Thursday, November 12, 2015

The Race

I know I have neglected this blog for a while. Honestly, it gets hard to update when it's just more of the same. More UTIs. More seizures. Lots of good days for her, some not-so-good. We have just been kind of doing "normal" life over here, which looks like a lot of crazy and chaos, but it's normal for us. It involves lots of medications, calls every month to at least 4 companies to reorder supplies, calls to the pharmacy to reorder medicines, follow up appointments with doctors here and there, school once a week, therapies, etc. We are in the process of ordering a new wheelchair, the beginnings of a little project in her room to install a sink and cabinets, continuing to work on the house since we still have plenty of work to do here, keeping up with the older kids who both played soccer this fall, and other normal family stuff like school activities, church, etc.

And me? I've been processing. A lot. And for a while, I would do that here, "out loud". It helped. But I tend to be a private person, so all processing on here was somewhat out of character for me. But the past couple of years, I've gone "back in" to myself. I was busy with working full time for a while, then starting my own business and working hard at that, and honestly (and admittedly), staying busy so I didn't have to think as much. The days of the initial diagnosis, of the shock and grief, of the learning and diving in, the days of fighting just to keep her breathing and alive, left my brain reeling and in need of getting it all out. But as time has gone on, and the days have spilled into weeks that have spilled into months that have spilled into four-and-a-half years now, I think I just grew weary of all the feelings and hard things that we had to think about on a daily basis. So I turned it off. I had to go into survival mode.

Four-and-a-half years ago I found myself thrust into a race I did not know about but had been trying to be prepared for (trials). I didn't know the course or the distance or the method. I was literally dumped at the starting line, the gun sounded, and I was running full force ahead. The pain of the sprint came immediately, and lasted until finally, I was numb. I was still running, but just going through the motions of the race. I would fall sometimes, scrape up my knees, hurt my ankle, stop to wrap it up and then jump back on the course and keep going, as fast as I could. I would take nourishment out of necessity, just before I would pass out, and often because it was rather forced on me by others on the sidelines or at the rest stations. But I would keep on running. The numbness lasted for a while and got me through some of the race.

And then it started to wear off. I started to feel the pain again. But this time, the pain was different. It's more of an ache, with some sharp pains mingled in. And it's more of a mental race now. My struggle now is the breakdown of the muscles and tissues in my body, and the breakdown of my mind as I start to doubt the race and my ability to finish well. Part of the struggle comes in still not knowing the course or the distance. But I have realized that I have needed to slow down for a while now. I was still trying to sprint, and I simply cannot sustain that pace for an indefinite period.

I have no idea what that looks like for me. It's something I've been pondering and praying about for a while now.

Will you pray with me? I don't know if it's more of a mentality than anything, or if there are actual steps to take as well, or just the pace of things. Because I still have no idea the course of this race (it seems to change almost daily at times!), or the distance. I know that at certain times, the pace has to change out of necessity. But there are still many unknowns. That is the part that I both hate, and for which I am thankful. The child in me wants to know all the answers right now. But the parent in me knows that that is rarely the best thing for anyone.

So I will trust my Father. I will trust that He will sustain and provide, for whatever course this race follows, for whatever distance this race is. And I will continue to run.

Sunday, November 8, 2015


Four years ago, we had a huge birthday party for this little girl. It was her half birthday, and we celebrated big. Because we didn't know if we'd even get to celebrate her real one year birthday. Today she is officially four-and-a-half. And this is the best pic I could get of her. Because apparently, four-and-a-half-year-olds can't be bothered to sit still and smile for pictures. I don't have the right words to say what each milestone means for our sweet girl. But I do know that we are blessed beyond measure to have her sweetness every day. We learn so much from her, and she points us to Jesus every day. For not ever saying a word, she sure speaks volumes to us. We love you Waverly! 

(Yesterday, she did not want to take a nap. Five minutes after I picked her up and rocked her, this is what she looked like.) 

Thursday, November 5, 2015

UVA appointment

We traveled to UVA this week for a routine neurology appointment and an EEG. No news really to report. We enjoyed the day together and her doctor is pleased with how she's handling the new medication. We stopped in the bookstore afterwards to plug her in for a breathing treatment. Totally normal, right??

Tuesday, September 22, 2015

Physical therapy

Waverly was not too impressed with physical therapy last week! 

Wednesday, September 16, 2015


We've been on this journey now for over 4 years. So you'd think that we are pretty used to dealing with the daily life that is ours. And for the most part, we are. However, today I experienced something that I haven't for a while. 

Usually, I am amazed at my ability to speak of our lives and all we go through with a stoicism of sorts. I can explain how we have to deal with our daughter's mortality with a straight face, and wonder if people think I'm weird for not bursting into tears. I guess it's just something we are used to at this point. 

But every so often it sneaks up on me. Today, it was in talking to my daughter's teacher. I felt the tears start to form and my throat got a lump. Where did that come from? 

It reminds me that even though this is "every day" common for us at this point, it's still hard and a struggle to have to reiterate yet again the seriousness of her condition to someone new and what that means for her and the family. 

So, that is my confession for today. 

Wednesday, August 26, 2015

We are home!

Sorry for the blurry pics, but just wanted to update that we came home from the hospital yesterday late afternoon! She had been having a fairly good day, so they gave us the option to leave, knowing that we'd still have our work cut out for us at home. Because we missed our family, and aren't afraid of hard work, we of course said yes. Unfortunately, later that evening she had a really hard time for a while that left us second-guessing that decision. But after some more breathing treatments, we got her relatively stable, and she stabilized even more after falling asleep.

So far today we have been continuing with aggressive breathing treatments, antibiotics here at home, and she's been on her bipap most of the day to help give her breathing support. We appreciate all the prayers, calls, and texts. We couldn't walk this journey without your love and support, and without the grace of our Heavenly Father sustaining us!

Monday, August 24, 2015

August is NOT Awesome

So, August just seems to be a crummy month for our girl.  One year ago at this very same time of the month, we were in the ER with Waverly with pnemonia. (We were able to avoid a hospital stay that time.) Two years ago she was also in the hospital, a very sick girl. Three years ago we were dealing with ear infections. After battling a UTI for two weeks (due to the wrong treatment the first go-round), she woke up on Friday morning struggling to breathe and very junky. So, after a visit to the ER Friday afternoon, she was admitted to the PICU for pneumonia. She's had a fever, low sats, trouble breathing, and not tolerating her food. In Waverly fashion, she's making some improvements, with some setbacks along the way. She seems to be doing a little better today, tolerating a few hours on her nasal cannula with 3 liters of oxygen, but needing her bipap most of the time so she's not working so hard to breathe. We just started her feeds back today, at a very slow rate, and are working on weaning her off the bipap use to being on her cannula more. Please pray for her, that she would continue to improve, and that she'd be able to come back home soon!