I don’t know

I don’t know. I just don’t know.

People asking how we are doing.

And my answer is always I don’t know. Surviving.

I have no idea how I’m doing. How John is doing.

I really appreciate the people checking in but then I don’t know what to say and feel like a conversation killer. I can’t put into words how I am..how we are because there are none. Some days I feel like I’m not doing this right. Not that there is a right way. Although I guess if we through ourselves into drugs or something that would be the wrong way. We aren’t doing that. But, I just feel like I’m lost and not doing this thing called life after Noah right.

I feel like I spend a lot of my time in silence and avoiding. Well, once the kids are in bed. They keep us pretty busy during the day and I know I’m not at my best as a parent but I hope they will understand one day (if they don’t now) and always remember that even on these dark days our hearts are filled with love for them.

The hurt on my heart is too much.

I spend a lot of time still wondering how this is our life. How we are now here. Noah was healthy. He was never hospitalized for being sick. His only hospitalizations were to get his peg tube placed and then to get his MIC-key where we tacked on 2 more procedures. He didn’t have heart defects (any more…his ASD closed). He didn’t have kidney or lung issues or issues with any vital organs. His airway was finally stable. He didn’t have seizures. He was gaining weight and growing so well. Nothing showed abnormal on the autopsy. It’s just all left for us to wonder, what in the Hell happened? This is the hardest part for me. He was healthy as far as we and any of his multiple specialists could tell. Our Paed. called and talked to John shortly after and he couldn’t understand what happened either. He had just seen him days before. Dr H. was so worried and questioning what he missed. We told him nothing according to the autopsy but he was going to go over the records and files I’m sure. Everyone trying to make sense of this nightmare. Maybe one day some obscure part of CHARGE will be found that can explain these sudden deaths. Who knows. Until then we are left with the memories of our guy being his happy, healthy self going to sleep and not waking up taking a piece of my heart and soul forever.

Our youngest kids are grieving and I’m not even sure they realize that’s what they are doing. Oliver and Charlotte ask to watch “Minions” over and over and over again. It was one of Noah’s favourites. They never really cared for it before (and to be honest I couldn’t stand it) but now it’s the first thing they ask for. They have become obsessed. Oliver draws pictures and constructs things for Noah and leaves them out and about. He’s started sleeping with an alien in his bed. Noah’s huge blown up photo from the funeral is where he can see it. He was sleeping with it for a long time until Elijah asked for it to be moved so he could see it at night too. Charlotte gets down and talks with the photo when we are in the room dealing with laundry or whatever. She tells us Noah is in a certain spot on her ceiling. Same spot every day. She tells us she sees him. Elijah is trying to make sense of it all when all he knows is that his heart is shattered and he misses him more than someone at 8 should know. Every little thing that happens that he can’t explain or doesn’t understand, the answer is Noah. Rain=Noah crying. Doors blowing shut in the wind=must be Noah. Not falling when he stumbles=Noah saving him. He’s scared of forgetting, which I totally understand.

But yea, all this rambling to say I honestly don’t know how I am doing. I don’t know if I will ever know again. How can you be totally happy and content when you feel this obvious void and immense sadness at the same time? That feeling is never going to go away. I’ll always wonder and think “what would Noah be like now?” or “Noah really would have loved this” etc.

Memories are all we have now. Only 6 years of memories. It’s not enough. No one’s lifetime should be confined to 6 years.