Fighting for Normal

April 30, 2014

Filed in: Life, Reagan, Thoughts

This past weekend Rob and I decided to do things we normally would do. But we like to start our weekends with a bang…the kind that makes you wonder if emergency surgery is in the future.  Saturday morning started off great, until about 8:30 a.m. when I went to pull Reagan out of her high chair and her G-tube got caught. I almost ripped it out of her stomach. Sheer terror screams and panicking ensued. I called her genetics Dr. b/c she’s the only one I have on speed dial and she always picks up. I think I caught her before her morning coffee, and I couldn’t put two sentences together so through tears and non-sequential phrases I handed the phone to Rob.

The other week at lunch, I asked Rob, “Do you think you’re level headed?”

Rob: Yes, why.

Me: I agree…do you think I am?

Rob: Depends…why are you asking.

Me: Just thinking about what we would do if Reagan had a seizure, how we would handle it.

All that to say, we sort of discussed what we would do in an emergency situation and our roles had loosely been defined. I’m not the person who needs to explain things to people, or READ things on emergency seizure medication. When stuff hits the fan, the level headed guy needs to describe what happened and then dictate the plan to me.

Rob told our Dr. what happened…

Dr: “Did the tube come out?”

Rob: No.

Dr.: “Clean it with water only, give her tylenol, put new dressing on it and try to calm her down. Then call the GI Dr. and let them know what happened and see if they want you to do anything different. Everything should be fine…kids pull on the tubes all the time, sometimes they come out, it can be a common thing.”

What a terrible thing to be common!

I cried so much that day b/c I thought she could have died…I mean, I didn’t know if having it pulled that hard could have moved her organs around or done damage to her insides. The entire scene replayed in my mind all day and I would cringe each time I would remember her stomach getting cinched. From the outside when it was pulled, I saw her stomach cinch. Ughhh…I would NEVER, ever choose to be in the medical field.

So after dealing with the G-tube catastrophe, I headed off to list a new townhome (super cute by the way, click here to view). Again, we are fighting for normal. Rob has gone to work over the past week…and I sell houses for a living. I meet with people…that’s not going to stop. It was put on hold for a few weeks, but being a Realtor is part of who I am. It will always come second to my family, but I will continue to be a Realtor, after a wife and mother.

Rob and I decided to head to Lukas nursery when I got back and we picked up a little plant to climb up the pole of our bird house feeder that Rob made. While at Lukas, I ran into a former co-worker…it was like God planted him right there to give us a pep talk, it was really encouraging to run into someone and know that God put him there…that God was like, “Hey Rob and AM…here’s a word from me, from a guy you haven’t seen in over a year. I’m in control…and I know what you need to hear, and I can use anyone to tell you.”

A lot of you think we are strong…and that our faith is strong. I can tell you that it’s being strengthened but we often…often feel weak. Many tears have to flow before blogs of strength can be written, please know that.

Sunday we went to the mall…that’s about as normal and American as you can get. We walked. We shopped a little. When we got out of the car I saw a little girl bouncing from the parking lot holding her mom’s hand and I just got sad. “That’s what I wanted to do…will I get to do that? Will Reagan be bouncing into the mall with me when she’s three?” A lot of things that I wanted to do and dreamed about…like shopping with my little girl, seem to be in question. And I get that there are things that are more important in life than shopping with my daughter, I get that you might not consider it a big dream, but it was my dream and it still is. I shopped with my mom and grama, and I have great memories from it. It’s a mother/daughter bonding thing.  Maybe at the heart of this dream, what I really want is to connect with my daughter and bond with her over shared interests, and that’s not a small dream, it’s big.

As we fight for normalcy, we are working on skills that Reagan has to re-learn. The girl has grit…she has determination and watching her drives Rob and I to be obedient in what God has called us to in caring for her. Every single day…every single day she has done something new. When I wake up in the morning, I think, “she probably won’t do something new today,” and then of course, she does. The day she rolled over, it was the first thing she did…it was like God said, “Anne-Marie, I am faithful, even when you are faithless.” God likes to give me reality checks.

So below are some new videos…Reagan has moved her knees under her as if trying to coordinate getting into a crawl, she’s rolled over, and she has given me the greatest joy in laughing…doing the Reagan laugh. I love her…I love her…I love her.

Reagan getting her knees under her 4/27/14

Reagan rolling over 4/28/14

Reagan belly laughs!! 4/28/14

 And that my friends, is how you fight for normal.



comments +

  1. Debbie Parrish

    April 30th, 2014 at 10:58 am

    Continued prayers for all of you. Please continue writing. Xo

  2. Anne-Marie

    April 30th, 2014 at 11:52 am

    Thanks Debbie!

  3. Thelma

    April 30th, 2014 at 1:46 pm

    Thank you, God, for your faithfulness, your grace and mercy that we see your miracles everyday through Reagan.

  4. Trey

    April 30th, 2014 at 2:30 pm

    You guys.

  5. Uncle Raymond

    April 30th, 2014 at 4:00 pm

    continuing love and prayers…

  6. Mandy

    April 30th, 2014 at 6:26 pm

    Your sweet daughter is too cute for words!! My little family has been praying for you all every night. My daughters name is Autumn and she prayers for baby Reagan too!! I loved hearing her little giggles 🙂 hang in there you are a great momma

  7. Katie

    May 1st, 2014 at 12:34 am

    Thank you for sharing your life with us. Praying for you guys. It’s so great to see and read how strong she is! She is just precious!

  8. Georgianna Baeza

    May 1st, 2014 at 3:54 pm

    What marvelous moments ! My heart rejoices in the power of the Lord Jesus poured out in Reagan’s health. All those improvements are a clear message that the Lord is in control. Your daughter is absolutely amazing and so beautiful. You , as parents, as a huge testimony of God’s love to the world. No matter what our issues are : the Lord is there for us! Please keep writing updates. I know how busy you are,but the videos are a great motivation for those of us who are praying and believing in a miracle for you.
    I dream about the day when you write a book to share hope to the hopeless, based on what God is and will do in your family.
    Georgianna from Costa Rica.

  9. Lorrie Pilkington

    May 2nd, 2014 at 12:40 am

    I loved hearing Reagan laugh and your laugh. I miss hearing your laugh Ann Marie it brings back precious memories.

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