For the last 2-3 weeks, as Ellie has remained more "status quo" I have been able to think a little more about what exactly I believe regarding hope and faith - how to reconcile my reality with what I know to be true of God.
For awhile, I struggled with the idea of "hope." How could I have have hope as described in the Bible with what I knew to be very real possibilities. And what about faith? Is my faith somehow less than where it should be if I accept the reality that Ellie might not survive? If I prepare for the possibility of her death, does that mean I don't have faith? I read a book recently by Angie Smith, I Will Carry You. Angie lost a baby girl a little over two years ago. (She commented on my blog about a year ago - I was a bit starstruck! - She also emailed me when everything first began happening with Ellie in April!) I digress.
In her book, Angie describes praying as Mary & Martha did when they sent a message to Jesus about their brother's sickness. They don't tell Jesus what to do or what they expect Him to do - though they clearly have hopes & expectations. They simply tell Him what the problem is (via messenger) & let Jesus determine the solution. Angie suggests praying like this - telling Jesus our problems rather than providing for Him the solutions we want. I hadn't read the story like that and found her insight very powerful. I also reread the story recently of David and the death of his firstborn son with Bathsheba. David fasted & prayed - begging God to spare his son's life. God did not answer David's prayer the way he prayed and David accepted God's answer- much to the bewilderment of his servants, who had observed him fasting and praying for so long. How could he accept the death of his child when he clearly had prayed & begged & fasted - believing God could heal him?
Two similar stories - both involving disease and the impending death of a child. Both feature people of great faith. The women didn't tell Jesus what to do (though later they do tell Him that if He had been there, Lazarus would not have died. Clearly they had faith that Jesus could save him.) David does specifically request for his son's life. He also has faith that God can save him.
I saw a sign recently that read, "Faith isn't believing God can... it's knowing He will." That rubbed me the wrong way - it felt so arrogant to assume that God will do what I want...or that I can know exactly what He will do. Last time I checked, "mysterious" was one of His qualities. His ways are not my ways. As He tells Job in Job 42 - who can grasp Him? Thankfully, He is a big God - one beyond complete human understanding. He is God... I am not.
I have been begging God for the life of Ellie Grace. I am going to Him with specific requests. In my humanness and in my mother's heart, I am compelled to do so. But, it is always in the back of my mind that I am not promised the life of my child. I can not find a single scripture that guarantees me my child's life. It has been suggested to me that because so many people are praying, God will save Ellie's life and "heal" her. I do not believe that is the case. (I mean - I believe He could save her life & heal her... I do not believe that whether or not He does is determined by the number of people praying. Her days have long been ordained.) God is sovereign and His ways are beyond understanding. I expect God to answer my prayers. But I fully recognize that He may not answer them the way I desire. He may choose to allow her to live but to not completely heal her until Heaven. He answers every prayer - sometimes with a "yes," sometimes with a "no," & sometimes with a "maybe" or a "wait." (Interestingly, the other night, Will & I were discussing various emotions and what makes us feel happy, sad, scared, angry, confused, etc. He mentioned that he feels angry & like "screaming" when Mommy tells him "no." It reminded me of my very human reaction - much like a two year old- when God my Father tells me no.) I do not believe I am entitled to expect Him to answer the way I necessarily want - that feels arrogant to me. I do know that through the sacrifice of Jesus, I can humbly & yet boldly approach His throne in prayer - I can make my requests known. But to tell Him what to do feels arrogant.
Perhaps this means my faith is weak. As I continue to research some of what Ellie has, I am appalled at the statistics for abortion. It breaks my heart to see how many parents choose to abort babies with her various issues. Some of these babies would not have survived anyway - yet their lives are ended too early. My heart breaks for these mothers who are perhaps not given adequate information or a loving support system to encourage them in carrying their babies to term. I will always choose life for my children - it's no choice, really. Sometimes I think that choosing to carry a child to term and to fight for whatever life you can give them requires far more faith. Some days are so difficult to face the world and the questions and the doctors and the therapies and the sense of panic and fear and overwhelm ... yet choosing to carry the baby requires far more faith and courage than giving up. Being willing to risk falling in love for however short a time may be given requires faith. (It's a little late- I've been in love since I first saw the little purple line on a test back in the early morning hours of December 22!)
Based on some conversations I've had, I began to realize that faith & hope made more sense and reconciled with scripture when I changed my context for thinking about them. I began to recognize that I do have hope, regardless of the outcome for Ellie. I have a mother's hope of knowing and raising my daughter. I have hope for life on this earth for her. But, I have a greater hope - I have the hope of knowing I will know her in Heaven if I do not have that privilege on this earth. Based on scripture, I have a certain hope of where I will spend eternity & I can have the great hope that if He allows my daughter to die before me, then she will be waiting for me.
And I have faith. I have faith that He is a God of miracles. But I know also that His miracles often come in different forms than I anticipated. I have faith that He can do a miracle for Eleanor Grace. I am confident that He will. But, I am also well aware that the miracle might not look like a miracle at first. It might be different than I anticipated. I do know that it will be ultimately good - no matter what. I have certainly learned this truth in raising Will - though we prayed for two hands, two feet, & twenty digits, God did not say "yes" to that request. The outcome has been so much better than I ever imagined. Watching daily a child who runs without feet- that is my miracle. Had he been born with feet I would have taken that for granted.
I have recently read Carol Kent's A new Kind of Normal & James Dobson's When God Doesn't Make Sense. If you could see my copies of these books, you would notice that nearly every third page is turned down! They are full of wisdom & insight & met me exactly where I am.
One of my recent struggles has been in being honest with my feelings - which are all over the place (have I mentioned lately that I'm 7.5 months pregnant & hormonal!?!?) I have struggled when people have so kindly told me that because Ellie is sick, people who normally don't pray are praying. While I am thankful they are praying & I am thankful her little life is making a difference, it takes everything in me not to scream - why my baby?!? Can't God reach those people another way? Of course, He can. I realize it is selfish of me, but as a mommy, I just want something similar to "normal." - I don't want my baby's pain or life to be in vain but I also would prefer those people be reached another way. Others have attempted to tie everything up with a neat little bow - telling me they are praying & "just feel everything will be fine" or quoting Romans 8:28 to me & reminding me that "all things work together for good..." I love Dobson's response to that verse being used as a cliche - he notes that God can bring good from all things but not all things are good. Everything might not be "fine" for Ellie on this earth. I am thankful for Will & Ellie & I would not change them, but everything is not always "fine." Even though I have seen repeatedly in raising Will that the blessings of having a child with a disability outweighs the pain, everything is not always fine. It was not fine with my heart yesterday as we walked into church when, out of nowhere, my two year old little boy told me that "someday, Mommy, when you lose your toes, I'll share my zancos (prosthetics) with you." As my heart broke at his tenderness, I was so thankful for my sunglasses to hide my tears. I couldn't focus throughout church as I kept wondering how in the world I was going to manage answering questions from two precious children. Sometimes, it's not "fine." It's not fine with me when children are cruel to him or adults won't keep staring or ask rude questions. It's not fine with me that I have been woken up every single night for the past week by Will who is sobbing - for sometimes up to an hour - as his "feet/legs" hurt from his new prosthetics. He begs me to take him to a doctor (we're going this week) to help them feel better. I can't seem to make it better- despite motrin & rubbing them in the middle of the night. It's not fine all the time.
There are a lot of things we don't understand about Will's & Ellie's conditions - neither can be explained by science at this time. I continue to claim that God did not make a mistake with my children. But platitudes that try to explain them away in a spiritual context frustrate me. I love how Dobson says it is "better to acknowledge that we have been given too few facts to explain all the heartache in an imperfect, fallen world." Some have suggested that perhaps my children's' medical conditions are to strengthen our faith, to bring others to Christ, to earn ourselves rewards in heaven, or any other number of reasons. I love what Jim Conway says in Dobson's book, "When you start reaching for puny answers like that, it dehumanizes those who suffer and insults our magnificent God who loves and cares for the oppressed." Maybe we'll never know the why until we get to Heaven (at which point it won't matter probably.) Maybe it's just because He will get glory from their lives (John 9.) It's not that I don't want all those results; it's just that as a human mommy, I want my children healthy and to endure less pain in this life. I want God to accomplish those results in less dramatic ways sometimes!
I long to have Ellie live. I ache to have her in my arms (not yet, of course!) I want to watch her learn to laugh, to grow, & to play with her big brother. If she lives, she will have some serious medical conditions. That is okay as I want her alive - but it doesn't take away from the fact that there is pain, grief, & overwhelm associated with these conditions. It doesn't take away the fear associated with complications that sometimes result from the necessary surgeries and procedures - and that could still lead to death. Sometimes I think only a parent of a medically fragile or disabled child can really grasp the bizarre balance between being so joyful and thankful for a living child while also grieving the loss of normal, heartache, & pain associated with their life. I can't adequately explain it but I struggle when people have minimized that pain. I do want her alive and I do accept that her life means being medically fragile and having some very serious issues to contend with. I embrace her exactly as she is formed. It's just that sometimes I feel overwhelmed as I read the intensive number of therapies required, the likely surgeries she will need, the complications to watch for, etc. It overwhelms me as I already have a child in therapy, who might need surgery, etc. It's overwhelming to wonder how I will somehow find time for friends, for being a wife, and even for showering!
I know people don't know what in the world to say to me. I recognize that my emotions are often out of whack (hormones plus doctors days = crazy lady!) The best comments have been from those who acknowledge that they don't have the words but are able to cry with me or laugh at life with me at any given moment (depending on my mood!) I appreciate those who give me scripture and hold me accountable (maybe not realizing it) that my faith and hope can not be centered on this earth. I love those dear friends who give me the grace to somehow be insane in my fears and anxiety - to feel grief at the possibility of her death and bewilderment at how to do life with two children with distinct needs. God doesn't owe me an explanation. He is God and I am not. I owe him my loyalty. Since the beginning of this "Ellie crisis", He has constantly reminded me that He is God. I am learning that faith doesn't mean claiming He will do something He hasn't promised me. Faith doesn't mean life on earth and it doesn't mean healing and it doesn't mean answers the way I think I want them. Faith means holding on - it means continuing to trust and believe Him for what He has promised (to be with me, that He is creating Ellie, that He is sovereign, etc) It means choosing Him regardless of the outcome with Ellie.
I have hope because my hope has an eternal perspective. I have to remember that life on this earth is not all there is. I have hope because I have a little boy who is daily showing me that the world doesn't get to define "quality of life." I have hope because I know what joy in sorrow means. I have hope because I understand that my capacity for joy is greater because I have known pain.
Faith means that I do have hope but I also recognize that while He can save and He is most certainly able - I don't know that He will (on my terms.) But I do know that whatever the result, I remain His.
Faith is knowing He can... & trusting Him if He doesn't.
1 thoughts:
Katie, I love you sweet friend and am continuing to pray for you...I trust that when I don't know what to say, I can just talk to God because He knows...
Sarah
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