Thursday, December 25, 2014
Sunday, December 7, 2014
"The blind will see, the deaf will hear, the dead will live again.
The lame will leap, the dumb will speak, the praises of the Lamb!"
These words to this song have never hit me before with the realization that THIS will be Waverly's reality one day. Wow. What a great hope she has in heaven. That her first steps will be leaping into her Savior's arms. That her first words will be praises to her Creator. That her broken body that experiences the sting of death every day will be made whole and perfect.
During this season, don't let the busy time of the holidays overshadow the profoundness of what we are celebrating. That this Baby who was born was born to die, to defeat death, and to bring LIFE.
Thursday, December 4, 2014
So, this is my PLEA. If you are local to us, WE NEED HELP!
With the help of many, we have almost finished cleaning the new house (LOTS of work, as it was in bad shape). We are now ready to start painting it (everything must be painted now to make it safe for Waverly), and then of course putting it all back together again so we can move in. We have done SO much already, but there is still lots to be done. (I confess, I may have googled HGTV once or twice looking for some sort of program or show that would help us!)
We are open to any and all help! Painting, cleaning, sanding, plastering, yardwork, carpeting, packing, moving, etc. If you have a skill of some sort, I imagine we could probably utilize it in some way. Of course, if you are busy like everyone else this time of year, we will gladly accept donations to hire to get the things done! :)
To those who have already helped us, THANK YOU. We can't wait to be in the house and to be settled and to have a place that better accommodates our family and Waverly!
Sunday, November 16, 2014
Of course, with the new house, and the changes that come with it, old fears are surfacing for me. I first experienced these types of fears back when I was working full time and was finally able to quit my job. It was VERY needed, as it was so hard to work full time and feel like I wasn't able to be here with her (and my older two). I was stressed trying to get to her appointments, and when she was sick and I had to leave her and couldn't be there with her, it broke my heart. And my heart was especially broken over missing time with her, knowing that our time with her is limited anyway.
But as the time to quit that job approached, I got this terrible fear. I wondered, if NOW that I had quit, if NOW was the time for her to spiral downward. What if my quitting was the "perfect storm", opportunity for her to pass? I of course did NOT want to keep working full time away from her and miss time with her. But I was so scared of her passing, and then looking back in retrospect and realizing it was so great that I had quit so that I had that little bit of extra time with her. I don't even know if that makes sense. It didn't help that the very month after I quit, she got very, very sick.
But here I am again, struggling through some of the same emotions. What if we finally decided we needed to make some more permanent environmental changes (by moving into a handicap accessible home), only to find out that she ends up passing away before or shortly after we move?
What if we buy this house for our daughter and she isn't here to be in it for long?
And that is a haunting, aching fear to carry. I know it seems irrational, and why in the world would I even think such terrible thoughts, and don't I know that it's silly to borrow trouble that isn't even there? But I can't help those fears from creeping up and gripping me when I least expect it.
I take those fears to my Father, though. He knows my struggles in this journey, and it is no surprise to Him.
Would you rejoice with us in this good news, but also help carry me in this struggle? And if you are local, and can lend a hand to us with moving help, please let me know!
Friday, November 14, 2014
Wednesday, November 12, 2014
After having an almost 20 minute seizure last night and needing Ativan through her IV, she stopped. She had many more seizures that night until she went to bed.
-that she can have the MRI without sedation and be still enough for a valid test
-for protection if she does end up needing sedation
-for wisdom/answers in how to help treat her seizures and how to proceed
Monday, November 10, 2014
Wednesday, October 22, 2014
The passing of summer into fall this year has brought with it my normal pensive thoughts, and this time I realized why. No matter what is going on in life, what is happening in or around you, the seasons change. There is nothing that we can do to stop it or slow it down. It simply happens. In one aspect, it is God's grace. He keeps things going.
But it represents for me the fact that a time in life is coming that I simply don't want to face. Having a chronically ill child whose condition will eventually take them far too early in life makes you realize that your time with them is far too short. And when that time comes, there will be nothing that I can do to stop it or slow it down. It will simply happen, just like the changing of the seasons. This season of my life will change, and I will be forced to live in the next, whether I like it or not.
I love fall and the beauty that the colors bring. But I know that winter is coming, with its bitter cold and lack of color. Everything will be slower, darker, colder. And so the challenge for me is always to savor the beauty that is here and now, and not fear what is to come.
And oh, how I long for the day when each moment can be treasured with no taint of sorrow or sickness or pain. When each moment is pure joy and worship. Until that day, I will strive to live in hope and expectation, trusting in His goodness to sustain me through these changing seasons.
"He will have no fear of bad news; his heart is steadfast, trusting in the Lord." -Psalm 112:7
Sunday, October 19, 2014
Thursday, October 9, 2014
Wednesday, September 10, 2014
"Is this the name of it? Is this what will take her from us?"
I couldn't help but be gripped by fear at what had become a monster staring at me from my computer screen.
I have cried several times since then. The fear of this virus, that starts just like any other cold or sniffle but turns worse quickly. For children like Waverly, this is bad news. And I am scared.
But I am seeking to remember Who holds her, Who has numbered her days before she was even a twinkle in my eye. He loves her and His plans for her will be accomplished, whether that includes this virus or not, as well as the outcome of that.
Lord, help me trust You. Hear
Wednesday, August 27, 2014
Thursday, August 21, 2014
This is how we spent our day. After a rough night with fever and one throw up, the doctor wanted to see her and then sent her on to the ER for X-rays, blood work, etc. She has aspiration pneumonia and is starting an antibiotic for that, in addition to the one she started last night for a new uti. Thankfully her oxygen sats have been ok although she's had a fever and high heart rate and respirations. She definitely feels bad but wasn't acting too sick so the PICU doctor agreed to let us take her home and treat her here. If she gets worse we will just call him and go straight to be admitted to the PICU. Please pray that she stabilizes more tonight. That her breathing rate and heart rate slows down. And that her oxygen remains good.
Sunday, August 10, 2014
Sunday, July 20, 2014
We left on July 11, which was free Chick-Fil-A day and also 7-11 day. We grabbed our cow shirts and went by Chick-Fil-A on our way out for some free chicken for lunch on the way there. Then, a few minutes from our friends house is a 7-11, so we surprised the kids with a stop there for free Slurpees! (Kathryn thought we were going to miss 7-11 day and was despairing that she had to wait a whole year before getting a Slurpee-I think she thinks they are only available on 7-11 day! Don't tell her otherwise...!)
This was Waverly's set up for sleeping. Can you find her?
One of our activities was going to the Children's Museum. Kathryn loved being a weather girl! She was also so cute, pushing Waverly around and showing her things there.
I was so happy that my sweet friend Brooke and her kids could meet us there to play! We've been friends for over 20 years! (Wow, that makes me feel old!!)
Another van selfie. We don't travel lightly. :)
I feel guilty for the decision.
I feel bad that she was left behind.
I didn't take any "family" pictures at the beach because it wasn't our whole family there.
I felt like there wasn't any "good" decision.
I cringed every time someone said "Oh how wonderful!" when we told them our plans. Because it wasn't wonderful. It was sad. And it was hard.
But I am thankful. And it was also good. This life can be so confusing sometimes. It's hard to know what to feel, because everything has two sides and both are very valid and felt poignant.
Saturday, July 5, 2014
Sunday, June 1, 2014
Wednesday, May 28, 2014
Tuesday, May 6, 2014
There were many times that I did not think we'd make it to this point, celebrating Waverly's 3rd birthday. It's still 2 days away, and as she showed us yet again this weekend, even the next day is not a guarantee.
But I am so profoundly grateful that God has chosen to allow us more time with our precious girl than we thought we'd have.
But know this: even if she hadn't made it to her 3rd birthday, and no matter what the future holds for her or any of us, we believe and know that always, ALWAYS, our Savior never fails.
And He is with us, always.
(For an interview on the story behind the song, go here.)