The unknown of the future and re: Dawn

[Guest guest]

Wow Darla,

Your son is so special. It gave me the chills (in a good way) when you said he kissed you every night before bed! I know how difficult showing affection can be for some boys - he sounds so special and positive and affirming.

What great parents you are!

Anne R

[Guest guest]

I am worried for him but also know that Mito comes in many severities. I see my girls, myself, and others on this list, and know that there are many different severities that show forth. I try to communicate to Luke that he should live his life as normal as possible, but to also not overdue it. He wants to play football this fall and we may let him try it, but have warned him that if it makes him start to go downhill, we may need to pull him from the team. He does dance and exerts tons of energy to do so, but the past few years we have noticed a pattern of exhaustion and hypoglycemia following his tumbling especially. He puts so much effort into his dancing and come out shaking like a leaf. His response is, "Oh, I always do this. Just thought it was normal." He said the same thing about being blind looking upwards, temperature issues, etc. We always feed him quickly and get him something to drink, and this seems to help some. When allowed, he will sleep until the afternoon as well. Yesterday I woke him up at 12:30 PM because I needed to go somewhere and needed to communicate with him. I have been wondering when he would have woke up if left unattended. ANYWAY... I hope he will not be as affected as the girls and assume that will be the case. I know it is unpredictable, but many times, the older you begin to exhibit symptoms, the less severe the case. (I know this isn't always the case, so not fooling myself, but hopeful...) He actually says he isn't afraid because according to him, "If it's my time, it's my time and then I will be able to be with Jesus even sooner." He has a very strong faith and is feeling led into missionary work so for him to say this is not a surprise. He wants to live, but knows the joy of being with his saviour is even better. He talks about death on the mission field with me frequently and seems unusually prepared for the unknown in his life. Of course, I want him to soar and live long and be preductive, have children/grandchildren, and be healthy. He is such a tender, loving son. This past week he has started giving me a kiss and hug before bedtime (first time inYEARS!) every night and says he plans to continue to do so as he sees how happy it makes me. How many 16 (next Thursday) year old boys do that?!!! Darla Re: Update on Luke (Aseanth/Zipporrah's brother) Darla, I am sooo sorry that Luke has been so affected too. How scary it must be for him. I know my oldest (Drew, 13) has to be scared after watching what his sister and I have gone through. He has shown some hypoglycemia, dysautonomia and exhaustion. It scares me so I know it must scare him. My prayers are with you and your whole family to find the answers to this mess. Why haven't the docs put all of your kids on the mito meds? I would think since they are mostly supplements and your family history that they would rather be pro-active. Just wandering. I know we are seeing Dr. Natowicz (Cohen's partner ) in September for my other two and I am demanding treatment. Won't he be happy?How are you feeling? You must be so tired and frightened. You probably don't even have time to be afraid, huh? Try to take your own advice and take it easy at least as much as you can! DawnPlease contact mito-owner with any problems or questions.