He is STILL our MIRACLE!!

So as I was getting ready this morning and thinking on the new journey we're on as a family. Many things came to mind that I feel like I need to share.
First.. the title of this post says it all. Jake is STILL our little MIRACLE, and I in no way believe he was created with Long QT Syndrom by accident. God has a purpose and ultimately it's for the greater of His glory. Now, don't get me wrong, that is not easy for me to say or swallow. In fact, it often causes anger to swell up inside of me and question WHY knowing that I will probably never get that answer. One of the hardest things so far for me has been knowing that the ONLY WAY to walk this journey with peace and not fear, joy and not anger is to crawl up into the lap of, and pour myself into the One who allowed this to happen. *sigh* That's a hard one. As much as we know about our Lord and His ways. As much as we know we have to trust Him. As much as we know He works all things for the GOOD of those who love Him. As much as we know that His mercies are new every morning. As much as we know God has a plan for Jake (and us). "A Plan to prosper and not to harm, for a hope and a future." As much as we know He is close to the broken hearted. As much as we know God keeps his promises... this journey is NOT an easy one. We will not always "feel like" praising Him in the storm. We won't always "feel like" He is good. We will need those new mercies every morning. We will need the promise of a hope and future. We will need our family and friends interceding for us and encouraging us along the way. This is a journey that has only an eternal end, and I hope we can keep an eternal perspective. It is my hope that as we walk this journey as a family, and as we share on here the things the Lord is teaching us, that it's not about us, but about Our Lord and our dependence on Him. About his goodness when life doesn't "feel good." I want it to be about who HE is in this situation and not about what He can do for us. As hard as it is, I want to trust Him where we are and hope in HIM and not in the good or bad of the situation. I pray this can be a place that even in difficulty, the name of the Lord can and will be praised. It is my prayer that even as we have to explain to Jake that he is fearfully and wonderfully made with the obstacle of a "different heart" that he will not become bitter. I pray we allow him to have as normal life as possible and not worry about what "surprise" each day could bring. I pray we can cast our cares on HIM because he cares for us and because I know that if we do cast our cares on Him, He will sustain us. I ask that you not cease praying for us along the way. I pray also that you challenge us along the way. I want to not only speak of His goodness, but to live it out. I want to be more than just words, I want to live the faith I write about. That's a challenge because, even now, as I write these words, I don't "feel" full of faith. I don't "feel hopeful. I don't "feel" like praising Him in the storm. I "feel" like yelling at Him. I "feel" like shaking my fist at Him. I "feel" like telling Him He made a mistake. That's how I "feel" right now. But I KNOW TRUTH, and I hope that truth is what penetrates these "feelings" and sustains me through the difficult days. I pray that as I write about and speak about these things that the Lord will renew a right spirit in me DAILY! I am so thankful that, though I will have days of bitterness and fear, that when I decide to lay those fears and bitterness at the foot of His cross He will be there to welcome me back into His lap with open arms. Thank you God that you do not give us what we deserve.
We ask now that as you go with us on this journey that at this point in time you will join us in praying for these specifics.
*ULTIMATE HEALING OF JAKE'S LQTS!! We know that Our God is WAY bigger than one gene that carries LQTS and we will NOT cease praying for complete healing.
*Against fear that I KNOW will attempt to creep in often.
*Negative results for both G and I as we now need to get tested to see if we are carriers of this gene and passed it onto Jake or if it's a gene that mutated on its own.
*Protection over Jake as he goes through day to day life and deals with the limitations that are put on him.
*Wisdom for G and I as we raise him. We do NOT want to become these crazy over protective parents. We hope to be in tune enough with our Lord that we will know when to have Jake walk, and when to let him let loose and run!
*Creativity in coming up with activities that Jake CAN do as he gets older.
*A good friend to walk along side Jake as he gets older. A friend that will sit with him when he needs to sit, a friend that will encourage him when he's feeling left out. (My heart hurts because I know those days are coming)
*Last (for now) a strengthening of our Faith and a deeper understanding of our Lord and His ways.
Finally I'll leave you with this:
Selfishly I want Jake to be "normal". I want him to get to live as a "normal" boy, to play as a "normal boy" to do crazy things like a "normal" boy. But I know in my head (and eventually my heart) that our Lord has MAJOR plans for our sweet boy and that in the long run this will draw Jake into a deeper relationship and dependence on Him. What more could a Mom and Dad ask for than to have a child walking hand in hand throughout life with Our Big God and serving Him however he is called to serve. Thank you Jesus for our precious son who You gave to us. Help us to raise Him depending not on us and our finite ways, but on YOU and your infinite wisdom and love! There is so much to be learned on this journey. Help us to remain in a position to receive all you have to show us along the way.