Dear all,
Gabriel is better than yesterday. He ran a bit of temperature last night. This morning, he was at 37C. We will continue to monitor his fever today. His runny nose is under control. His coughs are still ongoing, but small and occassional. He is on cough and cold medicine and sleeps a lot. This means that, tomorrow’s stem cells treatment will be postponed. He needs to be clear of fever for at least 48 hours before going for the spinal injection. I agreed with the doctor totally. I was worried that they would want to continue on with the injection. Phew! At the same time, I am now worried about our departure date from China. I hope we don’t need to postpone our flight home, which they assured me, highly unlikely, unless Gabriel fell sick again.
I found my brain this morning. It was churning with questions and then it worked out a pattern. Listen..
Here at the international ward, various nationalities live together on the same floor. There are only about 9-10 families. We are all vastly different, yet enormously similar. We all came, parents, caregivers and patients, for the same reason. We talked, consoled and learned from each other.
My optimism soared each time they told me how they had improved, the little changes they noticed with themselves. Every single one of them told me to keep faith in the stem cells. It worked for them. Crippled or blind. They were so confident that I will see the change. If not now, tomorrow, next month, not long. I looked at them, and listened to their achievements, big and small, at awe. Then I went back to our room, scrutinised Gabriel, wondered if I had missed something; then I saw something, or was I actually looking at nothing and fancied I saw something? And I saw so many, all very vague. When asked if I had seen any change in Gabriel, my answer was negative. I was glum and exasperated at the same time. But I am not alone. There are 2 other patients whose parents also didn’t see any change in their child after a few treatments. I looked at them and felt as hopeless as I imagined they would feel.
This morning, I had an enlightenment. I came to realise that those who said they had improved were those who can talk and who knew their body well. How stupid and blind I had been? All of those who had seen changes were those who can communicate! Well! Not Gabriel, of course! Not the other 2 toddlers who happened to be at the same age as Gabriel! They can’t talk!
May be, just, may be, there had been changes, so subtle, we didn’t see it. Fingers crossed. May be, may be…
I mentioned to my husband that Gabriel had been poking his eyes more than usual. That was right after the first treatment. He said, it was normal. It was his bad habit. He poked his eyes all the time, even before leaving for China. May be, I was reading too much into it… Furthermore, the doctor had shone light into his eyes when he was sedated a few days ago, his pupils didn’t respond at all.
I understood later from the other patients that, they had pain in their muscles for the ‘crippled’, funny feeling or pressure in their eyes for the ‘blind’. Each, the doctors told them, those were good news that the stem cells were working.
This morning, the mother of a visually impaired adult patient came to me. She and her daughter, Linda, had been a great help to me, in understanding the effect of the stem cells on her eyes. Since receiving the treatment, she can now see large objects. She said, “Linda didn’t have lights perception before. After a few surgeries, she finally can see lights. At that, the doctor shown a penlight into her eyes, and found that her pupils didn’t dilate at all. He concluded that she couldn’t see it.”
“But it wasn’t true! It was because she didn’t know WHAT TO SEE. Unlike us, the sighted people, she needed to be guided, to seek for the object, in order to see, to identify that penlight. She doesn’t see the easy way we do. She needs to find the object. To find it, she needs to know what to look for. When she managed to find it, her eyes focused on it, and her pupils started to dilate. Finding an object to focus on and then seeing it needs practice.”
“What the doc did to Gabriel when he was sleeping didn’t conclude anything! Do not give up hope!” Gabriel needed to be guided.
Well, as you can probably feel, she opened up something in me. Hope. I’m feeling it again. Patience. Not wait and see. Instead, more work with him… We are surrounded by angels.
OK. I admit. Hope is back again. Prepareness for the worse shouldn’t be forgotten. I also know that, there is a patient out there right now, whose parents are more dispirited than ever. After almost a year since receiving the stem cells treatment, their son’s condition didn’t improve at all.
Best regards,
Asty