Thursday, July 23, 2015

When Plans Change

Today marks 81 days of life in the NICU. Today was also suppose to be the day that we were finally going to take our son through the hospital doors. But plans changed.

I've been able to take some curve balls with stride during the past 12 weeks here, but today was different. Today I felt devastated. Heartbroken. Sad. Frustrated. Defeated.

Today I also was humbled. Joel and I had taken down nearly all of his decorations. We said good bye to our nurses and friends.... because when they are pretty much the only people you've been around the past 3 months, they become friends who understand and love you through this big life event. He passed the car seat test. We took our CPR class. We finished all of our discharge checklist. He is gaining weight. We got comfortable with the easy coasting. We were used to taking only steps forward. It had been weeks since we've had a set back with Anchor's care; we were past that.

But we weren't. And we aren't.

During his morning check up, on the day of discharge, our little guys blood pressure was up. It had been slowly creeping up the past few days but we were told this is something we would just keep an eye on during our out patient care with our pediatrician. But this morning, we were told that it's high enough to be concerning. Anchor had to do more blood work and began blood pressure medicine per the request of the pediatric nephrologist from Seattle Childrens. They are sending his labs into Mayo Clinic for more comprehensive testing and to check kidney function.

So we are here. This is where we'll be until at least Sunday. And even though it's hard, and it sucks, and I'm sad, I know that this is exactly where we are suppose to be. The Lord's timing is always perfect and we will rest in that today.... and always.

Tonight, I will sit here, constantly being reminded of the blessings and constant favor God has shown us during the past few months... and I will rejoice.

Thursday, July 16, 2015

I Write.

For some reason, I have not been here. Writing. On this blank, white screen.

Maybe it has been that I've been in the car the past 73 days. Driving back and forth to the hospital. Maybe it's been trying to nurse a teeny tiny baby with big huge boobs. Maybe it's been the lack of sleep. Or the lack of coffee. Or because I can't get these 'bing bings' from the monitors out of my head.

But what about the in between minutes and sometimes precious hours I was spending with our girls. Maybe it was because we were sitting on the back deck 'washing our toes' in the inflatable pool. Maybe I haven't written because I was cheering on our girls during the few games I got to watch this season. Maybe it's because we were hanging humming bird feeders, watering our new garden, or serving pretend 'cheeebugers' from the window on the new playhouse. Maybe.

Maybe it's because I'm drowning in medical bills and doctor appointments. Maybe it's because all I've been able to think about is which education is best for our two precious oldest daughters. Or maybe I haven't even opened my computer in weeks because I've been cleaning closets and spending my spare time journaling, sleeping and reading books that have been sitting on my shelf for too long that need to get finished. Maybe it's because Joel and I have been binge watching Scandal because our girls are away and we are completely bored with a list of to dos a mile long. Maybe.

But I think the main reason I haven't been here, why I haven't been present and openly talking about our journey is because the devil is telling me that no one wants to hear it. That I could never tell this story good enough. The story that I'm living. The journey that I'm on. That it wouldn't mean anything to anyone else. He's been telling me that I don't have time to share.

Sometimes it takes a sweet soul to remind you that Satan is not in control. Jesus is. And our story, this incredible story of ours... our everyday life...  the boring, the miraculous, the hard and sweet, the scary and joyful.... is meant to be shared.

I named this blog Everyday Jari. There is nothing special about me. No super powers that are getting me through this season in life. I deserve nothing. But I want this story, our story, here. I want to be raw and real, authentic and genuine... in the crazy and the lazy (<---- I'm already starting to pray for lazy days!)... but.. BUT I want to glorify Christ and live for Him. I want to share. And it's time I choose to be brave and talk about everything we've been going through. If for anything.... for me. For my family to have as a journal during this incredible, wonderful, stressful and beautiful season of our lives.