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Guest Contribution from
“My Midlife Moments”

August 11, 2006 by Susan

This post may contain affiliate links. Read my disclosure policy here.

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We are honored to have Heather from “My Midlife Moments” join us today with a guest post.

Some of you may have read Janice’s interview with Heather and perhaps are already following “My Midlife Moments”.


She is a most inspiring woman who is currently going through enormous struggles with the health of her youngest daughter. I already have learned so much from Heather’s faith and strength. I am so thankful for her willingness to share her difficult road with us so that we all can learn and grow together.

Once you finish reading the following post, I encourage you to visit her blog and read another post of hers entitled “Waving a White Flag” where you’ll be able to continue with Heather on her courageous journey.

You also can click on the “Pray for Emma Grace” image to learn more about her condition and to get a button to put on your blog’s sidebar.

— — — — — — — — — — — — — — —

When Susan first asked me to be a guest poster today, I was very excited (not that I am not still!) I had written out my entry and finalized it by Monday. Then tuesday came, and our worlds collided with another diagnosis for our little girl. My initial post was entitled “The Joys of Being a Special Needs Mom“. But if I am going to be honest, and do this entry justice — I don’t feel very joyful today.

When we first started this journey 5 years ago with Emma Grace, I felt lost. I had never experienced having one of my children in pain, or in need of constant medical attention. My two other children were the epitome of healthy. I felt as if I had been thrown into a new world without the tools to navigate it. Little by little we learned the terminology — “Broviac–ah yes that is her central line–Chest tubes–those should come out soon”. Little by little our new world became familiar and we gradually gained the tools to navigate around all of our new surroundings.

Then came the heart transplant. Funny how that one really didn’t knock me down. I think I handled it by embracing myself around the fact that should she not get this transplant, she would die. So it became a light at the end of our tunnel, so to speak. But that light would soon become even more dim a few months later.

Mitochondrial Myopathy. Terminal Illness. Hopeless Disease. Those words hit us like a ton of bricks, yet once again we pulled up our boot straps and fought for her future. We learned to navigate that system, we educated ourselves on how to get things done that others were unable to achieve. We found our new normal. Again.

A few years passed. We were in the home stretch with our new life. The older kids had finally found their niche and we were finally able to devout a good amount of time to their every day life, instead of sitting in hospitals with Emma. Emma’s health seemed to have become somewhat stable. We became comfortable again. That was until January of last year when we found ourselves meeting a helicopter that held our child, and a month long stay in ICU. Her heart was failing again.

We pulled through that one, a little more worn and a lot more aware of our daughters limitations. We settled once again into our new normal and got ready for her next obstacle–School. Emma was now 5 years old and ESE Kindergarten was right around the corner.

Yesterday, our world was rattled in a way that I never expected. I’ve always know that my daughters neurological state was compromised due to her disease. I always knew in the back of my mind that she was pretty significantly delayed. Yesterday’s diagnosis hit us smack in the middle of our semi-normal existence.

Why am I telling you all of this? Well honestly, I needed to say it. But I also want to share with you that despite these “hard knocks” – God is still a God of Grace. Many people hear our story and wonder how we have sustained our faith- That is an easy question for me to answer Our faith has sustained us!

If you have visited my blog, one thing you know about me is that I am very open about where I am in the midst of my life. I am open about about where I am in regards to my relationship with Christ. Life has thrown my daughter quite a few hard pitches, and our family has been flat on the ground more than we have bene in the upright position, but we also know that God does give us more than we can handle, because if we could handle this, we wouldnt need Him.

I may be lost in the midst of this new diagnosis right now–But I know He holds my hand firmly. I know he holds her heart with even more strength. I could walk the road of bitterness and anger, quite a few parents in my position would, and do. It is a daily decision to walk the road less traveled. It is one of the hardest things I have ever done, because it takes a great bit of humility and selflessness to trust Him, especially walking the road we have walked. There have been plenty of times I have wanted to turn down the road of denial, or self pity–and honestly I have stopped at those places many times. But He places His hand on my back and guides me down the path set before me, and when I think I can’t walk it anymore, He carries me.

He always carries me.

by Heather
“My Midlife Moments”

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About Susan

Susan Carraretto and her identical twin, Janice Croze, created 5 Minutes for Mom in 2006. Susan loves all social media, but her top addiction these days is Pinterest.

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8 Comments

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  3. Adventures In Babywearing says

    August 11, 2006 at 11:56 am

    Thank you so much for being so open and sharing your story. I can relate to some parts, although my son’s syndrome is no where near as severe as what you are going through, I do know what it feels like to have the rug pulled out from under our feet… what it feels like to not know if our child is “going to make it” or be “delayed” and then have everything turn okay… then bad again.

    I absolutely love how you put into words and admitted that yes, the Lord DOES give us more than we can bear, so that we will rely on Him. Yes. You are so right.

    I do get asked a lot- “how do you do it?” And you’re right… faith sustains us. His strength, and not our own, is all we need.

    I wish you only better days for Emma and your family. We have seen a miracle with our child and know that miracles ARE STILL happening today, and within Emma right now.

    He who began a good work in Emma will be faithful to complete it.

    (You can read about my son’s story by searching the post “the full story” on my blog.)

    Reply
  4. Kristina says

    August 11, 2006 at 9:46 am

    I read your story the other day over at your site. Great story. Thanks

    Reply
  5. Jodi says

    August 11, 2006 at 8:38 am

    What an amazingly strong momma you are! What a blessing you are to Grace.

    Reply
  6. Barb says

    August 11, 2006 at 8:27 am

    And this, my friend, is why I follow your journey. You make me realize, every single day, how blessed I am. You inspire me consantly to count my blessings.

    Reply
  7. Indy says

    August 11, 2006 at 5:26 am

    You are a very strong woman and Emma has been blessed with you as a Mommy.

    Reply
  8. Momma Piñata says

    August 11, 2006 at 4:22 am

    Great post! Your story amazes me. As I look at my sleeping daughter (just shy of 3 months old) I wonder if I would have the strength and courage that you have. I have to hope that I would.

    Reply

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