Note: This article first appeared in A Different Path newsletter in 2002. It is one of my favorite pieces because it speaks to the challenges of grief when it is not as clear cut as sadness from an actual death. Loss is tricky...

Recently, as I sorted the regular pieces of mail with its usual mixture of bills, catalogs and credit card offers, I was caught off-guard by an application from the town sports league inviting my 11 year old son to join a youth basketball team.

Sometimes when things like this happen I can just shrug them off, understanding that his name was just on a list like all the 5th grade boys in town. But other times it knocks me over. And the awareness that he is so not like other 5th grade boys brings me to tears.

The concept of grief is not as clear as it once seemed to me. Once upon a time I figured that it was what you experienced when someone you cared about died. But having a child with severe disabilities makes the potential for grief a daily possibility as we are continuously reminded of what will never be.

I could grieve constantly.

I could cry from the overwhelming emotions that consume my heart when the mother of a 3 year old complains about toilet-training - a complaint I would give a huge sum for. I could fall apart from the ignorant stares and the ignorant comments of blissfully ignorant strangers - and friends - and family. I could really torture myself at Halloween by bringing him treat-or-treating and crumbling as yet another awkward homeowner waits for him to offer his basket - smile with the facade that he just might - knowing deep down that he never will - (and by the way he can't even chew your candy anyway). I could easily grieve at the growing awareness that old friends don't invite us over any more as their lives have grown up with their ever-developing typical children.

I could grieve most of the time - but I don't. In the last 11 years, I have learned to hide my grief as much as possible. It turns out that grief scares people - myself included. Of course the downside is that people - myself included - think that I am stronger than I am and don't always offer support - or in my case, ask for it. It's a real catch-22.

I have found a need to protect myself from grief. When your live with loss on a daily basis, it is mostly a draining and futile endeavor. Being on guard is an essential survival strategy - most of the time. Without this ability to shut down my grief it could easily consume me. I have seen it consume others. Anger, resentment, self-pity - all of these can take hold if grief is not contained. So I work to contain it. But sometimes it slips out anyway. Usually among the seemingly mundane tasks of life - like opening the mail.

Besides this life lesson, I have also learned something as equally important to my survival. The other truth is that there must be times when my grief takes me over. It is essential that sometimes I let down my guard and acknowledge and contemplate the loss - in our case the loss of a perfectly healthy baby boy that never got born and will never play basketball or most of the other things that healthy boys do.

Sometimes this is done privately. Sometimes it helps to have a friend. Generous people ask me, ‘Can I help?’ But the truth is that unless they come to my house and physically give me a hand, they are pretty much on the sidelines of our circumstances.

However, on occasion, if they are the right person (strong and quiet are requirements) and they are there at the right time - there is something extremely valuable that they can do. They can hold me up while I put down my guard and grieve.

Only certain people can do this well. Some people feel the need to try to make it better, or point out how lucky I really am, or try to convince me that my life will get easier. Some people talk of God's plan which - while that may help some people - does not help me. Some people end up needing ME to make THEM feel better about MY life. They can't handle MY reality - so I let them off the hook and put the guard back up.

But when I find that strong person and they offer to shoulder the weight for a minute, I am truly appreciative. There I stand - grief exposed, heaving, crying, raging, maybe a quick wallow in self-pity - as I rail against a letter that came in the mail, and, just for a few minutes, I indulge my grief.

Curiously, usually, before I know it, I'm done. I acknowledge that it was just a mistake, that this ignorant, mundane letter did not know that it would hurt me so. The guard goes back up and to all the world I look like a normal person again - for now...

Over the years, I have learned that there will always be mundane moments that catch me. Because you can't ignore grief all the time. But I know that I can survive these moments. The truth is that a lot of my life is pervaded by joy. Not just because I don't allow grief to consume me but because sometimes I let it do just that. And somehow - in that dance of grief and ungrief - I find a way to carry on.