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?"

Saturday, January 3, 2015

New Year

Here we are, in a new year. For many people, New Years is a time of renewal, resolutions, fresh starts. For the parents of a child with special needs and a terminal condition, it is such a bittersweet thing. It is the promise of yet another year that their child has survived.

But there is also the fear of "What if this is THE year...?"

Oh, the nagging reminder that lives with us each day. Sometimes we can go days without thinking about "it". But other times, it threatens to choke me with the weight of it.

Will this be the year we have to say goodbye to her?

Even when things are going "well" and she's been healthy (for her) and been out of the hospital and relatively stable, there is always that nagging fear in the back of our minds. The holidays are also a hard time for that, and a constant reminder.

What if this is her last Christmas with us?

The pressure to make it all as perfect as it can be, just in case there isn't another one...

So, will you please pray for our hearts? It is a lot to handle. And yes, I know we shouldn't worry about such things, but it can't be helped. It's there. It hit me the very first Christmas, especially as I took down the Christmas decorations. I began to cry and wondered if she'd be around to see them again the next year.

Of course, we have been blessed now with FOUR Christmases with her, and pray for many more. But the next one is never a guarantee, for any of us really. We thought last year that she wouldn't be with us at that Christmas, but she pulled through and we had her then AND this past one. And we are thankful.

On another note, please pray for her health. There is SO much sickness going around right now, and we've had several close exposures to the flu in particular, and our oldest is currently sick with a low grade temperature and sniffles. It is once again a reminder that even when she is doing well, she is just one sickness away from serious complications. Thank you!

Thursday, December 25, 2014

Merry Christmas

We were so blessed to celebrate Christ's birth together this year. Enjoy some pictures from our day!

Sunday, December 7, 2014

Mary, did you know?

"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 Much To Do...

...well, you know how that phrase goes. And at this time of year, even more so! Add on to that the holidays, normal stuff of having 3 kids and running a house, a ten-year wedding anniversary... OH, and a NEW (to us) house that has a LOT of work needing to be done, and, well, you get the picture.

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

New House, Old Fears

Isn't that the most beautiful hallway you've ever seen? That is the hallway in our soon-to-be NEW house!! We started looking around at homes a few months ago, just to see what was out there. We currently live in a two-story Colonial home (that we LOVE), but the bedrooms are all on the second floor. Waverly has gotten a lot bigger the past year (36 pounds now!), and it simply got unsafe to be carrying her up and down the steps. We ended up finding a home that we loved, that had all the bedrooms on the main level and had hardwood floors, and was in our price range! We close on the house this week.

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

Back home!

Waverly was able to get her MRI without sedation!  I kept her awake all day and then we gave her melatonin right before, and she did great!  

Thankfully, the results were "no new findings" with her brain. If they had found something on the MRI, honestly it would have been pretty bad news, so the fact that there was no change is good. 

But it does mean that we don't know why her seizures have increased. At this point, the only thing we can think is simply that the seizures are no longer responding to the medication. We have increased two of her meds, and will go from there. 

She was able to come home yesterday afternoon, and we are so thankful for that! 

Enjoy a few more hospital pics. 

Our sleepover arrangements. (Not comfortable, in case you're wondering.) 

Heading in to the MRI. 

So sleepy. 

On the way home! 

So happy to be snuggling with mommy at HOME!!