flashes of hope...

"Now faith is being sure of what we hope for and certain of what we do not see."~ Hebrews 11:1

Hope...

Over the course of the last few months there have been moments of hopefulness...moments when the storm clouds break and the sunshine breaks through...moments.

I wish I could say that I had these hopeful moments all the time and I was just a walking, breathing hopeful person...I guess truth be told I'm a realist. Not that I do not hope, but I tend to dwell much more readily in the realities of the now. But, yet as my husband reminds me often I do not and did not ever do this when I was teaching...no, I saw potential for growth and believed in that potential throughout the months the student sat in my room...and when they moved on, I still believed. I guess the problem comes to myself...I am inherently pessimistic person when it comes to me...

Can I withstand this storm raging? I don't know...I must admit that this time around my armor is a bit more damaged from the arrows of the first battle in '06. I don't feel as strong as I once did...I wish I could say differently. But, these days things can bring me to tears in a heartbeat...in fact they did today.

I battle within myself to be stronger...keep it together, don't show the signs of weariness...just keep smiling and hoping. Because after all isn't that what people want to see?

Do we really want to see the broken shells of people? I know it's hard, believe me after walking the journeys it's hard to really see the brokenness of people and not want to turn away...not want to look away and hope that the next time you look it's better.

Yet, the Lord provides within the storm and gives me flashes of hope...literally.

Back in February when we were in the hospital an organization called Flashes of Hope came to take pictures of the children in the hospital and their families and give them hope...

To give the kids a make-over...comb their hospital bed hair, or do a little make-up...honestly whatever just to make the child smile. After you've spent time in a children's hospital you know that smiles are not always easy to come by. So, they came and took Camryn's pictures...





















These...these are my flashes of hope. In the midst of the storms this face helps me through each day...you see in the things the Lord provides He gives me flashes of Himself...hope.

I am thankful...just simply thankful.

helpful little wy

Tonight was bath night at our house and usually this is a very involved process as it means a central line dressing change for Camryn...

But, tonight was going to be tricky...my partner for bath time and line changes was not home. Jason had Open House at school tonight which meant I was going to fly solo...which is okay, but not ideal.

We made it through bath time just fine. Wyatt took his bath first and did great...Camryn was next up and did well too. The tricky time was coming...line change. As I got Camryn situated and the numerous supplies needed in order Camryn asked, "Mommy who is going to fan my line?" Let me explain...while changing Camryn's line dressing we have to clean it and it stings a bit, so Daddy always fans it to just make it better. Don't know if it really helps or not, but mentally Daddy's fanning does wonders. I was at a loss...I said, "I don't know Cam, maybe Wyatt can help us."

So, we asked Wyatt if he wanted to help...he just stood there staring at Camryn's line in wonder...mind you he has seen it many times, but usually it's in a manner of staying away or being careful. I think Wyatt was shocked we were asking for help.

After thinking it through Wyatt jumped in and helped and it brought tears to my eyes...

He sat next to Camryn and fanned her line and told her it was "Ok, Camryn." The love that he has for her was so easy to see...

Wyatt loves his sister...and she loves him.

I'm so thankful tonight for my helpful little Wy, he was a lifesaver.

Truly, he is a lifesaver in more ways than one.

LOVE you Wy.

it's His...

Today I was reminded of something so clearly while at clinic with Camryn. All things are His.

Camryn had her Tuesday EKG this morning and after the ups and downs last week with her EKGs, we were praying today's was good. As we got to the lab the techs all smiled and Camryn climbed up on the table and did exactly what she was supposed to...yep, she's a pro at this. As the EKG ran and was printed, my heart was anxious...for Camryn's heart. The tech didn't say a word so that only served to heighten my anxiousness...Camryn finished up and the tech handed me the copy to take to the doctors. My eyes immediately scanned the page for the word "Normal"...and it was there, not once, but twice. "Normal Sinus Rhythm...Normal ECG"...yes, I smiled.

We headed upstairs and we kindly greeted by the super nice lady behind the check-in desk...she says hi to Camryn, asks about her Daddy, checks in to see if we had a nice drive down. Honestly, this lady is the nicest. We headed to procedure clinic and got our regular spot...yep, Camryn is a creative of extreme habit we have to sit in the same curtain area every time. If we happen to be late the nurses reserve it for her...yep, she's a regular.

I ran the EKG over to the clinic side for one of the doctors to sign off...Dr.A was so pleased that he quickly signed it off. Camryn got her arsenic running and all went well. As the arsenic was running we got a copy of her lab sheet and let me say this...it was fabulous! Camryn's levels are the best they've been in a long time...it was awesome. I quickly called Jason to tell him, I was beyond excited. I know that for now this is what we want, good strong levels and soon enough the lab sheet will look entirely different; but for now I will celebrate the good and leave the rest for another day.

Camryn especially enjoyed laughing and joking around with Allison, Dr.M and of course Nurse Charlotte. I was smiling at her as she joked around with Dr.M playing with his stethoscope and such...seriously this is the best doctor ever. Camryn loves Dr.M...they have a very special relationship. And it's not hard to see why...as Camryn was chatting with Allison and Nurse Charlotte, Dr.M and I chatted. He is such a special man, honestly he is such a comfort for me and Jason. As I was chatting with Dr.M and he was asking if we had any questions; he said something that I have been mulling over and over in my head....

"it's His time...If I had my way we'd be working to get you guys home from transplant soon, but instead we're not there yet. But it's His...Camryn will not get there a day sooner or a day later then what He has planned."

And it is...it's His.

Dr.M smiled and then said that Camryn looks so great and she is doing so well...it's so wonderful. And then he went on to say, "We all just love her." Again my heart smiled because they do...they absolutely love her. Camryn is not merely a patient with a number and file; she is a 5 year old fighting a fight that if any of her doctors or nurses could they would take from her in a heart beat. Camryn's family at UCLA has become her treasure, she knows their schedules, she knows they care, she feels safe and she knows she matters. There is no greater gift to a child who's world has been turned upside down than knowing that they matter...that they matter greatly.

Honestly, to a parent of a child who's world has turned upside down there is no greater gift either. To know that Camryn is getting the best care possible, that she is in hands that care so deeply is such a comfort. And it's His...it's His gift to me.

There is no plan B in all of this, it's His plan and inasmuch as I would love for it to be different, it's not. I am not the one who holds the world in His hands, who breathed life into each of us, who creatively knit us all together as uniquely as we are...not that's not me.

At times I do feel like Job, oh I know that Job endured more than I could even imagine to be humanly possible...but, I feel like Job when the Lord speaks to him in the ending chapters of Job and Job responds...

"I know that you can do all things,
and that no purpose of yours can be thwarted." ~ Job 42:2

While looking around at the broken pieces, wondering, questioning...I know. I know that the Lord can do all things...He can and will according to His plan. I guess the struggle really comes when His plan does not align with mine...and oh that happens so often.

I would love to be half way through transplant...starting to really think and work towards coming home. Yes I would love that. I would love for Wyatt to be through surgery and done with his part...but, I still have to wait for the day when both my children will be admitted and in the hospital. When I will have to be two places at once...that day is coming. But, oh how I wish it was behind me.

Yet, it's not...there are hard days ahead and He knows that. He knows the outcomes that run through my heart and Jason's heart...both of us afraid to speak them into words as though if we do they might actually happen. But, we've learned a lot throughout this process...what we want...what we think...just really is that. What we want.

And yet it's all His...

From the very beginning of our journey with Camryn there is a struggle within to let go, to surrender our daughter and trust her to the Lord's hands. Some days it's easier than others to surrender this whole journey. Some days it just aches and hurts so deeply.

The other day I went up to my classroom to get some things for my long term sub in order...and I cried. I cried as Jason and I walked away...I had such high hopes for this school year...after a 10 year wait I was teaching the subject that I have longed to teach since beginning college...yes for 16 years. I was excited to have these 8th graders again as I had taught many of them as 7th graders and I loved them. The year was going to be rough teaching two new subjects, but it felt as if things were moving in the right direction...

But, I don't need to tell you that everything changed.

I cried to think that what I longed to do was not there now...I miss my students, I miss my teaching peers, I miss all of it. Not because I lived and breathed teaching; but because if I was there I wouldn't be here...

And yet it's His...

Our lives have taken some turns that we didn't expect, but for what it's worth we have a good life. We love each other, we cherish each other and we lived today...we love the Lord and beyond that the rest is just details.

So for tonight I am resting in the promise that it's His...all of it, every single bit of it...

"I hereby command you: Be strong and courageous; do not be frightened or dismayed, for the Lord your God is with you wherever you go." ~ Joshua 1:9

weekend break

After Friday and my heavy heart I was hopeful for a weekend break...2 days without clinic. Yes, that is what weekends have come to mean.

This weekend was the break that my heart needed...

We were able to spend the weekend enjoying our life now, this weekend was a bit of a break of the normal. We were able to just be...

Be a family with a broken heart and yet able to go on.

Be a family with two little ones who have yet to fully realize what the future holds.

Be broken...Be upset...Be happy...Be able to laugh...Be scared...Be whole.

This weekend allowed us to just be able to realize that even in the midst of the storm, even in the midst of the heaviness, even in the midst of the future that is coming HE is greater.

He continues to hold our hearts ever so gently as we navigate these paths...

Tomorrow we start another week and I will admit it's always hard, but HE continues to be faithful...

heavy...

All of this is getting heavy...so heavy. I feel at times if I let it, all of this could drown me...

We spent 5 hours at clinic today. Everything was absolutely fine, it just took that long to get everything rolling and going...5 hours that were long and heartbreaking.

For 5 hours as I tried to entertain Camryn and not lose my mind with the fact that we were sitting in clinic; I watched countless children and families come and go...

For 5 hours I saw looks of despair, relief and a million other emotions. A young teenage girl walking back to her curtain area with tears streaming down her face as the arm of her doctor was wrapped around her. Parents of a two and a half month old excited that their little one didn't have to have another shot until October. A young boy who has lost part of one arm trying to manuever a tray so he can play with his mini skateboards. A young mom of a little one who is screaming uncontrollably as the nurse is accessing the little one's line. A family as they listened to the doctors explain new meds and procedures. A little girl who wandered over to Camryn's curtain area to say hi, while she waited for her blood transfusion. Another teenage girl who we first saw on the day of Camryn's relapse who was walking and talking, but today she was slumped over in her wheelchair.

Yes, it is just heavy...

The in house school coordinator stopped by to give me kindergarten summer work just to give Camryn something to do and also begin to prep her for kindergarten. As Camryn flipped through the workbooks she innocently asked if they use these books at the Big Village where she is going to kindergarten.

Or the conversation last night between Camryn and her cousin James about going to school together so they can play on the playground and Camryn asking me when she starts at the Big Village. All the while James telling her excitedly that they will be friends at school and they will be together.

Yes, it's simply heavy...

Wondering how all of this came to be again...wonderings that have no answers, but still my mind and heart wonder. I know there are no good answers, at least none that make sense to me...but, I wonder where all of this leads...

And it's all weighing heavy tonight.

a memorable, magical day...

What a day...truly a memorable, magical day!


Enjoying the carousel


Look what Daddy got me!


Dancing in the street parade


Daddy and Wyatt enjoying Dumbo


Oh how I love these two...


These three make the world go round.


C is for Camryn


Big Sister...Little Brother


I just love this picture...


I am thankful for such a wonderful day to cherish in my heart for Camryn's 5th birthday...

Thankful...for such a great day!

realizations

I am beginning to realize that this is only really the beginning...

The realities of what Camryn is facing, what we as a family are facing are long...very long. There is just no quick way to do things...things are not entirely simple...things are not entirely easy. They just are.

I am beginning to realize that nothing is really a given...

Today Camryn had her normal, routine EKG which she has twice a week and so far they have been fine...that wasn't the case today. Camryn did great getting her EKG and was a trooper through it...when the lab tech handed me the copy for the doctors my heart sank. Even to my untrained non-medical eye I knew that it wasn't a good EKG. So we headed upstairs...heart heavy wondering what this will mean? Will they DC her arsenic? Will they adjust the dose? Is her heart really in trouble?

Her doctors took one look at the EKG and sent us back to the lab for another one. Maybe it was a bad read? So, we went...and thankfully the second EKG was much better. And her arsenic ran as normal. Dr.M decided to have the cardiologists review Camryn's EKGs and determine if adjustments need to be made in her arsenic dosage.

All in all she had a good day at clinic, after we got through the little unexpected bump in the road.

I am beginning to see that we are not in the minority...

On any given day at UCLA there are many children coming for treatment and after you become a regular you realize that you are not alone. That really there is not minority...there are too many children fighting for survival. Too many children having to endure things that are unthinkable...too many. Today at clinic the procedure center was full and they were double booked on children receiving chemotherapy, transfusions and medications...far too many. There is no minority, there are many kids fighting and Camryn Lee is one of them.


I am beginning to really see with my heart what this journey is teaching me...

This journey is not easy, quite frankly it's down right frightening at times. There are ebbs and flows, moments of absolute sorrow and disappointment...and moments when the grace of my Father is lavished on our lives in ways that leave me speechless. I will not pretend to know why Camryn has cancer...that will be a question that will forever be left for my Father. But, I do know that there are moments along this journey that my heart has learned something that I don't know if I would have ever learned. I've learned that life isn't always a neat little package. I've learned that I cannot do everything on my own. I've learned that it's okay to be broken. I've learned that I must rely on my Saviour. I've learned that you can be a good mom and a bad one all at the same time. I've learned that fear cripples you. I've learned that the Lord is bigger than ALL of it...and quite simply I have a lot left to learn.

I am really learning to appreciate the little things...

At clinic today Camryn was cared for by people who are going about their careers, just doing their job so to speak. Yet, they do their jobs with such grace and dignity and love that I am amazed by them. They care for Camryn in ways that I just cannot repay...and more than that they care for Jason, Wyatt and me. They care for all of us and I'm thankful.

Good lab reports might seem little, but they are huge and I am thankful for the numbers on the page. I'm thankful for lab techs that take the time to consider a five year old who has to have EKGs. I am thankful for our life at UCLA...it's a little thing, but I am so thankful that in the summer of 2006 we chose UCLA.

The simplicity of life...that beyond all the stuff life is fairly simple. And I appreciate those things that just seem to happen when you need them too...those moments when friends call exactly when you need them most. Yep, the little things...

I am learning that the Lord is faithful...

There are many details to figure out throughout this journey and there will be more once Camryn officially goes into transplant; but for now the Lord is in the details. He is moving things in ways that only He can...He is opening doors and windows...He is holding us.

I am really learning that all of this is real...

For so long one can walk with the Lord and never really walk with the Lord. We say the right things, we do the right things...but the depth of our faith is about a puddle. We fail to go deep with God...I know I did and do. But, if anything I am learning that I need to go deep with God; for it's in the depths that He is to be found. The Lords love for me runs deep and it's not about to change...therefore, I need to dig my love for Him deeper so that when the circumstances of life come...He is my anchor. He is my rock...He is my foundation...

I am realizing that in my life the Lord is far surpassing any expectation I have...I dream little, I dream in a box if you will. I have been known to limit God...

And you know what?

God is busting through any and all limits I've set...He is a boundless God, which means He is able to do anything...

Anything?

I've known that in my head, but my heart has been slow. I've always felt that the Lord needs my help, my consulting, that in some way He needs me. How arrogant am I?

If anything I need Him.

I have come to realize that these words are so true:

This is the air I breathe
This is the air I breathe
Your holy presence living in me

This is my daily bread
This is my daily bread
Your very word spoken to me

And I I'm desperate for you
And I I'm I'm lost without you

This is the air I breathe
This is the air I breathe
Your holy presence living in me

This is my daily bread
this is my daily bread
your very word spoken to me

And I'm, I'm desperate for you
And I'm, I'm lost without you

And I'm desperate for you
And I'm, I'm lost without you.

...and without Him I am nothing. I guess that's what I've come to realize afterall.