I miss him.

[akellyf]

I lost my son almost two months ago... well, the truth is my son died almost two months ago, he isn't lost, he's gone. I have a lot of family and friends who both loved Michael and love me and I am not sure why I am coming onto this site. I already feel guilty about not being farther along the grieving process then I am and I feel badly about pulling friends and family back into a dark space when perhaps they are able to walk in the light. The truth is I've never been good about sharing my feelings and have always been the one everyone thinks is super woman while inside I struggle with the same demons that everyone else does. 

 

They told me that my son wouldn't live out the weekend, then the month, then take him home and love him he won't live out the year. Countless times it was "coming to the end" and countless times my amazing son pulled through thanks to incredible doctors and sometimes I think my sheer refusal for him to go. We didn't have the right diagnosis until he was 18 and when we finally realized what we thought he had was wrong, I struggled with wondering had we known if things could have gone better, less damage to his lungs, less sickness, but that road leads to craziness because we don't get do overs. We spent the next year preparing for a spinal surgery (his spine had twisted due to his right lung being weak and the twisting was pinching off the airway to that lung), and by preparing I mean building his weight up with IV feedings, putting him back on oxygen 24/7 which he'd been off since he was 6 unless he was really sick, trips every other week to a hospital a few hours away, until everything hinged on getting that surgery. His disease is Schwachmann Diamond Syndrome which is a very rare bone marrow failure syndrome--so he took shots every other day to force his bone marrow to produce white cells but his platelet line had also failed so the morning of surgery he needed platelets to put him at a "safer" place for surgery. SafER because there wasn't much safe about the surgery given his respiratory status but the alternative was to accept that treatment was over and move into "waiting" to die and after 19 years of fighting we weren't ready for that. His body reacted to the platelets by his lungs, already stressed, filling with fluids and we almost lost him and were told they couldn't do any more or they would be doing more harm then good... take him home, the next pneumonia will take him, 2 years tops. I went into a depression because I didn't know how to handle the shift from fighting to waiting, it was devastating to my psyche and I never really mastered it despite a year of therapy which helped but I don't think we as mothers are equipped to give up and wait for our children to die.

 

He surprised everyone, which isn't surprising in and of itself, and had four years of relative health, by relative I mean a gradual decline instead of the big bang like we waited around every corner for. He weathered some nasty colds like a champ and his weight held, always an issue and life settled into a routine again. Yes he was on oxygen 24/7, yes he was on a lot of pain meds for the spine twisting and pinching, yes he was in a wheel chair if he had to walk far but he was Michael and he was persevering. He got a cold in December, we all did and once again he was coming out of it, had gone to the doctor and all was well, had said the night before he thought he'd finally shaken in, but when I woke up the next morning he was clearly in distress on breathing. We'd done this routine a thousand times before the last 23.5 years.... slam him with steroids and antibiotics, up his breathing treatments, another cold down. But as the day progressed something was different and we ended up in the ER, a place we have rarely been as he normally went straight to his specialists but it was evening and clearly he couldn't wait. By 2am in the ICU when we reinforced the decision we had made years ago to not have him intubated (a fair easier decision to make when it's a "what if" not an in your face decision) we started to fear something was really wrong. But even when they said to have people that would want to be there come in the morning "in case, but we are going to do everything short of intubating), I still didn't really believe it, we'd called everyone in for the big good byes before and he always came through. He died at 7:15pm on December 13, 2013 and I was shocked and I was devastated and I who despised hysterics or crying in public went hysterical.

 

People, trying to be comforting, kept saying to me, well at least it was expected, that must make it easier. I would just look at them blankly and say if it was so much easier and if it was so expected, why do I feel like I have been hit by a freight train? I had no idea that week he would die, I had no idea that day he would die. He was up and talking and watching movies and playing video games the night before and now he was dead. They said he would live out the weekend when he was born and I had him for 23.5 years and I suppose I am supposed to be thankful for that but the truth is 23 years is not enough, you are not suppose to out live your children. My entire adult life has been around keeping him healthy and safe and I failed.

 

There are no real words for how devastating it is to lose your child, the pain is excruciating and I am tired beyond measure and I am lonely in a way that people can't fill.

 

He was amazing and creative and strong despite his physical weakness and the world is worse off without him in it, here is the photo video we made for his funeral. 

 

 

 

 

[ericasmom]

Please come to Loss of Adult Child, I am so moved by your strength and ability to put into words the ache of your lonely heart. we are a very talkative and large group, and we have all lost an adult child. My girl was 19 when she died 10.5 years ago. My hand is out to you...

[ericasmom]

Your Sweet Boy has the most beautiful eyes ever! He shines your love everywhere he goes. I love the video, I am crying. The music was perfect.

I send you hope.

[wgreenlee]

Kelly...

I echo Dee's sentiments.  I was very moved by your beautiful son's story, and the bond you shared.  You are strong, but this is hard.  I hope you can share more with us, as we will with you.  Together, we can navigate this journey together.  No amount of years is enough for the love we give and receive from our children.  This is a pain you can never be prepared for, but this is a good site to begin.  Prayers to you!