May 17, 2014

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

I seriously love my daughter. She’s a total rockstar. She is rocking therapy, trying to sit up more and more, rolling over, sleeping on her stomach, playing while on her belly like it’s no big deal and she’s eating food (not a ton, but a few tablespoons for breakfast, lunch and dinner).

Unconditional love. I learn what that really means every day. Reagan has taught both Rob and I what it means.

Most parents say they possess that level of love, but they don’t always. You only know if you possess it when you’re tested. When times get tough, people (not just parents) throw in the towel, walk away, call it quits. I’ve witnessed it. I’ve watched adults say “it’s too difficult, I can’t deal,” and walk away from their kids, their marriage, their friends, their job, etc. Believe me, there were times I questioned my Mom moxie. I didn’t know if I could take this task on, wake up another day and do the whole routine again, but it’s the task I was given from above and I am not going to quit on my daughter.

Asking “why” happens less and less, it’s still there, and I still ask it, but there is no answering that question. I can’t go back. The questions we ask now are, where to? What next? How can we___? (fill in the blank).

The other night Rob and I watched Reagan on the monitor and we just gushed over her.

Rob: I love her!

Me: Me too. I sometimes forget that she has GA-1, b/c now that she’s gone through a metabolic crisis, the effects of that seem to trump the GA-1.

Rob: I agree. But I wouldn’t change anything, b/c she’s still Reagan and she’s ours.

We discussed that with GA-1, you never know what the life expectancy will be, and it can vary greatly based on whether or not you have a crisis. She’s had a crisis. We are trying to help her overcome all her new hurdles, but she may have lasting effects. We don’t know. And it could happen again. That’s where fear can creep in. Not many people have to wonder if their child will make it out Ok from having a fever, a cold or a virus…

While Satan would love it for us to go into a downward spiral of fear, we just can’t live there permanently. We are human, fear will creep in, but I’m not going to make a tent at fear’s doorstep. God tells you not to be afraid, he’s conquered everything. He asks for complete trust and reliance. It doesn’t make earthly, human sense to not worry about the future in an age where “prior planning prevents poor performance.” That’s a lie by the way…in case you didn’t notice, we planned the heck out of everything for Reagan. Ultimately, God has the final say so.

Who in the world do you think you are to second-guess God? Do you for one moment suppose any of us knows enough to call God into question? Clay doesn’t talk back to the fingers that mold it, saying, “Why did you shape me like this?” Isn’t it obvious that a potter has a perfect right to shape one lump of clay into a vase for holding flowers and another into a pot for cooking beans? If God needs one style of pottery especially designed to show his angry displeasure and another style carefully crafted to show his glorious goodness, isn’t that all right?
– Romans 9:20-22

I’m currently obsessed with a new song by Francesca Battistelli called “Write Your Story.”

Part of the lyrics go like this:

I’m an empty page
I’m an open book
Write Your story on my heart
Come on and make Your mark

Author of my hope
Maker of the stars
Let me be Your work of art
Won’t You write Your story on my heart

As I was listening to that today, I thought that in order for God to write his story on my heart, my heart needs to be open, needs to be moldable…it needs to be like clay. It can’t be hard, it can’t be cold…it has to be receiving to the hands that are making it into something new and something beautiful. It has to be accepting of God’s plan, welcoming even.

The lyrics continue:

My life
I know it’s never really been mine
So do with it whatever You like
I don’t know what Your plan is
But I know it’s good, yeah

As I was visiting with my amazing friend Karen today, who flew in from Dallas and made it a point to see me, I told her that this song is speaking to me. My story, what God is doing in my life…I might not see the greatest benefit from it. I might have to go through all this crap for it to impact someone more than me. But I KNOW God is using it for something bigger than just the three of us. I am really encouraged to hear how our story encourages others. But honestly that’s hard…I just want to have fun and have things be easier. I see other kids Reagan’s age picking things up, walking, using their fine motor skills and it’s cute and it makes me wish that for Reagan and for us. Fine motor skills are not Reagan’s forte at the moment; banging two things together, a once enjoyable thing for her to do, is now difficult. I wish for and pray for a prettier road to travel, a lot.

Karen and Reagan <3

Karen and Reagan

yay for Karen!

Karen wisely said, “God didn’t do this to Reagan to make your lives hell,” even though I sometimes feel like we are grazing along hell’s brimstone some days, God is holding us up and out of that fire. Going through this makes me realize how fragile life is, how really incapable we are as humans and how in order to really see God and get through just ONE day, I need Jesus propping me up with his arms.

If all God did for me was send his son Jesus to die, so that I don’t have to have one pinky toe in hell, wouldn’t that be enough? Isn’t that more than enough for the creator of the universe to do for me, for everyone? And yes, that’s the big picture and in the grand scheme of life and eternity, our story is just a tiny stretch of road and this won’t be our life forever.

For now, we are simply enjoying Reagan and who she is. She’s Reagan, a beaming ray of light. She lights up a room and God is using her to transform us and he’s using her to do things we don’t even know about. I am proud of her and proud to call her my daughter, and so is Rob. We are blessed b/c she’s here with us. Not all parents can say that about children that have gone through a traumatic event. But God never fails…he never has, and he’s not going to start with us.

comments +

  1. Ashley

    May 17th, 2014 at 3:36 am

    I love the shit out of you.

  2. Diane Rossi

    May 17th, 2014 at 3:56 am

    One day, way down the road, I hope you compile all these journal entries into a book to be published. You are saying so much in your blogs that would bless so many people who suffer or are in crisis.

  3. Sandy Traugott

    May 17th, 2014 at 6:06 am

    My heart is full, touched, and cries out with you to our God who is so much bigger than all we face. Thank you for how you pour your heart out before us. You both are being so courageous, bold, an example of pure love … many, many people are being touched as you live out your lives loving your precious girl who we all are also adoring.

  4. Sandra Esfahani

    May 17th, 2014 at 7:39 pm

    Anne-Marie – Your words give me such comfort and love! I want to send it back to you and lift you up ten fold and send heartfelt blessings every day. Reagan is loving you back as you continue this journey and exceed all expectations! So proud of you as I know your faith and strength is paramount! Love you to the moon and back. Sandra

  5. Cindy mckinney

    May 20th, 2014 at 1:03 am

    God is so good. If we could just see the whole picture in this life, but God has a plan. I am praying for your family and know that God hears my prayers. Sending a hug tonight too. I felt blessed tonight reading your blog. I felt God was speaking to my heart through you and your words.

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