Who I Was Three Years Ago

We had put up a few sparse Christmas decorations, excitedly anticipating the arrival of our baby girl soon after Christmas. I had made a couple of freezer meals, and I had bought diapers, and I had washed pink clothes hanging in the closet.

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I am a completely different person now than the mother standing in this picture, who had visions of so many things dancing in her head about having a daughter…so many things that weren’t important.

It’s hard for me to even look at these photos sometimes – all that I didn’t know then, and all that I thought I knew then.maternity1

When we were being interviewed on air last month for the Children’s Miracle Network Radiothon, the radio host enthusiastically asked us if Christmas was such a time of celebration and excitement for us, after such an emotional Christmas three years ago when she was critically ill.

I carefully said that it is, but I also think that Christmas time does, and perhaps always will, take hold of our hearts with a reminder of the intense grief and pain of preparing to say goodbye to our child. It’s not all cheer and joy at Christmas anymore for me, because every year this pain boils up deep within me – as I drive on the same streets of the route to the children’s hospital or see the hospital building with its hanging wreaths, that pain can feel as raw and as present as it was three Christmases ago when we were watching Brenna’s little body struggle to breathe.

When people say “hearts heavy with grief,” that is not figurative. It is literal. Praying and crying for each minute of your child’s life will leave you clutching your chest, as your heart becomes its own being, so weighted and so aching that your body shifts its focus on that heaviness and forgets how to breathe and to think.

This time of year is truly a celebration, but it adds a little extra weight to my heart, as I vividly remember the overwhelming grief three Christmases ago.

Three years ago this week, I didn’t really even know what grief was. Not in this way, anyway.

Three years ago, I had never heard the word “ichthyosis.”

Three years ago, my life was simpler, more selfish, more naive. Uninterrupted.

I have a difficult time even remembering the person I was three years ago.

And that’s a good thing. Because God finds us when we are at our lowest and our worst. Broken. Desperate for him.

I can say with complete honesty that I am changed for the better – much, much better – but that doesn’t mean it’s been pretty. It’s been a lot of tears, a whole lot of tears, and the kind of stress at certain points that affected my body to the point that my hair was falling out.

But my heart?

Today, it’s still heavier, though not with grief. It’s heavier from being so full. Full of unconditional love, of passion and drive, of fear and hope for my children’s lives, of respect for my husband, of admiration, of gratitude. Especially gratitude.

God popped my little bubble and gave me the opportunity to think and to feel and to see with new perspective – with all the mess and tears along the way that comes with gaining that new perspective. Our world was shaken up, and because of that, the strongest and best pieces of our lives remained and grew even stronger.

I’m so glad I’m not that person I was 3 years ago.

That young mother in those photos had a lot of expectations about adding a second child to her family.

Instead, she has learned that our expectations should lie, in all circumstances and situations, in the beautiful love and strength and purpose found in our awesome God.

To School, She Goes

This week, we wrap up our final therapy appointments and fill out final reports with Early Intervention, the birth to age 3 program that Brenna has been a part of for the last couple of years.

And we say goodbye to our wonderful therapists, as we take on a whole new therapy team…within the local school district.

In January, Brenna is going to walk through the doors of the elementary school… backpack on, personal folder for art projects and paperwork, cubby with her name on it.

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We’ve had two big meetings this fall with a whole host of people on board to help Brenna’s transition to school go smoothly and to ensure that she is safe, healthy, and thriving. We absolutely cannot speak to our experience highly enough, as we’ve had teachers, therapists, social worker, special ed coordinator, principal, nurses and more completely on board to compiling every last important detail of her IEP (individualized education program) and her health background and health plan.

I have to admit that as we planned on Brenna attending preschool, we always had August in our minds. That’s when kids start school, right?

When the school team mentioned Brenna starting in January, after the winter break when she turns three, I looked at them like they had 3 heads. And when I threw out my assumption that she’d start in August, the whole room looked at me like I had 3 heads.

Eventually, we decided to start her in January, and the school agreed that 2 days a week would be beneficial to easing her into the school setting with less negative impact on her – also known as, we were all a little concerned that it would be a huge shock to her system to have to get up early 5 days a week when her body really needs a lot of sleep and rest, especially in the middle of cold and flu season.

We’ll reevaluate at the end of the school year to see what she might be able to do for summer school, and then we have every expectation that she’ll attend 5 mornings a week starting in August.

Brenna is going to be a Monday-Wednesday morning kid right now, with an extra trip to school on Tuesdays just for occupational therapy, because the OT is not in school on the days she will be.

Which always leads to one very important detail – Connor is also in school on Mondays and Wednesdays. Which means… Mommy will get 5 total hours of kid-free time each week. There is not enough space for exclamation points in this blog post to express how I feel about that :)

Having said that, it is surreal to be preparing to send my baby off to school. My baby that I’ve spent the last 3 years trying to keep, to put it bluntly, healthy and alive.

Because of this, I’m so grateful to be in a fantastic school setting…which is the primary (only?) reason that we moved here. I’m so grateful that we only live 2 minutes from school and that I work from home, so I can be there when I need to. And I’m so grateful to have nurses and school personnel who have taken the time to research Brenna’s disorder and read all of the information I’ve given them from FIRST.

No one at the school has ever dealt with ichthyosis before, so this will be a learning process for us all. But our school system is more than willing to learn with us so that Brenna will be in the best environment and receive any special care she needs. We emphasized to them that we want her to participate in as much as possible, and we want her to be able to figure out for herself if she isn’t able to do something, instead of us deciding that for her.

As we get these detailed plans in place, I am hopeful, excited and fearful, but I am also certain of one thing:

this girl is incredible, and she is going to soar.

 

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Our Favorite Christmas books about Jesus

We love Christmas stories around these parts – we have a basket sitting by our fireplace packed full with our favorite holiday books. And don’t get me wrong, Santa gets his spotlight here and I definitely adore the magic that he brings to Christmas morning. But my absolutely totally favorite children’s Christmas books are about the Christmas first celebrated hundreds of years ago.

Reading about Jesus’ birth and how he changed the whole world is so overwhelmingly incredible, and each little story that we read with the kids is such a beautiful reminder of the greatest gift God sent to us. I love every opportunity during this season to talk with my kids about God giving us his son, and I think children’s books really help to drive home that message.

Here are our favorite Christmas books about Jesus:cIMG_7496

1. The Story of Christmas. I love this series of books – there are all kinds of stories, from Easter to Abraham Lincoln, and they are written in a simplified and engaging language for kids. This is one of the best books to explain Christmas and the importance of Jesus’ birth, in my opinion!

2. Room for a Little One. This is a precious story in which the animals all join each other in the barn, with the repeating message of “there’s always room for a little one,” before finally welcoming Jesus into their barn too.cIMG_7501

3. The Christmas Baby. This book ties in the wonderful story of Jesus’ birth with the birth of all babies – how excited the whole family is for the baby’s arrival, just as Mary and Joseph joyfully welcomed their baby.

4. Song of the Stars. Though the birth of the King of God seems to mostly go unnoticed by people, all of the other creatures and living of the earth rejoice with joy at his birth.

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5. The Crippled Lamb. This book just makes me cry every time! I love Max Lucado’s children’s books. This book has several great messages… it’s about a lamb that is hurt and can’t go into the fields with the rest of his flock. He is so disappointed, until he eventually realizes that he gets to witness the birth of a king by staying behind in the stable.

6. The Candymaker’s Gift. I just grabbed this from the library last week, and my kids love it! They think candy canes are the bee’s knees, and this is a sweet story about the invention of the candy cane, and how the candy maker used his talents for making candy in order to share about Jesus Christ.cIMG_7499

5. Mortimer’s Christmas Manger. In this book, a cute mouse wants a home and stumbles across the nativity scene, where he makes himself cozy in Jesus’ manger. Then one night he learns about Jesus’ birth and gives back Jesus’ bed, prays to God to find him a new home, and ends up in a gingerbread house :)

7. Star Bright. A little angel is so excited about Jesus’ birth, but worried about what special present she could possibly give to him. In the end, she sees the wise men, lost in the dark, and comes up with a very bright and perfect gift.

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8. Usborne Nativity Flap Book. Santa brought this book last year to my kids, and they both love it. And pulling open the flaps is great for working on Brenna’s fine motor skills too :)

So, are any of these Christmas books on your family’s favorites list too? What is missing from my list that our family can check out in the coming weeks?

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