Friday, September 27, 2013

Looking Back

A year ago today, our 3 day old son was going through what most people
will never go through in their lifetime. (and it was just the first of 3)
Open heart surgery is so mind boggling to me.

I know it is mind boggling because I have not endured years and years of school and practice to become accustom to it. I also know that if I knew exactly what they were doing to my son that day, I would have probably not have gotten through it the way I did. They are totally honest and upfront about the basics, as they should, but I left the details up to them. I trusted our surgeon, the OR staff, the PICU staff upon his return. There was just this level of "he's going to be ok" that I settled into that day. With the support group we had that day, it was easy to stay peaceful and calm, watching after Ava, still being in recovery mode myself from the c-section, it was a quiet day at the hospital. We awaited every phone call they made from the OR. It was intense, but it was ok. I remember eating in the caf, camping out in "the cove"
(the hospital's indoor playground), trying to rest when I could, frozen yogurt (the hospital has a froyo place) actually laughing and just being together was a blessing.  The whole 5 months was intsense, but it was always ok. Somehow, someway, that peace that surpasses all understanding always found its way into my heart, into the room, into the situation. There were days when I wanted to be mad and angry and I was. I let it out often, I probably had more than my fair share of whining and complaining and I still do. Certain nurses will tell you that I am/was not always "peaceful" or "ok". They loved me anway and through it all. I'm forever thankful for that.
I began to read this verse this morning and realized that without knowing it, the more I would thank God for the little things, just take things a day at a time, savor everything as it came and find ways to worship and be thankful, that is when the peace settles in. It never settles in during my whining, during my doubting, during my questioning. Only when I began to write down or say things that were OK, that were good, that were obviously a blessing would I begin to feel peace and be FILLED with peace.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you. Philippians 4:4-9

So, I guess what I am trying to say is that there have been days since Noah's death that I have forgotten how I even got through the hard days when he was alive. I did not forget that Christ is my strength, I just forgot to tap into it. I began the "why don't we get a break" attitude and the way I prayed suddenly became conditional, since He didn't heal Noah here on earth. I figured that if my prayers weren't being answered then surely something must be wrong in my life. What am I doing wrong? I still struggle with that. I am sure, in my humanity, I will always wonder what I did wrong to have a child with a CHD, to have to watch my little one suffer the way he did, but when I (not in my own strength either) finally said, "no matter what happens, it will be OK, God will still be in control, and somehow He will never fail us or let us go", then did I finally have that peace. It would come and go, sometimes days were easier, but I realize looking back that I would find a place and unload to God in my journal and I was search out every nugget of truth in the Word, daily. Every single day, sometimes for hours at a time. That is why, in the midst of my biggest storm in life, I could "be ok", "have peace" and let God do what He so desired with Noah. That is where we recieve our strength; in being with Him.
I have to be honest and tell you that the day Noah died a piece of me died too. It felt like part of my faith, if not all of it, died. I know it is normal for grieving mothers to have that time of pain, hurt, doubt, lack of faith, "why me's", nothing will ever be the same again attitude (and it won't and that's fine), the feeling that if I had to give my child back then don't I get a break for awhile, from the trials and pains of the world? All of those things, I deal with daily. Somedays are better than others. Some days the pit of grief feels warm and comfortable and I don't want to be bothered there. I want to lay there and be sad, be lonely, be withdrawn. I like it there some days. God knows there is no life in that place though and so He usually has Nick draw me out, put a smile on my face and in my heart and he helps me move on for awhile. The "dark days" generally do cleanse me and remind me that my, our, hope is not in life on earth. Somewhere in all of this grieving mess and adjusting to life now I have lost that peace, that "ok-ness" that no matter what happens, no matter how life works out, it will be OK. I realized, through our convicting and yet gentle, loving and kind small group (that I fought all day yesterday, trying to find a reason to not go) that for one, He has never left. Two, I'm not the only one with a boat in the storm. Three, I've quit rejoicing. I mean, I'm thankful, but I quit having the mindset and heart that no matter how life goes, there is something to rejoice over. Perhaps I put on a good front most of the time, but when I get down to it, my heart has not been rejoicing. I give good lip service in that way, but I can say that I haven't been honest in the "God is good", etc. That word in Habakuk, that sermon that was preached by a dear friend of ours last fall, that carried me and kept me focused on rejoicing through it ALL, I seemed to have filed away. If God won't answer this prayer, why would he answer any others? If we had to let our son die, for "His Glory", then why would he allow us to suffer through issues that we can barely afford to fix, get fixed, pay for, etc. Why would we barely make it sometimes after letting God have it all and do what he wanted in our life, in the life of our son? I don't understand so many times, but He doesn't relent, until he has it all. In February, He had it all, in September, He's having to ask for it all back again. We tend to do that. We tend to take stuff back and instead of letting him have every ounce, good or bad, we take little bits back and then we begin to feel entitled and that we deserve better or more than what God has already provided for. So, He uses Noah in our life, yet again, to draw our attention, our affection and our commitment to Him. I will never have the means to make my life whole again. Eternity in heaven is the only thing that will make me whole. But, I do know that somehow in all the mess we have to deal with right now, that He has never left. We are not the only boat out in the storm and He wants it all, with a rejoicing heart. That doesn't mean we don't have honesty with him and we don't get mad, frustrated and hurt when things don't turn out the way we want. Whether it is in the death of my child or in the fact that we have been asking God for big things in our life that he has yet to even sort of respond to. So, I'm not sure where else this is going, other than the fact that, if the only reason we had Noah was to keep us continually focused on God's way and not our own, then ok. The peace that surpasses all understanding remains and His love never fails, never gives up and never runs out on us. 

If I were to update you on our life a year from Noah's birth, I'm not sure I can even describe how provided for, blessed and thankful we are. God has never left us, even when it feels that way. He has plans for our family even when we feel like we are being punished or forgotten. God has certainly blessed us with people, some we don't even know, who love us well, carry us through and have more than honored us by their love for our son. Thank you cannot begin to cover what our hearts feel for each of you. God is faithful. 

We have settled back into life, Nick works, I stay at home with Ava still, we have begun our venture into the small business world of graphic design and art lessons. We are super busy with things at church and try to spend lots of time with family. We are planning on going to St. Louis for Thankgiving, to be with Nick's dad. They spent so many trips coming down here during Noah's life that we want to go up there and be with them. 
I know that so many people still pray for us often and we are so grateful. Please lift up what God has next for our family. We take things a day at a time, but know that God has plans for us, especially in our business endeavor and we want His hand upon it. There are other things in our hearts that we are asking for favor and blessing in. Trusting God is such an adventure. 
I will leave you with some memories of that first week. Many of you know that the day after Noah's major open heart surgery he went into cardiac arrest and they almost lost him then. There are so many things that happened that first week and without the prayers of so many, we would have lost it. Love you all. Thank you all. 
Noah's mommy
Playing in "the cove"
Grandpa and Ava reading a book
Ava meeting the Cook's Puppy
Harley Socks
He really was a little baby at one point. :)

Noah buried in all his "equipment"

I could tell you what all of those did after awhile. :)

Ava learned to nap anywhere, anytime. 

Finally let go of some fluid and looked normal size. 
Tired, but together. Every weekend was sacred. 


Thanks again for all the love, support, encouragement and prayers. We are forever grateful.