Today at lunch, Will prayed,
Dear God,
Thank you for my mommy and please heal Ellie. And please heal me & Ellie because we have to go to hospitals and doctors.
Amen.
And I quickly left the table and went to my closet for a good cry.
I knew this day was coming. Other moms of kids with limb differences have warned me. I've heard it from the mouths of people like Nick Vujicic whom we met last year. I shouldn't be surprised.
I just didn't know it was coming at 11:45 this morning.
And I feel completely unprepared.
How do I explain to my child who spent the latter part of lunch singing about God being bigger than various forms of monsters that sometimes He heals and sometimes He doesn't and sometimes He heals differently than we expect and sometimes we never know why and somehow He created Will & Ellie both perfectly for me and wonderfully different. How do I explain all that? How do I teach him it's okay to pray for healing while also accepting who he is and Who God is and the mystery that is our Creator?
And maybe I don't have to explain anything yet. These are natural things for him to pray about, I think.
But it rips me up inside.
I guess he gets that not all kids spend days going to the hospital and going to therapy (which we did this morning.)
My heart just broke today. I wanted to scream but couldn't. I wanted to throw something but knew if I broke anything, I would have to clean it up and I have enough to clean up around here without adding to the mess purposefully. I wanted to beat my head against my closet wall as I feel sometimes like I am beating it against life, but I didn't want the headache.
I just cried. I haven't cried in awhile. How on earth am I going to be able to go through this with two children with differences. How on earth does God think my heart can possibly take this?
I want to move to Tahiti.
I want to take my babies and escape society and all it deems "normal."
I want to ask God that if He is going to give my child hand differences could He please add a few extra hands to me so that I could get something accomplished - dishes, cleaning, laundry, anything really.
Sweet Will and his precious prayers to God. I just don't know how my heart can bear them.
Sometimes people have told me I'm so strong. I can't help but laugh. If you know me in real life, you're likely laughing too. I'm not strong. I'm a crier. And ugly crier (you know the kind - snot dripping, red eyes, loud noises kind of crying.) I'm not witty. I'm not funny. I'm not laid back and thick skinned. I'm a people pleaser. I don't particularly like to stand out in a crowd. I'm not strong. By the grace of God, we have a wonderful support system and the prayers of untold numbers lifting us up & enabling us to do life with two children with differences. That is how I get through difficult days.
But it's moments like this that I feel weakest. Though I know in my head that God is always with us, it's moments like this when I don't feel Him. I feel so alone as I cry on my closet floor. I feel alone as I go back to the table and pretend like everything is just dandy. I don't feel strong enough to have these conversations with Will, to hear him pray to God for healing, to drag him to more doctors and surgeries and therapies... and then to go through it all over again with his sister.
I hate to end a post without tying it up nicely with a neat little bow. (In my head, the bows are always red - I have no idea why.)
Today, I have no bow. I have no ribbon. I can't find the ribbon in the suitcases I am still unpacking. I'm heartbroken for my baby boy and baby girl and I just can't find any ribbon to tie it all up in a nice little bow & make everything better. Not today.
9 thoughts:
So don't TIE a bow - UNtie one!
"Each day comes bearing it's gifts ~ Until a ribbon" (that's the title of my blog)
I think you do an awesome job of untying ribbons every day. You can always seem to find something positive in every negative situation - that in itself is a gift. And I believe you are teaching your children about these gifts every day, in all kinds of ways.
You may not feel strong, but you certainly come across as one tough lady!
I laughed out loud at the throw something, clean up a mess comment. Very funny during a very not-funny post. Praying for your words to Will!
Your post reminded me of something that happened about 8 years ago when we were newlyweds. My husband and I were in the home of a family we loved very much. (Their two oldest children had been in our wedding.) Their youngest at the time was a baby and she was born with Down's Syndrome. That night before the kids went to bed we got to experience their family devotions and prayer time. The mother prayed for God to heal her daughter and she cried as she did. As moved as I was, I thought it was strange that she would pray for that when clearly, her daughter was going to have Down's Syndrome regardless. It was not long after that that a hole that had been found in Hannah's heart was found to have completely closed up. When we got the news, I remembered that night when her mother prayed - in vain, I had thought. But God had been hearing that mother ask for healing and He had indeed been at work. Every time I pray for an "impossible" situation that my eyes tell me cannot be changed, I think of sweet Hannah.
I am praying right now that God will give you the exact words you need to teach Will all the things you described. He is going to know His Lord in such a special way, Katie.
God uses "the weak things of the world to confound the wise." Even though you feel weak, His strength in you is a display of His glory. You and your family are suffering so much and one day you will walk in the eternal reward of being faithful to Him through it. May He bless each one of you and show you His great love.
Thanks for making me cry!
You have such a tender and sweet heart and your tears are very dear to the Lord.
We have had the questions come... first with our son with CP, then, with our Sarah and our Erika.
My heart broke the day Erika said, "My birth parents took one look at me and left, because I was ugly, and like this!" We cried together.
I don't pretend to understand the ways of our Lord.... I just know, in His infinite wisdom, He has chosen to bless YOU with wisdom beyond your years. Really LIVING life, really experiencing it, without all the shallow is PAINFUL.
But with Pain there is much spiritual growth.
There are days I too do not feel equipped to do this. There are days I want to stay in bed and pretend the day isn't marching on whether I care to join or not.
But HE always ALWAYS holds my hand, and He has never forsaken me, in offering my children something from Him, in their hour of need.
Will's prayers are precious.
When Ev was 8 weeks old, his surgeon said " What you do with kids like these is lay them on their stomach and hope they keep breathing." (I did say he was a surgeon didn't I) Evan is 21 , walking, driving, a bit learniing disabled and can breath when he lays on his back... He IS healed.
We went to hospitals, had surgeries, ect for 'tune ups'.
God healed our Celiac, he showed us how to take out the wheat....
someday we will see how perfect we are in the reflection of Gods eyes as we stand before him!
well, the first thing is that you will keep on doing it becuase you don't really have a choice now do you! I tell myself that on the worst days.
The most difficult sentence I ever spoke was "My oldest is 5 and she has Autism"
The hardest sentence I ever heard was from the same little girl 2 years later. "I don't write like a 2nd grader. I write like a baby. i can't do what they can"
I knew that the season of blissful ignorance was coming to a close. I've often thought that I could much better deal with Autism if I didn't have to deal with the judgement that went with it.
You are doing so well and I know that I'm just a stranger that reads your blog. But I pray for you daily.
The closet floor is allowed to be your best friend on days like this.
No words, just wrapping my arms around you.
the closet is the perfect place to steal a few minutes away to cry or drink wine or if you are me - do both. I read your blog and my heart goes out to you all the time - but you know what dries my tears and fills my heart with joy? The pictures of your beautiful kids, laughing and playing and enjoying life in general - like a child without a disability - those pictures give hope of better days to come.
Katie, I'm not going to pretend I can relate to you one bit, but I will tell you that from my perspective you are VERY strong...not you, your flesh, but GOD IN YOU. Thank you for choosing to let Him work in you and be strong through you. It's an amazing thing to see. You are such an example to me and so many people of faith and perseverance. Don't laugh. I love you and am praying for you daily.
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