Mitochondrial disease

I dont talk about Nonis disease or her struggles( i try to stick to basics or facts) but i can tell you how she has touched many folks for the good.
I ONLY talk about the UGLY with close folks in my life.
Did you know that Noni is NOT supposed to see past childhood? Did you know every birthday hurts my heart and takes my breath away! I am scared seneseless of what devices are in my childs body!
Noni since birth has under gone over 150 procedures and still counting. She has been from nothing but seizures to intestional surgery. Tube placements, line repairs replacements, Mri that results always for the need of contrast and sedation...
The world in which i live in can be so overwhelming.
I say all of this because not many people see it.
I listened to my Brother preach his message he prepared a few weeks ago. It was one of the most inspirational and touching.
He talked about our secrets that God always sees them and how we cant hide from the truth. He also talked about in Job where he questioned God.
I really have studied Job more than once but i have never heard it in the way.
He focused on so many key points and my Noni is amazing she writes down and really works hard to keep up with lots of struggle but last night she wrote them all so perfectly in her own little way. I was packing her bag and found notes to the ones she loves and about them,
Here are her letters:
Hey PAW PAW, We are wathin Bruder  Brians and Kritys dog Brodie!

emma nee, did i tell you snugghles died i love you.

Paw paw, i gots meidcade
Nana, igots meidcade!

Why would i write to you about this b.c as a mom this is inspirational too!
I once thought it was  MY WILL that i had to stay ten steps ahead of her disease and when i did that i was setting myself up for Loss HATE and saddness. One day after studying Job it hit me! My father in Heaven LOVES me and my family so MUCH that i need to just STOP and learn to give it all to him.
i feared it for so many years doing such a thing because i felt like i was giving up and he would just take her from this earth. I have never professed perfection nor have i ALWAYS made the perfect choices for my children and Noni. I wanted to do what was right and in my mind i had to justify the means when all the while i needed to step back and let Gods will be done and the only question i should have been asking would be something like Where to? What  next?
Not for me for me and... well you get the idea.:)


So many times i have often wondered and asked Why my child, father? So many folks in the world get healthy perfect children example the Duggers 19+ kids!!!!  Genetically perfect children. So i had to step back and realize what i was asking....
Its a shame that i would even consider asking him why! The correct question is WHY NOT?
I have a beautiful child whom LOVES uncondtionally, lives like no tomorrow and has blessed my life more than i would have ever imagined! I can tell you that all of my kids are such blessings to me and i feel special to be their mom. Even the angel in heaven that i lost i am a better person because of my children.
i have to "pick on" noni tonight.

So back to what i was talking about....
Is that for so many reasons i could be mad angry and even use this situation in my life to turn away from HIM but it has strengthened me and given me a new way to see life. What a blessing this life is to me. I get so many times  " i dont know how you do it" i dont know how you can watch your child suffer" and" i dont know how you handle all the stress"
My answer is always the same. This is my normal and i LOVE my life. I am a wife a mother and most importantly i am a Child of our greatest  creator, God!  I am truly blessed. I once even had someone say to me a terrible thing " why would you have more at the risk of another being sick" my answer is that i am a blessed better person b.c of all of my children and they have taught me so much about life. They are the reason that i am who i am today and a Christian. My sweet MaKenzie introduced me to a life long Friend that happened to be a christian! She introduced me to the True Gospel and converted me and since that so many more have been converted from that one seed planted!
and Noni has taught me how to love more, live more humble as God desires and to STOP asking why and start saying Thank you for each day i get up as scarry as a birthday is for Noni its pure joy for her. For me i have to remember that Gods Grace has delivers. He did NOT HAVE to do that. He did it so i can have an eternity in Heaven with my child already there before me and loved ones and i can be together with all my spiritual family!
Now would i have another child SURE! do i want one? my selfish desires say no but my heart says WHY NOT?
if i weigh the pros and cons of adding to our family the pros by far out weigh the cons and i have always felt un done... Not content. I some times wonder if i am not content because i have a child that is not healthy.

So, i have to say I want Gods will for me in this life NOT my will.
So what ever the plan is as hard as it is i will obide. I will love as if there is no tomorrow, breath as it is my last and repent because i live in this flesh and it gets hard.
I will keep on caring for Noni keep on fighting for every step placed in front of me for her and I will keep on keepin' on!
I often feel less than because i dont have a masters degree but then i remind my self i am a Mom to three beautiful children on this earth, I am a wife and i am a sister to my brethern.
What could be better?
a degree does not make me a better person or gives me all power and knowledge. It just simply means i have another Skill!
School... I am doing very well I am keeping an A-B average and i am working so hard to acomplish my goals. I am working so hard and find my self often falling Short. Lately i have been quick to anger and YELL at my children. I am on new medication and its affecting me and my personality.
please dont take this as complaining. I am not im just simply chitter chattering.