No Chemo For Christmas

 

And the angel said to them, “Fear not, for behold, I bring you good news of great joy that will be for all the people." Luke 2:10

We ended up in the hospital last week. Libby had croup. She was turning a corner, visibly feeling a lot better, and then she woke up Monday night. Upset. Her little chest heaving as she tried to breathe. So off we went. The doctors fixed her right up, we spent a couple nights, and were home by Wednesday. And because of this, they delayed her next dose of chemo. So we’re not going to have chemo for Christmas this year. Well, that’s if you don’t count the steroids they put her back on for a few of days. The steroids that help with the croup, but make her feel like crap. So, we’re making it to our Christmas festivities, but we’re not 100%.

And we will be getting chemo on New Year’s Eve. Literally, we will kick off the New Year with a blast. Of Chemo. Yes, this Christmas has definitely been different than ones past. But in a way, it’s been one of my favorites. This realization there really is joy, no matter what your circumstances. This Christmas, God is revealing that true joy doesn’t come from the holidays, or family gatherings, or gifts. It doesn’t even come from your happy and healthy kids. Even though I enjoy all those things, and they certainly make me happy. This true joy, the kind that never wavers, comes from Him. Beholding Him. It’s something I guess I’ve known on an intellectual level for some time now. But this year He’s revealing it to me. It’s different. I’m experiencing it. It’s indescribable. I love that He’s doing this right now. Christmastime. It’s just so appropriate. He is a Father who loves to give us everything we need. His Son. His Love. His Peace. His Joy.

Thank you so much for your continued prayers. New Year’s Eve is our next big day. I cannot say it enough. We love you so much.  We hope everyone has a blessed Christmas, filled with much love, peace and JOY!!!

Some Recent Highlights

  

There are a lot of days I feel like I’m counting down the minutes until nap time, and then until Hib gets home. Okay, that’s most days. But not a day goes by I don’t thank God for the incredible blessing of being home with my girls. As crazy as our days tend to be, I’m trying to soak in every minute. I know how fast they go. Annie is almost a year old, and Libby is two and a half. And I’m asked almost everyday if they’re twins-and some days it feels like they’re twins.  They are certainly two peas in a pod. Libby does a pretty good job of asserting herself as the big sister (you know, by pulling Annie’s hair or biting her), but Annie is desperately trying to catch up. Some recent highlights…

The girls have their own secret language. They babble back and forth all day long. Looking at each other dead in the eyes while they chat. I’m convinced they're having real conversations. Libby is really working with Annie. Even at just two years old, she’s qualified because she’s had a lot of speech therapy. We’re constantly having her imitate our words and sounds. So you can just imagine Libby's delight when Annie imitates one of her words or sounds.  She looks at me with wide excited eyes, her mouth opens as if she’s in shock, and she breaks into a beam of satisfaction. She’s so proud of this baby sister of hers who’s picking up on things so quickly.

 

They always want to be with each other. This is how most of our mornings go. Annie finishes her breakfast, and I take her out of her highchair so she can go play. Libby is still eating. Libby watches Annie start to crawl away. Libby looks at me and says, aaaaaall done (she likes to drag out the all). I ask her if she’s sure (knowing she’s not finished, but she wants to go play with Annie) and she assures me she is. I start to take her tray away, she frantically picks up a piece of bacon in one hand, and a handful of cheerios in the other. I look at her without even asking the question, and she says to me again, aaaaaaall done. And off she goes to chase Annie, still hungry, but with enough of her breakfast in hands.

They are very empathetic. If one laughs the other one laughs. If one screams the other one screams. If one cries the other one cries. Libby loves Santa Claus. Always has. We went to see him again this year. She was so excited. This was Annie’s first encounter with Santa and, true to form, she wanted nothing to do with him. She started crying as soon as we put her in his lap. She wouldn’t even look at him. And Libby could totally understand. When Santa asked her what she wanted for Christmas she stuck out her bottom lip, too. Although, she did blow him a quick little kiss to say goodbye.

They are learning, not very well, how to share. Libby is happy to give a toy to Annie, and very quick to take it right back. Annie follows her lead. Libby, despite being on steroids, is very generous with her food. If Annie is out of cheerios, Libby is happy to add some of her own to Annie’s tray. In fact, if she’s eating, she is always willing to offer Annie a bite. Annie, on the other hand, is more of a taker when it comes to food. Whatever I give Libby is in Annie’s hands in a matter of seconds. I’m not sure if she’s supposed to eat Pringles. But she does. And she loves them. I’m pretty sure she’s not supposed to have cow’s milk until she’s one year old, but Libby has introduced her to that, too. 

                                                         (Not her cup)

Yes, Libby continues to teach her little sister everything she knows. She’s teaching her how to wave hi and bye, and clap, and give kisses. Annie has really taken to the kisses. Libby’s once one-sided kisses are now requited. And I’m telling you, there is nothing better than seeing these two lean into each other for a big smooch.

Tis The Season For Miracles

I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name. Isaiah 45:3

This month has been tough. We knew it would be. Libby is in the midst of a miserable phase of treatment. She doesn’t feel well. We’re exhausted in every way most days. And it’s Christmas.  Cue the miracle…

Remarkably, I’m finding myself more readily shifting my focus to Him. He has not always been default. I tend towards control. I like to fixate on an issue, complain about it, worry about it, and pretend I can come up with a way to solve it. That’s what I do. But He’s giving me this gift. And let’s be clear, sometimes I still resist taking it. But He’s whispering to me to lean in. He’s giving me His eyes. And even if it’s for just a moment here and there, it’s awesome. In the middle of complete chaos, I’m able to step back. And He’s showing me there is treasure even here.

This is a season of our lives that, to many, may look dark.  Surprisingly, I’m finding it’s a season marked with much beauty. Although, the day to day ain’t always pretty. It’s a season that has my little ones demanding much of my time, but gives me priceless time to be with them, and delight in them.   Could He be molding me into a more loving and patient mom? A season that has been challenging for our marriage, but nevertheless we’re growing. Could He be refining our marriage? A season that has been littered with discomfort and disarray, but still filled with so much joy. Could He be changing me?  I’ve prayed for all of these things. Specifically. His work is unmistakable. This is a season He is revealing more and more of Himself to me. And I can’t get enough. It’s the absolute best gift. Father, I want to know you more.

Treatment Update

 

We’re two weeks in. Libby’s second treatment was Tuesday, and it was coupled with another IVIG treatment. This was a long treatment day. And I could tell she felt like crap. During the last couple of hours she didn’t want to watch her DVD, she didn’t want to eat, she didn’t want to sing, she just wanted to go home. And it was heartbreaking.

She definitely seems to be in more pain this go-round. She’s more nauseous, And she’s very tired. All of this is to be expected. The doctor told me these drugs are the nastiest ones they’ve got, but they get the job done. So we’re hanging in there. Our next treatment is Wednesday. It will be shorter-praise the Lord. And actually, after Wednesday, we have a little break as we wait for her counts to recover. Then, we’ll start round two. I will say this, it’s going quickly (a perk of doing this phase during the holidays?), and Libby is doing much better than expected. Or maybe, we knew she would do this well. It is Libby. Despite it all, most days she’s as happy as she ever is. It’s pretty humbling.

We’re continuing to pray for God to let this phase of treatment be as easy as it can be for Libby. As pain free as it can be. We’re praying she can verbalize what’s bothering her so we can address her needs, if at all possible. We’re praying to keep reactions to IVIG at bay. We’re praying to keep infections at bay as her counts begin to plummet. And we’re praying this precious little girl gets to enjoy some of this Christmas season! We have a feeling she will.  

Thanksgiving and Mood Swings

 

So… I cried most of the day Thanksgiving Day. By Saturday night I found myself dancing (yes, dancing) and laughing harder than I’ve laughed in a long time. And I get the feeling this is how it’s going to be for the next couple of months. One of the side effects of Libby’s steroids is “mood swings”. She’s got an excuse. I don’t.

You may, or may not, know that I wrote a while back about thanksgiving. About giving thanks in all things. About how I wanted to practice doing this.  About how I have been practicing doing this. Sometimes. Let’s take Thanksgiving Day. Yes, the one day of the year that literally has the word thanksgiving in it. Yeah, that’s ironically the day I failed most miserably at being thankful. Embarrassing, right? Libby was sick. Really sick. She couldn’t keep anything down, she didn’t want to eat or drink anything, and I was a nervous wreck because I had all this medicine I desperately needed to get in her. I had to call the doctor. Hib and I weren’t being exactly kind to each other. We missed Thanksgiving dinner with his family. Which was a major bummer because we missed seeing some beloved family we don’t get to see that often. And this was Annie’s first Thanksgiving. I tried hard all day to be thankful. But my thankfulness felt sarcastic, probably because it was. And so I resorted to complaining. And crying. Ah, “mood swings”.

Of course, looking back there were plenty of things to be thankful for. PLENTY of things. Like the cozy home we’re blessed with. And doctors who work on Thanksgiving Day. And zofran. Like my sister and her family coming over so we could spend time with family, after all. Like Libby’s cousins who comforted her with her favorite books and songs.  Like the amazing friends and family who checked in on us all day long. And who pray for us. I AM so thankful. I was so thankful, but I couldn’t see it for the mess that is myself. Hey, I’m a work in progress.

By Friday, Libby was feeling much better and we were able to make it to celebrate Thanksgiving with my family. This side of our family is huge. And I found myself basking in the love and laughter we were surrounded with for the weekend. And by late Saturday night we had a full-blown dance party raging in the kitchen because, well, that’s what we do. And I am so thankful.

Delayed Intensification

 

Libby starts her next phase of treatment, Delayed Intensification, on Monday. You can tell by its name, it’s not one of the better phases. It looks similar to the induction phase (the one where they kept us in the hospital for a month), but even more drugs are introduced in this phase. The steroids are back. Not really looking forward to that. She’s got two clinic days this week, Monday and Wednesday, with Thanksgiving on Thursday. We had kind of hoped she wouldn’t have to start until after the holiday, but her counts are good, so here we go.

We knew this phase would fall somewhere during the holidays, but I have to laugh a little that it’s literally starting the week of. I know it’s not a coincidence. God continues to show me, over and over, that His timing is perfect. Initially, I was a little bummed about the timing, but as the holidays creep closer I feel better. And I think I get it. I love the holidays. We’re blessed to have a large, and awesome family. And this is the time when we all get to spend lots of time together. Everyone, including Hib, has some time of work. Family and friends are already asking to come visit and help out however they can. I can’t think of anything better to temper sickness and clinic visits than lots of time with the ones we love. I pray we get to do all the fun things we usually get to do over the holidays. And if we don’t, it’s okay, because I know we’ll have lots of company ready to spend time with us wherever we are-even if it’s in the hospital. I am so thankful, SO THANKFUL, for all of you.

Please pray for us, especially Libby, as she starts this treatment. I’m hoping to give you lots of updates, despite the craziness of the holidays. Wishing everyone a wonderful start to the season! Happy, Happy, Happy Thanksgiving!

Why Vacations Are Better Now

 

Thank you so much for all of your sweet wishes for our trip. It. Was. Fabulous! Perfect, really. We had perfect travel days, perfect weather, perfect delicious food, and perfect relaxing days with no agenda. And it was the perfect amount of time away.

For most of my life I’ve vacationed in the summer. And, being a teacher, I’ve always had my summers off. So vacations, for me, were just vacations from my vacation, so to speak.  And don’t get me wrong. I cherished every single one of them. But I don’t think I could’ve possibly known how much I would eventually value vacations.

The reason being that vacations are such a stark contrast to life with babies.  I didn’t change a diaper, wipe a nose, wipe away tears, feed somebody, bathe somebody, console somebody, clean up a mess, fold laundry, sing a silly song, or listen to Elmo. Not once, for nearly five days. Instead I found myself lying by the pool, reading magazines, having food and drinks brought to me. Somebody made my bed and cleaned my bathroom. And they left chocolates on my pillow. Everyday. I slept until I felt like getting up. And I found myself asking, This is my life? Funny thing is, it’s the very same question I ask myself a lot of the time, here, at home. I asked it today when Libby pooped four times, Annie pooped twice (in the car, the only place she ever poops), Libby decided to do the opposite of nearly everything I asked (including putting her shoes in the toilet, not on her feet), and Annie continuously had a mystery morsel of food in her mouth (none of which I had given her, but she had picked up from who knows where). This is my life? 

 Yeah, vacations are way better now. They’re infinitely more luxurious. And the best part is, as much as I enjoyed myself on vacation, I couldn’t wait to get home. I would never have imagined being so excited to leave behind the five days I just experienced. (Although, I have reminisced about them often!) But I was psyched. I couldn’t wait to get home to Annie scurrying, as fast as her little chunky thighs will take her, to get to me. I couldn’t wait for Libby’s constant requests for hugs all day long (especially when she knows she’s in trouble). I couldn’t wait to get home to my precious babies. With their poops and all.   

What God Does

I’ve been a little down the past few weeks. Not all the time. But there is this sadness that seems to creep in, unexpectedly, and gnaw at me. I can’t pinpoint it to one thing, exactly.  I wrote a couple of days ago about my heart aching for Libby. I think that’s part of it.  I’ve had some loved ones dealing with some suffering in their lives and I hurt for them. I’ve also been feeling overwhelmed. I feel guilty. Like I’m not doing enough as a mom, as a wife, as anything. I feel helpless. Most of my days feel unproductive. I’m not a person who tends to wallow in self-pity. But I’ve been wallowing a bit. I know God doesn’t see things the way I do. I know He doesn’t see me the way I see myself. And I’ve prayed for God to help me. Not for Him to change my situation or my circumstances. But to help me with my attitude, my outlook, whatever you want to call it. And He did. 

First, I had the most vivid dream of Libby walking. It was crazy. I know not all dreams have literal interpretations. But I’m choosing to believe this one was from Him. Whispering to me that Libby will walk. He will help me as I work with her, He will guide me with what I need to do. And in His perfect time, she will walk.

Next, I received two incredibly kind and encouraging emails. Now mind you, I am beyond blessed to have the family and friends that I do. I am humbled by the way I’ve been inundated with loving and inspiring blog comments, notes, emails, and phone calls over the past several months. I am forever thankful for every single one of them. You all need to know God speaks to me through each and every one of you. These emails came at just the right time. These dear friends could never have known how I needed to hear their perfect words. But He knew.

Then, my sister and brother-in-law called from their vacation in Mexico. It’s a trip the four of us have taken together for the past three years, and we treasure it. This year Hib and I would have to miss it, obviously.  There would be no way we could have ever planned it with Libby’s treatments.

Interestingly enough, we could have never known, this would have been a perfect time to take a trip since Libby is well and in between treatment phases. The phone call. Are you ready for this?  My sister and brother-in-law were gifted a free room when they arrived at their resort. A free room, I tell you, no kidding. Long story kinda short, thanks to the four most amazing grandparents in the world, fabulous surrogate Grandparents Becky and Randy, our precious invaluable friends Karen and Tara (does it take a village, or what?), and most importantly the fact that Libby is so well and in a holding pattern until we begin “delayed intensification” in a couple of weeks, we are on our way to Mexico!!  Friends, this should not be happening. This is a gift. One I am so thankful for. One I would have never even dreamed for myself. But this is what He does. He dreams much bigger for me than I do for myself. 

There’s more. How He proved this week He is also providing for us in other ways. Glaring proof. We’ve had beloved family members give to us in ways I can’t begin to describe. Tears stream down my face as I type. They give the way I want to give. They give the way He gives. Generously. When I don’t deserve it. They give. They give because they love.

And so we ask for your prayers. I don’t know if it’s become clear, yet, but I’m a planner. This jetting off to Mexico at two days notice is not exactly my style. We’re scrambling to pull the logistics of childcare together, gather everything we’ll all need, and pack. We don’t even have sunscreen.  I’ll be sporting my old stretched out maternity swimsuit (Yes, unfortunately it probably fits just fine. And yes, I’ll be drinking a margarita in it this go-round.) I feel a little uneasy, a little disorganized, and a little scared. But I also feel giddy. Like a child who just received a gift from her Father.  A gift she didn’t deserve. But a gift He wanted to give, because He loves her so much.

Praying For Who Our Daughters Will Be

 

Lately, I have been praying, more than usual, that Libby would start walking. And, while I’m at it, I’m praying for her to start talking more, too. These have always been prayers of mine, but recently I’ve been praying extra hard.  I’ve recruited others to pray with me. Because truthfully, lately, my heart has been aching for Libby. I think it has to do with watching her little sister, Annie, and knowing that she will, most likely, walk soon. And maybe even talk soon. I want so badly for Libby to be able to do these things. And I know Libby wants these things for herself even more than I want them for her. And it’s not easy for her. She’s got a lot going on. 

 When Libby was born, we were flooded with calls and emails from family and friends who knew couples, like us, who had a child with Down Syndrome. It was amazing. It was also overwhelming. I remember trying to figure out which couples we might actually try to meet and talk with. It’s a pretty incredible story, but I believe we were divinely led to one particular couple in the very early days with Libby. They were an awesome couple. They were our same age.  Their firstborn son had been born with Down Syndrome. I still remember almost everything we talked about the day we went to their home for breakfast more than two years ago. But one part of the conversation replays in my head a lot. This couple told us they refused to be overly concerned with their son meeting milestones. They would do anything for him and wanted everything for him, but were simply more concerned about his character. Their focus was not going to be on what their son would be able to do, but rather, who their son would be. 

And although it should have been obvious, it was exactly what we needed to hear.  During the first months of Libby’s life we were bombarded with doctors and therapists and all of these things we needed to do for our precious little girl. And to be honest, I still tend to get really bogged down. I’m so thankful God had someone actually say those words to me out loud. Words I’m convinced were from Him. I cling to those words. And the prayer that is always at the forefront of my prayers for both my girls is that they would love God, know that they are loved, and that they would be, in turn, loving. I pray they learn early that their identity rests in their knowing they are children of God. And these prayers help all my other prayers for them fall into place. But I sure still pray them.

Halloween

Treatment Update

 

We are wrapping up the interim maintenance phase. Libby had an intense day of treatment this past Monday. I hate that I didn’t have time to update the blog, but I know you’re keeping those prayers coming because we can feel them! Libby did awesome! She had intrathecal chemo, two IV chemo infusions, IVIG, and got her flu shot. It was a long and tiring day for her, but not a tear was shed. This little girl is something else.

 She seems to feel fantastic today, but we’re a little on edge because, as you know, she apparently has recurring reactions to these IVIG treatments she gets once a month. The day after treatment is usually an okay day, but it’s tomorrow and the next day that bring surprises. Typically, she starts to deteriorate late afternoon- she’ll run a fever, vomit, and is just really lethargic. The good news is that the doctor has given us a free pass. He told us we do not have to go to the ER if we think it’s simply another reaction. (we've been to the ER both times she’s had IVIG). He assures me there is nothing they can do in the ER, it’s just a matter of waiting it out. So, please pray we can skip the crazy reaction all together this time, or at least that the reaction is short lived, and that it’s clear to us we can handle it at home.

 Next Friday will be the last treatment of this phase! We will then have a couple of weeks off as we wait for Libby’s counts to recover so we can begin the dreaded delayed intensification phase.  It looks similar to the induction phase. The steroids are back. Libby’s immune system is super compromised as these heavy-duty drugs blast her one last time. Most likely, this phase is going to start right around Thanksgiving, and will last about two months. So definitely keep those prayers coming, we’ve got crazier than usual holidays ahead! And come spring we’re looking forward to returning to our new “normal”.

Hope you are all wonderful!! Thank you, and we love you!

Pile of Love

 

I’m excited about the months ahead. Truthfully, I’m always excited about this time of year. I love the holidays. And this year is the best one yet. Our girls are getting older, and they’re really fun. Their cousins are even older. And they’re entirely too much fun. And there’s nothing quite like the holidays with kiddos. The cooler weather.  Snuggly clothes. Halloween. Thanksgiving. Christmas. Spending time with loved ones. 

You can’t see Hadley, but she’s the foundation of this pile of love. Hadley and Walker always enjoy a good love tackle. And recently, Libby has really taken to it. In fact, she’s all about it. Annie is generally pulled in against her own will, but she doesn’t complain. Much. It’s actually pretty awesome to see how much this foursome loves each other. 

It’s been a consistent prayer of mine (since before they were born) that my girls would love each other, and that they would love their cousins. I pray not only that they love each other, but that they’re friends, and they treasure their relationships. Because these relationships are so special.  I know this first hand. I’m lucky enough to have a sister who is my best friend. And more than a handful of cousins I also count as my best friends. These relationships have been, hands down, among the very greatest gifts God has given me.

 

And so I pray this for my girls, and for my niece and nephew. I know it’s not always going to be easy. I know not all siblings are best friends. Not all cousins are close. I pray these four continue to love and cherish each other. I pray their little eyes always light up the way they do when they see each other. I pray they will support each other, and hold on to each other through thick and thin.

Learning to Crawl

He Reminds Me

  

Libby had treatment this past Monday. I asked her, as we were getting in the car, if she was ready to go see the doctor. She gave me a big smile and said yesssss. She greeted the receptionist at the clinic by blowing her a ridiculous number of kisses. Just like always. We sat down, she wrapped her arms around me in a tight embrace, patted my back, and began to laugh uncontrollably. And I began to laugh uncontrollably.  The waiting room was packed, and I could feel everyone looking at us. I almost whispered in her little ear we needed to be quiet, that people probably didn’t feel well, that we were being loud and disruptive. But I didn’t. Because when I pulled back from our cuddle and looked up, everyone in the room was smiling. And because I was reminded that this was not the picture I had in my mind when I was told my daughter had leukemia, and we would have weekly clinic trips to get chemo.  This was not what I had pictured at all. God reminded me that He is so very near.

I drove home from the hospital so thankful, and a little in awe.  Amazed by how easy this very difficult journey has been for us so far. We definitely have tough days. Libby was in the ER the weekend before. She was vomiting, and she had a fever, and off we went. But even in those moments, He reminds me. We pray, and you pray, and we trust. He brings her home. And in no time, she’s tackling her sister, dancing to the music in the car, laughing with her cousin. He reminds me. How much He loves us. How present He is.  How sufficient His grace truly is. 

I’m thankful for His reminders. He must know I need them. It’s easy to get bogged down on any given day with my own thoughts. Sometimes I give into my own thoughts-about the looming appointments, the IVIG she’ll get in another week or so (the one that sends us to the ER every time), the “delayed intensification” phase that we’ll begin at the very start of the holidays- and I’ll start to feel discouraged. That’s when Libby decides to put her spoon down at lunch, stretch out her arms in her highchair mid-meal, pull me in for a big squeeze, and laugh. He reminds me. He reminds me that these pictures in my mind are just my fabrications. He’s designed the masterpiece. And it’s magnificent.

Yay For Fall

Prayers and Grace

Libby is finally ready for her first treatment of the interim maintenance phase. Thursday is our day. She will also be getting another IVIG treatment. I’m thankful, and yet a little apprehensive about the impending treatments.  This is supposed to be an easier phase, but you always hear the other stories, too. And there’s nothing like a compromised immune system and the beginnings of flu season to boot! As always, we so appreciate your prayers!

We’re praying Libby keeps feeling as well as she has been, because she has made some awesome strides with her physical therapy lately. Today, she pulled herself up to a standing position! I know it doesn’t sound like much of a feat for a two-year-old. But for this munchkin, it’s been a long time coming. Physically, her little body is weak. She has to work extra hard. She tires quickly. And super mom that I am, I have really been pushing her. Pushing her to the point that she fell earlier this week and busted her lip. Oh yeah, she was crying, there was blood everywhere, the works. I felt like a monster. And I didn’t make her do another thing the entire day.

In our small group we’ve been studying a book about parenting. The most recent series at our church has been “Future Family”, and also touched on parenting. They’ve both been excellent. We’ve learned a lot. We’re thinking about a lot. We’re trying to implement a lot. We’re attempting to break Libby out of her little toddler microcosm and help her recognize that, as her parents, we call the shots. We’re attempting to have her do things, small things, for herself if she can. We’re disciplining. We’re teaching. It can be difficult. Rewarding. Frustrating. Hilarious. And it’s almost always humbling.

With all I’ve been learning, I’ve come to one resounding conclusion. I am immensely thankful for prayers and for grace. Because what I’m discovering is that even with our greatest efforts as parents, things can (and do) blow up in our face.  You know, like when you give your child a bloody lip. Grace. When a fun bath turns into a rescue mission as one sister tries to drown the other. Prayers. When you sit down with your daughters to feed them lunch, catch your back pocket on the back of the chair, rip a hole in the rear of your pants, and say s*** right to their sweet little faces. Grace. Hoping s*** isn’t one of the words either of them decides to start saying. Prayers.  Wrestling the spoon out of your daughter’s hand as she tries to eat (forget her independence) so you can feed her more quickly and just get out the door. Grace. Contemplating if she’s cutting a tooth, or if it’s just her general disposition. Prayers. And Grace.  I could go on.

Parenting brings me to my knees. And I’m thankful I can pray. And I’m so thankful for His amazing grace. Somehow, with prayers and grace, some of the pressure is off. Easier said than done.

Thank you, God!

Treatment Hiatus

 

I haven’t been updating you on Libby’s treatments. And that’s because there have been no treatments.  We are in a holding pattern. We are waiting for Libby’s blood counts to recover. Apparently, this is normal. The doctors want her numbers to be at a certain level before we begin the next round of treatment. They aren’t there. But they’re close. We should be good to go next week. 

Meanwhile, I’m so thankful for this little hiatus. During a typical week we have a myriad of appointments. And it gets to be a lot. This week we had our usual therapy appointments, our blood count appointment, an ophthalmologist appointment, a sleep study, and our first aquatic therapy appointment. Libby and I are somewhat equipped to handle this pace, but poor little Annie doesn’t quite have the stamina. She goes with us. And let me tell you.  It ain't always pretty. It’s kind of comical, actually (after the fact). We go to these appointments and Libby is the one who has to do the work in therapy, she’s the one who has to get her finger pricked for blood, get her eyes dilated, and sleep in some crazy contraption. But it’s my Annie who cries. And cries. And cries. I left the ophthalmologist yesterday and I don’t have a clue what he told me. I was trying to listen despite Annie’s screaming, but I could only pick up about every third or fourth word. I pray he didn’t have anything too important to say. And I pray the prescription he handed me will come with thorough instructions. 

(Libby's sleep study. Have you ever!?!?)

On Libby’s treatment days, we are blessed to be able to send Annie to our amazing friend, Karen. I know Annie prefers this. And, honestly, so do I.  She gets lots of love and attention. She gets to play. And nap. And I get to not lose my mind. And with this letup in treatment, Libby and I have even been able to steal a couple of days just the two of us. It’s been such a treat. This time together, one on one. We slow down. And we just enjoy each other. I cherish these days, because I know they're fostering our relationship. That’s how you nurture your relationships-with God, with your husband, your children, anyone. Spending time together. So I’m incredibly thankful for the moments and, better yet, the days we get to slow down. And just be together.  

Happy Weekend!

Sisters

Libby tired of this photo shoot rather quickly. She moved on to her favorite book,  Brown Bear, Brown Bear, What do you see? Annie kept posing for me. Mind you, she can't crawl, yet. Have a wonderful week!

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.