This.Is.Icing.

Amy’s Story:

Our daughter Claire was 20 months old when my husband and I surprisingly discovered we would be expecting again. What we planned as a celebration weekend to tell Gramma and Papa that our beauty of a little girl would be a big sister turned into our biggest nightmare. Illness, CPR attempts, ambulance rides, life flight, and an introduction to a whole new world of “medical necessity” became our reality. An “unknown virus” changed everything; our walking, talking toddler was now dependent on us for her every need.

Statistics. Predictions. Bloodwork. Tests. Surgeries. Therapies. Too many doctors to count. What was God doing? While staying at the Ronald McDonald House to avoid the tiresome drive and spend more time with Claire, God placed Melanie in my path. I lifted my head from reading my Bible early one morning and saw this grandma with hurt and loss written all over her face. It didn’t take long for us to realize we were the only ones who could begin to understand the losses. I drove her to the hospital each day so she could visit her grandson, the only survivor in his family’s tragic car accident.

The morning we met I was reading Ephesians 5:15-16 and sensed the Lord speaking, “Be very careful how you live, not as unwise but as wise, making the most of every opportunity for the days are evil.” I didn’t like what the verse meant for me as I was in shock and disbelief of my situation, but I knew a grandma needed someone and that someone was me. This perspective of “redeeming the time” has become a truly beautiful part of my healing even though I acted in a complete daze at that time.

I found myself in the months and years following that windy day in February that forever changed our path, remembering how things used to be. I cried out to God, “What is my faith supposed to look like?” I didn’t feel capable nor willing to face this unsurmountable task of caring for a child with special needs.

The Lord gently taught me to simply trust him one step at a time…literally putting one foot in front of the other to accomplish the need of the moment. Most of the time it was nothing monumental- just taking a blood pressure reading or changing a diaper. What I need most was the assurance of knowing Who was with me. My mantra morphed from “What if” to “I can live in the past or choose to live in his PRESENCE in the present.” Baby steps of healing for this momma.

One necessity in this journey was – and still is – slowing down from typical activities and expectations to concentrate on our “new normal.” With numerous doctor appointments and therapies, I didn’t have time early on to “grieve” while taking care of two daughters. Frequent journaling was a way to process my deep loss. I also asked friends to pray for me even when I couldn’t bear to talk about all the details. Grief would come like a flood at unpredictable times – often at church when life was still for a moment. I came to recognize that even though Claire didn’t clinically die, the death we felt in our hearts was real. Denial, anger, and feelings of withdrawal crept in at times. Through journaling, reading the Bible, praying, and slowly sharing with trusted others, great healing has taken place in my heart.

Our church family has literally been the hands and feet of Christ since the first weeks of this life change. Whether bringing meals, staying with a young baby while I left for appointments, mowing our lawn, or stopping by to pray with us at the hospital or our home, we have felt the Lord meet our tangible needs through others.

A Scripture which brought great perspective is Habakkuk 3:17-18. It opened my eyes years ago and still breathes life into my often-weary soul: “Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior.” I personalize the passage by affirming: THOUGH… Claire can’t walk, Claire can’t. . . THOUGH life is hard and looks different from those around me. . . YET I can find joy in my Savior because God is always good.

Fear of an uncertain future and the death of dreams coupled with the overwhelming stresses of caregiving made for a very lonely road. And this road still feels lonely at times as it requires many sacrifices and much needed balance. As parents, we view this life as a marathon. We must keep on running for her sake and ours. Who else is dreaming for our girl?! Who else is speaking up for our beauty?! I never signed up to be an advocate nor did my personality gravitate towards speaking out for needs. Once upon a time I taught elementary school children to read, and now I have learned to communicate with my non-verbal daughter.

And life does look different from those around me and what I imagined. Yet, as my girl’s 16th birthday arrives, I am planning a big day with some special friends doing the things she enjoys. Though my mind is often weary from “decision fatigue” – as is the case when caring for special needs – I choose to celebrate the gift of Claire’s life! When sharing with people about what happened, I refer to her life as “icing on a cake.” Doctors expressed different prognoses ranging from Claire “being a bit clumsy” to “She will likely remain in a vegetative state the rest of her life coming in and out of consciousness.” Yet God’s plan will prevail. This. Is. Icing. She is here with us. I choose to make the most of every opportunity!

Read more stories of trusting God with children

 

 

10 Comments on “This.Is.Icing.

  1. Dearest Amy my sweet friend,
    Like you I was expecting to have a “normal” child.
    It just happened at the beginning of her life.
    God bless you Amy. We all love your dear family.
    Claire and my Bonnie have taught us many things,
    and the fruit is precious though invisible at times to the naked eye. The trials are very hard as are many decisions we must make.
    I often think of what the Lord will say to me when I stand before Him. He has worked through my children and allowed their disabilities to teach me so many things.
    Their disabilities have taught other people as well.
    I’ll never know why. I trust that our God is good, and we must wait on Him and have faith – and teach others to have faith as well. We know something most people will never experience- unconditional love with no visible fruit.

    God Bless you always. You are always an inspiration to me.
    Karen Bores

  2. So beautifully and eloquently written Amy. Watching your family over these years has been a blessing to me. Claire has been a blessing to me and many others around us. God has great plans for you and your family. Love you guys!

  3. Thank you for sharing. It has taken me so long to read this, as I keep going back and re-reading sections, jotting down quotes, etc. Deep truths here that will take me a while to ponder.

    Again, thank you for writing this. I will be caring for a friend’s older daughter while she takes the younger one for another surgery, one of many. She is growing battle weary as she wraps her head around all that God is doing/asking of her. I am going to share your story with her. She lives in Lakewood. May I share your email/phone number with her if she asks?

    • Beth, Please do share my email amyedwards1995@gmail.com if it would be a help to her. We moms need support.
      You taking care of your friend’s daughter is one thing your friend doesn’t have to think about. My husband and I feel the “decision fatigue” weighing heavily on us so often.
      God’s word is our strength and song- no matter the struggle. Thanks for sharing this with others.

  4. Your family is a wonderful example of giving thanks in all things . (1 Thess. 5:18)
    Thank you for sharing your story , Amy.

  5. Happy 16th to your sweet girl! Thank you, also, for your powerful words. Giving parents of special needs kids the room to grieve is important. As we were struggling for a diagnosis for my son, I read a book that advised me to “grieve the child you thought you would have,” and then move on. My days weren’t going to be filled with little league or school parties, instead just therapy after therapy. I grieved and moved on to celebrate all that my son is, not all that he isn’t. Thank you for your words that help me reaffirm this! Continued blessings to you and your family!

    • Shannon, wise words. When we grieve and also live in acceptance of our “new normal” your son and my daughter are free to be who they are which allows acceptance and growth to continue for the whole family. We have many reasons to rejoice along the way!

  6. Amy, you are truly a special soul. You touch so many hearts with your smile and kind words. No matter what life throws at you, your faith is strong and will not waiver. You are a joy to be around, and I believe your Claire was blessed with an angel on earth having you for a mom. You are one, just like my mother, who can find strength through faith, when it seems that all your reserves have been emptied. Craig and I recognize how special you are. This was beautifully written, my friend.

    • Thank you for your thoughtful words, Tracie. Your family provides the much needed balance of parenting typical kiddos, too. So thankful for yours and your daughter’s friendship.
      You are blessed to have a wise momma.
      Hugs to you!

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