Monday, February 15, 2010

The Brokenhearted

"When He came to the village of Nazareth, His boyhood home, He went as usual to the synagogue on the Sabbath, and stood up to read the Scriptures. The book of Isaiah the prophet was handed to Him, and He opened it to the place where it says: "The Spirit of the Lord is upon me; He has appointed Me to heal the broken-hearted and to announce that captives shall be released and the blind shall see, that the downtrodden shall be freed from their oppressors, and that God is ready to give blessings to all who come to Him." He closed the book and handed it back to the attendant and sat down, while everyone in the synagogue gazed at Him intently. Then He added: "These Scriptures came true today!" Luke 4:16-21

Out of the five things listed above, one of Jesus' specialties is to heal the brokenhearted. That is me.......that is Chappy.

Hope has always slept in our room. Because of her heart condition, I don't let her sleep too far away from me. Each morning, she awakes from slumber with the messiest head of hair you have ever seen, a great big smile, half-open eyes, and muscles that resist waking, thus causing her to stumble and fall over her own feet. As a matter of sweet routine, Chappy and I pull little Hopey up onto our bed for 15-20 minutes of hugs, kisses, giggles, and tickles. Chappy gently brushes her hair back from her face and says: "Pwetty" over and over and over again. In response, Hope gazes at her daddy with big green eyes, tucking her still-sleepy body up under his protective arm to make sure she soaks in every word. I love watching them. During daddy's morning adoration, Hope occasionally shoots a dimpled grin at me as if to say: "He reeeaaallly loves me!"

Once Hope reaches a certain level of "alert", she goes from soft and cuddly to a four year old tornado of trouble. All day long she manages to break every single rule, giggling with glee, and then makes a run for it! I chase her down for hours on end with as angry of a "no-no, Hope" as I can muster while trying not to laugh as she takes off in a Down Syndrome sprint with an all-out effort to escape trouble. Hilarious.

Three meals a day are spent with Hope attempting to be as independent as every one else at the table. Unfortunately, her low muscle tone and lack of good coordination keep her from being as successful as she would like to think she is. After meals, she is typically covered from head to toe in gooey cheese, sloppy potatoes, mushy carrots, or crumbly crackers.....every crevice of her body has to be investigated and cleaned with care. You wouldn't believe where I have found food on Hope's body if I told you.

Hope's days are filled with fun; I become a mere spectator at times. She dances with abandon to Sesame Street, carries on language-less conversations with her stuffed animals, and pretends to be Charlie's momma with intermittent bouts of wet kisses on his head, not-so-carefully taking his bottle out of his mouth and putting it back in again, and pointing her finger at him while trying her best to say "no-no"......Charlie, meanwhile, becomes so engrossed in laughter I have to make Hope leave him alone so he can breathe. Precious.

Each day ends in much the same way it begins.....Hope nestled in bed between Chappy and me after we have managed to get all the other kiddos down. Yes, Hope is our resident night-owl who keeps her eyes wide open until the bitter end. Between Mom and Dad, she goes from one to the other giving hugs and kisses until her body finally realizes it has had enough for the day; relunctantly, she cuddles up with one of us and begins to purr......the welcome sound of Hope sleep. Not able to help ourselves, Chappy and I typically watch in silence as she sleeps for several minutes before transferring her to her own bed for the night.....admiring her perfect little face with a turned-up nose that asks to be pinched, long eyelashes that could sweep the floor, and soft brown curls that fall beneath her tiny ears. A love affair? Certainly. Somehow the routine never gets old to us.

Hope faces another heart catheterization this year. We have known since we left the hospital in October following her third open-heart surgery. Understandably, the cardiologists want another look at the aggravating aneurysm that remains in her heart, and have informed us she might need a fourth open heart procedure.

I often have flash backs. They come out of no where. In my mind's eye, or possibly from the eyes planted in the rawest part of my soul, I suddenly envision Hope in NICU after surgery. Hurting. Struggling. Looking so terribly fragile. And I cry.


Chappy and I are making a very intentional attempt to live out our faith in front of our kids as we daily walk through the uncertainty that is Hope's future. We encourage one another to appreciate and relish each day we have with our little angel, trying not to major on grim possibilities. As Spiritual leaders of our home, we spend each evening in God's Word discussing Scripture that remind us of God's unfailing and immeasurable love.....of His promises that are ever true.....and of His plan not to harm us, but to give us hope and a future. We want to build our lives on His Truth instead of doubt and fear that come packaged as an enticing gift from the enemy.

It is not easy. It is, in fact, a daily battle. I confess, I have days when I would like to shut the entire world out of my life save my family. There are times when hearing others complain of the mundane makes me want to scream.....when seeing people throw their lives away, or take their lives for granted, gives me occasion to want to slap them silly. There are even moments when the darkness appears to be more comforting than the Light.....when I want to feel sorry for myself and sorry for Hope's condition.....and I want to be really really sad. However, in these times, I constantly remind myself to recall the lessons I learned in my youth.....and I find encouragement in God's Word....He has sent the Comforter to heal the brokenhearted. So, in prayer, daily, I ask for the Comforter to come. I welcome Him to refresh my soul, mend my heart, and help me take each step that has been ordained for my life.

This weekend, Chappy and I escaped for a romantic weekend away. Somehow I managed to become his date instead of his wife......I had butterflies all over again. It was a treasured time. No, it was a gift. Thank you Lord!!!


  1. sometimes it is hard to let your children grow but it happens.I always thought my parents were over protective but now I know how they feel.I have been there when I want to yell at god .But have to lay it down in front of god.

  2. I completely understand. My Joshua doesn't have DS, but he is chronically ill. I read this post with tears in my eyes because it always feels so good to find someone else who truly, truly GETS IT. It's not a fun "club" to be part of, but it still helps to know you're not alone, kwim?

    Biggest (((hugs))) and know that when Hope goes for her catheterization, I will be one of many praying for her (and you).

  3. Your fears are real and true but just know that you aren't alone. You have the prayers and love from sooooo many people, me included. Hugs to all of you.

  4. Melanie, you and I must me on the same page today. Just posted a brokenhearted post on my blog today. Nina's having her MRI tomorrow. So feel your pain. Love you guys. Let's get together soon!