The Heart (and the surgery)

August 5, 2019

Filed in: The hospital

I can’t believe summer 2019 is coming to a close. What a wild adventure our family has gone on; our hearts have been stretched, broken and uplifted. We’ve stepped outside of our comfort zones, seen new things and watched as Reagan’s grit and personality continues to unfold with every new word she’s able to say.

Going to DC was feral and hard, but Wyoming was redemptive. It wasn’t perfect, it wasn’t everything I hoped it would be and imagined in my mind, but it was amazing. My personal goal for the second half of 2019 is to bond more with Reagan and to deepen our relationship. That’s why DC hurt so bad, there were literal slaps in the face. But I had to push through. As a family, we HAD to keep climbing.

And then we made it to the mountains of Wyoming and I think they are the prettiest mountains I’ve ever seen.

Wyoming photos by Peter Lobozzo

I’m so glad we did these photos. Ever since Reagan was a baby, we’ve had photos taken regularly, and it started when I purchased a year photo package from our lovely friend and photographer Kristen Weaver.

Right after our last photo session (below) everything changed.

Pictures would be different. Life would be different.

Photo by Ashley Blahnik of Dearly Photography

But pictures would be the only thing to help us remember the seasons we were in, the feelings we felt and the things God was doing in our hearts in those moments. And this last photo above, is about six weeks after Reagan’s crisis…her grit never changed.

Photo by Katie Williams

Now I’m obsessed with doing pictures when we go cool places or when big things happen. And who could ever forget the Canada photos when Reagan lost a tooth in the forest?

Whether we were in a valley or climbing a mountain, whether we felt storm clouds or sun rays on our face, the pictures capture the season and remind me of what our family was facing in those moments.

The Wyoming pictures will remind me of how a few weeks before we had some of the toughest weeks with Reagan and a really awful family vacation. It will remind me that we pushed through and got on another plane filled with hope for a better vacation, which we had. And it will remind me that just two short weeks after getting back, Reagan would be having heart surgery.

Yes. On August 8, 2019, Reagan will have heart surgery to repair her Atrial Septal Defect. We’ve always known she’s had this, ever since she was two days old. But if you know our story, you realize that sometimes there are bigger things to overcome than heart surgery, which is kind of crazy. Reagan’s heart surgery has taken a back seat for many years in the hopes that the hole in her heart would close on its own, it did not.

I am scared.

My heart hurts.
Look at this girl.
She’s come so so so so far.
She’s independent.
It is amazing.
It is hard.

Rob calls this her “Sound of Music” photo

Rob and I have allowed our hearts to have emotional and spiritual surgery as God has taught us new things, opened our eyes, minds and hearts to how he views us, how he views her, how he views his children, the world.

Even though I’m scared, God is with me. He’s with our family. One of the most memorized Psalms, Psalm 23, talks about how even when we walk through the valley of the shadow of death, we don’t have to fear any evil, because God is there with us. When things are scary, God will camp with you right there, he’ll prepare a table and sit down with you, while your enemies watch. Life includes shadow of death times, and we’ve had our fair share.

So after fighting infertility, pursing adoption, receiving a genetic disorder diagnosis, going through a metabolic crisis and seizures, being given a rare movement disorder diagnosis, placing a feeding tube, and the myriad of issues that come with all that, combined with my own brain surgery two years ago, we are diving into heart surgery this Thursday and Rob and I really do covet all of your prayers.

Isn’t this life so crazy? Like no one says, “I’d like to say yes to all of those things above.” But God…he just knows what he’s doing. If our family can go through all of that, and still say YES to God, YES to Jesus, and put our faith and trust in His hands, you can do that too. I can trust God with my present and my future and I can trust whether I’m eating in the presence of my enemies or my friends, he’s got me.

I whole heartedly believe Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

We will always walk forward. Our family motto is: Never Backwards. Always Forward. Always. We will always be standing alongside Reagan as her story unfolds, just as I know so many of you stand with our family as we share this unbelievable journey. Thank you for that. Please pray for Reagan’s heart, her surgical team and our hearts too. Watching this sort of stuff go down with your child is one of the hardest things a parent can do. Thank you for your prayers.

xoxo

comments +

  1. Sharon

    August 5th, 2019 at 12:15 pm

    I love you all and will be praying for a speedy recovery. xoxo

  2. Christa

    August 5th, 2019 at 1:52 pm

    Reading this and praying for you all. Regan is a fighter and she will prevail. I pray for the surgeons and their skill. You’re never alone and I know you remember that even when the walk is lonely. I’m here for you always and sending your our forever love, protection and blessings upon your family. May Christ strengthen you and give you the peace that passes all understanding.

  3. Susan Chicone

    August 5th, 2019 at 2:48 pm

    I have all of your names written on all my calendars. I will be in prayer not only in my quiet time but also when I see your names. Thank you for continuing to share your story. There are many people who care!

  4. Heather

    August 5th, 2019 at 3:16 pm

    God Bless and we will definitely be praying !

  5. Sandra Buckner

    August 5th, 2019 at 3:32 pm

    Praying for you all, Reagan’s medical team and especially for Reagan to heal fully and quickly.

    Love your pictures, beautiful family!!

  6. Susan Barth

    August 5th, 2019 at 4:12 pm

    I am Jewish and affiliated with the Chabad Lubavitch movement and will have Lauren in my prayers and you and Robb and will say the daily psalms with her in mind.
    Please let me know how the surgery goes and keep in touch. You are part of my heart and it is beating for all of you – best of luck and the prayers will flow

  7. Susan Barth

    August 5th, 2019 at 7:19 pm

    I meant having Reagan in my prayers – exactly how old is she – we have a custom of reciting the psalm which corresponds to the next year. Please let me know how old Reagan is and I will most definitely on August 8 recite the psalm.

  8. Sue Scott

    August 6th, 2019 at 8:37 pm

    My prayers will definitely be with Reagan and you and Rob during this trying time. I pray the surgery goes well and she has a speedy recovery. I don’t know if you remember me but your Mom and I went to Youngsville High School together. I met you at your grandmother’s funeral some years ago. Reagan is growing up so fast and is a beautiful girl. She is so blessed to have you and Rob as her parents!

  9. Alison Pratt

    August 7th, 2019 at 4:52 am

    Sending so many prayers your way for Regan’s heart and healing and for you and Rob to continue knowing God has a plan ❤️

  10. Sandy Dorsey

    August 8th, 2019 at 4:48 am

    Praying fervently friend!!

  11. Susan Barth

    August 8th, 2019 at 6:03 am

    today is August 8 Israel time and Reagan’s surgery in my thoughts and prayers. Just recited psalm 6 which is for such a situation. Please know how much her successful surgery and recovery is in my heart. An expression of a renown Lubavitch Rabbi was “Think Good and it will be Good” so please have that adage in mind and all will go well!

  12. Randy Brummitt

    August 8th, 2019 at 4:32 pm

    Praying for Reagan, Rob and Anne-Marie in the mighty name of Jesus!

  13. Susan Barth

    August 9th, 2019 at 6:30 am

    how did the surgery go?
    Praying for good news

  14. Susan Barth

    August 20th, 2019 at 8:34 pm

    saying psalms every day for the good health and good news for Reagan. Would love to hear how the surgery and recovery is going?
    Will continue to have Reagean in my prayers

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