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Special Needs

On the Days when Motherhood is Just Too Much

Today I’m at the end. End of myself, end of my rope. Something’s gotta give.

Good thing you didn’t tell me that being a mother would be this hard, because I might not have become one. Or maybe I would have, because surely raising little humans isn’t as crazy as every parent makes it out to be.

Right.

I have a two-year old. She’s wonderful and amazing and practically has a halo floating above her head. I’m serious. This child is as precious as can be. In fact, she is peacefully sleeping away in my arms at this very moment. What could be better than that?

This is one of those moments that looks perfect from the outside. One of those “too good to be true” scenarios, folks. You know, the one where you see me tenderly rocking my baby to sleep in her perfectly designed nursery, inside our white-picket-fenced house, amidst the tree-lined street in our classy suburban neighborhood. That one.

Photo by Native Heart Photography

Photo by Native Heart Photography

Only it isn’t real. You see a child peacefully sleeping in my arms, but what you don’t see is the fluster and anxiety in my heart as I desperately try to keep her asleep. Every time I have put her down today, she has instantly woken up crying. And it is grating.

The truth is, many days I am completely overwhelmed by how amazing my life is. My husband and I often talk about how we could have never dreamed up such a perfect child. Last night was one of those times that we found ourselves sitting at the dinner table, staring at our daughter with happy tears in our eyes and thankfulness in our hearts, wondering just what we did to deserve this gift God has given us.

That was yesterday. Then today happened. You mothers know what I’m talking about. I’m talking about that Saturday you wake up and start melting down before you even get to the kitchen for your first cup of coffee because you have 500 things on your morning to-do list and don’t know how you’ll get them all done. I’m talking about that morning you go to put on a nice outfit for the luncheon you’re attending, and all the ugly emotions you have about those 10 lbs you gained since Christmas come gushing out because you are now painfully aware that  nothing fits anymore. I’m talking about that morning your toddler cannot seem to keep herself occupied with the toys you’ve given her to play with in her high chair while you scramble to get breakfast on the table, so she starts gagging herself for attention. I’m talking about that morning you think she is fast asleep in bed, only to enter the room to find that her ileostomy bag is leaking everywhere (think blowout) and she is actively throwing up.

And I’m talking about that morning you are confined to the rocker as your child sleeps in your arms, knowing she will instantly wake up the moment you try to put her down. So none of the 500 things you need to do actually get done, you can’t fit a shower in, and then you show up to that luncheon 45 minutes late with only half of your makeup on.

That morning. That was my morning, today. It was hard.

As I stood over my daughter, poop literally pouring out of her bag and puke spewing out of her mouth, I found myself sobbing and crying out “God, I can’t do this! It’s too hard. I’m too tired. This isn’t how it’s supposed to be!” There I was, standing in the middle of all selfishness and sinfulness, feeling sorry for myself. For me. I felt sorry for me.

Meanwhile, my precious Hope was lying in a mess, probably extremely uncomfortable, and I heard not a whine from her. Over the past two years of adversity, she has learned with such grace to take life in stride, never complaining at the curve balls thrown her way. She just threw up, and yet I was the one feeling beside myself and crying. As tears streamed down my face, Hope looked up at me, smiled, and in the most gentle and soft voice said “Mom.”

Mom. That’s me.

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Photo by A. Watts Photo and Design

 

Yes, that’s me. I’m a mother. This is who I am; this is what I do. When the days wear on and the nights seem to last an eternity, and when all my attention is on my child and I have to spend hours rocking her to sleep, and when I am at the end of myself with nothing left to give, I pray I will always be able to look at the gift in front of me and have the assurance that I’m just where I’m supposed to be.

The Dance

 

You hear it said often, “Life is a dance.” If you’re from the South and love country music as much as I do, you could probably recite from memory the lyrics of John Michael Montgomery’s song titled just that. We are all waltzing through life, and this week I am more keenly aware of the dance happening in my heart.  It is a beautiful dance, really.  For it is the outworking of the paradox between fear and trust. It is a dance between anger and acceptance.

And it is a sacred dance that let’s me see my heart for what it is- broken; and let’s me experience God for who He is- Love.

Lately I’ve been two-stepping around the dance floor of my mind. Sometimes I allow my anger about Hope’s disabilities to lead while my reluctant acceptance follows, but other times I willingly oblige to God’s path for her, and acceptance takes the lead. In one step I struggle to make sense of how God could permit an innocent child to be ruled by an uncooperative, disabled body. The next, be fully assured that He knows what He is doing.

Do you ever feel this way about your life’s circumstances? Perhaps you are a single woman, longing in the deepest places of your heart for your knight in shining armor to sweep you off your feet. You have read Jeremiah 29:11 a thousand times over and know you should believe that God has a plan for your future, and yet you can’t seem to find contentment in your singleness.

I’m there. I get it. Somewhere in my heart I have this elusive desire to follow God’s perfect will for my life, but when it gets messy, or it doesn’t look like all I had hoped and dreamed it would, I rethink just how much good He actually has for me. And really, just how much good He has for my daughter. At playtime, it takes strong determination and recurring effort for Hope just to grab a cookie cutter from the inside of an open Ziploc bag. She isn’t sitting or crawling or walking yet, which impedes her ability to find the toys she wants so she can play on her own. Her communication skills are behind, so she has learned to gag herself in order to get my attention. Need I go on? This beloved child of mine works with all her strength to be able to physically function at her age level and cognitive ability. It is painful to watch. And I struggle to not be angry.

But when I sit with the LORD, and pour my heart out to Him, He so graciously shows me His love for my daughter. After all, she is His daughter too. He reminds me to look not at what she can’t do, but at who she is. Hope’s spirit is more beautiful than any I have ever known. Her will, courage, and perseverance are a match for no one. She radiates light and life to everyone she meets. And her soul is a wellspring of joy.

IMG_1304These attributes, I know, were birthed out of pain and hardship. Who am I to question God, then? Is not the spirit more valuable than the body? This dance of anger and acceptance is actively moving in my heart, but it isn’t the only one. There’s yet another.

Nestled against my chest lies my little blessing, sleeping the afternoon away as her body fights a wicked infection. Hope suffers from chronic lung disease, making her prone to quickly going into respiratory distress. I wish I could say that is the only ailment plaguing her tiny frame, but I would be fooling myself. By the time Hope turned one year old, she had spent over half her life in the hospital, leading us to consider it our second home. We had our favorite nurses, knew just what to order off the room service menu, and probably could have navigated the halls with our eyes closed. Not only was the hospital familiar territory, the emotional state we were in during that season was too. We were broken, and we knew it.

But where our weakness was growing, God’s grace was abounding all the more.

I still marvel at how He took our once-petrified hearts and filled them so full with His assurance that we no longer live in fear. Fear that something will happen to Hope. Fear that we can’t handle the road before us. Fear that we will stop believing in His goodness to win out in her life. As I’ve said before, we don’t live in fear, but we do live in the reality that our precious child’s days are numbered. The number of those days may be ten, but it also may be 10,000.

We are in a dance between fear and trust, though. And while fear is not the resounding theme of our lives, it is certainly present- both in the difficult seasons and in the least-expected places. I love to cradle Hope as she drifts back to sleep after having woken from a nightmare. In those moments, I find myself fretting that our sweet times together are limited and God will take her home too soon. The struggle is palpable. It is real. It is hard. So, so hard.

But it is passing.

Because trust wins. Because I know the One who is holding us secure. Because His word says that I am hidden in the shadow of His wings

and that He is my portion

and that He is mighty to save, takes great delight in me, quiets me with His love, and rejoices over me with singing.

And I know, at least for now, that I can take Him at His word. Blessed assurance.