Tuesday, April 30, 2013

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

Wednesday, April 3, 2013

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