Bad Week in a Day

"Sometimes I have a bad week all in one day." - Will, age 3

Will said this in the car today. He was expressing his frustration about some toys he has. He gets really frustrated when he knows in his brain how to do something but he can't make his body do it. I'm confident he will eventually figure out how to do what he wants but as his mommy, I too get frustrated with how hard he has to work just to do simple things sometimes. I hate seeing him frustrated when he can't climb a wall at a park with another three year old boy because Will can't feel the "feet" in his prosthetics to know where to place them (imagine climbing on little stilts with feet attached - you would have no feeling there!) or he gets frustrated because he can't manipulate his little "fingers" to hook a trailer on a toy truck or because he realized today that his hands don't scratch when he runs them through his hair - and he likes to have his hair scratched.

Sometimes I don't know if I can handle the frustration of another child who can't make her body work the way she wants it to.

It's almost too much for me to bear sometimes.

I read today that statistically, parents of a special needs or disabled child will grieve with the same intensity and for the same length of time upon learning a diagnosis as those who lose a child.

I don't want to compare the grief of learning one's child has a disability to the pain of losing a child. I can imagine that pain although I have not personally experienced it. Based on the above statistic, however, I can conclude that maybe it is a very different type of pain - but a very real and very significant pain and the grief is also real and important to the acceptance of the reality of raising a child (ren) with a disability.

It comes and goes. It has been easier this time around although sometimes I wonder if that is because I am not really in my reality yet. I am living far from home & basically doing life around a medical schedule - I haven't tried to fit in friends and playdates and therapies for two and preschool and church and commitments and errands and running a house yet.

I'm living in a holding place.

I began (& finished!) a new book this week by Nancy Guthrie - Holding on to Hope. (Someone commented about this author on the blog & I have ordered two of her books - thanks, Kori! Love her!)

Guthrie describes the pain of learning of her daughter's diagnosis early on in the book. As I read, I noticed how eerily similar some of her daughter's symptoms were to Ellie's - specifically the positioning of her hands and feet. Hope had a form of AMC. It was fatal and she lived 199 days. We don't believe Ellie has that form although it was not one we tested for prenatally. If you've followed my blog very long, you could probably guess what I did as I read. I cried. I googled her daughter's syndrome to confirm that it was, in fact, one of the 400+ possible syndromes under the broad umbrella of AMC, just as I suspected. I googled further to make sure that Ellie didn't have the other symptoms. I thought about our upcoming genetics appointment with dread. And I fell asleep - I am a sleep deprived mommy right now, what can I say? And then I blogged about it. It's how I process and vent.

When I ordered the book recently, I had no idea how close to home it would hit. I know that the author had lost her daughter but I didn't know it was to a form of AMC. My heart grieved with her as I reflected back on the torturous months of pregnancy when we wondered if Ellie could live.

About two weeks ago, in the middle of the night, I had a sudden revelation. I was checking on Ellie for the upteenth time and I thought of Psalm 91 and how God doesn't sleep and is always watching. I told myself to relax and go to sleep - that surely Ellie would be fine for the next 2 hours before I fed her again.

And it hit me. I suddenly realized why I was checking her so often.

I am struggling with trusting God because my definition of what that entails has changed in the past three years.

I believe at one point that I understood "trusting God with one's family/spouse/finances/children/etc" to mean that I would trust God to take care of those things/people as I wanted Him to. I thought that if I trusted Him with my child's life, for example, than it meant I was trusting Him to protect my child on this earth - to keep him alive and healthy. In fact, isn't that what people often mean when they say, "Just trust God to..."

But the Bible doesn't promise us our health or our lives. God does promise to protect and to give us a hope and a future - but I believe He does not mean this to occur necessarily on our terms and conditions. His perspective is so much bigger.

And at two o'clock in the morning recently, I was reminded that I am called to trust Him. Trust Him, period. I don't get to set the conditions for what I am trusting Him for. I don't mean to imply that He isn't loving or that He doesn't want blessings for us. I just have learned that trusting Him means trusting Him regardless of the circumstances. He is worthy. He gets my loyalty simply because He is God. I get to trust Him when He gives me the answer I seek in the timeframe I desire. And I get to trust Him even when He doesn't grant the miracle I begged for (or He does grant it but not in the way I imagined or requested) - when my baby's life is not spared a miscarriage, when my son is not given feet or hands, when my daughter is born with hands and feet that don't function and masses in her heart and unknown muscle issues. I know that He is capable of answering the way I request. He is able. But that doesn't mean He will. And yet I have to trust that He is God - regardless.

Recently, a family friend sent a wonderful, encouraging e-mail to my mom. How in the world she can possibly sit down to encourage another family while in the depths of her own grief and pain and suffering I can not fathom. I am so thankful, however, for her words of wisdom and I am compelled to share them here. She writes from a devotional entitled, Streams in the Desert. The author refers to Matthew 11:3-6 when John is in prison. John's disciples find Jesus & ask, "Are you the one who was to come or should we expect someone else? Jesus replied, "Go back and tell John what you hear and see. The blind receive sight, the lame walk, those who have leporsy are cured, the deaf hear, the dead are raised, and the good news is preached to the poor. Blessed is he whosoever is not offended in me."
This is what our friend sent that has spoken volumes to my heart:

In many ways our confidence in God is tested; amongst others, by the multiplication of occasions when it is possible to be offended in Him. God can bring us into strong faith only by taking great liberties with our confidence. John is in a miserable prison and hears that Jesus is raising the dead and healing the sick. Most naturally he must think that if Jesus can do that He can surely get him out of this prison. Why does He not do it? What grace it must have taken not to question why He who possessed such mighty resources should leave him there undelivered in that dungeon! But Jesus left him right there with no explanation. One word would have opened those doors and let him free.
If we are to enjoy a close walk with God, we have to leave many things unexplained. We do not understand everything, but “what I do thou knowest not now, but shall know hereafter.: God could take burdens out of our lives and yet He does not. These are the hours which peculiarly fit us for the inheritance of the saints in light, when Jesus puts all around us the message: “ I can do it; but trust Me, though I do not do it.” That is just the point where hearts break. He has all power and yet He does not mention one word to you of deliverance. These are the hours that we will study with delight and amazement in the light of eternity: no explanation; faith nourished; the prison doors left closed; and then the message, “Blessed is he whosoever is not offended in Me.” – that is all!

This is exactly what occurred to me in the middle of the night. Well, not exactly. I wasn't nearly so eloquent at 2 am nor did I come up with that scripture. In fact, though I am certain I had read the verse previously, I had not studied it nor the context. Yet, this is exactly what I feel God has been teaching me and calling me to - trusting Him whether or not He acts according to what I desire. Trusting Him regardless of the outcome.

Trusting Him with my children - whether or not they survive.

When we experienced a miscarriage in September 2006, I remember feeling like God had hurt my feelings. I had begged Him for the life of that baby when the doctor first informed us of the loss. I knew He was capable of changing things and making that heart begin beating. When He didn't, I was devastated. My feelings were hurt. Yet, somehow, that was such a sweet time in my relationship with the Lord. I think our relationship became more precious to me as I sought Him out, told Him why my feelings were hurt, and began to understand what it meant to seek comfort in His holy arms. As I grieved, I began to realize that He was still God and He is good and though He was capable and had not saved that life, it didn't make Him less God nor me less loved. I simply wasn't seeing the whole picture. (Nor does He owe me an explanation.)

I am comforted to know that while on earth, even Jesus begged God and was told no. "While he lived on earth, anticipating death, Jesus cried out in pain and wept in sorrow as he offered up priestly prayers to God. Because He honored God, God answered him. Though he was God's son, he learned trusting-obedience by what he suffered, just as we do." Hebrews 5:7-8 MSG

I am called to trust Him out of obedience. I don't always feel like it. I was criticized a few months ago for not trusting God enough to heal Ellie. I just kept coming back to not being able to find anywhere in the Word that promised me her life or healing. I kept returning to John 9 - in which Jesus points out that the blind man was born blind so that God could be glorified. I like the phrase, "human impossibility amplifies God's glory." I believe God is going to get great glory through Ellie's life. In some ways, I have found in the last 6 months that trusting God somedays means simply getting out of bed and doing life. It means finding joy amidst painful circumstances. It means laughing at life and claiming He is God and He is good -even when life does not make sense.

I am convinced that God has received more glory out of the miracle that Will is without hands and feet than He would have had he granted us the miracle we prayed for originally. The looks of amazement when we are out and people see a small child run without feet are a testament to the Creativity of God. People think it should be impossible to function without hands or feet. By the grace of God, Will is proving them wrong. He is glorifying God by using the body he has and living with joy. I am confident the same will be true for our Ells. He wants the glory. Not that I understand His methods. And not that I don't grieve the loss of normal and the huge challenges facing each of my children. And not that I don't stand (or sit down tired) baffled at what in the world He is doing and why my children have to endure more suffering. Guthrie said it perfectly when she quotes her husband saying, "Our faith keeps us from being swallowed by despair. But I don't think it makes our loss hurt any less." But I remain confident that He will get glory and that provides a great purpose for the challenges in their lives.

I don't get all the answers.

I don't get what He is doing all the time.

To be honest, I kind of want to lay on the floor and kick and scream sometimes. I want to control how I trust Him. I want to trust Him for her life - so that I can sleep easier. I want to trust Him that everything will be fine with both of my kids. I want to trust Him that I won't endure any more heartache and that my children won't suffer greater pain. I want to throw a tantrum because I don't get to control that. I don't get to determine the circumstances or conditions for trusting Him. He didn't ask me if this is how I wanted to learn a deeper meaning of trust.

I just have to trust that He is God. He is good. He is good all the time. He has our best interests at heart, even when I don't understand. His perspective is so much bigger than mine. And I get to practice obedience in trusting Him with each of my babies. Period.

And thankfully, He is a God of grace who created my mother's heart and gives me the grace to work though my desire to control and my fear of letting go.

And, also, He gave me a precious daughter to cuddle in the middle of the night - knowing I am so thankful for her life and her sweet, warm body and little dinosaur noises - nothing better on earth except for maybe Will's warm, yummy breath when he wakes up and his warm body cuddled on mine.

So, my daily battle right now is to trust Him. To let go & trust Him that He is in control even my circumstances are not. To trust him - period without expectation that He operate according to my plan or timeline. He has a big picture that I can not fathom (Jer. 33:3 and Job 42.) And I am to trust Him without condition.

Which is easier said (or typed) than done.

Did I mention it is a daily battle?

I wrote the above just hours before driving Ellie by myself in the early hours of the morning to Dallas Children's Hospital. It was one thing to sit on my twin bed in the condo and type out the thoughts and struggles I had been having with trusting God lately.

It was an entirely different battle in my car on the tollway yesterday morning.

I confess that I am really struggling with this. I want to trust Him regardless of what happens. I know I am supposed to be obedient. It must become a daily choice for me - whether or not I feel like it.

In the car, I was begging Him. I was scared about Ellie being sick. I have read so many stories of AMC babies who are born just fine - I mean, they have AMC but there is no reason to suspect they can't live and thrive. And then they get sick and sometimes die due to complications associated with the AMC. I kept thinking about those precious babies while I drove. I worried about the respiratory complications we know are often present with AMC babies. And the doctor did share with us their concern that Ellie's airway muscles are likely weakened (hence the cute squeaking noise she makes when she is furious.)

And I told God "no."

I'm ashamed to confess that now. I don't allow Will to tell me no. Nor does he get to tell me what to do. He is the child, I am the parent.

So where do I get off telling the Almighty Creator of the Universe "no" and what to do with my daughter's life? He is my Abba Father. I am the child.

I hate it when my own rules come back to bite me! (As a side note, Will informed me last week that it hurts his feelings when I make rules. I told him that was too bad because this is his family and we have rules & he is stuck with us.)

Sometimes I am so afraid of what else we might endure. I don't know how much I can handle. I am afraid to trust Him to carry me through because I am afraid of what else He might carry me through.

And so I told him "no" - no, You can't take her; no, no more complications; no, no more surprises; no, no more drama.

And I thought about Guthrie and all she has endured with the loss of 2 AMC babies. And I begged Him, please, no. And yet she is trusting God. As I read her story, I realized she was eloquently sharing her own journey of trusting Him without condition and out of obedience- the same struggle I have been dealing with just different circumstances.

And later, He gently reminded me of the post above I had written just hours earlier when I was feeling so convicted about the calling to obey Him and trust Him - regardless of my circumstances. To trust Him regardless of the outcome. To trust Him without setting parameters for what I was willing to trust Him with. And I realized that I was scared to trust Him - scared of what that might entail, so I quickly had reverted in the car to telling Him what to do.

And I had to ask forgiveness for, once again, putting conditions on Him (& telling Him what to do.) Goodness, I am so thankful He is a big God, who knows my heart and created me to adore my children and can take my emotions. I believe we are allowed to share our hearts with Him (He knows our thoughts and desires anyway!) David begged for the life of his son. We are allowed to tell Him what we want, please don't misunderstand. What I am finding, however, is that I don't get to tell Him what to do. I don't get to only "trust" Him to do what I want. I believe He is able. But I must trust Him - whether or not He does what I have asked.

Even when it is a bad week all in one day. Which, frankly, would sum up yesterday nicely. or "badly." Whatever.

5 thoughts:

Mike and Christie said...

Hugs to you from a sister in Christ.
You are wise beyond your years.

BrendaE said...

You know Katie, since I began reading your blog once Becky Peterson told me of Ellie's birth and the complications she faces, each time I read it, I often find myself thinking of how your heart must be feeling what you've written today. I love how you feel open to honestly share the hard days and also the good days. Will and Ellie are beautiful children and God is using them in ways you will never know with people you will never know. Praying for a better day today and that you will feel His peace.
In His Love from a sister in Christ.

Linda said...

Praying for you today....here is another great song to add to your phone....You Hold Me Now by Hillsong...it is one of my new favorites.

teecobb said...

Katie, my daughter I am pleased with how you have received Ellie and Will. You are a wonderful mother.
with boundless love, Papa God

nancyguthrie said...


Wish I could come over and kick and scream with you a bit about this harsh reality and then come to peace with you in God's goodness and trustworthiness.

I'm speaking at Park Cities Presbyterian Church in Dallas next Thursday night and Friday morning. I'd love to meet you if you could make it.

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