For him. For us.

My boy was supposed to play hockey. I have said these words in my head a million times and every, single time, I cry quiet tears. I have never said them aloud or written them( and now everything is all teary blurry). You see, my boy was supposed to play soccer, be tall and strong like his dad, wrestle with his friends, play tackle football in our yard , ride roller coasters , just be a boy . Mostly, he was supposed to play hockey.
It's stupid. The little things we think of when we are expecting a child. We spend time on picking bedding, painting, shopping, selecting the perfect name and thinking about what this child will do. We assume. Sometimes wrongly.
Skippy is what Rob called him before he was born (and sometimes still does). And, in my mind, Skippy was going to play hockey. The smell of the ice (and stinky gear), the sound of the stick, the thud of the puck, the cold air ...all of it was part of what I saw when I thought about my boy.
None of that is possible for him. Half and heart plus blood thinners equals no hockey.
But hockey is just what my wacky brain leeches onto when I feel a sense of loss in regards to Hayd. It's really so much more than hockey that I mourn . I mourn the loss of a heart healthy child. The loss of what could have and should have been. For him. For us.
You see, I don't recall ever really being angry about Hayden's diagnosis . I've been sad, fearful , terrified, nervous, nauseous, frustrated, nervous, nauseous (those two happen a lot), hopeful, thankful and optimistic. There have been really brief periods of time where I felt like it was unfair , but would it be fair for another family? No. No one should have to experience this. No point in going there, so I don't .Many of these emotions are fleeting.
But the mourning, that never, ever goes away. There are times that it dominates my thoughts and times that it lingers deep, deep in the background. But it is always there .
Please understand that I know how blessed we are to have Hayden. He is here with us and my heart really does belong to him.  And I could list all of the things he has done and does to amaze me. But I mourn the loss of the normalcy. For him. For us.
He talks about college and marriage and I say all the right things while my mind races, praying he sees those milestones. I mourn the loss of being able to plan for the future .For him. For us.
We celebrate the hell out of milestones because each one we reach is a gift we don't expect to receive. I both love and hate that. I love that we celebrate, but hate that we celebrate reaching a milestone like making to to 4th grade. It should just be a given, but it's not .
Hayden has amazing friends . They are kind, funny, bright, athletes. Yep, my boy is a sports nut and his friends are all athletes . We sometimes go to their games and Hayden cheers them on. I mourn the loss of him never getting to be a part of a team and us not getting to cheer him on (although I did recently scream and cheer at the bottom of a ski slope as I watched him finish an awesome run... I am a total embarrassment to him;). This is the one and only wish he has ever expressed in regards to his heart...to be able to play sports with his friends. ( Not to have a healthy heart or not to take needs or not see doctors or not have his blood tested at our kitchen table...) To be on a team with his friends.  I mourn the loss of that . For him. For us. But mostly for him.
I've been at this for ten and a half years. There are many things about it that have gotten so much easier. There are things I forget about and things that don't phase me. Then there are things that wack me right across the face and knock me for a loop. They are unexpected, but usually normal day to day  kid things. Things my kid can't do because he isn't a " normal day to day" kinda kid. He has so much and gives so much and I truly am grateful for all that we do have. But I think I will forever remain a mom in mourning . For him. For us.