Pictures from almost a year ago...

 Last year, we got to spend time with both of my grandmothers, it is always such a special time, I don't take it for granted and I savor the sweetness of it for a long time...

 This is the boys with my cousin's daughter Dariana. Her older brother, now in heaven was born with a heart condition. His life brought so much joy and love, can't wait to see him again!

 For their 5th birthday they wanted to be superhero's!

This little boy is David. His mom, aunts and uncles lived with us in the children's home for many, many years. I hadn't seen the girls since they left about 6 years ago. The boys realized that David does not know Jesus and doesn't follow God... it was very sad for them and for us. We pray that God will remind them of His goodness and unconditional LOVE...

Sovereign God

It's amazing to me how in the Bible, God started revealing Himself to humanity little by little. He is so gracious and realizes how small we are, how small are brains are and how we just can not get it all thrown at us at once. We would probably explode if He did.
So, in the beginning He reveals Himself to us as the Creator, MIGHTY, Strong GOD. In His name He adds that He is three in One. He shows Himself as EL ELYON, the Most High, Ruler, Sovereign God. El Roi, the GOD who sees (me). Adonai, Master... Lord. El Shaddai, GOD Almighty, all supplying, sustainer. Jehovah, the self existent One, the Most Holy, the Great I AM. Jehovah-Jireh, The Lord Savior, provider. Jehovah-Rapha, the Mender, the cure, the one who makes us whole, the Healer not only of sickness but of our souls....
We had the opportunity to share with the youth kids from Church two Sundays ago, that got me rethinking of a lot of stuff. Also, on Thursdays Im going to a Bible study that my mother in law is leading on the names of God, called 'Lord I want to know you'. It's the second time I have had the opportunity to study this book and it is just so amazing. When I look back at my younger years, I know that I loved God, that I knew Him well, I thought anyway. But I definitely had Faith in HIM. I could see Him as my provider, my sustainer, the One who Rules over all, my Master, my healer, etc. With the boys birth He tested it all. He had tested me before on a smaller scale, but He really tested me big time. It's crazy that almost 6 YEARS later, I am not even close to done processing it all. In a way I see this as Gods grace, not showing Himself to me in a way that I can't handle. I saw a dear sweet friend a couple of weeks ago, she was our connection to Baptist Hospital and the boys first nurse. She was telling me how some of her nurse friends get frustrated with parents, saying that they are so in denial. She tells them to leave them alone, to allow them to hold on to hope and not take that away. I can see how this happened in my life, God sheltered me from my own brain and little by little He has let me experience some of the emotions I could have had during to hardest part of the trial. Sometimes it makes me a little bitter, and I am ashamed to admit how long and slow this is all been for me to grasp, really to accept. I am a slow learner, I have so many questions and frustrations, I make myself feel overwhelmed and like I'm drowning! Thank God that He sustains me even in my hurt, anger and confusion. He slowly leads me into the deep.
God never makes mistakes, my name means 'little rock'. I know that my parents did not pick out that name for me because they just loved the meaning of it! I used to say that I could never survive another NICU experience, I said that if that's what God would give me, then I never want another child. Slowly, surely I can say that no matter what GOD, sovereign Ruler of all, who is ABOVE all and has POWER over all, if He always the trails in my life, then by His Grace I will survive them.
I've heard people say that because we live in a fallen world, bad things happen. That ALL evil comes from the evil one. And although this is true, it was a infuriating thing for my heart to hear. MY GOD is greater, MY GOD is bigger than the universe, NOTHING can happen without HIS permission, nothing can catch Him by surprise, we do have free will and I cant explain or understand fully how the two work together, but my heart knows they do. The conclusion that I come to is this. Everything, good or bad that God allows us to go through, weather its an attack of Satan, a 'natural' disaster or His doing, it all is filtered through His great and perfect Love for us. He is outside of time, He knows that pain will only last a moment, compared to eternity and the Glory that awaits us, it's but a blink of an eye. So yes, we live and operate in this 'fallen world' but GOD is over it all, above it all. Sovereign(possessing supreme and ultimate power, absolute, unlimited, unrestricted, boundless, total, unconditional power and authority).
I praise you Father, Ruler of All and I choose to rest in your great love for me today...

Going back in time...

Since I stopped posting here so long ago, and I always want to but I feel overwhelmed about how much there is to update on, I've decided to go ahead and 'go back'. I feel like I need to anyway to maybe process some of the 'stuff' that has happened. Please always feel free to leave a comment, even if you don't think it's something I want to hear, I need truth spoken into my life! Sometimes my emotions get in the way of growth...

One of my  dear cousin in law's twins is having his tonsils removed in the morning, she asked me to be there to 'keep things in perspective'. It's been such a mixture of emotions being a part of her twin experience. Her twins were born a little over a year after my boys were born. They were premature, 34 weeks I think. I've heard her tell people many times that her NICU experience felt like a breeze because she had just watched us go through ours. I always feel a little sad about the fact that she didn't really feel the right (maybe?) to let herself feel the typical things that one would feel having a preemie(or two) and leaving them in the hospital. And at the same time I get why she felt that way. But then I think if I put what i went through, what my babies went through up against other moms and babies, some of these being my friends, I can feel really bad about complaining! Our pain, whatever scale its on is still pain. We feel it, even if it's gratitude that we should be feeling... its real... it's validated.

All this got me thinking of Levi and his reconstructive airway surgery.  You know? Jesse can remember tons of little details surrounding the day of Levi's surgery. It blows my mind how he will, out of the blue start talking about it and things that happened that day even though it was over two years ago! Levi was given medicine that causes amnesia after every surgery... man, I wish I could have had some of that! He doesn't really remember anything about that horrific surgery. I am definitely thankful for that... if only I could forget.

We had waited for it for so many years... we thought he would be able to have it before age two. The time had finally come and although I knew(or I thought I knew!) it would be hard, I was so excited that it was finally happening. I so wasn't prepared for the process, but then I think nothing really could have prepared me. It was something we had to go through to obtain the amazing goal of being trach free. Such a valuable prize on so many different levels!

The process... oh the process... After the 7 hour surgery, in witch they cut part of his rib out(he has a big ole 2 inch scar there), cut his throat open(one inch scar), cut away part of the scar tissue inside his airway and used part of his rib as grafting. Then they put a tube in his airway to keep it all from collapsing, the surgeon described it as feeling like a 'lipstick tube' stuck in his airway.   That was a lot to handle. We were told that they would keep him sedated for at least 24 hours after the surgery, that sounded great to me! But instead, when surgery is over and they have taken him to the pediatric intensive care unit where he would spend a week at, we find him half awake, confused, angry, in pain. There are about 5 medical people messing with him, he's trying to fight them of! There is a bright spotlight right above him. He wanted me to hold him but I couldn't, the surgery was so fragile and moving him was to painful and dangerous. He had two IVs in him, a feeding tube in his nose. It was worse than when he was in NICU because when he was there, he was a little innocent baby unaware of everything. This time, he was aware and it was so painful and confusing. He would sign that he wanted water, couldn't have any, he would sign that he was hurting, that he wanted to be held, that he wanted his bottle! Oh it was torture.... Lucky for me, a friend was there with me and she helped me breathe through the initial shock and kept me from fainting.

I realize that most likely nobody will benefit from reading this, it's really just me that needs to get it out! We all want the prize, the end result, the benefits of our situations! I knew that all the pain was going to be worth it when we reached our goal. I got a glimpse of our Fathers heart towards us, his little children. Levi absolutely could not understand what was going on, why we were allowing it. I know that he felt that NOTHING could be worth that amount of pain and discomfort. And had he had the choice, he would have said that he would rather keep the trach and not go through the process! But we knew, we understood that it would all be worth it, that the pain would go away and the benefits would be so amazingly wonderful, and we were right! It was all worth it. And like I said before, he doesn't even remember any of it!

Whatever painful circumstance that you find yourself in, even if it's on a smaller scale, remember there is purpose in it. Anything that our Heavenly Father allows us to go through has a purpose, otherwise he would spare us the pain! But HE knows what we need to go through in order to grow, to be whole, to obtain the prize and reach the goal. This summer that Levi got to swim was so incredible! He loved it so much and was so proud of himself for jumping in the water a million times. We are so thankful for what He's done and the gifts that He has given us...

So, please pray for little Peyton's surgery tomorrow, that all will go well and that his family will have peace through it all...