That quickly changed when Oliver started having another episode of extreme pain.The 3rd episode in 7 days. It start off with unprovoked fussiness, just a little whining, so we changed his position, we tried to distract him with toys, we hugged him, cuddled him, kissed him, rocked him, patted his back, rubbed his hands and feet, sang silly songs to him, massaged his tight muscles, we gave his initial doses of diazepam and morphine. Nothing helped. He had another seizure and it only got worse. His arms started spasming and tightening towards his body. The screaming became so loud, his pain must have been unbearable. To hear our child in such pain, words can't describe. They can't. It's like a type of torture.
I held him tightly in my arms, I rocked and kissed him, my own tears fell onto soft baby hair. I wanted so badly to take away him pain, I wanted so badly for him to be at peace. I am so sorry Oliver. I'm failing you. It's become my only job as your mother to protect you from pain and fear and to keep you comfortable and happy. That's all I've ever asked for. I haven't asked for a cure, that's years or decades away. I haven't asked for a miracle, your DNA isn't going to suddenly create the enzyme you are missing. I haven't asked for anything but your comfort and I'm failing at that and I am so so sorry.
Dose 2, dose 3, dose 4. Why is nothing working? Why is he still suffering? Now he's sitting with Daddy and has an oxygen tube up is little nose. After hours now, and tons of medicine, he's starting to calm down, but his arms are still spasming. This has been a terrible week.