Sometimes You Have to do the Hard Things

This morning, an IUD was placed in my baby’s uterus.

Scott and I drove over snowy roads to Children’s Hospital early this morning and handed our baby girl over to the staff there so that they could place this foreign object into her body because we felt like we had no other choice. It was the best decision we could make for her under the circumstances. But I still feel in my heart that it was a crappy decision.

Kathryn's IUD Insertion #1

Beautiful early-morning drive to Children’s

The emotional impact of this for me is much bigger than I can describe to anyone. I’m still trying to process all that I’m feeling deep inside. I slept very little last night. I don’t know how to explain why this is so hard.

This topic of helping our “forever-babies” children through the challenging aspects of puberty is a hot topic. In sharing this post, I realize that I open myself up to the possibility of some harsh criticism. I’m not sure my tender heart is up for that.

But maybe my struggles can help some other mom through this heart-breaking piece of raising a child who will never grow up. So I will share.

I don’t have any answers, and I can’t make these tough and very personal decisions for anyone else. But sometimes it helps just to know that you aren’t alone, so . . .

Kathryn will always be a four-year-old at best — a two or three-year-old in most areas. But her body doesn’t recognize this. We knew this day would come, and we felt sure that it would be a terrifying thing for her when it did.

Kathryn's 11th and Mother's Day #4

It has been even worse than we feared. Our sweet baby was plagued with such heavy menstrual cycles that her world was turned upside down for three weeks out of the month. Intense cramping and ten to fourteen days of heavy bleeding were more than her baby self could understand. We watched her shut down emotionally during those weeks and lose hard-won ground developmentally. She regained this ground just in time for the whole process to start over again.

So we did something I swore I would never do. We agreed to let her doctor start her on oral hormones. These did stop her cycles and allow her to function more along her normal curve. But they also added another twelve pounds to a body that fights continually with a much-slower-than-normal metabolism — a body that is already so encumbered by cerebral palsy that it doesn’t need extra weight adding to the gravitational challenges of any type of movement. And I worry so much about the effects of synthetic hormones on her body and system.

We visited doctor after doctor as we searched for someone who would make a way for us to have her uterus removed. That incredibly designed organ that God has placed inside of woman is there for one reason. To provide a warm, safe place for a baby to grow to a point of viability in the harsh world. My sweet little girl will never need a place in her body to carry a baby. As worried as we were about such a major surgery for her, we felt it was the best, and safest, solution for ending her physical and emotional monthly agony.

In spite of the fact that we did find one very kind doctor who agreed that this would be the best choice for our little girl, she made it clear that no hospital ethics committee would ever allow it. She explained that we would have to engage in an intense, drawn out battle we could never, ever win. And that we would probably make enemies along the way. Much more severe cases than our Kathryn’s have already been tossed about in this sea of medical ethics, and the results of those battles have made it very clear where the lines have been drawn.

In an attempt to prevent parents from sterilizing children who might actually be capable of parenting a child someday, a system that allows thirteen-year-olds to have abortions without their parents’ knowledge or consent has gone even crazier. The parents of children who have absolutely no hope of ever reaching parenting abilities in life are now forced to make choices they would never otherwise make for their children, or in many cases, even for themselves.

Kathryn trusts us with her whole heart in a way that very few humans are ever able to trust any other human. She innocently accepts whatever we tell her is best for her and depends on us to take care of her. Sometimes the responsibility of getting this right and never accidentally betraying her trust is more than I can bear. And sometimes, sadly, doing what’s best for her means you have to do the hard things, wondering all along the way if you’ve made the right decision.

And that’s how we ended up at Children’s Hospital this morning for this procedure on our baby girl.

Kathryn's IUD Insertion #2

Kathryn, not really understanding what’s going on, but so excited about her new My Little Ponies for her “surgery” gift this morning

Kathryn's IUD Insertion #3

My brave girl totally rocked her IV insertion

The self-pitying, aching-mommy-heart part of me is tempted to hurl accusing questions at the God who writes our stories.

Why, oh why, if You are going to create some special angel-children whose minds will never grow up, can’t you also make it so that their bodies don’t grow up?  

Isn’t it enough that Kathryn already has to fight for every minor accomplishment in life? That seizures and cerebral palsy are part of her daily reality? That her world is already so often a very confusing place for her? 

Isn’t it enough that Scott and I are already trudging along in search of cancer treatment for him and trying to find the right timing for a massive spine surgery for one daughter and major bladder reconstruction surgeries for three other kids? And continuing to look for answers for Nathan’s incapacitating leg and back pain?

Did we really need this on top of everything else? 

I know that this world is not our home. I know that this is a temporary stopping place and that our spirits that will someday soar free — unencumbered by brokenness and limits — are trapped inside bodies that are horribly imperfect.

Once, many years ago, while trying to explain to one of our sons the difference between our souls — the real us — and the bodies that house those souls for now, he exclaimed, “Oh, so our bodies are like a shoebox. And we’re kind of like the shoes inside!” 

Yes!

And since that time, we have pretty commonly referred to these designed-by-God, yet hopelessly-flawed, earthly  homes for our souls, as “these old shoe boxes.”  They are plagued with poor eyesight, arthritis, cancer. They get fat and break down and behave in all kinds of uncooperative ways.

So deep in my heart I know that, in the big picture, this is not such a huge deal.  We do the best we can and move through this life, looking forward to the day when we are all set free from these earthly bodies and joined together in eternal joy, perfect peace, and glorious fellowship with our Savior and Heavenly Father. (I can’t wait to see my Kathryn dancing through the streets of Heaven, with no cerebral palsy!)

But there are times when the day-to-day working out of our lives here seems to swallow up any picture of the future that we know is ahead for us. And today, I’m feeling a little bit lost in it all. And sad.

Kathryn's IUD Insertion #4

Kathryn coming out of anesthesia with her “Little Murray” on her shoulder, and a photo of her family gripped tightly in her right hand

I am so thankful for an infinitely patient Heavenly Father who understands my deep-inside feelings even better than I do myself. I’m so grateful for the ways He has helped me learn to trust Him even when things seem so very out of control and wrong. I cherish the love that He pours over me when He holds me close while I ask human questions and cry the pain out of my heart onto His waiting shoulder. And I hold onto His promises to help me care for the precious ones He has placed in my arms and in my heart.

Lord, you have searched me and known me!
 You know when I sit down and when I rise up;
    you discern my thoughts from afar.
 You search out my path and my lying down
    and are acquainted with all my ways.
Even before a word is on my tongue,
    behold, O Lord, you know it altogether.
Psalm 139:1-4

I have loved you with an everlasting love!
Jeremiah 31:3

He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.
Isaiah 40:11

 

18 thoughts on “Sometimes You Have to do the Hard Things

  1. I don’t know why hospital boards cannot deferentiate between mental capabilities and interfering parents. How sad to pass judgement on people out of fear instead of a case by case situation. I do pray she sails through all of this safe and happy.

    • It is very sad, Cathi. I know how these things happen — response to things that have been handled in the wrong way often ends up with swings too far in the opposite direction. But I don’t understand why it has to be that way. Some common sense seems like such a simple thing to me.

  2. Lifting you to His throne of grace, while applauding your courage and faithfulness. It’s that yielding-all-to-Him that’s often challenging, isn’t it? Yet, His love continues, always. Hugs to you today!

    • You are so kind to say that. We are indescribably blessed to have them. They open our eyes to so many things we never would’ve seen had they not come home to us. And God teaches so much as we walk through life at their sides. We are not the people we would’ve been otherwise.

  3. I did not see the final decision. Is she removing the womb? Did you go through the legal battles? How did you get the hospital to allow you?

    • The IUD is in place, and we will see if it will work as they hope and stop her monthly cycles. It will take a few months to know for sure. We have not even attempted a battle with the ethics committee, so removal of the uterus is not even an option at this time.

  4. We have an adopted daughter, a victim of abuse. A quadriplegic, Katy functions at a one year level. Because Katy has seizures when she is on her cycle, we give her shots to supress them. As Katy is very fragile, it was the least invasive and best alternative for her situation. Love your blog.

  5. Pingback: The Beginnings of a Cancer Treatment Plan | Where Love Learns Its Lessons

  6. Scott and Kathy,
    Please note that you are in our daily prayers and that we love each of you and the children. You two are living saints.
    Always,
    Mick and Betty

  7. Pingback: Traversing the Unknown | Owning My Nothingness

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