Wednesday, March 11, 2015

Heart Thoughts: Ongoing


I just read the story of Tiny Tate a few days ago, a little guy with Miller-Dieker Syndrome from Australia who just lost his battle at only 8 weeks old. And I was struck by the article at the outpouring of support and rally cries for his family. And it hit me-this is our every day. Not to take away from his story and his family. The reality is, that for many people, this is their every day.

And then again this evening, I read the blog of another acquaintance who is pregnant with her first sweet baby, and there are many concerns with the baby. And I cried. Because I can so identify with her thoughts and prayers.

I realize I have been more quiet on here for a while now. It hit me tonight that one reason is because: nothing is really changing for us.

We live this life every day. It's become our normal, but it is so far from normal. There are days that the thoughts and concerns of my heart are almost too heavy for me to bear. There are days I mourn all the things we can't do with her, the things we can't see her enjoy. (Did you know I've never heard her laugh? I've heard laughing-type noises, but I've never heard an actual, true, full-on laugh. That breaks my heart.) There are days I am just so exhausted from all it takes to be a good mom to her, and my others, and wife, and friend, that I can hardly stand it. But then I can't sleep, because my thoughts are too numerous and my heart is too heavy.

Yes, I am SO grateful for the things that she CAN do. For the almost-4 years that we have been blessed with her! For the tiniest of victories that seem SO big to us!

But certain times, I am reminded that everyday life for us is a struggle, an on-going day-by-day struggle. We have much to bear, and are faced with it daily. And when the day comes that we do NOT face this on-going daily struggle will not be better. For our struggle will remain, only it will be in the form of grief and loss.

So for now, we praise Him. Because no matter the circumstances, He is good. His grace is sufficient and His mercies are new every morning. (Oh how we cling to that!) He is strong to bear with us, and His grace is all the greater for us.

Monday, March 2, 2015

Siblings


I love these pictures of the kids being siblings and loving each other. Can you spot Waverly in the first pic? 

Thursday, February 12, 2015

Doing Better


After a rough night Sunday night, with sats only in the upper 80s/lower 90s with 8 liters of oxygen in her bipap, I took Waverly to the doctor on Monday and in for a chest x-ray. She was wheezing so badly that you could hear it just walking into the room. I was nervous they would send her to the hospital, but her x-ray actually looked ok (for her). We increased pulmicort (steroid) nebulizer to twice a day to try to help her lungs open up some, and increased the Robinul to help dry up her secretions more, and that seemed to help. She's still quite junky, but doing much better, and was even able to be off oxygen a little bit yesterday. Thanks for praying for her, and please continue to pray that she recovers more and gets back to baseline for her!

Monday, February 9, 2015

UVA update and sick





Sorry I didn't update after our UVA visit. There wasn't a lot to update with that, other than the doctor and I discussed a few medications, and he basically said to research which one we wanted to try and let him know. So, I've been working on that this week. After we got home from the trip, she got sick the next day with respiratory stuff. She's struggled all week, but hasn't been too too sick. Over the weekend, however, she's needed even more oxygen and last night her sats were only in the low 90s with 8 liters of oxygen on her bipap. So, this afternoon we are heading in for a chest x-ray and doctor visit. Please pray for wisdom, if she is ok to come back home or if she needs to head over to the hospital for more treatment. Thank you!

Saturday, January 31, 2015

UVA on Monday

Just a quick update to let you know that we contacted the neurologist this past week about Waverly's continued struggle with seizures, and he worked in an appointment for her early Monday morning. Please pray for safety on the road, and for wisdom for the doctors and us as we try to determine the best way to help her. She's been having hard seizures several times each day, and many more "smaller" ones as well.

We Moved!!

Sorry for the silence lately. We have been SO busy working on our new home, and last week, WE MOVED! That first night, we were able to wheel Waverly from her bedroom to the family room, and it was awesome! I have to admit that I did cry when I took her from our old home to the van to drive to the new home though. It was very emotional. While it is exciting to be in a new home, the reason behind it, that we HAD to move because of her condition, made it very emotional. Not to mention that our old home was our first home together, the place where we brought all 3 of our babies home, etc. We are praying for the perfect family for our new home, when the time is right. If you know anybody in the area looking to rent or buy, please send them our way!

Friday, January 9, 2015

Mundane Faithfulness

As I read this, I was holding my daughter, who should be running around like crazy playing with (or fighting with!) her siblings. Instead, she had just had a hard seizure, and was continuing to twitch. But even in that moment, there was such beauty. Snuggling all 3 of my children on the couch. A warm home. Time together. Holding that very child who has already outlived her diagnosis. Such beauty in the midst of such pain.

"How is your brokenness meeting you? Are you avoiding it? Can you see how it can be made beautiful? Can you see how the pain in your story could be redeemed to something beautiful? It’s a fight to see the grace through the fog of the pain- but it’s there. It’s there. Are you looking for it?"

http://www.mundanefaithfulness.com/home/2015/1/7/how-are-the-kids