motherhood...

I received this on Friday...I've seen it before, but it holds much more meaning now.

Before I was a Mom
I slept as late as I wanted and never worried about how late I got into bed.
I brushed my hair and my teeth everyday.

Before I was a Mom
I cleaned my house each day.
I never tripped over toys or forgot words to a lullaby.
I didn't worry whether or not my plants were poisonous.
I never thought about immunizations.

Before I was a Mom
I had never been puked on.

Pooped on.

Spit on.

Chewed on.

Pottied on.

I had complete control of my mind and my thoughts.

I slept all night.

Before I was a Mom
I never held down a screaming child so that doctors could do tests. Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night watching a baby sleep.

Before I was a Mom
I never held a sleeping baby just because I didn't want to put it down.
I never felt my heart break into a million pieces when I couldn't stop the hurt.
I never knew that something so small could affect my life so much.
I never knew that I could love someone so much.

Before I was a Mom
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child.
I didn't know that something so small could make me feel so important and happy.

Before I was a Mom
I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.
I had never known the warmth, the joy, the love, the heartache, the wonderment or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much love or so much pain before I was a Mom.

I never knew I would love being a Mom.

— Author unknown.

The journey of motherhood has been anything but what I expected it to be...never imagined this journey to be what it is, never thought I would have my mommy heart ripped in two over and over again and yet be ever so thankful at the same time.

Today I looked the gift Jason gave me the first Mother's Day that Camryn was sick...four years ago. I teared up looking at her darling face and thinking to myself...had I known then. You see at that point Camryn was sailing through her treatments and it appeared as if she was beating this enemy well. I guess there is a part of me that wishes that I did not have certain moments of motherhood, but then I wouldn't have this journey with Camryn and for what it is worth I have grown to appreciate things about her that I might have taken for granted. I love her little face...I love those big blue eyes, that dance when she is feeling well and I love that they danced today. I love her spirit...for she has taught her mommy much about what it means to be a mom, what it means to love someone more than yourself...

Thank you Camryn Lee...

Three years ago Wyatt was dedicated on Mother's Day...today I was remembering how much I felt then what I feel now, uncertainty, isolation, worry, fear and yet in the midst there was this ray of hope and sunshine that just melted my heart then and he continues to moment by moment. As I watched Wyatt run around today I just smiled a smile that I treasure in my heart...for Wyatt and I walked an incredible 9 months together before I even saw his face. And now I cannot even believe what a precious little piece of my heart he forever holds. Wyatt has taught me to believe beyond what we can see, that the Lord is carrying us through even before we know it.

Thank you Wyatt Jason...

For these two make the ride of motherhood worthwhile...



And where would I be without my own mom, Jason's mom, my sisters, my aunts, my grandma...the many women who have been my "mom" who have taught me, influenced me and molded me into the mom I am today...

Thanks Mom...

a taste...

The past two days have provided a taste of normal life and it tasted quite good...

And it left me wanting more. A lot more...

There is a fine balance between wanting the normal and accepting what is right now. We as a family have a long way to go until the flood gates open and normal life is upon us, but for what it is worth the taste was wonderful...

And it left us wanting more.

I am not entirely sure when the normal will be back and even if it is feasible to think that maybe this summer it might be. But, somewhere inside myself I cannot let go of the hope that with every passing day it's coming...

The day Camryn can be six and Wyatt can be three and do the things that kids do.

And yet in the shadows it lurks...

The piece of baggage that I think we'll always carry...even when "normal" returns. Can I trust this? Can I live in this and believe this to be true? Or will the bottom give away again? Can I begin to plan and dream again without the lump in my throat of what if?

The shadow of doubt and fear...

And I know that Satan loves to douse it on my heart, oh he loves to rain on my parade and leave me feeling so lacking, so alone. He loves to create the illusion of the shadow that grows and moves ready to swallow me whole. He loves to leave me calling on my God in doubt, after all he loves to create those moments that leave us wondering..."Lord, where are you?"

When you think you've hit the bottom
and the bottom gives way
and you fall into a darkness
no words can explain
and you don't know how you make it out alive
Jesus will meet you there.

When the doctor says, "I'm sorry,
we don't know what else to do."
and you're looking at your family
wondering how they'll make it through...
Whatever road this life takes you down,
Jesus will meet you there.

He knows the way to wherever you are
He knows the way to the depths of your heart
He knows the way cuz he's already been
where you're going
Jesus will meet you there.

When the jury says, "Guilty,"
and the prison doors close
When the one you love says nothing,
just packs up and goes
When the sunlight comes and your world's still dark,
Jesus will meet you there.

When you've failed again and all your
second chances have been used
And the heavy weight of guilt and shame
is crushing down on you...
And all you have is one last cry for help
Jesus will meet you there.

He knows the way to wherever you are
He knows the way to the depths of your heart
He knows the way cuz he's already been
where you're going

When you realize the dreams you've had
for your child won't come true
when the phone rings in the middle
of the night with tragic news...
Whatever valley you must walk through,
Jesus will meet you there.

He will meet you there.

Jesus will meet you there...
~ Steven Curtis Chapman

This song has come to mean a lot to me...because the first two verses have been sung in my life. And He did, Jesus did meet us. And I am thankful that He will continue too, always. He walked and is walking through valleys with us...His love runs so incredibly deep for us, each of us.

The taste was delightful and I am grateful for it as it gives us hope to keep believing that Jesus knows this journey is hard; because with every step we take He takes it with us...

whirlwind...

It's almost as if May came and the insanity of life hit...honestly this week has been insane to say the least. I'm hopeful that maybe just maybe this is the crazy week of the month and then life will slow down. And you know, it's not even like we are living normal life...it's our medical life that has been crazy along with Jason and my working life. No our family life has been pretty normal, well at least our normal.

To update: Still no word on Camryn's echo, going to call tomorrow and see where it stands, but we continue the nightly Lovenox shots...we are hopeful that maybe sometime this month we'll get that echo in. Saying lots of prayers...

We continue to juggle a lot of medications along with refills, prescriptions and pharmacies...as of right now I *think* we have all we need for awhile and will not have to make trips to 3 different pharmacies to get Camryn's medicine. But, what can you do? Thus is the life of a little girl who had a transplant and has seven medications all of which are pretty unique...some have to be compounded (mixed), some are specialty (only available at UCLA), and some are run of the mill regulars (CVS kind)...but for what it is worth it could be worse and that is what I keep telling myself. Yes, even when driving around from pharmacy to pharmacy or fighting rush hour traffic...that this could be worse.

Far as insurance we've decided to change Camryn's group...if I'm honestly I'm really discouraged about it in some ways. Camryn will be leaving Dr.K who has been her pediatrician since she was born and was our first doctor to *know* that the worse was coming with Camryn. I so appreciate Dr.K and I am very thankful that Wyatt will still be with her at least for now...maybe at some point we will have to move him as well, but for now Wyatt will stay. I am very hopeful though as I had emailed the potentially new pediatrician for Camryn and thought I might hear from him in a few days and within ten minutes he had emailed me back and said he was glad to see her and make the necessary referrals...how great is that? I am very thankful that we have options in order to keep Camryn with her team, and the doctors we love so much.

So that's where we are in our whirlwind...hoping that the winds die down a bit and maybe some calm will come. But we are ever so thankful that Camryn is doing well, Wyatt is doing well and some days that is enough...

Like tonight when I got home and heard the giggles from the bathtub and saw the biggest blue eyes and some mischievous brown eyes looking up at me, I smiled...

Even in the whirlwind there are moments that I wish I could freeze in my mind and keep them forever; because what it all comes down to is what is right now...

eleven months...

Seems entirely surreal that Camryn is one month away from ONE year post-transplant, which in transplant world is a very big deal. To make it to a year without any huge set backs is refreshing, granted we still have a month to go, but Camryn is getting there...

Fittingly today Camryn headed down to UCLA for clinic, I went with her because I had already requested the day off for Camryn's echo...unfortunately Camryn did not have an echo today. We are still dealing with insurance issues, but hopefully things can get figured out soon. We are anxious to see what the status of Camryn's blood clot is. When we arrived at clinic everyone said hello, it is so funny to see Camryn on a first name basis with everyone. We headed over to procedures for labs like always...while we waited Camryn read A Very Hungry Catepillar to me. Wow, what a little reader she is becoming.

After labs we headed back to clinic and waited in our room...while we waited we chatted and played a few games, it was fun to see Camryn's life at UCLA. Camryn's nurse practioner came in and that was a welcome visit, we love B she is the best. We quickly chatted about the insurance issues that we are having and some possible things that might help maintain Camryn's care at UCLA. As we were chatting the door opened up and Dr.A came in and checked everything out. All checked out great, it was determined that Camryn's doing well. She is growing like a weed, quite literally...honestly she just seems to be taller and taller by the day. The GVH rash is now subsided, a little GVH remains in her mouth so we are having to watch that, but her prograf seems to be working well and Dr.A prescribed some "magic mouthwash" to help with any pain the mouth sores might be causing.

All in all the visit with B and Dr.A went super...we were ready to go home just waiting for prescription refills when who should we find...Dr.M. As always Dr.M wanted to know how Camryn was doing, he too commented on how tall she is getting. We chatted for a bit, it's always nice to chat with Dr.M. Camryn and I also saw friends that we had met at the Nickelodeon day...the little girl is six just like Camryn. Although her cancer is different it was nice to see them and encounter another smiling face. I am really thankful that the Lord keeps bringing encounters with other cancer moms and their stories...it's humbling, heart-breaking, bittersweet all rolled into one. Challenged by what brought us together as friends, but thankful to get to know them.

Eleven months have passed since Wyatt gave Camryn his juice and as Wyatt said today..."I want it back." To which Camryn replied, "You can't have it back Wyatt...your juice is what is making me not be sick anymore." Wyatt says, "Okay you can keep it."

Quite a journey...quite a story...

Some days are just filled with normalcy and some days the realities for which live are evident in every breath we take. We are trying to find a balance, trying to find a place where our lives fit and yet knowing that right now this is how it is...we don't really fit anywhere. We are different and yet we are the same...it's a rough balance.

Ever so thankful for the past eleven months and what we have learned for a little girl and a little boy about the resilence of the child-like spirit...the gifts that the Lord gives to protect the little hearts that are so precious to Him. Wishing we were almost 4 years post-transplant, but yet knowing that we are really only a month a way from a year.

And yet so thankful for the bright spots of today...

* A great clinic visit...

* Lunch with two of the best gifts a mom could ask for...

* Driving around Burbank for two hours, but finally getting Camryn's medicines...

* Emailing a doctor at UCLA to see if he might take Camryn as a new patient, crossing my fingers that he would say yes...

* Ten minutes later getting an email back that says he would be glad to see Camryn and refer her to UCLA...

* Listening to my little Dodger cheerleader, chanting "Go Matt Kemp...Go Either...Go Dodgers"...

And the absolute cherry on top?

* Talking with Camryn on the way home from UCLA about how she asked Jesus in her life to give her life to Him. Yep, guess it doesn't get much better than that. And really everything else pales in comparison...

Yes, oh so thankful that these past eleven months are not in vain...that somehow, somewhere the Lord is making something beautiful with all of it. Because there was a beautiful little heart chatting away about her love for Jesus...

That is the beauty of it all...

a little bit longer...

Well, today we received news that our insurance group had denied Camryn's authorization for an echocardigram at UCLA and referred us to a pediatric heart center. Our nurse practitioner has been busily trying to appeal the denial as it is important Camryn's echo happens at UCLA in order for her doctors to make a determination on her blood clot.

Long story short...

Camryn will not have an echo tomorrow, and I'm not entirely sure when she will. Thank you for your prayers, please continue...we are so hopeful to stop the dreaded Lovenox shots, guess we will just have to wait a little bit longer...

But, as always these insurance delays and problems make us crazy...I was battling the authorization and Jason has been battling trying to get one of Camryn's liver meds refilled. Guess it's just another day dealing with the issues that never seem to go away. Hopeful all of this can get figured out...we are at the point of completely removing Camryn from her current insurance group and starting at square one with another group more closely connected with UCLA in hopes that we can get authorizations more smoothly and more quickly in the future. Today when I was talking with an insurance lady at UCLA she asked me if I would rather have Camryn with a pediatrician close to our house...I sort of laughed. The last time Camryn went to her pediatrician's office? Fall of 2008 so I don't really think the location of the office is important...keeping her with her team at UCLA is.

Guess we are fighting these battles a little bit longer...

Just wish the end was in sight.

lollipops, nickelodeon, and thoughts...

Today our family was invited to an event at the Nickelodeon studios hosted by The Lollipop Theater Network. The Lollipop Theater Network is a really cool group that shows movies that are in the movie theaters to children who are hospitalized, isn't that cool?! We were invited to come to the event as a guest through our connection to UCLA, one of the hospitals that Lollipop works with.

The event was amazing...we had found out before hand that Camryn would be buddyed up with the girl duo Savvy & Mandy. There was a bit of a glitch in the connecting with Savvy & Mandy, but once everything got figured out Camryn had a blast! The event had life - size versions of the games Connect Four, Candyland, Jenga...it was so fun! There were also lots of other games for kids to play, which was a hit with Wyatt too.

When we got there Camryn got to have her hair done by the a salon from Beverly Hills...she LOVED every second of it! After the hair was done they did her make-up, complete with yellow eye shadow, Camryn was in heaven!





Here's Camryn trying to win at Candyland...so fun to actually move your life - size gingerbread men.





Here's Jenga...lots of fun when it fell over, not so much fun stacking it again!




Twister anyone?



The Elefun elephant...Camryn loves Elefun!



Wyatt's favorite part of the day? The food...enjoying his smoothie to the fullest!



I believe he was rockin' out to the music...could have been Baby, Baby, Baby by Justin Bieber?!




Camryn with Savvy & Mandy on the Connect Four game...



Decorating cupcakes...yep, Wyatt put on animal cookies, marshmellows, spinkles, gummy bears, fruit loops...fun!




Camryn enjoying the cupcake booth...



Getting ready for her "Life" photo...



Yes, that is Wyatt laying in the blue sand...he absolutely LOVED it! It was awesome sand...nice fun at the Crayola booth.



The end of the day...so thankful for the fun of today for the kids that have struggled so. Camryn shared her buddies with another little cancer girl who is four, it was great how they enjoyed their day. While the girls made bracelets I sat and talked with the little girl's mom...their journey is not like ours, we are not battling the same cancer; but it was refreshing and heartbreaking to listen to their story...




Even in the midst of the fun of the day there is a harsh reality...as Jason said as we drove away, "Now we all go back to the hard, real world..." Oh so true. Talking with the other mom was a nice breath for me, yes at moments I felt like my very thoughts were being spoken by someone else...that we are not alone on this journey, and yet so often we feel like we are. The mom and I exchanged emails and I hope to keep connected to them...it's as if the Lord in the midst of the fun said, "I haven't forgotten how isolated you feel...I haven't forgotten how lonely this journey is. See I have introduced you to someone who is walking in your shoes...now be her friend." I also met another mom who's daughter also is at UCLA in treatment...it was wonderful to talk with her as well...just to know that again we are not alone.

I am thankful for people who give and donate to causes that bring a bit of sunshine to children who are fighting diseases that are heartbreaking and so unfair...

I am thankful for connecting with others and hearing that my heart is not too far off, that this journey is long and hard...

I am thankful for two teen-age girls who could have blown off two little girls with cancer, but they didn't...they made their day.

I am thankful for a little boy who thoroughly enjoyed his day in his own way...I believe a blue sand box might be in his future. :)

I am thankful for a little girl who has endured so much and yet is still just a little six-year-old girl...

I am thankful for a daddy who saw his little girl's unhappy heart and tried to fix it and he did...

Thankful that we were able to have fun, to celebrate and just be for a day...

And for those of you counting...Tuesday marks 11 months post transplant!!!

saturday...

Some days it is just a gift to be with the three people you love most in the world. Whether it is running to the mall to find a few birthday gifts or running to Target to get a few necessary items or building a Thomas train track that fills the entire living room floor...whatever it may be, it is simply a gift.

Today was a gift beyond measure...

The smiles, the laughter, the giggles...all of it, was a precious gift.

And even as evening comes and the three people you love most are doing a p90x workout together and you hear the laughter and giggles continue, you thank the Lord for another day...

Another gift...

And some days it's as simple as that.