I have often wondered how Alex's condition would change with time, or if we would discover more issues along the way. Well, after a visit to the Optometrist in Ensenada I now know more about his eyes and the problems he could potentially develop.
The reason I thought to have them checked was a program I had seen about two girls who had a different type of Ichthyosis, where one of them had actually lost her sight, and I wondered if the same could happen to Alex. I also realized that every picture of other children I have seen who have Ichthyosis have glasses. So I had his eyes checked, and we found out exactly what I had been afraid of - Alex is not getting nearly enough moisture into his eyes, which can potentially lead to irreparable damage and eventually blindness. He also will need perscription glasses, and when he is older (between 8 and 10) he will need a surgery to correct his lower eyelids. Needless to say, I was somewhat unnerved yet relieved we are finding out now and not when it is too late.
Alex now has a longer regimen of care mornings and evenings and even throughout the day, including drops every 2 hours, eye gel at night, cream on his skin at least twice a day, medicated cream on his feet, and oil in his ears. Putting baby oil in his ears prevents skin buildup on his ear drums, which has been a real problem lately and was actually the reason we were in Ensenada in the first place, visiting the Otolaryngologist.
Leaving the doctors office I was on the verge of tears, wondering what else I was missing and wondering if he was going to be ok. We stopped at Walmart to pick up some cotton, something to clean out his eyes with and some more drops. It was then that I remembered that even though he would always have all of these challenges and struggles he would still have an amazing life if he continued to take joy in the small things and have a great attitude of thankfulness. What reminded me of this? His discovery of a hot air hand dryer in the bathroom. He was absolutely delighted and laughing like crazy and I thought, when is the last time I laughed about something like a hand dryer?
Every day there are gifts everywhere, things that I could enjoy, that I skip right over while worrying about things I have no control over - like problems I haven't thought of yet, or whether or not there will be enough sun today to get us electricity or to dry my laundry, or whether or not the kids are going to be ok, if they are going to do well in school, if they will find work and their life after our house, and on and on. Some days seem so hard, and I bring way more responsibility than I really need, or in reality deserve, on myself. Every time I start to feel like this - overwhelmed with the job ahead - I try to remember that all I have guaranteed is today: right now. This moment. Will I enjoy it?
How could I not? :)