After my son's first birthday party, I found myself broken down in tears inside his closet, begging God through blurry eyes, "Why, God? Why?! I don't want this! I hate this! [and on and on]."
Six years later, I thought I'd be over the anger... the frustration... the hatred for a syndrome that seems to rob my son on a daily basis. The effects of his low muscle tone, the direct result of a triplicated 21st chromosome, makes it especially difficult to potty train him even at the age of 7. My arbitrary goal of seeing him through this poopy phase of life (pardon the pun), which inhibits his ability to participate in pretty much every sport (especially swimming), has once again come and gone like yesterday's pot of coffee.
Most people write about Down syndrome using cute little quips like "The UP side of Downs," etc. etc. However, there are times when both sides of the coin are definitely tails, and I feel like the joke's on me.
Any parent who's cared for a child with a disability or a difference can probably identify with feeling sorry for oneself. Heck, even parents, especially moms, who haven't had a child with disability have gone through these feelings just because the responsibilities, expectations, and requirements of parenthood can weigh so heavily sometimes.
And, yet, the UP side comes and slaps me in the face in the form of encouragement, which I did not invite to my pity party. This time, encouragement showed up on the lips of a total stranger. Someone I'd met once. A sister in Christ, nonetheless, but still... a stranger who'd asked for prayer for a young girl who had been suffering with a migraine for... are you ready? FIVE YEARS!!!!! Oh, my gosh. I know what one day with one is like, and there is no way I would have had the kind of courage this girl has had.
I listened half-heartedly as the semi-stranger Sister in Christ spoke, and I heard things like, "...she wants to glorify the Lord...," "...still has a strong faith...," and so on. Later on, after I'd blubbered through my prayer request, she told me of this young girl's mother's blog. So, I filed it in my "maybe" folder in the back of my mind, along with things like painting my toenails and organizing my spices in alphabetical order.
Later that night, the Lord reminded me of this young lady and her story of hope. I'd been reading excerpts from Ann Voskamp as well as Joni Eareckson Tada the week prior, trying to get a grasp on this "funk" that had overtaken my spirit. So, I thought, 'what the heck,' and I googled "migraine 5 years surgery" or something like that. Voila. There it was. Hope for Haley, staring me in the face.
I read a few random posts, and then I couldn't help myself. Type A Ruth kicked in, and I had to read everything from start to finish. Boy, was I encouraged! And, this time, encouragement was a welcome visitor. For, I found so many wonderful nuggets of faith and joy and hope and patience in her mom's writings. Two things that stuck out to me the most, aside from the Lord's awesome healing and the strong prayers of the saints on behalf of this precious girl:
1. She actually said during the painful endurance, "I'm honored to have been chosen for this." WOW! Do I ever feel that way? People around me seem to think so. "Oh, he's an angel. You're so blessed to have him," they say. Really? You try this potty training thing and have him follow you around all day going 1 mph and see how blessed you feel, lady. (It's usually a lady).
2. She clung/clings to the Lord (instead of being angry with Him). When she was scared, she asked her dad to read a Psalm to her and hold her hand. For me this was very special to read. Not only because it showed her faith in God, but because my own father used to ask me to read Psalms to him before bed when I was a child, and I even recited the 23rd Psalm at his funeral as he'd entered his final rest.
Then, toward the end of her blog, when they had to take her in for some fluids for physical dehydration, it dawned on me... through all of the real pain, the real struggles, the real vomit/nausea, sufferings, hugs, love, joy, friendships, tears, and patience, Haley and her family had been staying hydrated by God's word. They had all been taking themselves back to The Great Physician time and again for spiritual IV fluids! Huh.
All of us are broken and sick and in need. Spiritually, that is. We are all dehydrated from the minute we are born into this world, a desert filled with 'why me's' and 'I don't want this. I want that.'
Thank you, Lord, for saints like Haley and her family. Thank you that you have used her, her family's love/care, and her mother's writing to bring the mother of a 7-year-old gift from God from down to up. And, for reminding me that I must stay in your word to survive this desert.
If we will but drink from Your well, we shall never thirst again.
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