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I remain hopeful

“Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Delight yourself in the Lord and he will give you the desires of your heart. Commit your way to the Lord; trust in him and he will do this: He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun. Be still before the Lord and wait patiently for him; Refrain from anger and turn from wrath; do not fret – it leads only to evil. For evil men will be cut off, but those who hope in the Lord will inherit the land.” Psalm 37:3-9

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“They lived happily ever after. These may be the most beautiful and haunting words in the entire library of mankind…this is written on the human heart, this longing for happily ever after.” – John Eldridge, Epic

Today is the year anniversary of the day we came home from the hospital when Reagan had RSV. It is also the year anniversary of one of my most cherished memories. The night before, I told AM to sleep at home. We had been in the hospital for a week and were exhausted. The room we had only had one hospital bed, so I decided I would stay. I would wake up in the morning to mix Reagan’s bottle and hope she would drink something as well as make her some breakfast since she was eating like a champ.

I had woken up before her and started fixing her food in the dark and silence, at least the silence of the hospital. As I was almost finished, I heard her begin to stir. She was waking up. I looked to her crib and saw her lift up her head and look around the room. Her eyes landed on me and with excitement and relief, she let out a word I have only heard that once. “DA-DEEE!”

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As she said that word, she began to crawl to the side of the crib I was on. She was excited to see me. She was relieved I was there with her. And she wanted to be closer. A year has gone by and I have not heard those words again since. And while there is pain in my heart over everything that has been stolen, especially this, I remain hopeful.

Selfie Sunday

Somedays the tears still come through and I succumb to the loss and grief I’ve suffered, but I still have hope. I hope in a future, that among other things, will include hearing Reagan call out to me “DA-DEEE!” in excitement and joy. I long for moments like this to happen, mostly so I don’t have to live only with the memory and the loss of them. I long for that happily ever after.

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Unexpectations

There’s things you just don’t expect when you think of your life plan. Having a child with special needs is one of them.

When Reagan had her metabolic crisis and we were in the hospital for two weeks, some Disney characters came around to take photos with the kids in the hospital. The photo we got was so depressing, at least for me. First of all, it looks like it’s from the 80s, b/c it’s a polaroid so there’s a look of dinginess about it. Secondly, even though Rob and I are smiling, the amount of pain we were in was practically unbearable. I guess we put on a good face for the camera. When it developed, I looked at it and just cried.

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“Are all our photos going to look like this now? With all sorts of machines and tubes or wires?”

I would describe our entrance into the world of special needs parenting as a violent push over the edge of a high mountain. One day Reagan was a typically developing child, and the next she was a 13 month old with the skills of an infant. That’s violent. That’s drastic.

We’ve come a long way and are accepting of our circumstances (most days). But I’d like to highlight that it took time navigating the path toward acceptance of our new normal. It’s certainly possible other people could roll with that punch and just keep going, but I think they would be remiss in not validating feelings of grief, sadness and loss. Doing that has allowed Rob and I to have a healthy view of each other, our family and a greater understanding of who God is.

That’s why today…when I look at this picture of Reagan in her walker, I’m not sad. I’m filled with joy.

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I know the toil that went into getting this far. I bet if a stranger saw us walking Reagan in her walker We’d get the pity stare, “oh…that poor family, that poor girl; that’s just so sad.” No, it’s actually amazing. It’s actually a visible miracle. THAT is what IT IS.

Reagan has a sticker on the front of her walker from the Be Still Clothing co. with Exodus 14:14 on it which says, “The Lord will fight for you; you need only to be still.” It’s an awesome reminder for Rob and I when we take Reagan walking…I read that over and over. There’s another sticker at the very bottom of her walker that says, “Be still and know that I am God.” These are constant reminders for us not only when we take Reagan on a walk, but reminders we need to tell ourselves daily.

And those purple shoes!

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Shoe shopping for PURPLE SEQUIN shoes! She kept them on for hours!

She picked out those purple, sparkly, sequin shoes. She squealed and laughed when she saw them, so…I bought them.

Typical, every day things that we are doing, going shoe shopping, going on a walk; I didn’t think they would be possible. God has renewed our strength, our faith and given us plenty of reasons to smile. I can’t pretend every day is like that…there are some days that I want to bang my head into our sliding glass door. I used to think I felt that way b/c Reagan has special needs and everything is just the pits b/c it’s only hard for us! But now, I realize it’s hard to parent a two year old for almost everyone. You guys…TWO is hard!!

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Being two is tough!

Reagan’s additional challenges are just part of it, not ALL of it. She’s got special needs, but she’s also a typical, challenging two year old and that’s a relief and a big thing for me to remember.

This past year I’ve had to get rid of expectations. The life plan I envisioned was re-defined. I’ve had to be still. I feel like I’ve wrestled with God and I’ve also allowed God to fight on my behalf. God has been there for all three of us. He was in the hospital. He was at home. He caught my tears, He smiled with joy when my heart exploded for Reagan’s new milestones. He has softly put me to sleep with tear stained cheeks. He is more than enough, more than I expected.

Secrets under the tree