April 24, 2014

Filed in: GA-1, God, Life, Reagan, Thoughts

I think it’s inevitable for Rob and I to play back the 13 months of  Reagan’s perfect health. We both ask ourselves, “did we do something wrong?” Rob beats himself up over the food…he prepared the menu most days, he made her formula…but we were following everything to a T from our genetics Dr. and dietician.

At Reagan’s last pediatrician appt. she said Reagan needed to see an eye Dr. b/c her left eye was turning in. Of course, being as proactive as I am, I made an appt. immediately and I know…I know, Reagan got sick at the eye Dr. Within two days, we were in the ER. While at the eye Dr. for four hours, we all tried on glasses…we let Reagan cruise along the chairs…we didn’t let her play with any toys, but maybe we were too lax at that appt. I beat myself up over that…I have half a notion to send our hospital bills to the eye Dr., but that’s just a wishful scenario I play out in my head and would never ever do.

When we were in the hospital for RSV, could anything more have been done? When we came home and she wouldn’t drink a bottle…should we have been back in the hospital for it to be administered through her nose? Should she have had a G-tube put in months ago in case something like this happened? I don’t think people do preventative surgery on healthy babies who are eating and drinking like a champ.

Reagan never went to daycare…she was never sick. How could this one time being sick spiral into neurological damage, and the loss of her ability to walk, crawl, swallow? We knew with the GA-1 diagnosis that this outcome was a possibility. That’s why we took so many precautions, but we also tried not to live in a bubble.

I may have said this before, I can’t remember…but the neurologist thought this damage could have been done in a day or in a week. One day? One week? Thirteen months can be undone in a day or a week? Even if we knew it was happening, there is nothing we could have done to stop it. Nothing. And we can’t do anything to prevent the same thing from happening again.

Reagan in her high chair.

Reagan in her high chair.

When I start down this circular line of thinking at any point in the day…20 or 30 minutes later I’m right back where I was the last I thought about it and ended my thoughts on the matter. This was likely God’s plan all along and there’s nothing we could have done to prevent it. I think of Proverbs 16:9 where it says, “the mind of man plans his way, but the Lord directs his steps.”

I used to think this verse had a completely different meaning…as in, I’ll plan the way, and God will help me take the right steps, and those steps will obviously correlate into the way I planned. Now I think it means that we can have plans and dreams, but God will direct our steps and those steps could take a serious detour, altering everything you had planned out for life.

The Jesus Calling app on my phone has given me a lot of comfort when I read the days devotional. Yesterday it started out with this:

Keep your eyes on me, not only for direction but also for empowerment. I never lead you to do something without equipping you for the task.

I know God calls people to do tasks they don’t want to do…and everyone says God doesn’t give you more than you can handle…I guess we should be thankful God thinks so much of ordinary Rob and I to handle the care of Reagan. We have to remind ourselves that Reagan is not ours…she is God’s child and he has entrusted us to care for her. This is the case for every parent…your children, they belong to God…and God determines the steps for you and for them.

Believe me, it’s hard to reconcile all of this in my head…that’s why I constantly think in circles. Maybe eventually, I’ll begin my thoughts where they end…this was God’s plan all along, and God is doing something great in the child that he’s entrusted to our care.


comments +

  1. Thelma

    April 24th, 2014 at 1:53 pm

    You are so right–Reagan belongs to God and He has entrusted her care to you to bring honor and glory to Himself through Reagan. This is and will be a blessing to praise God through the storms of life and many people will see His Almighty Grace and Love through His beautiful daughter, Reagan.

  2. Lia Brown

    April 24th, 2014 at 4:20 pm

    “Praise You In This Storm” by Casting Crowns
    And I will lift my hands
    For You are who You are
    No matter where I am
    And every tear I’ve cried
    You hold in Your hand
    You never left my side
    And though my heart is torn
    I will praise You in this storm

  3. Lydia

    April 24th, 2014 at 5:16 pm

    Thank you for sharing your journey – you have no idea who you will touch along the way. We humans tend to think we are in control – I am constantly telling myself to “Get out of God’s way” he is steering my ship not me I am only here to assist in his great plan. My prayers continue for peace and understanding for you and your family.

  4. Uncle Raymond

    April 25th, 2014 at 12:07 am

    still praying with love…

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