Just last week, I was contacted by a patient I had cared for over a year ago. This person called me at work, in tears. She had remembered me telling her about Ryan, and was very upset to say that she was experiencing something quite similar with her son. He has a disease that will someday soon take his life, and she explained that many times she had wanted to pick up the phone and call me. She said "I never forgot you". And I hadn't forgotten her either. I remembered her with clarity, and that says a lot considering the hundreds of patients I have cared for since.
I am sad that I am the one she needs right now, and thankful that I have been put in her path to ease her pain in anyway that I can. She explained that her friends and family are eager to talk to her, and listen. But, she knew deep down, that they didn't understand. A feeling I have felt, more than I care to really share. A hurt so deep, that you somehow distance yourself from situations that highlight it that much more. I have avoided play dates and other social situations because of this feeling, and even left perfectly enjoyable events with friends & family in tears because no matter how much time goes by, I will always feel different in this way. It is strange being more comfortable around those who know my hurt, and know what it is like to either lose a child or care for a child with special needs. Those are my kind of people. There is an unspoken understanding. A gentleness in words spoken and celebration in accomplishments that to an ordinary parent, would seem small. We lift each other up, we share our frustrations in lingo that most parents don't have to use with words like "therapy" and "early childhood" and numerous medical terminologies that are used to describe in length what is "wrong" with our children.
A phrase I heard recently that made me want to sink into the chair I was sitting in was, "You know you are a parent when... " Fill in the blank any way you can imagine, but I sat there with hundreds of ways to complete that phrase that this person would never have spoken. I was angry at myself for becoming upset at their simple answer, and wanted to bolt out the door as fast as I could to avoid the awkward feeling in my stomach. This person should be happy about their fill in the blank phrase, as they were a new parent, learning the ropes we all learn. But I, as I have said, will always be different, and yes, filled the phrase much differently than they. My ropes course has taken the most challenging path, and therefore, will never be simple again.
So, I am here, for others on my course. For those of you on the beginner's level, I hope you stay there. But I am here, if you need me, praying that my course doesn't become even more challenging than it has already been.