6.10.2015

All is Well, Sort Of

Isn't it interesting that the very thing that brought me peace for so long now brings upon intense anxiety?  This computer screen was an escape and therapy on so many sleepless nights and burdensome days while Lucy was sick.  The things I couldn't say, I could write.  I found so much comfort at the keyboard.



Even before Lucy was sick I couldn't wait to get on this page and write about our daily adventures.  Even when those "adventures" never saw us leave our yard, there was always a reason to write.  This was my scrapbook, my journal.



I haven't blogged in a while and I'm honestly doing so tonight through clenched fists.  The pages of the last few months remain blank.  I have so many pictures, so many memories to share, so many words to write--yet I can't.   The passion isn't gone.  It's a physical sickness that is stopping me.



To those of you who have sent me emails, I want you to know that all is well in the Krull house.  The kids are enjoying summer and both girls are on swim team.  VBS is this week and we are going to the beach next week.  It will be a well deserved vacation.



I want to write again.  I want to find the freedom that my fingers knew once more.  Even opening the Blogger page was an anxiety-riddeled exercise.  I don't quite understand why I can't do it.  Why has the peace associated with writing escaped me?  Even if no one ever read this page again, I want to write.  I want to be here.  I want this to be my heart once more.



I'm praying and asking God to help me work through this.  I know it's all part of the grieving process but I'm ready to move on.  Working all those details out still has me on bended knee.



I wanted to share this testimonial with you guys.  We've told our story a million times.  I've listened to Lucy's hell retold by countless scribes.  But this one.  As I watched this video I couldn't breathe.  Maybe it was Dr. Boop speaking.  I'm not sure.  I can tell you that every bit of it was from the heart.








4.13.2015

Go Lucy Go Race

If you've wondered where the Krull family has been for the past few weeks, we've been up to our eyeballs in race planning.  It's been a lot of work, but oh!  This year's race is going to be amazing---the best one yet!  Not only is this our 5th anniversary, but we have also added a 10k.  To date there are 695 participants registered.  Will you please help us reach our goal of 800?

This year everyone who participates in the race will get a FREE hamburger or hotdog, chips and a drink.  Not to mention a grab bag of race goodies and a commemorative race cup!

Most importantly, we are raising money for a great cause.  The Go Lucy Go Foundation supports the efforts of LeBonheur Children's Hospital through various avenues.  Hot meals, food pantry, clothes closet, the Ladybug Library and nurse education.  I want to share a few pictures with you of some recent additions to the Child Life department on the 7th floor.  The 7th floor of LeBonheur houses the Neuroscience Institute, where Lucy spent all of her time when she was there.

This is the new teaching doll that the Go Lucy Go Foundation purchased.  This $3500 doll is interactive, allowing doctors, nurses and child life specialists to show children about their illness and upcoming surgery.  I can't tell you how helpful this doll was for Lucy before her craniotomy.


Also this year, the Go Lucy Go Foundation purchased an iPad cart filled with 25 iPads.  Kids are able to check these out and use them in their rooms.  They can be used for keeping up with homework, medical education or just plain FUN!  Every kids needs a distraction when they are in the hospital.


And here is the project near and dear to my heart.  As I have said so many times before that we read books on a daily basis when Lucy was in the hospital.  Providing these books for the children of the 7th floor brings such joy to our hearts.  The books are donated with the assumption that children are going to want to take them home.  Nothing makes us happier than knowing a book that brought joy to a child while he or she was sick will also bring happiness at home.


Because of you, families of brain tumor patients and children with Epilepsy are being cared for every single day.  If you haven't registered, don't wait.  The deadline to register for this year's race is drawing near.  This Wednesday, April 15th at MIDNIGHT the online registration will close.  For those of you who want to support the Foundation as a Spirit Runner, this will be your last day to sign up.  Shirts will be mailed to you the week after the race.

Race registration will be available the day of the race for an additional charge.  Go online now and help support the work of the Go Lucy Go Foundation.  Register at www.golucygo.org



3.23.2015

It's Been a While--Lucy Update

This is Dr. Boop.  The man God chose to save my daughter's life.  

Wow.  Where do I start?  It's been such a long time since I've written or updated on Lucy.  I am not even sure where to begin.  First, let me update on Lucy.  At the beginning of February I wrote about Lucy having tubes put into her ears.  She was having a lot of hearing problems and we thought that this was going to be the answer.  Immediately when she woke up from surgery she could hear-almost perfectly.  We were amazed and ecstatic.  However, within three days she was back in her hearing aids.

Fast forward a month and a few doctor visits later and we are fairly sure that the hearing loss she is experiencing is going to be permanent.  High dose radiation left irreversible damage that she will just have to live with forever.  I am extremely thankful for hearing aids and with them she can hear almost perfectly.  While I am thankful for the aids I am still having a hard time with this one.  Honestly, its just one more reminder that she is different.  One more reminder that cancer tried to kill her.

To be perfectly frank, I'm struggling with a lot right now.  Erik says its because I have been studying the Bible and the devil is working on me.  I think he's right, but I also think it's a little more than that. I don't say this lightly, but I feel as if I have PTSD.  I'd love to know how many other cancer moms feel this way.

I miss the perfectly healthy child that I took for granted for 5 years.  I leave sporting events angry that thousands of children can run and play.  A part of me dies every time I watch Lucy struggle through a social encounter.  My heart literally aches as I see her fighting through the challenges that learning poses every single day. Yesterday as we left the soccer field I cried off and on for the rest of the day.

Most day I walk around in a fog, hardly remembering a moment of the day before.  For example, I had to call the school the other day to find out why I was charged an amount on my account.  Apparently it was for Jack's preschool registration for next year.  I was mortified when she told me that I had turned in his application the week before.  I don't even have a single memory of filling out the 6 page application.

So...yeah.  I'm pretty much a hot mess right now.  I think part of my PTSD involves this blog.  For more than two years I poured my heart and soul onto these pages.  This was my safe place--the place where my fears found words.  Now, I can't even find the words to write.  My brain stays so tired that I can hardly put a sentence together, much less write a fluent post.  I can't even keep extended eye contact with people when we talk.  Seriously, it's a real issue.  I have a college degree in communications and have lost all ability to carry on conversations.

I know that God chose my family for this battle and He equipped us with all the tools for fighting that we needed during the battlet.  I just wonder when the war ceases.  Because right now it seems like every day is still a struggle.  I didn't mean for this to end up as a pity-party but I needed to be honest.

Ella and Jack continue to thrive and I couldn't love them more.  I am trying to respect Ella's privacy a little more as she is starting to become such a lovely young lady.  We haven't really talked about it but I'm sure she's becoming a little more sensitive to my telling her business all over the internet.  I will just say that she's just a ray of sunshine everyday and so full of life.  She is making all A's and excelling in so many extra curricular things.  She's got one of the lead roles in the church spring musical and she's playing club soccer.


Jack--woah.  What can I say?  This precious boy---he is everything I ever dreamed a little boy would be.  He is wild, adventurous, passionate and super loving.  I get a least 5 million kisses a day.  I absolutely love this child.


Thanks for hanging with our family (and me).  As I am finding out, Lucy's cancer diagnosis is something we all deal with every day.  Some days are good.  Some days are bad.  Some days just suck.  But we keep on moving and fighting.  One day at a time.


2.23.2015

4 years today



4 years ago today.  The diagnosis that rocked her world.  Everything changed in the blink of an eye.  

She's still here.  She's still fighting and kicking cancer's butt.  I am so proud of her and love her with every fiber of my being.  

Will you come celebrated with us?  The 5th Annual Go Lucy Go 5k/10k is April 18th.  Come run, walk, bring a stroller.  Come for the Kids Fun Run, come for the food, come for the party!  Whatever you are looking for this race has got it!  Maybe you just want to the t-shirt and that's cool, too!

Register now (or order a shirt) at www.racesonline.com

This is the race you DO NOT want to miss.  


2.20.2015

Ice Storm 2015


Today is day 9 of Spring Break Part 1.  9 days we've been confined to this house.  Add to that the 1.5 weeks we were here before that with everyone being sick and that makes us being on lockdown for almost 3 weeks.  While I have thoroughly enjoyed being home I would be lying if I said I wasn't ready for everyone, including myself, to get back on a schedule.  Because to be honest, if I don't get out of these stretchy pants, get back to the gym and start another Whole 30 it's not going to be pretty!


Several areas around us have had the luxury of snow.  We, on the other hand, have had nasty, dirty ice.  At least we had one day to play on the ice before it started melting.  









Icy, cold and undesirable weather is supposed to be with us the rest of the weekend but hopefully Monday will bring a new week!