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Tuesday, September 02, 2008

The tears finally came

The first week of kindergarten came to an end and my tears finally flowed. And it wasn't in any way I could have anticipated. It has nothing to do with R growing up. It has nothing to do with letting my first born out of my sight. It has nothing to do with an inability to let go.

We were enjoying the summer concert series in our local park. The weather was perfect. The park was packed, and the area in front of the stage was filled with kids dancing around, jumping, and riding their bikes. Two girls came up to R while we swayed to the music. His face lit up as soon as he recognized them from school. He was making friends and was so proud to tell me that they were in his class.

The blonde girl with curls leaned over and touched R's shoulder and said playfully, "chase me Riley." With that command, she and the other schoolmate ran off as fast as two healthy five year olds run. R smiled a goofy smile and started out after them. Only his body wouldn't cooperate. He trotted awkwardly. He wanted desperately to run after them. To chase them. To catch them and continue the game. His face was full of frustration and there was nothing I could do to help him make his body move faster. To be more agile. To be more energetic. To be more normal. To be healthy.

That is when the tears came. They stung my cheeks. They stung my heart.

I desperately wanted to scoop him up and tell him everything was going to be okay. But all I could do was watch him struggle and curse the rotten heart he was born with. I ached in a helpless way I haven't felt since he was in the hospital and consumed with pain after one of his surgeries. Only at the park, there was no fentenol or morphine to remedy the situation. After a minute of trying to catch them, he stopped with exhaustion and sat down on the pavement. That is when I went to him. With exasperation in his voice, he said: "I just can't go anymore."

His words reminded me of how I have felt many times during this journey. There have been many times when I felt I couldn't go anymore. But somehow, I just kept going. I kept finding a way to get out of bed. I kept finding a way to drive myself to and from the hospital. And I continue to find ways to get past all the what-ifs and I try to not think too much about what is to come. I just keep going. As we sat on the ground, I hugged him. And then I said that when he was ready, he could get up and try again--if he wanted to.

On second thought, maybe my tears at the park were about R growing up and my inability to let go. I'm so afraid of the struggles he will face. The physical challenges. The teasing. His frustrations. I can't help but worry about how the world will treat him. But while I'm affected by all the experiences he will have as a result of his health problems, this is his journey. And being different and slower and more tired is a reality for him. I cannot protect him. I cannot shelter him. Nor can I filter the feelings that go along with all of that.

School starts a new phase for him academically and physically. It is certainly something I had anticipated. But it was only all in theory, sort of the way you imagine what it will be like having a newborn. But until you're in it, you don't really know. And like having a newborn, it's going to be harder than I imagined.


  1. What a sweet (bittersweet?) post. You made tears come for me too....

  2. Your post brought tears to my eyes. I understand first-hand what you're going through. My tears on Cassidy's first day of kindergarten a couple of weeks ago were more from watching her struggle on the playground, with writing, with scissors, etc than "letting her go"....It is so unfair that, after all these kids have already been through, that school will also have extra challenges attached to it. My heart is with you. We have to remember that our kids DO have something unique to offer up to those around them. We just have to hope that our kids are surrounded by people that appreciate them for their own unique selves. Please call if you want to vent!! love, Gwynne

  3. You sure are a gifted writer and I could picture it all as if I were sitting there with all of you. We have cried here also for R and for you and for all of us who love him. Grammy Peg and Wayne

  4. Damn -- I have been trying so hard to avoid crying so as not to make my ongoing migraine worse, and there you go and break my heart! No child should have to go through what R. goes through, but I am so glad he has you there to be his cheerleader. It will never make everything all right, but I am sure it has already gone a long way toward making him the strong and resilient kid he is.