Before I formed you in the womb I knew you...

Why the good Lord decided to bless me with this amazing young man has stumped me for years….

He is such a faithful young man. I don’t know that I would be as faithful, if I were in his shoes. Heck, sometimes I falter in my faith just as the mother of a JHD child. It is so much more challenging than anything I have ever or will ever, experience. I only thought I had been through difficult times. Looking back, what I thought were mountains, were simply mole hills.

 

 I will never understand why children have to suffer, but I do believe the Word of God and what He says in the Bible… including my favorite verse; Romans 8:28 “And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”

So, I guess I have come to conclusion that I am ‘okay’ with God’s plan…or ‘His purpose’….I’m not sure if ‘okay’ is the right term….I suppose I should say I am ‘accepting’ of God’s plan or I am ‘obedient’ to His plan. I pray every day for a cure but should that cure not come and Byron succumbs to JHD, then I will continue to Praise Him. I know that Byron, and Megan (my daughter) for that matter, are both on ‘loan’ to me and likewise, I to them. 

Now that all of that has been said, it doesn’t mean that I don’t cry, or get sad, angry or sometimes even temporarily bitter. It just means that all in all, we are ok. We trust God and His plan.  And, believe it or not, it is Byron’s faith that has strengthened my faith to such a trusting level. Sometimes it amazes me….I’m supposed to be the mother here…meaning, I am supposed to be the one teaching him. Yet, he teaches me daily in so many ways….especially about walking in the spirit and ‘Living for The Lord’.

Thank you, Jesus, for trusting me with my extraordinarily faithful, amazing young man. I didn’t understand in the beginning, why you gave him to me back in 1993, but I do now.

 

And I will leave you with my favorite quote by my favorite man:

 

"Live Life for the Lord, I do" - Byron Hare

 

Jeremiah 1:5

“Before I formed you in the womb I knew you;
Before you were born I sanctified you;
I ordained you a prophet to the nations.”

Day by Day

It breaks my heart, every day, to see Byron slowing down more and more. I lose a small piece of him every day it seems. I think the hardest part is seeing him struggle with the little things.....with balance just to sit on the couch, or fighting to control his hand as he reaches into a bag of chips, brushing his teeth or opening a yogart.....

There are times that I can pretend that 'I didn't see that' or just smile and focus on other things that make me happy...like the fact that he is still here and I can still say I love you as many times I can muster it to him. Then, there are days that I am in this 'trance'...just trying to make it through the day without screaming at anyone I see and punching everything within reach. I think I need to invest in a punching bag. Seriously. I'm struggling today. I'm sad, I'm torn, I'm broken.

Sadness just sneaks in sometimes...the smallest thing can trigger the emotions sending me into a downward spiral. I'm scared that I am going to lose my ability to be positive. This just gets harder and harder and I know that that is all it will do.....is get harder.

There is no light at the end of this ugly tunnel.... Lord please heal him and help me to be strong until You do.