So I’m sitting here on a plane typing this on my iPhone.I might or might not post it on the blog. It might make sense when I’m done or it might just be bunch of no sense rambling. I guess we will see:) I love to read from books to magazines to short stories I just love it, it’s an escape in a way. For a few minutes here and there you lose yourself in a different world and forget about the daily struggles of your life!
Since Jagger has been sick I had very little time to read, I used to read each night in bed before going to sleep but now it's impossible, if I have any time at all, I usually spend it researching treatments, ideas or talking to other Mito families and trying to educate myself as much as possible on Mito and genetics.
I cannot hold a book and hold him at the same time or at least I can’t turn pages without waking him up!! I tried the kindle way, and it works to a point but my reading time is still down to almost zero.
So one thing I usually do in the plane, is read, catch up on my magazines and if I can open a book
Today I was able to finally finish a book in French about my all-time favorite singer, Patrick Bruel. The book has a strange format and it is more like a Q&A about his life, career, future, etc
Patrick Bruel, has 2 sons that he had later in life, around 40 years old I believe, and one of the question from the writer was, when your sons will be 30, you will be almost 80 are you ok with that?, and the answer from Patrick was very touching:” Ce que je ne connaitrai jamais avec eux me manque deja.” which in English, roughly translate to “I am already missing what I will never be able to experience with them”
And of course, that made me think, now for us it’s a reverse situation, but it’s so true, I do think about that sometimes, all the thing that I will never able to experience/share with my son, and it does makes me sad because it is not the way it’s supposed to happen
Annett and I do live one day at the time now, and when you have a Mito kid, you don’t really have a choice, but we do sometimes talk about the AJ (after Jagger), now some of you might thing that is weird or wrong, but it’s just being realistic, we do know that day will arrive, we hope wish and pray each day, it will not happen for years but we know it will and there is nothing we can do about it.
Mito will be with us forever, not only because it will take our son, but because if we decide to have other kids, we will always have the fear/worry that Mito will be a possibility our next baby. For a long time, I have been thinking about what I can/will do in memory of Jagger and I always come back to the same thing, a nonprofit charity to help Mito kids and families, what will it be, I don’t know yet, I have a few ideas but not time to look into it deeper at this moment, nothing will happen as long as Jagger is with us, because I do want to spend as much time as possible with him.
The only thing I know for sure is the name, it will be call Jagger’ smile, because that is the one thing that everyone that had the chance to meet our little boy for even just a few minute, will always remember about him, Despite the great pain he deals with daily, he always find a way to smile, his outlook on life and happiness are truly amazing, and I know that is I was in that much pain, I will not be smiling, but our little boo is truly an amazing strong boy!!
The other thing that often cross my mind is to write a book,I am by no mean a writer, and Annett still has to correct some of my grammar before I post on the blog and the spell checking does a great job catching my typos, but I think a book about our experience and how we are dealing with Mito could be helpful to newly diagnosed families. Not sure it will ever happen but who knows, and if I do someday write it, I hope that all of you will buy 1, no 5 copies!:)
Ok, enough of me rambling, I guess that entry is all over the place and make little sense, but that is the way my mind is working those days on the little sleep that I get!! LOL
Talking about charity, we were lucky enough to get connected with a great charity call Tiny Sparrow, they take professional pictures of terminally ill child as a memory for the parents/family and on Friday we are having our photo shoot. Feel free to check them out at tinysparrowfoundation.org and if you happen to be a professional photographer and have a little freetime, please contact them and offer to help, they are always looking for photographers all over the country.