Our Little Village People

I can never get enough of preschool performers.
To get a little peek into how those little minds work!

Retreat

It's impossible not to smile when you wake up to this every morning...

This was the view from the bed where I slept this weekend.  We were at the beach for our annual women's retreat with church.  This is a sight that will always stop me in my tracks.  The power, peace, grandeur, beauty, strength, and vastness of God all rolled into one.  I have been anticipating this weekend for two years.  I had to drop out last year because we were in the midst of Julia's chemo and radiation treatments.  It's refreshment that I long for every year.

The time to worship, reflect, and praise.

Going deeper with women of all life stages in our small group.  Time to get real about our hearts instead of our roles and responsibilities in life.

Having a complete thought! Hearing God's nudgings in my heart and being able to really sit with my thoughts long enough to reflect.  Discovering we do have deep thoughts, but also that we have a lot of empty holes now, too (love you Lara!!).

Reconnecting with old friends and making new ones.  Having the time to share our hearts and our burdens with each other without a dozen "just a minutes" while we put out the daily fires of motherhood.

And time to just have fun enjoying... eating meals without getting up, going to the bathroom by myself, showering without an audience, napping on Saturday afternoon, carrying only one bag around, having breakfast made for us, staying up late giggling and playing games,

Most of all we remembered how to "be" instead of just always "doing".  When we step out of our life we can start to see some of the craziness and explore some of the cracks in ourselves we've been trying so hard to ignore. Time to really think about the posture of heart in our daily to do lists.  Whom are we serving? Our daily circumstances and roles will never fill us up.  Only one thing can.  Our identity is in Christ- who He is and how He made us.  We are here to do the work He has prepared for us and equipped us to do.  He is meeting us at every step along the way and as long as we are still here, we are still in process.

 ^"Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

(Phil 3:12-14)

And I was quickly able to put all I had learned into practice.  I came home to a husband leaving town for work, an energetic son looking for a playmate, and a very sick JuJu... 

Unfortunately the stomach bug they had last week, must have sent its "cousin" for a visit this week.  We have now switched ends and poor Julia is miserable.  She is going through plastic pants, pajamas, and showers at an unnatural rate.  She has been handling it all well, but the pain and mess are a bit much for anyone.

I stepped out on the porch this morning for a moment to regroup and breathe some fresh air.  I was greeted by this amazing flower.

The kids and I planted flowers and vegetables last week, from Walmart. I grabbed this one with buds on it, not exactly knowing what it was going to look like. It has exceeded all my expectations. But God has a knack for that.

I am so thankful for the time this weekend to reflect and remember the countless ways, big and small, that God's hand has been in my life. I am always overwhelmed by the privilege of seeing that same hand working in the lives of the women around me. Thank you all for sharing your hearts and showing God's glory. He's made each one of you so beautiful!

Scan Day

Today was "scan day" for Julia.  It felt strange to be going back after so long.  Last April we went to the hospital almost every day and this year only twice in April.  Julia was excited to go back to the hospital to see all her doctors and nurses.  We've really missed seeing them all.  We arrived at the clinic at 9am and went back to the lab to get started.  She was not thrilled about getting her finger pricked.  Definitely not a fan.  They are pretty used to that, though.  Nobody likes that part.  We just kept the process going anyway, talking around her as we went.  She was fascinated by the tubes in the wall they use to send them down to the lab (like the bank drive thru).  She calls it the "blood elevator".  She was soon captivated by her band aid and quickly smiling again.  Purple frogs can fix a lot of problems.

Then it was time to pee in the cup.  There are days this takes all day.  It's such a process to take off the diaper, sterilize, get everything ready, and usually we're doing it all while moving from appointment to appointment.  I was thrilled when she went right away.  Yay.  Seriously, there is not much more gross that squatting on a hospital bathroom floor with your arm in the toilet trying to catch pee, all the while practicing good sterile procedures.

The clinic was starting to fill up fast.  They were down several nurses and backing up quick.  They decided to triage the kids in the hall to speed things up.  It was so great to see Nurse Nancy again.  We just love her tender, sweet spirit! Her peace is tangible.  After vitals, we headed to the 7th floor to radiology.  Julia is such a pro at this stuff.  She walks right in with the tech and gets down to business.  It surprises me how she always remembers just what to do. 

I love this part because as I stand behind the glass wall watching her sitting there, with the shining cross on her chest, it reminds me how she is marked by God.  She is His and everything that happens is in His hands.  He has a plan for her life from before she was born and He has work created just for her to accomplish in this world.

Then we were taken back for her ultrasound.  It was nice to see Kalista's smiling face again.  She does a great job with Julia and loves how she lays so still.  This is Julia's favorite part of the day because she gets to watch TV during the scan. 

Then we headed back to the clinic to wait for her physical and to hear the results of the scans.  It was a full house.  There were kids everywhere.  It always hits me fresh to see so many new faces.  This time it included four babies, so sad.  Cancer does not discriminate.  We did see many old friends, too.  Those are hugs you can never explain... the bonds run deep and say a thousand words.  Julia was excited to see Ms. Betsy again.  The art table was definitely a hit with her today.  

Then we headed to the waiting room to finally eat a snack.  Poor Julia had been NPO all day, but didn't really seem to notice.  She soon decided she'd rather play in the playroom.  We made some new friends and had fun reminiscing about all the kids' birthday parties past and present.  Julia is so excited about her upcoming birthday in May and tells everyone who will listen.

Nurse Karen came out to take us back.  So good to see her smiling face :) Dr. Wofford did her physical today.  When she walked in the room she told us, HER SCANS ARE CLEAR!!  Praise God, we are so excited and thankful.  They had one concern, her liver is larger than last time.  They aren't going to do anything about it right now, just watch it.  Her white blood count is still low, 3.4.  Normal is from 6-17.  They had mentioned before this may be a permanent side effect.  This appears to be the case with her.  The good news is her body appears to have compensated.  She has been fighting off illnesses well- faster than the rest of us actually.  So we will continue to watch these and pray about them.

By the afternoon we were free and Julia was ready to find food.  We headed down to leave, and she said, "Mommy, aren't we going to eat?" She loves the cafeteria :)

Then it was off to get Carter and give him the good news.  Time to celebrate! For Carter that meant ice cream, for Julia some Dora soup. I love the ways these two squeeze into the same chair all the time.  They are so great to each other (most of the time).  I am eager to watch their relationship grow.  I know it will have rocky points, but their bonds run deep. 

Letters to God

Billy and I went out last weekend to celebrated our belated anniversary.  After a yummy dinner at Southern Roots (love that place!!), we wanted to go see a movie.  As we looked at our options we decided on Letters to God.  We have both wanted to see it, but knew it would be difficult.  We were right.

The movie was great.  It is the true story of the director's son's battle with medulloblastoma that took his life.  The characters were all endearing and heartfelt.  The movie skimmed over a lot of the aspects of the childhood cancer journey, but stayed true to it's message of faith and the path to salvation.  Tyler was a boy who knew God's purpose for his life.  In his short time here he led many people to walk with Christ.  His simple heart for others and desire for God was inspiring. 

Especially precious was his best friend, Sam.  Watching her lose her best friend was especially hard.  There was also some attention paid to the struggles of Tyler's older brother dealing with his brother's cancer and the pressures on his mom.  This is a huge issue to cancer families.  There are so many things that could have been covered in the movie, but then I guess it would have been way too long.  There were many lines about the chosen calling of cancer kids that hit so close to home.  God has touched each one of these courageous kids in a profound way. 

Also in the movie, Tyler's "wish" is granted and his family visits Give Kids the World.  They did not really explain much behind the village or its purpose, but there were a few glimpses of its magic.  They did show the mailbox added by Tyler for family's own letters to God and his brother sang an amazing song about life with cancer.

So when you have the chance, go and see Letters to God.  Check out their website were you can post your own letters.  Find out more about the incredible Give Kids the World Village, their inspiring founder, and their endless work for families. We are eagerly counting down the days to Julia's once in a lifetime visit in less than two weeks!!

On the eve of "scan day", Julia is doing great.  She is full of life, energy, and playful inspiration these days.  She is talking a mile a minute in a constant streaming monologue of her thoughts and observations.  We are excited to see all our friends in clinic tomorrow.  We have lots of hugs and smiles to share.  Julia can't wait to show off her new hair and hand out some very special hugs. 

As this day is now upon us, we are facing the realities of this unknown journey.  When talking to some other cancer moms in the past months I have heard over and over again that you learn to live in the spaces.  In the beginning of cancer, we lived life in chunks of several hours.  In time this became days, then weeks.  Now we live in three month spaces between scans.  We are learning more and more every day how to fully embrace each day as a gift and blessing.

We pray for a smooth visit tomorrow, positive progress at her physical and labs, clear views for all the scans, wisdom for the techs and radiologists, unveiling if their is anything in her body we need to see, and strength and wisdom for us to give God the glory and point others to Him in every interaction.  And as we rest in God's peace, Billy's new tattoo summarizes our outlook...

...24 hours later

And just a day later the kid who couldn't even stand up by himself and had a high fever, played double header soccer games!! How does he do that?

(Sorry no pics, it was raining.)

Julia's better, too.  I must say it was kind of peaceful and calm around here while they were both lying on the couch.  As soon as they ate breakfast this morning it was like all the words they didn't use yesterday came pouring out of the floodgates.  They have been talking incessantly all day.  Julia is rambling on a mile a minute as I type, about how to make a humming noise so you can fill your ears with air, and the sound a rectangle makes, and what flies like, and how much better she feels, and what Chloe the cat is thinking, and on and on.  They crack me up.

Falling like Dominoes

Having young children means you become well acquainted with the "sickness du jour".  There is always something or several somethings swirling around and you just wait for your turn.  As hard as being isolated was for the past year it was a blessing to not have to deal with all the little viruses flying around the playground set.  We only had a handful of illnesses over the entire year.  This spring we have been watching the 24hour stomach bug fly through everyone we know.  I feel so torn, do we want to just get it and get it over with? or are we holding out to avoid it completely?

We got our answer at 6am Monday morning.  Carter appeared next to the bed crying, "I threw up. You have to clean it up."  Billy was already getting ready for work and Mommy had stayed up really late, so I told him to just crawl in bed with me.  Seems simple enough.  Only he cannot rest knowing there is a mess in his room.  He was adamant (and loud) that it be cleaned up now.

He seemed to be okay at breakfast and actually wanted to eat.  As the day went on he got progressively worse.  By the afternoon they were both feverish and not moving from the couch.

 Carter was sick three times.  Julia never did get sick.  Having chemo has given her an incredible ability to control her nausea.  When you throw up for that many months I guess you learn how to stop it when you can.  Every time she would get that "look" on her face.  She would drink cold water and do this whole deep breathing thing.  Apparently it works.  

Unfortunately this was also the day for her GI follow up.  I didn't want to cancel because we've already moved it once and they won't be able to see her for another month.  Since we were heading to the peds floor of the hospital- where the sick kids are anyway- I put her in the stroller and we left.  The doctor said everything looks good.  They are happy with the way the miralax is working.  They are fairly confident there are no major complications they need to address; just clinical constipation from the surgery, chemo, and radiation.  So the next step in the plan? Time.  I was really hoping for something with an action verb at least.  Oh well.  They want to give her the time to heal physically and emotionally.  We are supposed to gently encourage her to use the potty, but wait for her to decide it is what she wants.  We go back for her follow up in July.

They were both pitiful for the rest of the day.  Neither one could even stand up on their own.  Fortunately they both slept long and hard and seem to be better this morning.  Hopefully this was the last of the bugs for a while and spring and summer will be healthy this year.

A Simple Walk

I took the kids for a walk the other night before dinner.  They love to pick flowers and there are so many beautiful colors to see right now...

I like when we have the chance to wander at their pace without a destination or time limit.  I was expecting a simple walk, but we got much more.

As we neared the main road, Carter wanted to pick up some of the litter on the grass.  We did not have a trash bag with us so I told him we would come back when we did.  As he passed the piles of discarded cigarettes and wrappers he commented that those were bad and made people sick.  They can even cause cancer.  This kid remembers everything he hears and sees.

We walked on a few more blocks and he looked up at me and said, "So mom what did we do to cause Julia's cancer?"

It stopped me in my tracks.  We talked about how pediatric cancer works and that nobody causes it.  God allows things like this to happen for a reason and for His glory.  We don't understand, but we trust God to take care of us.  He seemed satisfied with my answer and immediately launched into his 'Julia status update'.  He sounds like a doctor giving report on rounds.  He goes through her cancer diagnosis, her completed treatment, port removal, scan schedule, and most recent labs in the same way he would tell you about his baseball cards.  It still shakes me that this is his reality.  It also hit me just how much this is still weighing on his mind.  We've decided to go ahead with counseling for him to help him continue to process this experience.  I don't want there to be lingering questions or fears in his mind.  I know we are not trained in drawing that information out and as his parents it gets complicated.  We hope this will give him a chance to continue to work through it all.

As we continue to talk we always get to the end when he asks, what happens if it comes back.  I hate answering that question.  I don't have trouble with what to say, I just hate that I can't give them any definite reassurance.  We all want to protect our kids from the pain in this world.  In the pediatric cancer world that just isn't possible.  The child with the cancer will experience direct pain and suffering that can not be taken away or avoided.  The siblings face a different kind of pain through worry, change, upheaval, empathy, jealousy, and guilt.  And through it all their innocence is lost at a young age.  They learn about the realities of cancer, suffering, and death.  Other children we have walked this road with have relapsed and several have earned their angel wings.  This is our reality and we cannot protect them from it.  Their minds and hearts have had do deal with things no child should have to know.  I trust that God has a bigger plan and He is tenderly shaping them both for what He has planned for them...

But as I we rounded the corner and I watched them take off for the house, I couldn't help but wish for simpler times... the days when they talked of the dandelions clutched in their hands and not the realities of cancer.