A week and a half ago, a friend had a beautiful full-term baby boy who came to this world with a special challenge: diaphragmatic hernia. He has touched my heart because he has surprised everyone and is quickly recovering after undergoing surgery. Sometimes we underestimate kids and their potential. And these beautiful little creatures teach us a very important lesson in life: never give up! This little guy is no longer using life support and ate on his own today. He is a very special child who is making everyone that surrounds him appreciate life in a different way.
Today, when I went to drop Jonathan off at his new summer camp, I stared and analyzed all those special kids and their parents and how brave everyone is. This camp is very special. It is organized by a Christian church in the area and targets 100 kids with special needs and their siblings every year. What is special about it is that there are 150 volunteers working every day to give these wonderful and brake young kids a fun and unforgettable day. Each child is assigned one person. And their days are full of activities. Jonathan has had 3 very fun and full days. He is excited to go every morning.
As I watched the kids, one caught my eyes. A little girl who was laying down on the floor and seemed very unhappy. She was in front of us. Her mom did not look happy either. The child was about 6 years old, non-verbal. Jonathan was impatient as he wanted to go to his classroom. But we had to wait to get his name tag. I saw the girl and saw Jonathan. And I felt a nut in my throat thinking that even though Jonathan had this devastating disorder, all the hard work to make him get better, to detox him, all the therapies seem to be paying off because he seems like a happy child. He smiles all the time and the teachers like him because he is very sweet and loving and smart. Whether he officially loses the diagnosis or not is suddenly to me not as important as providing him with a high quality of life, to see him happy.
When I got home, he told me that he had a fun day at his new school. When I asked him "what did you do today" he thought hard and said "I don't know mommy". But Vanessa says the same, and many neuro-typical say the same thing, so I just smiled at him.
His language surprises me daily. I know that for parents of neuro-typical kids, some of the small remarks that I log daily in this blog might seem non-trivial. But for a child with this disability, small things are actually huge. Tonight we went to eat dinner at a small restaurant near our house. While at the restaurant he asked me if he could play Playstation. I told him that he could play for 15 minutes when we got home and then he had to get ready for bed. When we got home, he came to me and said "mommy, you said at the restaurant that I can play playstation 15 minutes, can I play now?". This is so huge. I told him yes.
Then, as I was getting him ready for bed, I told him that he could not drink apple juice anymore after he brushed his teeth because he is getting gum disease and we have to go see the dentist soon (I noticed that his gums are a bit swollen). And I pointed the gums to him. He got concerned. When it came time to brush his teeth he said: "mommy, I don't like gum disease". I told him that he had to brush in the morning and in the evening so he didn't get it. Then he said: "what can I drink to bed?" and I said that he could drink water after he brushed his teeth at night. So when we got to his room, he said: "mommy, can I have water with ice in a closed cup? I don't want apple juice. Apple juice is bad for teeth. " I had a huge smile in my face and I told him I would get him water right away. I got him the water and he said: "oh, thanks mom. Is gum disease going away now because I drink water?" and I told him that it would but we still had to see the doctor.
I took him to his bed, applied the suppository (EDTA chelation suppository 3 times a week) and said goodnight. He said: "where are you going mommy?" and I told him that I was going to clean the kitchen and then go to my bed. And he said: "tomorrow, when the sun comes up, I am going to your bed to sleep with you", which he does every day. But I loved hearing it.
To me having these types of rational conversations with Jonathan is simply incredible. I hope that this is the beginning. I hope that the next 40 HBOT dives make him better. From everything I read, the minimum should be 120 dives. But financially we can only afford 80 this year. We'll do the other 40 (or 80) next year. Chelation, methylation and HBOT are what is bringing Jonathan to this side of the world, are the key to his awakening.
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