Sunday, February 28, 2010

Our New Entertainment

So here is what Jake said when Canada beat USA in hockey...

Tuesday, February 23, 2010

Dedication Sunday

1 Samuel 1:26-28
26 and she (Hannah) said to him, "As surely as you live, my lord, I am the woman who stood here beside you praying to the LORD. 27 I prayed for this child, and the LORD has granted me what I asked of him. 28 So now I give him to the LORD. For his whole life he will be given over to the LORD." And he worshiped the LORD there.


So we dedicated Jake this past weekend remembering that he is not ours but God's. He has been entrusted to us to raise him in a way that will Glorify our Lord and Savior. It is our promise to "Train (Jake) in the way he should go, so that when he is old he will not turn from it." (Prov. 22:6) It was such a blessing to have our parents in town for this priceless day. For so many years Gerald and I have watched family after family dedicate their precious children, longing for our day. It took everything in us to keep ourselves composed. This church family has been a HUGE part of our journey to becoming parents. What a special day!!














Finally a picture of the two loves of my life....

Friday, February 12, 2010

Thursday, February 11, 2010

Not just something we "Believe"

I just had an urgency in my spirit today to share with our readers that the healing we speak over Jake is NOT just something TO beleive. It is WHAT we believe!! You see, we KNOW that the Lord has a BIG plan for Jake, and that plan involves God's Glory! Jake will grow up knowing the limitations that are placed on him by doctors. He will grow up knowing what the doctors say he can and can't do. He will also grow up having a deeper and closer relatioship with the Lord because he will have a dependency on Him that is different than any other "normal" child. I believe with ALL MY HEART that we WILL see Jake healed. I don't believe it will be in infancy, I don't even think it will be as a toddler. I believe that his healing will come when Jake is at an age where he can experience and understand his limitations, and thus experience and understand the gift of his healing that much more. I believe the Lord wants Jake to be a participant in this journey of his ultimate healing. It is actually my hope that Jake will be the one to approach Gerald and I one day and tell us he's been healed. At that time we will have the doctors recheck that gene. What a celebration that will take place at that time! I know that until that day comes we are going to have our fair share of ups and downs. We will have our battles raising a little boy that, for now, can't do all the things little boys do. We will also have the challenge of raising him up in a way that HE knows the promises of the Lord. That HE understands that God is GOOD. The HE understands that God is his ultimate physician. For now we will just rest in the presence of our Lord and on HIS promises to keep Jake safe, to hold him in the palm of HIS hand. I am so thankful that we have a God that will walk this journey with us. I can't imagine living this challenge without being able to take hold of the hand of our Lord and Savior and trust HIM in all things.

Malachi 4:2-3
2 But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall.
~This will be Jake running and jumping as he was told he couldn't do!!~

Acts 3:16
By faith in the name of Jesus, this man whom you see and know was made strong. It is Jesus' name and the faith that comes through him that has given this complete healing to him, as you can all see.
~It will be so, as Jake grows his faith in the one who will give him complete healing for all to see~

Exodus 15:26
26. He said, "If you listen carefully to the voice of the LORD your God and do what is right in his eyes, if you pay attention to his commands and keep all his decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am the LORD, who heals you."
~Lord, help us to do what is right in your eyes, and pay attention to Your commands. Help us to remain solid on YOUR promises and to trust in YOU.~

Again, I just want to reitterate... we are not just grasping at straws here, hoping this will come to pass. We are grabbing hold of HIS WORD and HIS PROMISES. You are right that for whatever reason, the Lord doesn't always choose to heal people on this side of heaven. We truly believe with all our heart that HE WILL heal Jake for all to see. Jake will do things in the name of the Lord that we are told now he should never do.
Also don't beleive that we are ignorant that these words and this promise will not always be easy to hold onto. The fact that Jake is here is a miracle within itself. He was a 4 1/2 year wait. In those 4 1/2 years we had moments of complete and unshakable faith. We also had moments of, Will God really come through on His promise to give us children? We are human, with real human emotions that get the best of us sometimes. We will still question why, and get tired of waiting, but ultimately I know with the support of our friends and family and with our relationship with Our Heavenly Father, we will ALWAYS come back around to HIS Promises that are GOOD and TRUE. You see, our Lord HAS to follow through on His promises... He's God!

Friday, February 5, 2010

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.

Thursday, February 4, 2010

Long QT Syndrome

Well, this will be the beginning of a major journey for the Miller family. As most of you know we have been praying about a condition that Jake was thought to possibly have, called Long QT Syndrome. Long QT has to do with the electrical impulses of the heart, not the heart itself. Basically the heart waits too long to relax before it contracts again. If it waits too too long it causes sudden cardiac arrest. Jake's heart itself is strong and healthy. He had some of the symptoms, (a questionable EKG - there are no outward symptoms. Jake feels nothing) but we really didn't believe he had the "syndrome". So the cardiologist sent him for genetic testing just before Thanksgiving to make sure. Well, we finally got the results and they came back positive for Long QT Syndrome. Not what we were expecting to hear, but the journey of faith, and trust has begun.
I'll try and make this as short and simple as I can. Basically there are 3 levels of LQTS; 1 is the least severe and 3 is the most severe. Jake is level 2. The good news is that that won't change. This is not something that gets worse or better as time passes. The not so good news is that level 2 is the most rare and therefore least researched level. Back to good news, the little bit of research they do have, it seems to lean closer to level 1 than 3. Jake has been on Beta blockers and from the EKG today they seem to be doing their job and keeping his heart in a better rhythm. With Level 1 LQTS the Betta blockers are about 98% effective at helping prevent sudden cardiac death, Level 3 they are not effective at all, level 2 they believe to have 90 - 95% effective rate at preventing cardiac death. What seems to effect the people in level 2 and cause the sudden cardiac arrest is a sudden unexpected rise in heart rate. This means... unfortunately that Jake won't be able to be involved in any kind of sports, no roller coasters, no jumping into a cold swimming pool, no throwing him up in the air, no trust falls, no zip line, it's even recommended that people with this stage don't use alarm clocks b/c that causes a jolt and startles a person. Since ther are so many things in life that can startle Jake that are out of our control, that is why we have the Beta Blockers to hopefully protect him in those situations. G and I will have to get very creative in how to allow him to be a boy and not become overprotective. As I sat in the office today I felt like the Lord just continued to tell me "I've got him in the palm of My hand" We will have to just do what we can do as parents. Make sure he's taking his medication, and be smart and responsible in his activities. It will be a challenge to raise Jake in a way that he's not bitter about being so restrictive in his activities, and to make sure we're not raising him in a household of fear. The Lord does not give us a spirit of fear and that is NOT something we want to instill in him as he grows. I guess that's the long and short of it. I'm sure I'll write more as I learn more.
You are welcome to post questions, but there's no guarantee that I'll have answers. I'll do my best! Thanks for all your prayers and support and welcome to our journey. It helps to know we have so many standing in the gap for us when we fall and interceding on our behalf. We love you all!!

HE GIGGLED!!

Just had to share. I hope this brings a smile to your face... it does mine!! (Ignore the crazy woman that's getting him to giggle)