I’m not sure why the surgeon’s words were such a surprise. Somewhere inside of me, I must’ve known that this was a possibility.
As we drove home from the hospital, I stared through the windows and tried to sort through my feelings. The cold, overcast day so perfectly matched the gloom in my heart. Even the few trees still jealously holding onto their brightly colored leaves couldn’t compete with the darkness hanging over everything today. They just looked lonely standing among the naked branches surrounding them.
The sadness thickened all through the afternoon, oozing over the top of my head, slowly seeping down, down, down like a thick, black sludge, shutting out the light and making it hard to breathe.
Jaden and Lilyan saw their spine surgeon today — Jaden for a routine post-op appointment after his spine surgery last week . . . .
. . . and Lilyan so that we could talk about the plans for her very, very severe spine deformity.
The bottom line? No one really has any idea what to do for her. The best option known to them was described to us as an “enormous, enormous, enormous, eNORmous procedure. . . just a huge, HUGE deal with many, many serious risks.”
Well, what if we don’t do anything? Just leave her the way she is? She’s so happy and doing so well.
The answer rocked my world.
Lilyan – our precious, joyful, beautiful, light-of-our-lives daughter, will definitely have a shortened life span if we don’t make the decision to put her through this very risky surgery. Without this surgery (this enormous, huge deal with many serious risks) we will be lucky to have her with us just into her twenties, or possibly her thirties.
This means without this surgery, no dreams of marriage. No hope of ever parenting children. Essentially no adult life at all. No “what-I-want-to-be-when-I-grow-up.”
And twenty years might’ve sounded like a lot a few years ago, but I know how quickly the past fifty years have gone by. Twenty is nothing! That’s not enough! We just got her! I already missed the first five years of her life. No! That’s just not fair! She has so much to offer this world!
At first, I didn’t even feel pain. Mostly just shock, although the sadness was there immediately. The pain set in over the next hour or so. Following close on the heels of the pain, came . . . tired. I felt — and still feel — just so very, very tired.
Most of my sweet children are victims of this dark and twisted world and all that comes along with living in it. Their little bodies are broken; neglect, poor nutrition, and cruel caretakers have left their minds broken; their hearts have been broken over and over again. And even now — safely in the arms of a family that loves them more than life itself — they will never be able to stop fighting, just to reach their potential, for as long as they live in this world.
I feel overwhelmed as, over and over and over again I lift my tired arms, and try to stick all of their broken pieces back in place to help them function in some way that at least resembles “normal.”
Oh, God. There are so many of them. And they all have so many broken pieces. And I love them and hurt so much for each one.
And now this. This . . . this just really, really hurts, God. What were You thinking when You chose me for this role of Mom to so many whose needs are so great? I’m not strong enough to be all that they will need me to be for them.
He says to my heart, “My child, it’s none of your business what I was thinking. Your business is doing what I put before you to do, drinking in the great love I have for you, and pouring that love out on each child I bring home to call you Mother. Teach them that I love them. Model for them that I will never leave them.
“For now, rest here in My arms. Cry your mommy-tears on My shoulder. Trust Me. Remember that these little ones were Mine before they were yours. I love them. I know the plans that I have for them. I’ve known the plans for their lives since before they were even created. Plans to prosper them and not to harm them. And those plans include you as their mommy for as long as I choose.”
I know all of this. I believe all of this. But I need some time to absorb the news we got today. I need some time to cry. This is not the way I want it to be. My dreams for our daughter looked so different from the picture we were given today.
So we are facing either this huge and scary and risky surgery for our baby — knowing that we could lose her even earlier by doing the surgery — or the certainty of a short life with her if we don’t do the surgery. We know that we will do whatever it takes to give her the best chance at a high-quality life that allows her to reach her fullest potential, no matter how hard it might be to get through. But it’s not time to face this surgery yet. And my head knows that the important thing is what we do with each today that we’re given with her.
Truthfully, none of us knows how long we have in this life. We don’t know what’s ahead for any of us. The healthiest of our children could live their last day on earth tomorrow. We have to learn to live much more in the moment; looking for and drinking in the beauty always right there in front of us; surrendering all of our future plans and those for our children into the hands of God; letting go of the regrets of the past and the stupid things that just don’t matter; listening to our children’s voices and stories and made-up songs; smelling their hair; feeling the softness of their skin and the deliciousness of their hugs; filling them — satiating them — with love, love, and more love as we allow God to work through us, helping them become all that they were created to be.
Yes, I know these things. But right now, this just really, really hurts.
For now — tonight — I will cry.
Each of our children is given a special song when he or she comes home. Robyn’s song, from Annie, has been playing in my head this evening.
The sun’ll come out tomorrow
Bet your bottom dollar that tomorrow
there’ll be sun
Just thinkin’ about tomorrow
Clears away the cobwebs and the sorrow till’ there’s none
When I’m stuck in the day that’s grey and lonely
I just stick up my chin and grin and say . . . oh,
The sun’ll come out tomorrow
So you got to hang on
till’ tomorrow, come what may!
One day at a time. I will treasure every second with Lilyan and all of my children, and with God’s help, I will learn more and more to live just one day at a time and to “live deep and suck out all the marrow of life.” (Henry David Thoreau)
And I will thank God will all my heart for bringing Lilyan to me. Our lives all changed the day God led us to her and called her our daughter. We will never be the same. Whatever her journey looks like, I have the honor of walking that with her.
I am so very sad tonight. But I am so very blessed.
**** The morning after this blog was posted, I wrote again, sharing the peace that God brought to me during the night. “Nothing Has Changed — And You Know? . . . I’m Okay With That!” ******
Oh, heartache! You are in my prayers. Rest in His arms as you hold Lilyan in yours.
Thank you, Amy! You and your family also remain in our prayers. We are so thankful for your friendship.
Twenty years…thirty, forty…trust the Lord for those years being so fulfilling that she will fill what was meant for her as if she lived to be 100. Remember as well…..twenty till eternity. Together ….I will be praying for you.
Love to you today, Jeanette. Thank you.
I Can’t ‘School YOU’ on this. I can not even BEGIN to empathyze. I can only offer MY tears- to add to Yours, and Scott’s, And Ruth and Vernon and everybody ELSE’s. THEN- we pick up, put BACK on OUR Faith and Cherish G-d’s Third Greatest gift (In MY Mind) First is HIS SON, Second is LIFE, and Third- is HOPE !!! We’ll embrace THAT….Oh, YES- and ,we will TALK to HIM- Endlessly. I’ll begin now…I’m SO SORRY- but, I Honestly don’t think that Lilyan is going to ALLOW us to do THAT (Be Sorry) for long…
The Son will be there tomorrow as He is each day. Praying that you feel the warmth of His love for you and Lilyan and your whole family. Just praying when words don’t even come, knowing He holds our tears as well as our fears.
Thank you so much, Kim. Your prayers mean so much to me. I’ve heard you pray, and been moved to tears by your heart. In case you didn’t see my next post after this one, here the link. God is listening. https://kmrosenow.wordpress.com/2014/11/14/nothing-has-changed-and-you-know-%E2%80%A8-im-okay-with-that/
The little one we are hoping to adopt with her issues has an average life span of 20. Whatever time she has she will be happy and loved.
Many blessings, Brenda! I pray that the adoption does complete and that this littles spends her (?) life being filled with the love of your family.
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I came across your blog today and am very interested in talking with you. My son Pasha is about to have the VEPTR done in a few weeks mainly for his kyphoscoliosis. His posture is very similar to your daughters. He is turning 6 in a week and was adopted 18 months ago. I would love to compare what doctors have said.
Crystal — I’m sending you a private email so you will have my email address. Life is intense at the moment as we are – in the middle of many medical appointments – preparing presentations for Orphan Sunday (http://myfrontporchlookingin.com/2014/11/14/orphan-sunday-and-stuff/). I’ll be in touch! Thank you so much for writing. I can’t wait to hear more about your little guy.
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