Better.

Wow.  In the last 36 hours I have had such a huge outpouring of support.  So many folks who I had no clue were still reading the blog, or who I have never heard from before have posted comments, emailed, or sent me Facebook messages.  I am truly grateful for each and every gesture of love and concern and especially for your continued prayers.  I really do feel amazingly blessed to be surrounded by so many people who will pray for my daily needs.  It’s one of the strange blessings and gifts that Clara has given me in all of this.  I’ve begged for prayers on her behalf, but it always feels strange to ask people to pray for yourself.  I’m so deeply thankful that you are willing to pray for me and my needs as readily as you have (and continue) to pray for Clara’s. 

I feel like a different person today.  Truly.  When Clara was in the hospital and she had some really really bad days, we would post for prayer requests and you would fervently pray and time and time again we saw those prayers answered in the affirmative.  It was the most humbling and empowering experience with prayer that we have ever had.  I felt like today was another one of those incredible moments.  I have physically felt the presence and powers of your prayers for me today and it has given me energy and peace and joy that I have not felt in quite some time.  I know that there are many more hard days ahead.  We’re still a long way from the end of this struggle.  But today was like an oasis in the desert; it was the break I have so been longing for.  So, thank you.  Your prayers and the grace of God have renewed my energy and given me hope again. 

Today, I was intentional about trying to focus a little on self-care.  Here are some things I did today, for me, that did a lot towards transforming my attitude:

I exercised.  For the first time in many many months. My friend Sarah bullied me into it (just for the mental health aspect).  She was right.  It was hard because I am horribly out of shape and carrying around far too many extra NICU pounds.  My legs felt like jello and I was way out of breath.  But it felt so good.  I cancelled my Y membership when I was pregnant and puking every hour and totally unable to exercise anymore.  I hadn’t worked out really hard in probably over a year.  Those endorphins are a powerful thing.  I need to try to find a way to make that fit into my life again.

I drank some coffee.  Why is coffee so good?  Oh, it is so good.

I ate lunch.  With my mom.  Both of those things are good for me.  Yesterday (and many days) I forgot to eat.  Low blood sugar doesn’t help anyone.  Food is as good for me as it is for Clara.

I straightened my house.  When my surroundings are messy, I feel messy.  And my house was a disaster from an unexpectedly crazy week before Thanksgiving and then being out of town.  Having things neater helps me face the things I don’t have control over….

I read emails and blog comments and other words of encouragement from so many people and felt encouraged and affirmed and comforted by all those who took the time to respond to me when they didn’t have to. 

watch out, Rufus!

SHE'S COMING AFTER YOU!!!

This baby is starting to crawl....

I snapped a few photos of my sweet baby girl in the first of many Christmas outfits for the next few weeks.  I love photography.  I’m only really kind of average at it, but I’m thankful for a hobby that I enjoy and a precious subject to photograph. 

We skipped solids.  I did focus on trying to have a really good day of good bottle feedings with Clara today, but I just took one day off from battling the solids.  Clara said she appreciated it.  So did I.   We’ll get back to it tomorrow and hopefully both feel a little more willing to tackle the task ahead of us. 

I listened to Christmas music.  I really love the Christmas season.  I always have.  It’s just magical.  I love both the religious and the secular aspects of it.  It’s such a wonderful time of year.  Last year I hardly remember the Christmas season.  We were still reeling from Clara’s diagnosis and I just barely went through the motions of it.  I’m really excited that it’s Christmas and I want to soak up the joy of this season.  My funk was kind of getting in the way of that, so I tried to remember how much I love Christmas today and enjoy all the fun and traditions that come with this time of year. 

I left the house for two hours.  The semester is almost over, but I did have class this afternoon.  We hadn’t met in ten days which meant I really hadn’t left Clara’s side in ten days.  It was good for me to get out of the house and have a small break from her.  And honestly, I think Clara appreciates a break from me, too.  Sometimes I think she gets really bored with me.

I made a big pot of delicious soup for dinner on a cold, rainy night.

I received beautiful flowers from my darling husband.

We enjoyed a fire in the fire place, drank hot chocolate and put up our Christmas tree. (thanks again, Robert.)

I prayed.  So, I was thinking yesterday about how we always say a blessing before a meal.  And when we’re all sitting around the table together, we do that with Clara, too.  And I usually say a prayer with Clara at bedtime, but never really thought of approaching each one of her bottle feedings as a meal that we needed to give thanks for.  When we ask a blessing before a meal we almost always thank God for the food itself.  But for Clara, it’s not just the food, but the ability to eat it.  So, before each of her feedings today, I stopped and said a blessing out loud.  I thanked God for the milk she was about to drink and the miracle that my body is still making it after all of this.  I thanked him for the powdered formula that we add to it for those extra calories.  And I thanked him for the fact that Clara does have the ability to eat orally.  And asked for calm and peace and patience during the feeding.  Her feedings weren’t perfect today, but overall, she did much better than she’s been doing the past few days.  And I did better, too.  Instead of getting in the middle of a disastrous battle of a feeding and crying out to God in desperation and frustration and anger, I tried to look at each and every feeding as an opportunity and a gift from Him.  And it helped my perspective. 

My biggest spiritual struggle has always been control.  I am such a control freak and I have such a difficult time handing things over to God.  When Clara was really really sick, it was easy to give it over to God because there wasn't anything I could do anyways.  The feeding issues are harder for me to hand over because I feel like I should DO something to fix them myself.  Get creative, try a different strategy, work harder.  So, today I tried to just give it over to God again and again and again.  It's a hard hard lesson for me. 

But, overall I’m a lot better today.  Of course, I’d love for you to continue to remember us in your prayers.   All those problems are still there and we still have obstacles to overcome.  I appreciate you allowing me to be honest and vulnerable and share with you both the joys of motherhood with this special child and the inevitable challenges.  I’m ready to face another day.

Honesty

I feel like it is important for me to paint an accurate picture of our lives and of who I am, where I am and what I’m feeling.  While we are richly blessed and I am deeply thankful for all the wonderful memories, special quality time together as a family, and the day-to-day with this precious baby that I typically post about, that is not the full picture. 

The past month or so I’ve been in quite a funk.  I thought perhaps it was the changing weather and a string of rainy days.  Then I said that maybe it was our “house arrest” as we protect Clara from the germs of cold and flu season.  Then I thought it was accumulated tired from a year and half of not sleeping.  But the weather is lovely, we’ve been to GA and back for Thanksgiving, and Clara is sleeping through the night.  So, those excuses don’t seem to be it.  I’m discouraged and I’m overwhelmed.  I remember when I was teaching we would get a few weeks away from a break or summer and just feel desperate for the end.  We would feel so burnt out and restless and know that both the kids and the teachers just needed some time away to renew and rest before plunging back in again.  That’s kind of how I feel right now, but there is no break.  Clara has to eat six times a day and I do five of those feedings.  There is no long weekend from this job.  And the pressure and responsibility is so much heavier than any I’ve felt before. 

Clara’s eating is still a daily struggle.  There are days (like this morning) when I spend 45 minutes trying to get her to eat and she only takes three ounces.  We fall short of the daily need of milk, just in terms of fluid for hydration purposes, often.  She is a very long way from figuring out how to spoon feed.  Eating is something that comes so easily and so naturally to most of us.  I’ve never appreciated the ability to eat.  But for Clara, it’s very difficult.  And it’s absolutely critical.  The tedium of trying to get those ounces in her six times a day is wearing.  

My feelings of being overwhelmed and discouraged are magnified by how isolated I feel.  I am so very tired of people telling me that Clara is the picture of health.  I’m frustrated with people telling me that I shouldn’t worry, or that she’ll get it when she’s ready, or that “this is being a parent”, or that “babies just spit up”, or that they understand.*  I should worry.  She really might not get it (enter: g-tube).  Parenting a child with health concerns is different.  When she throws up we’re losing precious calories and ounces of fluid that were incredibly difficult for me to get in her in the first place.  And most people simply don’t understand.  I’m tired of asking doctors and therapists questions and them not having any answers.  I’m tired of washing bottles.  I’m tired of pumping.  I’m tired of wiping down every surface with Clorox wipes and worrying about every exposure to germs that Clara has.  I’m tired of not being able to be normal.

Today we had an evaluation with a speech therapist for feeding therapy. Like so many appointments before, I had great hope that we might get answers and strategies and solutions.  Instead, I left feeling like I had gained nothing (Speaking of gaining, Clara has only gained an ounce and half in the last three weeks.  It’s not enough.)  And as I drove home, I just cried.   Here I am finally living the dream that I’ve had my whole life of being a mother, and I love every single minute of the ordinary, but I’m just so frustrated with the challenges that come with this particular child.  I know that every child has their struggles and challenges and that motherhood is not a picnic for anyone.  I don’t have unrealistic expectations.  I’m just saying that this gig I’ve got going on right now is extremely difficult.  I usually love challenges.  But right now I’m feeling a little worn down and there’s not yet a light at the end of the tunnel. 

I don’t write all of this to garner sympathy from you, my faithful readers, or to ask for advice or solutions.  I just wanted you to know that it’s not all pumpkin patches and apple orchards.  Clara is a beautiful miracle and I am thankful for her life every minute of every day.  But this life is hard.  It’s hard for her and it’s hard for me.  And the truth of the matter is, I am still struggling with this. 

So, I’m praying that the burden will get lighter.  I’m praying that she will have more and more good days where she eats enough and it doesn’t involve an epic battle and she doesn’t throw it up.  I’m praying that she learns how to spoon feed and drink from a cup because in four months that bottle needs to go.  I’m praying that she might decide that she can eat while she’s awake instead of me having to sneak in all her feedings while she’s sleeping.  I’m praying that she might start gaining weight again a little faster.  I’m praying that she stays healthy this winter because I cannot bear the thought of her facing respiratory illness.  I’m praying for grace for me and for Clara.  I’m praying that I will have a sense of calm and patience when it comes to feeding her instead of the far-too-frequent meltdowns and tantrums I’ve been having lately.  I’m thanking God for her strong will, even when it’s causing her to fight me, because I know that same strong will is why she is even alive today.  I’m thanking God for all the support I have and the resources that are at our disposal.  I’m thanking God for this opportunity to be a parent because it has always been the desire of my heart.  I’m thanking God for His infinite wisdom in giving me the child that is just right for me and giving Clara the mother that is just right for her.  I’m thanking God for the mothers of other CDH children He has put in my life because they do understand.   I’m thanking God for giving me the most patient and loving husband who puts up with my mood swings so graciously.  I’m thanking God for the promise of tomorrow, a fresh new start, and another day to work on serving Him, and meeting Clara’s needs.  Join me in prayer?

* If you are one of the many, many people who has said any of these things, or similar things, to me - please know that I am not angry at you.  I recognize that it is your way of saying that you care and that you do not intend them to be hurtful.  I don’t want for you to think you’ve offended or hurt me or feel like I have just singled any one of you out.  I hear these things from everyone, including my family.  I do appreciate everyone’s desire to problem solve and offer feedback and solutions…. I learned many months ago that people often say the wrong things and that it’s best to try to hear their intention instead of the words that may be hurtful.  I’m still working on that….

Eight Months (+ 2 Days) Old!

Clara, eight months old

Clara is eight months old!  Actually she turned eight months old on Wednesday, but the first part of this week was a little nuts for me and I didn’t get this post done.  So, here’s the update on Clara’s latest birthday, just a couple days late. 

At her last weight, Clara was 16 pounds 12.5 ounces.  She was close to 50^th percentile in weight, height and most notable weight for height (where she had been hovering closer to 10^th percentile).  Our hard work has paid off.  And boy is it hard work.  Clara definitely has some eating delays, but our latest appointment with Dr. C was both encouraging and affirming.   It was nice to hear a medical professional recognize that she really does still struggle to eat and that although her weight gain is fabulous, it has not been without incredible persistence, determination and patience on the part of those who feed her (which, let’s be honest – is mostly me.)  We will begin “feeding therapy” on Monday with either a speech or occupational therapist and I hope they’ll have some tips for helping her be more successful with solids.  We've already seen some really great progress in the past two weeks since we last saw Dr. C with the strategies she gave us.  She's eating a couple ounces a day of pureed "stuff" and is still gnawing on whole bananas and avocados, too.  Right now, the favorite food seems to be blueberry yogurt.  Her bottle feeding is still a great battle much of the time too, but since she’s supposed to be kicking the bottle habit in just another four months, we’re going to focus on helping her eat solids and drink from a cup instead of improving the bottle situation.  Hopefully if those can be a lot better by the time she turns a year we can give up the bottle and not worry about the fact that she requires a dark room, a rocking chair, a boppy, her mother, soothing music, a paci, sometimes a swaddle and more often than not being totally asleep first in order to drink her bottle.  I’ll be glad to have that chapter behind us!

But I’m not wishing away any time.  No siree.  The past eight months have gone too quickly.  This month especially, Clara seems to be acting more and more like a soon-to-be-toddler and less like a little baby.  She is getting strong.  She still loves standing on her feet and bouncing and loves pulling up on our hands or anything else she can grab to make herself vertical.  She willingly spends more time on her tummy now and is working so hard to crawl.  She will scoot a little bit forward, commando style.  I’m sure that by her nine month birthday I’ll be reporting that we’ve got a crawler.  She is busy busy busy, always moving and rolling and scooching and pulling.  Diaper changes are quite a challenge.  Her vocalizations have really changed this month.  She will screech and scream and is exploring the range of her voice, especially when she gets frustrated (like when she’s trying to crawl and can’t quite get it…). 

"I want that rattle!"

Reeeeeeeeach!

Puuuuuuuuuuulllllll!

A HA!

Whew.  It's mine!

Although it doesn’t seem possible, I think she just gets happier and happier.  Rarely do we hear her cry, unless she has fallen over and bonked her head.  She giggles the most for her daddy, but will flash that big gummy grin for friends and strangers alike.  She is so interested in her world and is constantly checking things out.  She’s gotten really good at getting around, even if she’s not yet officially crawling.  If she sees something she wants, she will maneuver her way to it.  Childproofing is not far off at all.  She loves to play pat-a-cake and hear “Five Little Monkeys” and other rhymes, but her favorite game right now is peek-a-boo.  She is constantly sticking her tongue out and has started shaking her head back and forth as if to say, “No no no no no!”  (Let’s hope she doesn’t actually mean that or else I’ve got a very defiant child!) She is far too busy to snuggle much when awake these days, so I find myself holding her extra long before each nap and soaking in her sleepy baby-ness before it all fades away completely.  She is mostly sleeping through the night now, with a few nights here and there that she still wakes a few extra times.  She goes to bed around 8PM, Robert gives her a bottle in her sleep at about 11PM and she sleeps until I nurse her in the early morning around 5-6AM before going back to sleep until about 7 or 7:30.

"Hmmm.... I see a blue ring."

"Can I reach it?!"

"Yes!! I got it!"

"Hey, what else is in this bag?!"

 

No teeth yet!  We’ve had moments when I was convinced a tooth was going to pop through any minute now.  She drools buckets and everything in sight goes straight to her mouth.  But no teeth yet. No hurry here.

Her personality has really started to show this month too.  It’s no surprise (she got a double dose of genes), but this girl is stubborn.  She has made it clear what she does (clapping and saying, “Yaaaaay Clara!!”) and does not (spoon-feeding) like. She’s fiercely independent too…. Most of the time she will not let us put a paci in her mouth for her, but if you hand it to her, she will willingly put it in her mouth herself.  I can see already how tedious the “Me do it” stage is going to be!  She works hard and is motivated.  I know that seems like a strange thing to say about an eight month old, but it seems very obvious to me how determined she is to figure new things out and her persistence in getting it is something I’m already very proud of.  Most of all, she’s incredibly happy, alert, and easy-going.  If it weren’t for her feeding issues, we’d really have about the easiest baby around.  I won’t complain.

 

Happy eight month birthday, Clara!  We love you and are so proud of the smart and strong little girl you are becoming (not to mention stinkin’ cute).  

Clara's First Turkey Day

Clara and I skipped out on the big family reunion today.  It was sad to not be among the people we love so dearly, but we are trying to be vigilant about protecting her from illness and since there are often upwards of a hundred Hardys at Thanksgiving, we couldn't justify the risk.  While we did miss being with everyone else, I got to soak up all day long with the one I am most thankful for.  It was wonderful.

I know you're tired of hearing this, but we've been working really hard on spoon feeding.  I thought it was appropriate that Clara get her first taste of Thanksgiving, too.  Thanks to fancy chef Tyler Florence and his organic baby food line, Sprout, Clara ate sweet potatoes, corn, turkey, pear and cranberries.

Of course, as always, I use the word "ate" loosely.  The corn was a bit gag-inducing... she's not quite ready for the stage three chunk.  We'll stick with stage 2 for a bit longer....

But she's happy.

And, there's always the traditional Thanksgiving banana, right?

And even a little baby is not exempt from the after-Thanksgiving meal yawns.

She was sporting a precious turkey hairbow today:

Along with this adorable turkey bib made by and sent to us from one of our favorite blog followers, Lindsay!

How could we not be overwhelmed with thankfulness?

We hope to be back at the big reunion next year, and we'll teach you all about Aunt Fran's creamed corn then, Clara.  But for now, I'm just so thankful to have spent the day reflecting on how thankful I am for Clara and how much she's taught me about thankfulness the past eight months.  Happy Turkey Day!

I Give Thanks

Every year on Thanksgiving we say, “I’m thankful for my health, my family, my friends.”  I say it every year, too.  But this year, I have a truer, deeper, richer sense of thankfulness for all of this.  

You think you’re thankful for your health, until you watch your newborn baby fight for her life with all her strength.  Watch her be poked with needles and have wires and tubes coming out of all her limbs.  Watch her swell up to twice her size and watch her undergo major surgery.  Watch her struggle as she learns to breathe, learns to eat, learns to live.  Watch her be brave.  It has made me appreciate my health, my family’s health and Clara’s health in a whole new way.  My eyes have been opened to just how much sickness there is in this world, how hard medical professionals work to make people better and how miraculous God’s healing is when nothing else is left.  This year, I give thanks for good health.

 

You think you’re thankful for your family all the time, but when they are the ones who drive you to the hospital after you’ve had a c-section, hold you while you cry in a hospital cafeteria after being told your baby will die, ensure that you have meals to eat when you don’t feel like eating, that your house stays clean, your gas tank full, your pumping pieces washed… your appreciation grows.  Nobody has lived this journey of the past year as closely as my family.  I’ve been changed.  They’ve been changed, too.  When you’ve been through heartwrenching crisis and they’re the ones walking beside you and seeing you at the most broken, and love you through it, you know what it means to be thankful for family.  I don’t know what I’d ever do without my parents, my in-laws, the rest of our extended family, and most of all my husband.  This Thanksgiving our family grew by one.  I give thanks for family.

 

You think you’re thankful for friends when they are the ones you talk to about your daily life, share a meal with, enjoy parties and games and travel together.  But when your friends bring you meals and drop them off magically on your back porch so you’ll have nourishment when and if you make it home from the hospital, your thankfulness soars.  When they offer prayers for your baby, but also for your own sense of peace and courage and stamina, you are humbled.  When they shower you in gifts that say, “You’re special to us,” it is touching.  When they listen, recognize that they cannot understand, but still love you through the dark valleys of life, there is deep gratefulness.  We would not have made it through the past year without you, our friends.  I’m thankful for old friends who know the story of my heart and also thankful for the new friends I’ve gotten to know because of this journey.  You are dear to me and can (and do!) love me in a way that nobody else can.  I’ve said it before and I’ll say it again.  Community is an amazing thing.  I give thanks for friends.   

Each year, when we drive down to Georgia for Thanksgiving, Robert and I take turns back and forth sharing, “I’m thankful for….”  This year we listed many of the usual suspects, but also in our lists were nurses and doctors and casseroles and baby ounces.  We have so much to be grateful for this year that we never imagined we’d be listing.  We’re thankful for Clara’s determination and her fight.  We’re thankful for resources like eating specialists and Playtex bottles and baby formula and physical therapists that have helped her thrive outside of Brenner Children’s Hospital.  We’re thankful to be on the other side.  We’re thankful for our changed perspectives.  We’re thankful for God’s grace.  We’re thankful for wine and beer and mac and cheese.  We’re thankful for the incredible support system that we are embedded in and that we do not take for granted.  In short, we’re truly overwhelmed with feelings of thankfulness for the life of our sweet miracle, Clara Mae.  So, on this day set apart for thankfulness and gratitude, we are praising God and giving Him glory for the works He has done.  Today, and every day: Thanks Be To God.