
I will miss you and love you all of the rest of my days my sweet boy. I hope you aren't hurting and I hope that someone I love is loving you wherever you are. And I hope I will see you again.
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