A New Year

So teach us to number our days
that we may get a heart of wisdom.

Psalm 90:12

2017 was a hard year. A good year, too, but also a year of learning a new normal- or maybe better explained as a year of realizing that normal will never look the way it once did.

Just before Eden's first birthday, we put her on hospice care. And while we've known that her condition is terminal since the very beginning, signing those papers and taking that step was very hard. But working with hospice has also been a huge blessing- they've helped to remove much of the burden that was on me regarding medications, prescriptions, insurance, doctor appointments, therapy, and on and on. They've also been able to help Eden in many areas that have made our day to day life much easier- she cries much less than she once did, she actually sleeps now (though she does still wake up throughout the night), and overall her comfort and disposition have improved greatly. 

So, in many ways, I'd like to say she's doing better. And in the ways that impact our family, she is doing better. But the progressive nature of her disease is taking its toll on her growing body and we are also seeing those signs. She struggles now with temperature regulation and often is warm in certain areas of her body and very cold in other areas. She has a neurogenic bladder and that has gotten worse over time- meaning, her brain doesn't tell her bladder to empty regularly so she often goes at least 24 hours without urinating, putting her at significant risk for bladder infections. The issues with scoliosis in her spine are worse and at her last appointment we also learned that her hips are out of socket due to her lack of mobility. We have some things in place to try to help with some of these issues, but we also know we are fighting a losing battle- we will do what we can to improve her comfort and preserve her quality of life as much as possible, but this is the nature of her disease. Things will get harder as she gets bigger- and we are watching that slowly unfold. 

So when I look ahead to 2018, I don't presume that it will be any easier or better than any other year. Of course I love fresh starts and I love setting goals and thinking about the things I want to improve in the coming year, but as it concerns our little baby, there is no happy ending in this life, and the forward march of time puts us closer to her last days. And only the Lord knows if that'll be in 2018 or not. 

But I can trust God with that. And I'm learning that in every area where there's the sting of grief and loss, I can trust God with that, too. 

When I woke up this morning thinking about the coming year, some of my favorite verses came to mind from Lamentations 3, verses 21-23 "But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness." And that's my hope for the coming year- whatever it brings, whatever trials we face, God will be with us and his love and mercy will never end.

Because it's been so long since I've posted an update, here are some pictures of our family from the past several months.

 Luke turned 3 at the end of May. He is a happy, delightful little boy and I'm so thankful for him!

We enjoyed a nice long weekend in Michigan over the summer- beach days, ice cream, and lots of fun. 

The twins turned 6 and we celebrated with a little family party. They are curious, adventurous, happy boys and they fill our home with so much life! 

Don and I celebrated 14 years of marriage. He's such a great husband and father- I'm so thankful for him. 

The twins started kindergarten this year- they love school and are doing great! 

The weather this fall was beautiful and I was able to bring Eden's chair outside on many occasions and enjoy sitting on the porch with her. 

We had Eden dedicated at church this fall and she looked so pretty in her little pink dress. 

Jacob continues to be an adoring older brother; he's a big help to me in how well he cares for Eden. 

The boys ask often if Eden can sleep on them- they love snuggling her. 

Luke also loves to "play" with Eden- I'll admit these moments are almost always joy mixed with sorrow- so thankful and happy for the love they have for her, and yet sorrowful too over the things that will never be. I know they'd love to have a baby sister crawling all over the house, laughing at their silly faces, and actually playing with them. But God knows this, too, and I believe that God is doing something special in their hearts as well. We talk a lot about what Eden will be like when Jesus comes back and our boys enjoy talking about how Eden won't have a tube and she might love pizza like they do, and she might run faster than them, and on and on. 

This is one of Eden's pieces of equipment. It is a stander that is helping her put some weight on her bones to try to strengthen them and slow down the process of osteoporosis. 

We had some family pictures taken over the summer. Our crew is not what I would have imagined. The other night Don held Eden as I fed her manually through a tube in her stomach (our feeding pump wasn't working and I had to push the formula through by hand). I looked at him and said, "Did you ever imagine this is what life would be like?" We both smiled at each other and I knew we were thinking the same thing- it's actually better than we could have imagined. Harder, yes- no question about that. But richer and fuller, too.

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I had the opportunity to share Eden's story a few weeks ago at an event at our church for people who are grieving during the holidays, and though it was our story, it was ultimately the story of how grief and the gospel intersect, and the hope that we have because of Jesus. You can listen here if you are interested.