The days following diagnosis day – for me – were stressful. While I was trying to live in the moment I had that constant nagging in the back of my head saying “is today going to be his last day”. This date no longer holds the same sting that it once did. Now that Kaleb is gone, we live with his absence in our lives and our hearts – at least then, we had his body to hold in our arms. His beautiful little face is forever etched into my memory and with every waking moment I see him. I can see his soft dirty blonde hair, those big brown eyes with the eyelashes to die for, that adorable little button nose and those full, puffy lips – I can even see the vein that formed a V at the top of his forehead. I see his face all the time, but what I wouldn’t give to be able to touch him, to hold him in my arms, kiss his little face and tell him again how much I love him. For me, diagnosis day was just a warm up for the most painful thing I would ever have to live through – living without him.
March 19, 2010, diagnosis day. Dave and I sat with Kaleb in our neurologist’s office as he confirmed the test results and Kaleb’s diagnosis of Sandhoff’s Disease. Nothing can prepare a parent to hear the words, no cure and fatal. The doctor didn’t know what else to say to us other than “I’m sorry”. We headed back to the car, put Kaleb in his car seat and stood by his door in the parking lot holding each other and crying. Learning that your child, who was at the time 18 months old, would likely not see his fourth birthday is unimaginable but to then learn how cruel Sandhoff’s Disease is – made it even worse. We knew that our once playful, vocal, little boy would ultimately become a prisoner of his body. That this disease would rob him of his voice, his ability to swallow, to move, see and hear – before it would ultimately stop his heart, this knowledge made the diagnosis that much more difficult. We lost so much on this day four years ago. We also learned a lot too – we learned that we are stronger than we thought possible, we learned to cherish each and every moment with him, we learned how to love more freely and not take one second for granted.
The days following diagnosis day – for me – were stressful. While I was trying to live in the moment I had that constant nagging in the back of my head saying “is today going to be his last day”. This date no longer holds the same sting that it once did. Now that Kaleb is gone, we live with his absence in our lives and our hearts – at least then, we had his body to hold in our arms. His beautiful little face is forever etched into my memory and with every waking moment I see him. I can see his soft dirty blonde hair, those big brown eyes with the eyelashes to die for, that adorable little button nose and those full, puffy lips – I can even see the vein that formed a V at the top of his forehead. I see his face all the time, but what I wouldn’t give to be able to touch him, to hold him in my arms, kiss his little face and tell him again how much I love him. For me, diagnosis day was just a warm up for the most painful thing I would ever have to live through – living without him.
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