On Monday, after dropping Sierra off at school, Bodie and I headed out in the rain to the bi-weekly MOPS (Mothers of Pre-Schoolers) Bible study at our church. I love rain...from inside my nice, warm house, all cozied up in my sweats. So I contemplated not going - almost changed my mind as we were heading there. But I felt a stirring to go. And, besides, Bodie had a cold coming on which meant he was cranky and clingy as all get out. So I figured what the heck, even I got 10 minutes away from him, it'd be worth the drive in the rain! ;-)
After dropping Bodie off in the nursery and sitting down with my fellow mommies, our leader told us we were covering Chapter 5. I turned to it to find it was titled "Eternal Life" and was the story of Lazarus, his resurrection, and Martha and Mary's response to his death. The "discussion starter" was "What are some of your honest feelings and fears about death - especially when a family member or friend dies?" Holy.Crap. Ok, God I get it, loud and clear. You don't want me to avoid this any longer - you want me to open up, and do it in a safe environment, with fellow Christian women who can walk me through it.
So, as these sweet moms went around the circle talking about their grandmothers passing and fears that they would die while their children were still young, I realized how different my life is than theirs, how much more I have seen, how much this CHD walk has changed me, how much it has changed my perspective on things. When they came to me, I took a deep breath and got out "I think I have a different perspective on death because of my son. When I think of death, I don't think of grandparents dying. Not anymore. I think of kids, most of them under the age of 5, of babies, of smiling, happy toddlers taken from their parents far too soon..." and then I just started crying. And man, the floodgates just opened. I talked about my deepest fears, about this scary walk our family is on. These poor women. They thought they were coming to have a fun little Bible Study, and then Debbie Downer showed up for her own personal therapy session. ;-) Most everyone was crying by the time I was done talking.
You see, I have been struggling with this A LOT lately. I'm scared. I am so scared I cannot even put it into words. I don't WANT to put it into words, for fear that saying it might make it a reality (as if somehow we could jinx God's plans - I know, I know - it seems ludicrous, but let's face it, half of what we humans do is pretty dang stupid to begin with, right?).
Bodie has MAJOR open-heart surgery coming up and I can't avoid that. Up until now, it's sort of been looming out there, somewhere, in the distance and occasionally the fears would come up, I'd blog about it, get it out of my system and then I'd push them back down knowing we were still a year or more away from it. But, the past few months, as I've watched Bodie get progressively more blue, tired and winded, it's come back up and I find myself unable to push the fears down. Every time he takes a break, or asks me to hold him, it hits me again - his little body is ready for the Fontan. We can't avoid it much longer. We're looking at next June/July if he can hold out that long.
Bodie had an EP (Electrophysiology) appointment this week at CHLA and after so many nurses and doctors asking how soon he would be in for the Fontan, what his energy levels were like, what our "Plan B" was if he couldn't hold out until June/July, etc., I seriously just wanted to vomit. And honestly, if I didn't have the kids with me and all up in my business in the bathroom, I probably would have. But, you know, I didn't feel like having to explain it to them! So I just settled for an overwhelming feeling of chest tightness and nausea. So, needless to say, my heart has been really unsettled lately. I feel like we are just closing in on the Fontan and I have a hard time breathing my way through that thought.
Odds are, Bodie will do very well with the Fontan. Most kids do very well with it, are out of the hospital within a week or 2 and home and recovering. Within a few months, most kids are better than ever, have more energy than ever, etc. But, not all - 2 of Bodie's heart buddies went into heart failure and needed transplants within months of their Fontans this past summer alone. And one of them passed right after her transplant just a month before her 4th birthday. The fact that the statistics were on their side are of little comfort to those families who find themselves on the losing end of those statistics. And, at the end of the day, this is STILL major open-heart surgery with all of the attendant risks, not just to his heart and his body, but the neurological risks of being on bypass to his mind, his sweet, silly, feisty little mind. So, this fear, it is ever present with me, creeping into every facet of my mind, of my body, of my spirit. It's a lot for one person to take on.
So, when our Bible Study was about eternal life, and about how EVERYTHING God allows to happen, including whether or not he performs miraculous healings is all about revealing His glory, not about what we as humans want - I knew God called me to MOPS this week for a reason. Because it was a lesson I needed to hear and allow to sink in. Martha, even in her anger at God for not being there to save Lazarus when he was dying, yet still believed in God and trusted Him. What a great example of faith.
One of things we talked about was that God calls our primary focus to be on HIM and on our relationship with Him, not on material things. And material things are pretty much everything else, including our family and friends. I had never thought about people being material things, but I suppose in this context, they might be considered just that. That's not to say that we are to ignore our family and friends or that they aren't more important than other material things, but simply that they are not as important as God and our purpose in HIM. When we focus on HIM and daily ask Him that our lives be used to His glory, to draw ourselves and others around us to Him, it changes our perspective. We are able to trust Him more deeply and to rely on Him more fully. This was such a reassuring thing for me to remember; to remember that when Bodie was born, our greatest prayer was that his life would glorify God. And still today, that needs to be our prayer.
We also talked about how Jesus wept when we saw Lazarus dead, how as a wholly human being, everything we are feeling, he has already felt. Just because we are focused on God and His glory does not mean we are not allowed to mourn, allowed to anguish over the loss of our loved ones. Last week, as I wept to my best friend Valerie about my fears over Bodie's upcoming surgery and the uncertainty, she gently reminded me that "...there is NOTHING going on here that God doesn't know about. And God in heaven walked through 33 years of KNOWING beyond a shadow of a doubt that his Son was going to die. God KNOWS your fear and agony." What a blessed reassurance and a powerful reminder. I can bring my fears of this unknown journey to God, because HE KNOWS. He knows what it is like not just to think you might lose your son, but to know without a doubt you are going to. How much more can he identify with my fears that I might lose my son? I can cry to my King and He can give me comfort. What blessed reassurance this is to me. And what blessed reassurance that he has placed Valerie in my life to give my comfort in my dark hour. How she is able to, in spite of the fact that she has never walked in my shoes, provide comfort to my soul, is an indescribable gift. I am daily thankful for her gift of friendship, love and support.
So, today, although I am still in fear, I walk a little lighter, a little of my burden unloaded. My goal in the upcoming months is to pray daily to turn this over to God more and more, to truly surrender my son to him. I'll be honest, I surrended my son to Him the day he was born and in my deepest of hearts, I had surrendered him completely. But since then, I've started holding pieces of him back, to an incomplete surrender. Now that I know my son as Bodie and all his intracies and amazingness, I've held back - I don't want to let him go, to surrender him to God's plan, to His glory. But I have to. And, in realizing that, my fears make sense. So, I'm in the process of letting go - of loving my son as much as humanly possible, but still, at the end of the day, knowing that I am only his caretaker, here to love him as long as I have him and knowing that he is ultimately God's.
I love this child so much. And as powerful as a mother's love is, God promises me that his love is deeper. I cannot even fathom that, but His word promises me that it is so. My love is imperfect; His is perfect. What sweet surrender to my soul - to surrender my son to the only one who can love him more than I. What a blessed gift He gives us.
I was more nervous about the Fontan than any other surgery. I totally get it.ReplyDelete
It's okay to be afraid, and God lets us know that it is a natural healthy part of being human. Jesus was afraid before his sacrifice.ReplyDelete
You are stronger than your mind could ever comprehend. I have faith that Bodie will do well and come out well- and I will be praying for him and with you in July.
Bodie has been heaven on earth. A miracle every moment that he has had breath.
We are thinking of you and praying for your whole family as July comes up.
What sweet fellowship when friends cry with you.ReplyDelete
Thank you for sharing. I am not able to put my words together as well as you. You described it perfectly....I always push the "someday surgery" thought way down deep and it tries to come out every now and then and I just can't deal....but it's unavoidable and I will have to face it someday. I hope to be able to give it to God, but I am human and it's hard. Melanie Von BurgReplyDelete
Thank you for sharing this. N- and Bodie are on the same page. We're planning the Fontan next Spring. I know that feeling when your chest gets tight and you just want to crying, but don't. It's happening this week as we are anticipating another surgery for my husband too. A lot of this that you described is head knowledge, but when God leads you through things like this it gets into your heart and you really know the sacrifice it takes to put God first. I'm so proud of your desire to follow Him and trust Him fully. God will honor that...whatever next summer holds. Please keep us updated as we pray for Bodie and your family.ReplyDelete
I love this post my sweet friend - praying for you and your sweet boy!ReplyDelete
Amy...Amy....Amy. I feel my heart tightening as I read your post. I literally cannot imagine the depth of your terror, anxiety, fear and trembling. It is truly so frightening to read about. I wish I could say something to make it all go away and tell you the Fontan will go perfect, and blah blah blah. But i can't. But I will agree with your sweet friend that there is NOTHING going on here that God doesn't already know about, have the ultimate decision on, and will walk with you through. I am scared with you. But I will pray with you that God prepares your heart and bodie's....You are an incredible mama and your family is absolutely awesome. I wish I lived there so I could hug you or take you to wander around Target or coffee or something. Know you are loved from OHIO :)ReplyDelete
A wonderful post, I totally agree and appreciate you sharing this. I heard something today that really made sense...ReplyDelete
"Courage begins when you turn your fears into prayer"
I too have had a difficult time completely handing Maddie over to the Lord, like you I was able to do this best before she was born and as a newborn, before I knew her. I found it helpful to imagine myself physically handing her over to the Lord...knowing she is in His hands is such a comfort when life feels so out of my control.