A night like tonight...

I don't want to stop grieving. It is the closest to Noah I have sometimes. That is all. I don't need a pep talk or a sweet saying to help me through the rough patch. I just need to grieve and not feel like I have to learn anything from it or find the good in it. I just want to grieve that my son is not here for me to hold.
For now,
Noah's mommy

Missing Noah

I realized yesterday that in a perfect world, I would have a 1 year old next month. I truly cannot fathom it. A new pain wells up deep within my heart and I ache so much I hardly catch a breath. Did the last year really just go by that fast? The days seemed so long at the time. They would drag on and on. They went in terms of day shift and night shift, Friday nights and Sunday afternoons. The months would come and go and we would realize we were still there. Yet, the days were so long. Another month and we would find the good things to be thankful for and soak up all we could of each other and the little bits of good news and hope. The months since we have all been back home have been fast. We have had lots going on, Ava has been growing by leaps and bounds, daily it seems. We have enjoyed time with family, friends and back at church all the time. We have had a few mini vacations and lots of snuggles. We are still playing catch up on those. But, a YEAR? I am sure that there will be another rambling around that time, but for now, I guess I just want to be in denial. 

I cannot and won't sit here and go through all the what ifs and whys. I will tell you that not a day goes by that I don't think of my baby. Not a day. There are days when missing him makes me better. It makes me take risks and live life fuller. There are days that missing him makes me weep. A lot. There are moments that missing him cleanses me. There are times that missing him makes me thankful. 

Missing Noah has taken a lot of forms and has resulted in various things for me in my life. I won't deny the fact that missing Noah tends to be my form of inspiration these days. Without knowing Noah I would not have had the courage to begin stepping out in faith to follow my dream. Without missing him I would have backed out when my doubts started to cloud my vision. Without missing Noah, I think that I would have stopped listening to God. I have listened to God more in the last year of having Noah in my life, than I EVER had in my entire life previous. I told a dear friend of mine and his wife, in the cool Colorado evening air, as we visited after an evening of worship and the Word, that perhaps Noah was sent to earth, just for me. I have never longed for eternity, never had such a direct means of sharing Christ and never a hunger to keep after Him, than after Noah came. Perhaps even more so after he went. 

The thing about "losing a child" is that it is either a constant reminder of how terrible life is, how ugly life can be, how unfair it all is and how hateful God seems to be towards us. Yet, it can also be a means of grace, a way to the Father, a lesson in love, a message of mercy, a continuing calling to go deeper and climb higher, a way to forever want more of Him, anything to be near my little one. Noah's death keeps me closer to true life. 

That doesn't make it easier, as much as it makes it worth it. Each painful moment gets me one step closer to eternity. Each longing for Noah, keeps me longing for heaven. It keeps me seeking after the places God is and makes me want to be there. 

Worship, in the corporate setting is my healing grace. There were a few moments, during youth camp in Colorado last week, that I felt closer to Noah than since February 22nd. To see young men lift their hands in worship to the Lord, it made me wonder if Noah would have been like them someday, but at the same time it made me realize, he ALREADY is. He IS worshiping, he does have his hands raised in praise and for that I am thankful. 

I may be weak, but your spirit's strong in me. My flesh may fail, but my God you never will. 

God never intended for Noah to be one year old on this earth. Realizing that is hard, but I know that each of our days is numbered and Noah fulfilled his purpose on this earth. The main one, to make Christ famous. The second, to make his mommy seek the Master. 

Good job, sweet son. Job well done. I could not be more proud of you. So, as I get through each day and each hard moment, I'll just soak each one up as a little reminder of the reason I'm still on earth and not with you. 

Missing Noah is something I will never stop doing. That's just fine with me. 

thanks as always, 

Noah's mommy

Our Song

I miss my son. Every moment of every day. Sometimes it is not as evident, even to myself, but the depth of my pain is far beyond what one can just imagine. I do not understand it nor do I wish for anyone else to understand it. It is an odd thing how I can be laughing and playing with my Ava and a second later be curled up weeping, just longing for one more moment with my boy. Tears fall as I write because another month of life has gone by without him here. There are blessings in that, even though it hurts. I realize that him not here, means no more sickness, no more pain, no more misery for him. I get that. I know that. I am thankful for that. I see Ava with others' sweet little ones and she is so in love with babies. She wants to hug them and kiss them, give them toys and hold their hand. She just loves babies and I am certain that somehow she is seeing her bubby in every little baby she meets. In her little mind, it makes sense.
There were times in Noah's little life that I would sing to him. I never sang to Ava. I know, it's weird. People think that since I sing at church I just sing all the time. I don't. I sometimes sing in the car, I never sing in the shower and rarely do I just go around the house or wherever singing. At least I don't catch it. I just never felt the need or desire to sing to Ava. Maybe that's weird. I sang to Noah though. Not all the time, but in quiet moments where it was just him and I in his room. See, in the spring before we even found out we were pregnant, I learned and began to lead a song at our church, orginally written and lead by Lauren Chandler (Pastor Matt Chandler's wife) at Village Church in DFW. It hit home even before our life changed forever. It became an anthem for me. He is faithful. He is gracious. He alone is God. Lauren wrote this song around the time of Matt's brain surgery and health issues. It was an anthem of sorts for her too. It was proclaiming that even in struggle, hardship, suffering and pain that HE IS FAITHFUL. He doesn't change. His character isn't tainted. His love isn't thwarted. He is still God and he is sill good. So, I would hum it to Noah. He would go to sleep and (since I wasn't allowed to fall asleep with him in my arms- rules) I would just watch him sleep and try to find some rest in all forms of the word. spritiually, emotionally, physically. That song is just special. The chorus is written over and over and over in my journal on the page before the day Noah died. It kept me going. It still keeps me going. As we sat in noah's room and waited for him to enter heaven, we held him. It was quiet. Dr. J, us, the chaplain, we all just waited  and waited. I began to hum and sing it over him and it got us through an hour or so. I began to play worship music on my phone and that song came on at one point.  I just closed my eyes and tried to rest again. Trying to soak every single smell, feeling, touch, hand holding, head rubbing, kissing, squeezing and gazing in, that song just calmed the room. It is a moment I will never forget. I'm not sure if sharing it with all who read this is necessary, but I've kept it private enough that it feels right to let y'all in to that secret place. No one ever expects that they will have to make the decision to let their child go or not. You just don't plan for that day. For that moment. For that waiting time. You don't think that will ever be you. How does one live with the fact that they feel that they let their child just die.  For once, I truly did not know how God would let this happen, but knew that letting it happen was the only way to heal my son, be obedient to Him and somehow move into the next season of life God had for me. For us. It was always us. It IS still always us.

I love my church. We are a close family, yet there are new people coming in all the time. The anniversary of our church was this last weekend and I was asked to lead the song. I had led it so many times before I left for Ft. Worth, yet, I had not since I came back. I didn't make it through practice. I wept. In front of the whole worship team and choir. It was odd. I felt like I could do it and then just couldn't. I prayed. I worked on it. I struggled with doing it at all.
Monday of last week, I got an update on my phone about Madison. We were at VBS and everyone was dancing and singing. I was in the very back weeping. Sweet Madison had gone to Jesus. How in the world would I sing Noah and I's song in a few days with the freshness of it all coming back to mind and heart and so many new emotions surfacing? I told Debbie no. I wouldn't be able to get through it. She called me Wednesday. She asked if I had thought and prayed about it anymore and what I thought. I said I would do it. So, I had committed and would have to follow through. I asked for prayer from my Bible study ladies and my family. It would be such a hard weekend, but I just had that unction from the Lord that I needed to get past whatever I was afraid of and do it. I realized this weekend that I have been afraid that if I got through that song, publically, and didn't cry or "feel" through it then it wouldn't mean anything anymore. It would just be another worship song or another chorus. It wasn't true. Singing it, leading it, getting through it as our entire church worshiped along was, indeed, better than hiding. It made it even that more special because I wasn't singing it as a reminder to get me through (although it still is) I was declaring it as a testimony. HE REALLY IS FAITHFUL. HE REALLY IS GRACIOUS. HE REALLY IS GOD.
My son died 4 months ago. He is faithful. My son died 4 months ago. He is gracious. My son died. He is God.
Here is the point. Without the gospel of Christ. I would not be able to get up every day. I would not be able to raise my daughter. I would not be able to look at someone else or their baby boy and not want to curl up and weep somewhere in complete pain and jealousy. If I did not have the hope of Christ, I would not have a reason to have joy, despite my hurt, to serve, even when it stings, to love even when I feel forgotten. Christ came and died in my place so I could have a home in heaven. WITH MY SON. I suppose heaven, eternity, eternal life, my need for Christ has never been so magnified than since my son died. Maybe part of God's plan all along was to draw me closer and many others, to Him and His reality of our need for Him. I have known him my whole life, but I am not sure I have ever NEEDED him like I have the last 4 months. Well, last 14 months. This journey is hard, long, rough and I would not wish it on my worst enemy, but I am thankful that through every hurdle I have learned something out of it and can add it to my healing. A new stitch is sewn.

I cannot finish this without thanking my church family. I am not sure y'all even realize how supportive, loving and precious you are to me. Some of you knew my struggle this weekend and some of you didn't. It never matters how much I hurt or cry or need to just stop singing and soak it all in, y'all are so accepting, loving and gracious to me through every step. Y'all encourage me, support me, push me and love me through every turn and I am thankful. We could not get through all of this without y'all.

I am thankful for this entire journey and I am thankful tonight for knowing The Stories. Matt, Amanda and Madison. Y'all will forever be a part of our journey and I am certain that Noah was one of the first to take her hand and show her all around. What precious little lives they had and they are continuing to spread God's truth and love throughout. love y'all.

Be blessed.
Noah's mommy

dowload the song, You Are Faithful, from itunes (village church's album, God of Victory) it's worth your .99 cents!

Nothing is Impossible for You...except that.

It seems as though I have multiple friends who have recently been dealt a hand of grief lately. A couple of sweet friends from years past have both lost their mother. A friend I have never met in person, but feel close to in so many ways, lost her son to a Congenital Heart Defect. I say lost, because I just don't have another word for it, even though I know where they all are.  Death is such a big elephant in the room type thing and it is feels good to talk about it here and there without tip toeing around the whole subject to not offend or draw attention. This little blog started a little over a year ago. It has been a release for me. That is exactly what it is being used for in this post. Release. Maybe you'll benefit from it, maybe not, but here it is.
 I remember the day we found out about Noah's heart condition. I am quite certain that I grieved his death in that moment and the evening to follow. Without knowing he would die for sure(so soon anyway) the pain I felt was like no other.  I remember curling up in a ball and weeping. All the whys, what ifs and if onlys went through my heart and mind. I bucked up the next morning, got into the Word and found some scriptures that sustained me as I had to continue to carry Noah, then deliver Noah and go through what I truly thought would be the rest of a long life. I turned my doubts into faith driven prayers and went forward. Forward. Every single day of 9 longs months. This past Friday Noah would have  been 8 months old. I'm sure Ava would be teaching him all sorts of fun things, words and songs about now.

Death. Death can ravage a person's faith. There are days that it still takes its toll on me. A few weeks ago our associate pastor preached a word that completely wrecked me and interrupted what I thought was a "plateau" in my grieving process (or whatever they call it). His sermon was an incredible one, powerful and straight forward about not limiting God, about praying audacious prayers of bold faith, not for our glory but for Christ's glory. That God is the God of the impossible. ALL things are possible with him.
See, at the very start of this grieving process I was very forward and open about how "good" this was and how "healing" this was for Noah. (please know that I am not going back and changing my mind or my heart towards this) Noah was completely healed, ultimately and forever. Here is where I'm going with this. I was so sure and knew that if I could keep "making it ok"  in my mind that if I just went on adrenaline and even relief I could get through the shock of it all and the weirdness of it. Every story of grief is different and for me, there were a few moments of relief in it all. Sometimes there still are. To be completely honest. So, I was going along, full of faith and thankfulness amongst the tears, amongst the grief and deep pain I was dealing with daily. I jumped back on worship team, I jumped back into stay at home wife and mom mode, I jumped back into daily life. The further away from Noah's death I get, the harder it gets to hold on to the "healing" and "he's not suffering anymore" junk. I mean come on. My child died. He's not here. He will never be here again. He died. I held him as he took his last breath. Why is this ok? And Lord, WHY DID YOU NOT HEAL HIM? Thousands of people were asking in FAITH, FOR HIS NAME AND FOR GOD'S GLORY. This apparently was impossible for you. This was too much for you to handle God. Thanks. You can raise Lazarus from the dead, but can't fix my child's heart. ok. That's cool. I guess I'll just go ahead and worship, praise and love you still. (yes, with that attitude) Go back to that solid sermon I heard. It seemed perfect for someone who just got a raise, or had a new healthy baby, or who went and the cancer test was negative. Awesome wonderful sermon for people who don't ask big prayers, who don't think he can do big things for them. Way to pump people up for BIG prayers and huge movements of God for his fame........

Then there's ol me, sitting in the back, weeping because my God didn't come through. He didn't do the impossible. He let the expected thing happen. He let my son die. Having to get up with the worship team and help lead them in the chorus "nothing is impossible for you, nothing is impossible. Nothing is impossible for you. You hold my world in your hands" was a turning moment for me. Ok Lord. Sure. No problem. Let me just set all of my attitude, cynicism, frustration and HURT aside and "worship"... What heart ache and pain it was for me to sing out "nothing is impossible for you" when just a few months before he let my son die. Deep deep pain wanted to bellow out. I wanted to go hide in a hole and not pretend that I actually believed that chorus.  (oh ya, it was Mother's day) The rest of the day through that Wednesday, I just ached, didn't want to feel better, be better or "get over it". I decided I needed to talk to someone. See, Nicholas is my person and he gets through every hard moment with me. All of them. Always. But, I needed some extra help. My sweet friend and worship pastor Debbie sat with me and let me be mad, let me get out some frustrations and questions. Let me tell her all I was dealing with and yet at the same time how I still trusted the Lord through every question, oddly enough. How was it that I could be so angry with him and yet still only want Him? He's truly more than enough. So we prayed. I left with such a burden lifted.

So, is nothing impossible for him? Yes. It is true. I do not have all the correct theological answers for you. I do not have lots of scriptures to give you in this moment. I know he stopped the sun once. I know he did, in fact, raise Lazarus from the dead. I know He kept his faithful safe in an ark as he flooded the entire earth. I know that he protected and provided for a couple of teenagers as they delivered the savior, His son, into the world. I just know that even though my son died, God is still God. He is still in control. He is still loving. He is still the same God who saved me, saved you. Why does God choose to not answer the way we beg, wish and plead for? Why does my baby die, but that baby live? I do not understand God's ways and the ONLY answer that I have truly come to cling to lately is that, God is God. His ways are not my ways. This KEEPS HIM GOD. This keeps him from being "swayed" one way or the other, like shifting sands. Like us. It keeps him from being like us. I suppose, that is enough. Through all the deep grief, questions and emotional turmoil, if I continue to trust him, seek him and long for him through it all, the reward is Him, himself. God himself becomes my reward, my answer. Whether in life and all its hardships, in death and all its pain, in sickness and its terror, in health and its joy. The covenant between God and myself will never be broken by him. Even when I disagree with his ways. God is God. As flakey as some may think that is, it is the only real answer I have for my struggles as of late. It's enough for me. In fact, as I let my anger and questioning go, placed trust before me, asked for someone to hold me up for awhile and then leaned into him, even though I am fragile, He never fails. He is always there to hold me, hear me yell, accuse and question him. He takes the junk I spit at him and wipes my eyes to clear my blindness to his grace. As the same pastor preached today, He sets The Spirit as a seal upon me, that I. AM. HIS. Noah is his. God didn't betray me, ignore me or turn his back on me. Even though it feels like it sometimes. The truth is, that God is God. There is no other. If I trust him I have to trust him with EVERYTHING. I don't get to pick and choose what I trust Him in or what I don't trust Him in. It is all or nothing, hot or cold. If I trust him with the easy stuff, that is just it. Easy. He never promised it would be easy. He promised He would never leave. He promised He would never forsake. THAT IS A PROMISE. He will never forsake. When it feels like He does forsake. Hold on to that promise. More than that, hold on to the one who promises.
I am at another level place right now. Another plateau on this journey. Finding out about another "sweetheart" passing away has been hard today. Seeing all the sweet new babies in church is hard every single weekend. Seeing all the babies on FB, all the friends with babies....they are everywhere. It's like when you want to be pregnant and struggle to (as we did with ava) everyone seems pregnant....it's that same concept. God is gracious though. I do not desire a baby right now in this place in life. I desire to have my Noah in my arms, not another. God is so gentle and gracious with me, through Nick, through family and friends. He is healing. He is loving. He is so gracious.
Just a little update on life in general. Ava turns two in 2 weeks. AMAZING! We are SO excited about her party and celebrating that milestone. She is so very smart. She can sing her ABC's, count to 10, she is saying tons of sentences, she asks questions, is a great eater, she is so funny and goofy (imagine that), she is just the light of our life. Other than that, life is pretty normal. We prayed for that. I am thankful and remembering that we asked, for many months, to be together again, to have a normal pace of life again, to live under the same roof again, to not be strung out and in pain all the time. God is faithful. He truly is. We are thankful. We are so grateful for the continued prayers, support and love that are constantly poured over us, still. We are thankful for those who remind us that Noah is not just a fleeting memory or even forgotten. I am especially grateful for those who tell me, still, what they love about Noah, what God did through him, etc.

Thank you. Much love and many blessings to all.
Please lift up little Kimble's family as they learn to do life without their little man here on earth.

Noah's mommy

Nurses Week

It feels like years have gone by since Noah passed away. It really feels like forever. Being back in Ft. Worth reminded me that we really did have a son, I really did live in Ft Worth for 5 months, Noah really did live his entire life in a hospital and finally it reminded me that God has blessed me beyond measure with some amazing friends because of it all. God placed some awesome people in our life through Cook Children's Medical Center and I am forever thankful. Being back in FW didn't make me feel sad or weird, but it did sting a bit. Mainly because I didn't have this overwhelming burden upon me. Noah was not ever a burden to me, just the heaviness of a severely sick child was burdening on my heart and mind. Every time someone would try to take us to dinner or we would go out and try to relax or take our minds off things, I couldn't ever get my mind off of it all and I would feel so guilty for leaving the hospital. I remember the sad Sunday afternoons of saying goodbye to Nick and Ava. There were so many things that were different this trip. Going to the hospital was so great and we were able to say hi to some staff and thank them again.  At the same time, I was able to walk out without leaving my baby boy in there. I know he's perfect and whole now. We have been so incredibly blessed by the grace and friendship of our sweet nurses and doctors. God truly has used them to help me in this process since we said "see ya later" to Noah. The care and concern they show me is irreplaceable and they are some of the ones that actually understand parts of the journey in ways no one else does. There are so many doubts and questions that continue to run through my mind here and there. Sometimes I wonder if we did everything we could, if we made the right decisions, if we pushed things or didn't push things enough. I know the enemy wants me to sit and doubt and question because it makes God seem incapable, uncaring and distant. I know that is not the truth. I know that the doctors we had there treated Noah as if he were their own child and I cannot imagine it any other way. I'm thankful. I suppose that going back to Ft Worth might have been the reason I had such a rough day yesterday, but I also know that the bad days just show up sometimes without a reason at all. When I get to missing Noah more I get unfocused, selfish and whiny. I know some people would say I get a free pass on those days, and maybe that's true, but I don't think it is a good habit to get in and I have to truly look at my faith, my heart and my application of the Word in my life when the bad days come. The bad days will not stop coming, for the rest of my life I will have bad days of missing my son. They will get further between, but they will not go away. I have to ask God now to help train me to use those bad days for His good and not wallow in a hole of self pity and dispair. Don't get me wrong, I let it out and cry and be sad. I don't need to be reminded that I need to not bottle it all in. haha. I really do get my emotion and sadness out. I just realized yesterday that being rude to my husband, snapping at my daughter and telling myself I am worthless and lazy doesn't bring glory to God nor does it bring Noah back. None of my pity parties will ever bring him back, but when I find ways to serve the Lord, I do feel closer to him.

A month or so before we found out we were pregnant, our worship leader, Debbie, had me learn a song called, "You Are Faithful". Matt Chandler, pastor of The Village Church in DFW was going through a severe illness and his wife Lauren wrote this worship song during their trials. It spoke to me heavily as I learned it, not even realizing just how big of an impact that song would have down the road. I've blogged about it before. The song is powerful and has a huge message, in such a simple format. I love it. The song became Noah and I's lullaby of sorts. I always hummed it or sang it to him to help calm him down, or just as we snuggled in the chair. The day we gave Noah back to the Lord, we held him and held him. I'll never forget that room, the way the chair was set up next to all the machines and stuff. The chaplain, one of the most honest and trustworthy doctors I've ever met, Nick, myself and Noah were all in the room, waiting. I don't think any of us really felt that it would be a long process for Noah to go home, yet we waited and waited. I decided I would hum our song. I hummed and sort of sang, through a broken and crackly voice as he calmly laid in my lap. Nick and I would take turns holding him and loving on him. No breathing machine, no noise, just us. I suppose that was one of the most holy times of worship for us. There is nothing like being in a room where Jesus is present. I remember when my Mimi passed away, I physically felt Jesus in the room. You could cut the peace and assurance with a knife. It was much the same way with Noah. The song You Are Faithful came on my ipod last night while I was cooking dinner. Nick and Ava were at the store and so it was just me. I had one of those moments because I have purposely not played that song for over 2 months now. I have not heard that song, since I heard it play in noah's room that day. It came on and after the last line was sung, it was like a newness came over me, after a day of complete frustration and emotion, I just had this moment where God said, "I am faithful, I am gracious, I alone am God". (such a beautiful and simple chorus)
I suppose I could have slept at the hospital every night, never left his room, never go outside, etc etc. I could have neglected all others to be with him every second, but I realize now that God has always had him in his hands and that every time I was away from him, he was taken care of by some of the most precious people I've ever known. There was a nurse I could get mad with. She let me complain, be mad, cuss when needed (yes i know). I could hate and question, lay it out plainly and she would encourage me and remind me that I was doing the best I could and was the best mom for Noah. Thank you. There were times, sometimes late in the night, when a few of the nurses and I would visit about their kids, they helped take my mind off of things. They would share their lives with me. There was a goofball nurse who would always make me laugh. He and Noah were quite the pair. Such buds. There were nurses who called on their day off, to check on Noah, especially near the end. Even the respiratory people and child life staff would treat me like one of the family.  There were even times when I would realize that I had an entire conversation about the Lord, his sovereignty, plan and care for Noah, the gospel, medicine/faith issues, with one of his physicians. There were moments when I was told, by a physician that Noah was being prayed for at the kitchen table, that he was being talked about to their kids, that a spouse was praying as well. When I tell you Noah had special care, I  mean it. I will never be able to thank those special people enough. Remembering those things helps mend my heart.

I can't live in guilt, I can't live in the past. As I learn how life looks after Noah, part of it looks very bright because the people who knew him like I did, are still in my life. There are many things ahead that will be wonderful even though Noah isn't here with us. There are opportunities to share Christ, make Him known, change lives, touch lives, and help other families who's little heart babies are here on earth and need care. The more I live in the what ifs and whys I cannot make a difference in the now and future.
I guess the trip to FW was bittersweet, but mostly it was another stitch in the mending process. I know not everyone is as blessed as us to have such amazing people and relationships as we have had. I also know that not everyone has the support system we do.
So, if I seem just a bit obsessed with "noah's staff" it's because knowing them and getting to love on them, keeps me serving, loving, hopeful and moving forward, not stuck in the past or in a pit. I look forward to seeing all that God does in the future, especially at Cook Children's Medical Center and how we will be involved.

So, today has been a new day. Productive, happy, blessed and calm. New mercies are available. His grace is sufficient. Thanks to God's faithfulness, graciousness and sovereignty, Noah is whole and home, and I am not lacking in anything.

Psalm 63:3 - Because your love is better than life, my lips will glorify you.

Thanks and love,
shaina

So, happy nurses week to my friends, now family. love to y'all, always. 

He Makes A Way

I remember January pretty well...sometimes life in ft worth seems like one big blur. Other times I can pick out days of the journey like they were yesterday. This particular day in January was one that we thought was going to be one of our last days in Ft. Worth. We didn't know if Noah was going to make it through the night. We stayed in his NICU room (tiny but private at least) he had a TON of machines and meds hooked up to him. Just a week or so before he was down to .5 liters of O2, and was at full feeds and doing well. This turn was a quick one and we were praying for him to make it to the OR, on top of that, to come through surgery (again). We decided to get some fresh air. I had just read the book, The Circle Maker. It is a good book. Read it. It discusses prayer and praying in faith, for long periods of time, for heavy issues, for all sorts of reasons, etc. It inspired me to pray deeper for healing for Noah. I asked nick if we could walk laps around the hospital. Circles you could say. We got through the first lap pretty easy and I said, "lets walk around the hospital 7 times, like Jericho" Nick would do anything for me during this whole journey with noah, so he agreed and we continued. We talked, we prayed, we talked some more. I remember it like yesterday. I realized I had walked out of the hospital in my slippers and was too stubborn to go get my shoes while we had already walked 3 of 7 laps and I wasn't going to stop. I had blisters the next day, but I was glad. I felt something in the midst of the numbness. We talked about life on either side of Noah "making it or not". We talked about how life would look, how we would cope, the things we would deal with, either way, the life ahead without Noah here and the medical lifestyle behind us, or with Noah and alllll we would endure throughout life with him here. It was a hard hard talk. We talked about Noah dying. We tried so hard not to say, that he was going to die with certainty, because we were walking and praying in complete faith that God was going to heal our son on earth. At the same time, we knew the severity of Noah's condition and how hard death was knocking on the door. I hated talking about it. Please hear me when I tell you that I never once wanted my son to die. In that same breath, I remember feeling an ease and a relief I had never felt since the day we found out about Noah's condition while he was still in my womb. I don't want to sound cold, I want to testify to God's abundant outpouring of provision for me, mentally and spiritually. I didn't know if Noah was going to make it through the night, much less another month. Nick and I grew in that hour or so walk. Those 7 laps took us to a level in our relationship that some couples never get to. To talk openly about your child's possible death is not something couples usually chat about. It was a cold day. It was uncomfortably cold. It hurt to walk into the wind when we turned the corner on to the front of the hospital's main drive. It was nice to walk between the two hospitals where the wind was blocked. We laughed because I didn't want to walk across the grates in the sidewalk. I always walked around...nick finally got me walking over them by lap 6. I remember it beginning to sprinkle, but we didn't stop. We kept going. Laps 5, 6 and 7 were hard, but we did it. We figured it was a couple miles or so...not a long distance I suppose. In slippers, it seemed much longer. In retrospect, it was a prophetic walk...I see how God worked through that walk. I know without that talk, Nick and I would not have been prepared for any of what was to come. When the time came to give Noah back to the Lord, forever, we had an empowerment only from Him. When it came time to discuss final plans for Noah's burial, services, etc. We had discussed it. We didn't feel like we had to dance around the issues at hand, because we had taken God's hand that he extended down to us one Sunday afternoon on a long walk. I look back and sometimes I feel guilty for even talking about Noah dying before he did, because he got through that surgery amazingly. He recovered from that surgery pretty well. Not fully. He fought for another month. We thought we had discussed it all for nothing, but we were glad we had talked about it and had gotten to a place together that we didn't think we'd ever have to go to. We were thankful that we have such an open relationship that we can talk about anything. We felt relief that our son made it through this "valley of shadow of death". we then moved to talking about a medical lifestyle, how Ava would have to not go to public preschool for health reasons, how the house would have to be adjusted, how our life as we knew it would be different because we would have a "heart baby". We got excited about the future, even with all the hardships ahead and felt proud that we trusted God enough to talk about how we would trust him and walk with him, even if noah died. Yet, he was gracious to us and let us keep Noah here.

Then February 22 came. All the discussions we had in January came rushing in. The fact that we had talked about it all prior, gave us the freedom to just let God handle things and allowed us to just soak Noah up for all we were worth. I remember being able to ask hard questions that day, because God empowered us to ask them. Everything we went through for those few weeks in February were the hardest things I've ever experienced.

I remember telling Nick at some point probably between lap 4 and 5, that if Noah died, we would be ok. Somehow, some way, we would be ok. God would provide a way for us to find a new normal and a joy in the midst of the sorrow, etc. I probably had the ability to even say those things because I didn't think I'd need to ever go there in my mind or in my life. Or maybe I could say those things because God was preparing the way, loving me so much to give my mind cushion and grace prior to the pain.

Why my son Lord? Why in February instead of January? Why after such improvement? Why at all?
Why would Nick and I walk 7 laps around a fairly large hospital in 40 degree weather, while it sprinkled on us, in slippers, in faith, begging and pleading for His life, for life with him, all to be denied that life....
Why why? Why give us relief that ended up feeling like a trick?

God's ways truly are mysterious, but they are right. They are true. They are solid. I will never actually know why God allowed me to carry a son for 9 months, touch him for 5 and then spend a lifetime loving him from here. This walk has been one that God has been preparing me for my entire life. I don't know why He chose Nick and myself to parent a baby long enough to fall deeply in love with him, only to give Him back. I don't know. I don't know why children die before their parents. I don't know why God allows things to happen the way he does. I DO know that he knows best. Even when I can't understand, when I actually can't wrap my tiny brain around a thing in the world, He doesn't have to make sense to make disciples. In fact, it seems to me that he usually doesn't make sense. Faith tends to not make sense of anything, but it makes it through.

He has never made sense. The gospel doesn't make sense. Why would anyone, God in particular, become human, die a death he didn't deserve, all to save a people who didn't defend him....the list could go on and on. God doesn't always make sense, but he always makes a way. He always always makes a way.
Sin in the garden. Death on a Friday. He made a way.
Friday death. Sunday risen. He made a way.
Scared stiff in my bed, last May. Sharing my heart, freely, the next May. He made a way.
It's been a little over 2 months since Noah died. He makes a way.
I still sleep with Noah's blankee. He makes a way.
Ava is almost 2 years old. She was 15 months when this all started in September. He has made a way for her.
We've gotten into a fairly "normal" routine of life again. He makes a way.
Many people have been touched and changed by Noah and his story. He makes a way.
I have been able to know God on a level far deeper than I ever imagined. He makes a way.
I have lifelong friends who will always connect me to my son in a way I cannot explain. He makes a way.
There is a whole world of ministry ahead for parents, moms, family members, etc who love and know heart babies. He makes a way.
Ava calls all her babies "bubby". He makes a way.
Ava knows that Bubby is with Jesus and Jesus and Bubby are in heaven. Ask her. She'll tell you. He makes a way. PRAISE GOD he made that way for us to be with him again.

There is always something to be thankful for. He makes a way.

God doesn't always make sense, but he always makes a way.

I'm letting Him make my way through this life I now know. This life stings a lot. This life without my baby boy is not easy. It isn't the way I wanted it to go. This life is good though. It is what we make of it. I don't know what it will feel like to walk into Cook Children's Medical Center on Saturday, but I know it will remind me that what we went through really happened, that Noah really lived and breathed and made a mark on many people's lives. The sting of walking into that hospital and not getting to touch my baby will happen. I can guarantee it, but the joy of seeing, catching up with, hugging on and thanking the CICU team will be sweet medicine for my heart. They knew my son as well if not better than me sometimes. Getting to enter Noah's world again, means that Noah happened. Sometimes being in this world, at home again, it feels like Noah is just a dream.

He makes a way. He is good. I can't always see his way clearly, but I can always trust His character.
I miss my baby. I miss everything about him. I hate that I have no new pictures to show, stories to tell, or milestones to celebrate, but I am thankful for all that came about because of Noah and how my life will never be the same.

" A voice cried in the wilderness, prepare the way of the Lord" Isaiah 40:3

Let Him make your way,
Noah's mommy

Permission

Where to start? The last few weeks have been a bit up and down for me. I have had a few terrible days and a lot of decent days, even some great days. I suppose I have been struggling with "figuring out" what life looks like from here. When will life feel right? Will it ever feel right again? I've come to a place where "why" is the only question. I understand he is good. I know he is sovereign. I can even accept his control and his decisions and plans for our family and my life personally. I don't even really need an explanation or a big answer from God as to why. Why anything. Of course, my why questions vary daily, sometimes by the moment. Why death? Why 5 months? Why MY son? Why heart defect? Why is it that now, every day of my life will have a hole in it? Why is it that every time I see someone else holding their baby, complaining about night feedings, struggling with  normal daily baby issues that I just want to shake them and say, "YOU GET TO HAVE YOUR BABY HERE WITH YOU". Stop complaining, be grateful. I tend to fall back on deep grace and pray through those times of struggle, for myself mainly, but for those struggling mommies to just take a breath and soak up their child. I also see another side of it that I find myself trying to remember the struggle and pain that my baby endured, daily. I still come across facebook pages and "pray for so and so" links so often and I hurt for these kids, the parents and the families of these sick kids. I know how it is to not be able to "fix it", to "kiss it better", to just be able to give their kid some Tylenol and it make them well. I know what it's like to plead and beg and cry out to God to heal my child. I know how it feels to be away from all things normal, my spouse, my other child, my support and cling to my faith for every single breath. I know how that desert feels and it is hard. It hurts. It is scary. It is draining. I know that there would be just as much struggle and fight in our life, even if Noah was alive. With hospital stays, more surgeries, heart caths, possible transplant, continuous doctor visits, appts, medicines, etc etc.So I know either way, life has its struggle and its thorns. I choose to believe that God's goodness was showered over Noah and that he relieved him from this fallen world where heart defects happen and children are born sick. 
The fall of man has everything to do with my why question. Why Noah? Why sick kids, ever? Why childrens' hospitals? Why heart defects? Why do children die? Why do 5 month old babies die? Why do I have to deal with pain, every. single. day. of. my. life. Why Lord? Why oh why oh why is this our reality? Because man chose to sin. Sin has allowed our world to have pain, sickness, and death. (in our minds, death that is too soon) The fall of man began a slow and very painful existence here on earth. I mean, yes, we have blessed and good lives, don't get me wrong, but look around. Babies are being killed, before they even have a chance to live in the world, babies are born with broken hearts, ailing bodies. Mommies and Daddies have to bury their little ones. Sisters and brothers have to learn to sacrifice so much for their sick sibling. Families move closer to medical centers to be near their doctors, people spend months and months away from their homes to find help for their little ones. There are things like Ronald McDonald Houses, home health care for children, rehab facilities for children, etc etc. HEAR ME when I say that I have only one answer today for my why questions. There, I'm sure, are many other theological answers for my why, but the only one that matters to me today and will help me sleep tonight is this. 

His grace is sufficient. 

You see, all this fallen world shows us is hardship, death, bitterness, sadness, tyranny and abuse. This world is full of sin, anger, hurt and rage. Whether you have a child who is sick and will struggle their whole life with that ailment or if your sweet, precious little one has gone to heaven, HIS GRACE IS SUFFICIENT. Whether sin has ravaged your family through and through, if you feel as though your body, mind and soul have been abused from day one and there is no way you are material to be loved, or if you just flat out wish you didn't have to get up tomorrow, HIS GRACE IS SUFFICIENT. From the deepest of sins, the heaviness of betrayal, the longing for a child you cannot even bear. HIS GRACE, HIS GRACE. I do not know how to counsel most or any of your heart's issues or needs. I do not even know how to get through my own pain and struggles a lot of the time, but I do know that His grace is sufficient for EVEN ME. His power is made perfect in, EVEN MY WEAKNESS. Do you realize that he died for each and every situation that we could possibly face because of a fallen world? He bore that on his person. He died to provide a way. His rose again to defeat death, sickness, illness and struggle; not here on earth, but for us to join Him in glory. Soak it in.

So, here I am, just begging God for grace because right now all I want to do is hold my baby. All I want to do is stay up all night and rock him. All I want to do is post pictures and brag on all the sweet things he is doing and all the new milestones he is making. His grace covers me. In the moments when I don't feel like I can cry anymore and there I go crying some more, he's there. When I wonder why I had to be the mommy with a "broken one", with a child who's heart never worked right? When I ask God why I have to live every single day with a pain that is so deep and gets deeper every passing day, he simply responds with, 

My grace. My grace. My grace is sufficient. My grace is sufficient. For even you. Dear one, for even you. Especially you. 

I have had some realizations lately that grace comes in various forms. Grace in my pain doesn't mean that I don't cry or that I don't miss him as much each day or that I can just smile my way through the rest of life. Grace doesn't even mean that this will EVER get easier. What grace in this season of why means that I can find the joy in the mundane. I can rejoice when others are blessed with new little lives. Grace is when I find myself crying at a random moment and my precious little girl crawls up in my lap and says, "mommy mommy" and hugs me tight. Grace is when my husband brings home a bouquet of flowers because he knew without me saying a word that I was struggling that day. Grace is when someone I have never met messages me and tells me what an amazing son I had and how much he helped to change their life. Grace is becoming so lost in worship with my church family that I can actually feel the presence of God and almost reach out and hold my son as I know he is worshiping with us. Grace is when I stop by our church office at least once a week just to be loved on and visit. Grace is when I workout even though I don't want to because I want to better myself for the Lord and I am finally obeying Him in parts of my life I have not been obedient in before. Grace is asking Ava what her baby doll's name is and her replying with, "bubby". Grace is when I curl up in bed and just sob, but as soon as I lay my head on Noah's blanket a calm rushes over me and I go straight to sleep. Grace is laughing for hours with three silly kids on a trampoline on a gorgeous day. (i love my niece and nephews) Grace is knowing that there will never be a day that I will ever have to wonder or worry about my baby Noah. He is whole. He is healed. He is safe and sound in the arms of the Father. Grace is knowing that someday, God will bring about a freshness and a newness of life to our family that we cannot imagine. Grace is seeing a family I know continually worship and praise God even when they feel as though they too might lose a child, simply because of a crooked system and another country's rules.  Grace is also the means by which God changes our hearts and our minds. Grace helps us to see anew, life as we know it. 

2 Corinthians 12:9

One of my favorite preachers put it this way, "Grace is not a licence to sin. It is permission to change." 

Permission to change. Oh how I have asked God to "change me"...when he is saying, ok child, MAKE THE CHANGE. So I find that in saying, "not my will, but yours be done" and then releasing Noah to the Lord, I was able to free myself from the prison of my ways. Life can be done God's way, which doesn't mean it is easy, but means it is worth it. I would never choose for my son to die, ever ever ever, but by grace, I was given permission to change my "I have to have control" sin and let God have his way. It is the hardest thing I've ever done, but it has released more freedom in my life, more passion for His ways and a release from everything I thought was supposed to happen and given Him true reign. Grace has given me permission to not be in control, to not be fighting God everyday for the reigns of my life. He has given me permission to change and truly know Him. 

Somehow I feel as though I have not made any sense whatsoever. I pray that grace allows you to see or hear clearly what my heart is trying to convey.

In the moments when I cannot seem to function any longer, I HAVE to dig deeper. I HAVE to find a lesson and stop to hear God's Word for me or I linger in self pity, despair and frustration. 

Through God's grace, I have permission to miss Noah, to want so badly to touch him, to imagine what life would be like with him here and then in the same moment, be ok that it's not that way and rejoice in the life I have and know that I have never ever been more eternally minded in my life. Thank you Lord and thank you Noah for helping to shape my view of life and truly living. 

I know I could continue on for paragraphs about how his power is made perfect in weakness. Maybe next time. 

thank you for your continued prayers for me as I learn how to do life again....

Shaina