Why Do I Care About Hair?

We shaved Libby’s hair today. It was time. The four or five strands of hair I was attempting to style into a presentable “hairdo” resembled the infamous comb-over. She also had a “dust ruffle” of sorts at the nape of her neck. The hair down there never fell out, but everything above it did. It was bad. It had to go.

 It was not as hard as I thought it would be. I didn’t even cry. It probably helped that Libby liked getting her hair shaved. When the razor would stop she would beg for more. 

 I’ve contemplated why this hair loss bothers me so much. There are many reasons, actually. And I know most people would feel the same way. They’ve told me so. It’s not most people’s idea of fun. Shaving your baby’s hair off. But I’ve had time to come to grips with some of the reasons I didn’t want her to lose her hair. I think many of the reasons are justified. And I feel better about a lot of them. And I’m sure I’ll continue to be sad about some of them. But there is one still gnawing at me. One I’m continuing to grapple with. It’s the fact that I tend to worry about what other people think.  I’m worried about what people will think when they see Libby. When they see our family. I don’t know what I would want them to think, exactly. But I know I don’t want people to feel sorry for her. I don’t want people to pity us. I want for them to treat us, and treat Libby, like they would anyone else. And obviously, I want them to adore her. Like we do. 

 God did some real work in me when Libby was born. I’m talking about helping me redefine some core beliefs. Most of which, I had let this backwards world define for me. I had some serious misconceptions. Specifically, about what I thought it meant for me (and anyone, truthfully) to be a person who people value. To be a person who people esteem.  Maybe even a person who people love. And as much work as He’s done in me, the pull of this world is strong. God is not through crushing this idol of mine-this tendency towards the ideals of this world and the people in it. Nope. I know He’ll be working on this one for the rest of my life.

I suspect I’ll still feel a twinge of annoyance when we get a funny look when we’re out.  And I’ll try to remember God is revealing what is real. That He values me. That He values Libby. That He loves us more than we can fathom. He’ll continue to chip away at my need for approval from others. He’ll continue to chip away at my self. To hopefully, one day, reveal more of Himself. The only beauty any of us really has.

Business As Usual

I cannot believe it’s almost September.  The girls are growing up. Way too fast. Libby is up to her typical two-year-old antics and Annie is already seven months old.  Things are good. It feels like we’ve turned a corner. I know, believe me, I hesitate to even say it. But it feels that way. We’re out of the newborn phase, we’re out of the hospital, and things have normalized. Somewhat.

True, it’s a rare day I’m able to get Libby into her orthotics, her hearing aids in her ears, do the therapy we’re supposed to do, and get her teeth brushed. There’s actually never a day all of those things happen. Never. But we get the basics done. We get diapers changed, we get fed, and we usually manage to get dressed. And that’s enough for us, right now.

I’m almost starting to impress myself with my ability to get out with the girls all by myself. The three of us, with our awesome (and enormous) double stroller, are out and about a lot these days. Yes, the nurse at the doctor’s office had to completely take over the job of steering our stroller and Libby the other day.  Annie was about to lose it, and I was trying to steer while holding her. I think he got nervous when I rammed the front corner of the stroller into the doorframe as we were trying to get back to the exam room. I do this a lot, this ramming of the stroller, but I’ve ensured Libby’s little feet don’t stick out that far, yet. I don’t think I could break a foot or ankle. But he seemed concerned. I was happy to let him steer. 

 Annie can sit up, now. This is thrilling for Libby because she is finally able to play with her little sister. And I use the term “play” very loosely, as this mostly entails Libby taking everything that Annie is playing with away from her. And then handing it back to her at my command. Libby snatches her toy, Annie shrieks, I tell Libby to give it back, she gives it back (and by this I mean she shoves it, way too hard, back in Annie’s face), Annie shrieks again, sometimes falls over, and then shrieks some more. And the cycle repeats.  They do seem to love each other, though. They love singing together. They love dancing together. They love taking their bath together. They love to laugh at each other. It’s pretty great.

Libby did not have any treatment this week. This is a count recovery week. Hopefully, we will move into our next phase of treatment on Thursday.  In the meantime, it’s business as usual around here. Praise God!

Happy Weekend! 

Eucharisteo

If you think of this world as a place intended simply for our happiness, you find it quite intolerable: think of it as a place of training and correction and it’s not so bad.

CS Lewis

In the book I’m currently reading, One Thousand Gifts, Ann Voskamp writes beautifully about living a full life. The life God intends for us to live. A life that is full of joy. Joy even when things don’t go as planned. Even with cancer. Even with something worse. The way to this full life, she writes, is through eucharisteo-or, thanksgiving. She goes on to write about her personal experience practicing this kind of gratitude in her life. And, yes, it does take practice. I could go on, but I’m certain I will only taint her eloquent words. They are moving and powerful. 

This has been a recurring theme in my life. This notion of thanking God for all He blesses us with. The gifts He gives us. Not just for the things we’ve asked for, or we want. All things.  It’s biblical, of course. But it’s something that, as of late, I’ve been especially confronted with. It’s not a coincidence. I’m learning, albeit rather slowly. He’s helping me. Ann Voskamp has been the first to inspire me to truly put my own thanksgiving into practice. She’s right. It feels good. It slows the crazy life down. It inspires joy and living in the moment. Here’s a peek at some of my list from today: 

-Fran, for gifting me this amazing book

-The opportunity to leave work for a year and stay home with my girls

-My husband

-Sweet, creamy coffee

-The smile on Annie’s face when I wake her up

-Karen H. and the way she loves and cares for our girls

-Pink sky in the morning

-Riding in the car with Libby and watching her smile and dance to the music

-Music

-Libby attempting to talk- even though she tells us all done anytime we have her do the slightest thing she doesn’t want to do

-The ease of these once daunting clinic appointments

-Good blood counts

-Amazing nurses and doctors

-Libby starting to feed herself with a spoon

-Libby scooping up food with her spoon, splattering it on her cheek (not in her mouth) and saying “Mmmmm”

-Naps

- My nephew’s birthday this weekend

-My niece

-Sisters

-Gorgeous, cooler weather

-Weekends

I have learned how to be content with whatever I have. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little.

Philippians 4:11-12

Have a wonderful weekend! 

ER

So this is the problem with writing a blog. It has plenty of opportunity to make a fool out of you. You write these words. You put them out there. And you can’t really take them back. A day after bragging about how well things were going, Libby headed to the ER this afternoon with a fever. Such is life. 

No, I did not let her eat off the floor at the mall. But we did go to a fun music class with her boyfriend, Ben, today. I noticed she wasn’t quite herself.  We opted out of lunch with our friends. When we got home, she had a low-grade fever. After nap, she woke up with an even higher temp. I called the doctor and she said to go to the ER. They did some lab work and gave her a dose of heavy duty antibiotics. 

And guess what?! Before I could even get this info out to you, they were sending us home! We couldn't believe it. We have never been to the ER without subsequently being admitted to the hospital. Hib had a bag packed. We were ready to stay. But we are home, y'all! Actually, the ER doctor said she had NEVER seen a child with ALL come in with a fever and go home. But Libby's numbers were off the charts. (Most definitely due to the IVIG treatment she had on Thursday). With numbers like these, they feel confident she will be able to fight off whatever this is. Obviously, we'll be watching even more closely. And please keep those prayers coming! We are so thankful our family of four is intact. Thank you, God!

 Crawling into bed-way past bedtime!

Treatment Update

 

Hey everyone! It's day 9 of the "consolidation phase". Libby is doing very well. I'm telling you, if it weren't for the extra appointments, the medication, and her thinning hair, you wouldn't even know she has leukemia!

We had her treatment Thursday, and it was quick and easy. Like always. The hospital, doctors and nurses continue to amaze us. We love them. And we're so thankful for them. Libby also had an IVIG treatment. The doctor wanted to boost her little body with antibodies. So our day was a bit longer. But thanks to Yo Gabba Gabba, we were just fine.

At the end of the day, our doctor told me that Libby can go to the mall and eat off the floor. I adore him. It was just what I needed to hear. He knows how to put a girl's mind at ease.

Thank you for your continuous prayers! And have a fabulous weekend!

Soaking Up Summer

  

The Best Laid Plans

 

Last night, I decided to come up with a plan. A schedule, so to speak, for our crazy days. I swear to you, I knew when I was coming up with it that God was laughing at me. But I did it anyway. I had good intentions. More focused play with Libby. Incorporating more of her therapy. More focused play with Annie. Less TV. Eating together. You get the idea.

The day started out innocently enough. We pretty much ate breakfast together until Annie started fussing and I had to stick her in her little jumper only a few feet away from the table. Once Annie was out of her seat, Libby insisted on being out of hers by defiantly throwing pieces of food off her tray while looking me dead in the eyes. When I removed the remaining pieces of food left on her tray so she couldn’t continue to do this; she pulled a remnant of something out of her mouth and threw that. We proceeded to floor play a little more quickly than I had anticipated, but that was fine.

We got Annie down for her nap and Libby watched one (okay, two- but they’re short) Yo Gabba Gabba episodes while I showered. We had some good one-on-one time. She quickly said all done to most of the activities I was excited about, but that was fine. We got Annie back up. Fed her and had lunch.  It also took less time than anticipated, but I could adjust our schedule.

We went on a walk. The girls were fine, but I was nearly dying in the heat. So that got cut short, too. Our next “intentional playtime” turned into “play whatever the heck you want”. And I tried to cool off for a few minutes.

After naps, things really started to go downhill. Quickly. Annie was fussy during her bottle. Next on our schedule-a quick venture to Target. Annie was fussy in the car. Libby didn’t want her snack. Whatever. We made it to Target. It was so hot. I always park next to the shopping carts in parking lots because I have two little ones I have to maneuver into the cart without illegally leaving one in the car unsupervised. It is quite an ordeal in and of itself. I put the cover thing over the cart because I’ve been a little overly cautious with Libby, you know, with germs and all. I reached in to get Libby and I got a huge grin from Annie. Okay, good. She’s feeling better, I guess. I put Libby in the cart. The cover thingy kept popping off. It didn't fit the cart. The back kept popping over both her shoulders and covering her like a weird little cape. We strolled over to Annie’s side. When I opened the door, I was greeted with another huge grin. Awwww.

And then I saw it. The green watery mess that was oozing out of her diaper and all around her right thigh. It was everywhere. Somehow it was on an umbrella in my car. I don’t even want to know how it got there. All I could think was Abort Plan, Abort Plan. That, and a few select curse words. I put Libby back in the car. Prayed that Annie didn’t get this mess all over her hands and those same hands into her mouth. The whole way home she just kicked that foot around in her own poop. And I prayed. And I cursed. 

It’s hard to even remember what happened next. All I really remember is sweating profusely while trying to get Annie into the tub without spreading her poop to more places than it already was.  Trying to get the enormous mess into the wash, and sanitizing everything in my path since I have a little one more prone to infection. Yes, me, the one with poop strewn all over her car and her house.

I tried to find something to keep Libby occupied. Anything. Forget “intentional play”. I think she busied herself by taking lots of her bath toys to different areas of the house, and chased the cat under a bed. I really don’t know. I relinquished our evening playtime to, yep, TV time. Annie fussed some more. I threw together an incredibly unhealthy meal. Turned on the sink disposal with a spoon in it. This did trigger a smile from Annie. Fed Libby. Consoled Annie while she fussed some more. Fed Annie. Then, put them to bed. 

May I remind you I had a hand written plan for this day. I spent time writing it out. I kid you not. God, I get it. Please help me to learn more quickly.

*Libby’s numbers are good! We go in for her first treatment of the "consolidation phase" tomorrow (Thursday) morning. Please pray everything goes smoothly.

What God Does

One of the first things I thought about when Libby was diagnosed with Leukemia was the fact that we wouldn’t be able to travel. We love to travel.  I couldn’t get it out of my head. We wouldn’t be able to go on any family trips. Hib and I certainly wouldn’t be able to get away just the two of us. And I know our traveling is very much a luxury. But we love it.  And I thought perhaps God was trying to teach me something. Travel just wasn’t going to happen. Not for now. And I needed to be okay with that. There are more important things. 

Last week, Libby’s numbers weren’t high enough for her to have her treatment. She has been doing extremely well. My sister and fam were heading to North Carolina to see my parents. I asked Hib if we should dare to go. He was up for it. We packed our stuff and we headed to the mountains. We arrived on Friday night. Just in time to see the sunset off the back porch.

We took Libby to the Georgia Mountain Fair on Saturday. 

And spent two gorgeous days on the lake. 

Hib mentioned, as we headed home, what a good time he had. He said he really hadn’t thought we would be able to get away for quite some time. But we did. And I think THAT is what God was trying to teach me. He doesn't promise a life of ease. But He loves us. And He constantly wants to bless us. He does.