Diagnosis day was hands-down the single worst day of our lives. The shock, the pain, and the grief we experienced that day was all consuming. And those feelings were even more acute because it was our child, the one we created, nourished, and bore. The one we cared for from the day he was born, stayed up with at night, cried with, and smiled with.
In an instant, our life stopped, all of our plans got put on hold, all the things we thought were important suddenly weren’t. We’d imagined our life with a healthy toddler, one who could sit up, eat by himself, and sleep through the night. Taking care of a child who couldn’t do any of these things and eventually wouldn’t be able to move, swallow, or breathe became a crushing reality and incredible responsibility. Every cry became a concern, every cough a sign of pneumonia, and every twitch a sign of seizures. Meanwhile, every stranger walking down our street carelessly held a healthy baby.
You might think our first reaction would have been one of disbelief, but we knew Ethan wasn't thriving like the girls did at his age. Instead, my first thought was how would I be able to mother a dying child? For days, I could barely hold him, not wanting to associate the overwhelming feelings I had with this tiny baby, his soft cheeks, his blue eyes.
As time wore on and the shock wore off, I began to see what actually was – I was mothering a living child, one whose life might be short but who was just as deserving of love and compassion as anyone. I knew I would have to endure his decline and death, but not on that day. In fact, I realized that upon diagnosis, Ethan hadn’t changed one bit. Only my perception of him, my understanding of his condition, his future, changed. So I changed my expectations - my hope for him was no longer to grow up big and strong like our other children but to stay comfortable and have safe passage when the time came. And in the end my sole remaining hope is that our love for him made his a good life!
His love for us certainly made our lives more enduring and meaningful! I miss him dearly, every day, every second.