It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost. But very few know the pain of grieving a child you have not lost but know you will.
I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to hear the sweet whisper of his voice. I get to have wonderful conversations with him. Yet, I still mourn the little boy who used to scream at his father, sister and myself; or sing with us. I grieve for the little boy who played in the sprinkler, who swam in the bathtub during his "playtime". I grieve for his gross and fine motor skills he has lost...no more walking or sitting and sliding around the house; no more cutting paper up into tiny pieces - what I would give to have to clean up many tiny pieces of paper from the floor. Now I can only dream about what his voice would sound like as he ages, what games he would enjoy playing, would he be a good athlete; the part of him that will never be. And I feel the loss and pain of that.
I grieve for all the milestones I have missed and will never have with him. I think about how much others might take for granted. Their children going off to school every morning, coming home to tell mom or dad about their day. We haven't experienced things others take for granted and that I believe should be part of childhood. There is a loss and a sadness for times that might been but will never be.
There is sadness that he cannot do things with his twin sister. Pain relying on others to tell me about his day/night when I should hear it from him. There is a lump in my throat when people ask what he wants for his birthday or Hanukkah -- there are not many things he likes to do anymore. There is pain seeing the frustration in his eyes when others must play for him - it's just not the same as playing yourself.
He is here, but in many ways he isn't.
I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about.
As I sat on my bed, the tears came easily -- tears of heartache and anger, tears of frustration and pain.
It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.
So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.
But sometimes those tears are needed. Bear with me as I grieve for a child I haven't lost, but know one day I will.