11.26.2014

Thankful

This year we have so very much to be thankful for...
I'm thankful especially for our recent once in a lifetime (many lifetimes) trip - (I'm working on assembling my thoughts and emotions and pictures to blog about it.) 
I'm thankful for new friendships all over the USA and for powerful, precious connections


I'm thankful for grandparents and greats.
I'm thankful for good friends that feel like family and for time well spent this year with them.

I'm thankful for our health.  
I'm thankful for good, wise doctors. 
I'm thankful for proactive decisions.
I'm thankful for kiddos who have exceeded expectations and goals and who amaze us daily.
I had a health scare this year and am thankful to not be battling that today.  
I am thankful for modern medicine and technology.
I am thankful to live in a time and place that celebrates kids with differences.
I am thankful for their schools and teachers and friends.
I am forever thankful to be their mom.
I am thankful for our home and our yard and our neighbors.  
I am thankful for our adventures we went on this summer and how it changed us a family.
I am thankful for Jesus and His faithful pursuit of us.
I am thankful for the relationship and friendship I see developing between Will & Ellie.
(look at this precious note I found on her bed last week that Will wrote her!)



I love how we focus on gratitude for Thanksgiving.  I want gratitude to be my legacy.  I want to be a thankful person year round and to raise thankful children.

May your day be filled with gratitude and be surrounded by those you love.

Happy Thanksgiving 2014

(The kids insisted that this is how "Indians & Pilgrims" would have posed for pictures.  I didn't try arguing or pointing out that there were no cameras at Plymouth Rock.) 

11.10.2014

Not Our Usual Monday...

Today was not the usual Monday at all!!
Today included meeting the First Lady, meeting and petting the First Dogs (there's 2!) (did everyone know this but me??), meetin Miss America, attending a DVD premier, attending a cartoon premier, spending an amazing afternoon with our US Representative (Louie Gohmert), touring Capitol Hill and learning some awesome history, going on an adventure in he car of our congressman who drove us to our hotel, and meeting Josh Sundquist! Some of us also saw Dorothy's red slippers!
We were gone from our hotel by 9am and returned around 9 pm! We are exhausted! But so happy and humbled.
Will is making some great friends and loving this experience.
I'm having a hard time posting clear pictures here but I joined this little thing called "FaceBook" this week from the hotel (because I learned we needed to be doing some social media networking:) I'm a little behind the times, it seems.)  Great fun pictures on Facebook- follow this link:
https://www.facebook.com/permalink.php?story_fbid=361954690634899&id=100004611137542

I can't wait to find time and a computer and really share what this experience has meant for us and some of the things Will has expressed- it's been powerful.
For now- off to bed! Big day tomorrow!

11.07.2014

Will's CMNH TX Champion Send Off Celebration




And We Are Off!!!!

This morning, Will's school along with our local CMNH, Dairy Queen (a corporate sponsor of CMNH,) & CBS threw an AMAZING send off celebration for Will as the Texas Champion ambassador!

I apologize for video shakiness- I cried nearly the whole time!!
His principal wrote the story (that's her in the cowboy hat) and together with our local CMNH director, Robin, created an incredibly humbling, overwhelming "pep rally."
They brought in the cheerleaders, the drum corp, and even the giant DQ blizzard!

We had lots of friends and family show up to surprise Will- when he saw his best friends there his whole face lit up!
Will loved "Dr Paws & Hoopty" from VBS last summer and asked them to attend. But he was very surprised when they came in character and partied in character the whole time- fake British accents and silly dancing! They were amazing! 


His giant Texas cowboy hat- which he will wear with pride!





His best friend surprised him!


So did his tennis coach!
Neighbors and sweet friends
Crazy Dr Paws & Hoopty
Nurses from the CMNH funded special needs clinic 
CBS anchorwoman Dana graciously emceed

Ya'll.
(I couldn't help myself there.)
Will is loved and celebrated and I can't tell you how good it is for my heart to be representing this organization that celebrates all kids! 

Goodness I wish I could sometimes go back 7 years ago and tell that new scared mommy that it is going to be so so good.


Hope to blog from DC and Orlando this week! 
We are Outta Here!!!!

(PS- I read from past champions' moms that sometimes it's depressing to come home after ge trip and not have a daily party or people clap everyone you enter the room. :) will & Ellie are going to love this!)


PPS- will loves reading about the champions in the book they mailed him. Each child has their story and picture in it. Last night, he was reading and I went in when he got to TX in case he had any questions. He knows he has differences of course and we've had plenty of talks and doctors and it's not a secret (obvs) but my heart didn't know how it might be for him to read about his story instead of just casual conversation.
Well.
He read it and quietly closed the book and looked down shaking his head with his eyes closed. I braced myself.
My tears were near the edge.
He shook his head and said "doctors,doctors, doctors."
Then he hopped out of bed and said, "time me, mom" and took off running around the house.
He came back 45 sec later and said he proved those who never believed he would jump or run wrong.
:)
(The last line in his story says "despite doctors not knowing if will could run or jump, he continues to defy the odds!)
I asked how he felt about the rest of the story and he said matter of factly, "yep- they got my differences right."
He was totally happy and proud he could defy odds.

PPPS- I have got to pack my carryon and load the car!

11.06.2014

It's Almost Time!!!

So we have had a wild and crazy week!
I coordinated the Veteran's Day program for Will's school. It went great and was such an honor to have a role in serving our veterans and school and community. It was a big job and I am so thankful for an amazing committee and development office who  helped me figure this out!

The kids thankfully entertained themselves with books in the school office while Mommy worked this week on Veterans' Day!

A few hours after the school program, Will was in a play at the community theater! He had the title role in "The Adventures of Captain Potato!" I used my sewing machine and attempted to use my poor sewing skills to sew a couple of burlap potato costumes. Then I stuffed them.
I think this Captain Potato is cute enough to eat!
Will did great- I'm so proud of his ability to memorize lines and get in front of an audience. He really loves acting!

Captain Potato and his side kick, Spud.

Finally- we are leaving TOMORROW for Will's big Children's Miracle Network Hospital's Champion Ambassador Tour!!
I am packing like a madwoman for two vastly different climates- DC (where "Arctic chill" is predicted!) And Orlando!
We get to meet the First Lady, our Congressmen, Lady Antebellum, & Josh Sundquist!
The fun starts early tomorrow with a huge send off celebration. I am so excited and humbled! More to come!!! (Now I have got to pack!!)



10.29.2014

And We're Back!



A Letter to Myself - 7 Years Ago-

Dear Me,

I see you - hunched over your computer in the middle of the night in the dark corner of the house.  I see you googling and "researching" and reaching out.  I see you desperate for anyone who has walked this road before to come alongside you and reassure you that you will survive.  I see your tears and your smiles and your fears as you place your heart  - your child -  out there for the world to see.  
7 years ago, you began to write this blog in large part because you don't scrapbook and this seemed like a happy medium to record your family's history without having to scrapbook it all.  
(Seriously -it's time to print this out.  Then you can call the printed out version a "scrapbook.")

6.5 years ago, you learned your child would be born with limb differences and the blog suddenly became a community.  It became your therapist - for free.  It became your place of processing and venting and a safe place because you could get all those feelings out and never even hit publish if it was too raw.  It became a way to guard your heart and emotions - you could type out here the latest doctor update or prognosis and then family and friends could see it without you having to go through the emotional roller coaster of repeating the news over and over and over again.  Later, it would become your cheat sheet - your way to share photos and stories with family in one easy format.  It's like letter writing without the whole letter writing part.  


You needed the readers - those who emailed you or called you or commented.  You found you have great joy from walking alongside other moms figuring out how to navigate this world of parenting kids with differences.  What an honor to have prayed for so many babies around this nation and to have talked to and cried with their mommies.  
You grew greatly from those who challenged you in the comments and made you stand firm in convictions or possibly rethink your position.  You needed the affirmation from those who assured you it would be ok.  And you craved the companionship from other mamas.  How in the world did moms for thousands of years who found themselves in unique parenting situations of kids with differences survive the loneliness?  How grateful I am to have had this community - the internet has allowed me to know mamas parenting kids like mine all over the world. 
For most of the last 7 years, you needed this blog.  You needed the outlet to process all the feelings.  You needed the format to share news or ask for prayers without being on the phone or crowding people's email inboxes.  You needed the community.

Oh dear one, 
can I share this with you? 

I don't think you need this blog quite the same way anymore.

You know that big fear you had from the very beginning - right about the time your baby was diagnosed?  The one about what your new "normal" would look like?

Let me tell you - your life looks a lot like any other mama's parenting 2 kids.  You drive a lot.  They go to school and your son, the one missing his fingers, writes the most beautiful cursive.  He reads books on a fifth grade level.  He devours books, really.  He still cuddles you in the same position he has for 7 years every single morning.  He plays tennis.  He plays it well.  He has friends.  Wonderful, compassionate, loving, sensitive, funny, typical little boy friends.  He asks great questions.  He's the lead role in a play this fall.  He plays pretend and wears capes and carries a sword or nerf gun at all times.   He doesn't care or know that you took the epidural.  (Quit beating yourself up over that, already.  Good grief.  It doesn't lessen the birth experience and you know what people remember of your birth experience of a child with significant limb differences?  They remember the joy and laughter coming from your room.  Thanks be to Jesus and the anesthesiologist who brought you the epidural.  You know what else?  They don't give mommies epidurals to numb the heart and mind when you hand over your child for surgery and you've done that 9 times so far - totally "natural" & no breathing plans or epidurals.   So there.)
(Note to children's hospitals - mommies need "silly juice" too to get through surgery hand off.)


Oh that boy of yours, mostly his life is pretty "normal."  Sure, he takes a daily shot and he sees lots of specialists and he has to be really resourceful and creative to figure things out but somehow, that doesn't seem as scary or significant to you as it once did.   In fact, it feels normal and right and good.
Here's a little fun glimpse into your future - that boy of yours will one day start giving you insight into the man he is becoming and watch out!  Those moments - they are holy moments.  God is doing something big with him and wow - I don't want to spoil it for you yet but you are going to have some powerful glimpses of the man he is becoming.

And that daughter?  The one you were told was probably going to die?  The one who shouldn't have survived the pregnancy much less be 4?  The one you so desperately depended on the blog community because you couldn't talk to one more person and share your heart quite like you could on here?



She's just lovely.  She's graceful and hilarious.  She dances and twirls and sings loudly.  She's a little mommy - strangers even notice her nurturing spirit all the time.  The girl nurtures her babies and has been known to mother leaves and sticks and animals when no babies are around.  Her heart is amazing.
She is very sensitive and compassionate.  She laughs loudly and cuddles nightly. She's your shadow and though she is your daughter, I have great hope she will become your best friend.  She's a joy to be around and fun and interesting.   This is good because you will spend a great many hours together every day.

Your need for this blog will change.   The emotions still come sometimes and you certainly have hard things but often those are more like hard hours instead of whole entire "pit days."  The hard things too are changing - they are more private.  You can't always share those with the world because your children will get to the point where they need hard things to stay between them and their mama.  They don't understand the internet (except Amazon - they understand Amazon and Apple from infancy, I'm afraid.) Something in your mama's heart just knows that now you keep quiet.  Now, you keep these stories and heartaches to yourself.  Maybe someday you will share them and maybe you won't but you won't need the same sort of processing format like you once did.

Let me tell you this, Me from 7 years ago - 
it gets better and easier and it's good.  It is so so good.  Your life is far from "normal" but it is better than you ever would have imagined.  Hang in there.  You are doing great.

-The Older Me 

(So many of you have been so faithful to call/text/email and to check on us.  I never ever ever anticipated taking such a long blog break!  We went on vacation (more to come on our adventure) and then we came home and I meant to blog but it was summer and there was swimming to be done and naps to take with my boy who I knew was close to dropping his nap and there was grass to lay on and books to read - so many books.  I started playing more tennis after the kids were in bed and my husband and I FINALLY found a tv show we actually liked to watch together.   And I read and read and read.  Really, I went weeks without even looking at an actual computer.  Blogging just kind of took a back seat - or perhaps got lost in the trunk of my car where frankly, anything can get lost.  A few days ago, I found a missing quart of Almond milk in the trunk of my car.  Sadly, I never noticed the smell... just found it while looking in the trunk.
But I've missed writing here.  I've missed processing although I'm still trying to figure out how to do that as my kids get older and our hard things are a little more private and personal - or at least I'm not sure it's something they would want to read online when they are older.  So I may be more cautious going forward in that.  
I still haven't figured out the timing of when to actually open the computer and blog.  When do you bloggers out there find the time?  For the record, we aren't morning people so that's out.  With a 7 year old now in full time school, my long quiet afternoons of everyone napping are over.  I haven't quite figured out when to be on the computer.  
I've missed sharing our stories and posting stories.  I always do that thinking of those moms who may be just beginning on this road of parenting a child with differences - it is my sincere hope and prayer that you may see our pictures or read our stories and that you will be filled with hope.  I pray that seeing my child swim or run or go to school will reassure you with what I so desperately needed to know back when we first got diagnoses in 2007 - this will be good.  You will have a good, joyful life.  Your new normal will be great.  You will laugh and smile and your kids will amaze you and drive you crazy and change you and grow you and complete you.   

So I'm back.  I may be slow to return but I'm here.  I'm figuring out what blogging will look like for me and how I can best tell our story.  We are well.  Thank you to those of you who have reached out - even from as far away as Israel this week!!  Coming soon - a summer recap, a fall recap (how did I get this far behind?!?), that moment when I glimpsed the sort of man my boy is becoming, a first pair of custom shoes!!!, and more!

Thank you for reading again -
I so appreciate you and the soft place you have given me to land-
Love, K

5.14.2014

Happy Will Butts Day! Also - meet the CMN Texas Ambassador!

I have waited so long to finally blog about this and am so excited to share some big news...
Will has been announced as the official Texas Ambassador Champion for Children's Miracle Network Hospitals!!!

It's huge! It's surreal & exciting & so very humbling... & a bit overwhelming!

We were shocked when the announcement was made in January.  We didn't even know such a program existed.  Will was nominated without our knowledge and even our family photographer (& dear friend, Olivia) kept it a secret when she submitted photos of Will.  My mom kept it a secret when she filled in gaps on the form & submitted an essay... and the local CMN director kept it a secret that he was nominated!
In the 27 years our area has been a part of Children's Miracle Network Hospitals, Will is the FIRST kiddo ever chosen from this area!



So what is a Children's Miracle Network Hospital Champion Ambassador?
He's a spokesperson.  He is chosen for "displaying courage in the face of unique medical circumstances." 
When I read that I just sat and cried.  Courage & Joshua 1:9 have been our theme for the last year as Will has faced some hard things.  To honor him for showing courage just blew me away. 
He has no idea how brave he is daily.
Will will have opportunities to tell others about the work CMN Hospitals do every day across our country.  
(Did you know 62 children A MINUTE access a CMN service?)
He will get to hopefully visit some CMN Hospitals across Texas to encourage other kiddos and families and doctors.
Today, I was asked in a press conference what my hope would be for people meeting Will in this role.  
I answered that Will breaks barriers every day.  When people put up walls and try to stigimitize people with limb differences or disabilities, Will climbs over the walls or runs around them or tunnels under them to make a friend.
My hope is that in this role, he would have a bigger platform to continue breaking down barriers.  I hope it will enable people to see him as just a typical kiddo and that in seeing him as a kid - instead of a diagnosis- they would tear down their own barriers they may have erected about people with differences.  I hope people's eyes will be opened to seeing that there is great quality of life and celebration to living a life with differences.  I hope people will see a kid who loves life and who can do all kinds of typical kid things and a family who loves their kid.  I hope they will see beyond differences to see that we are a lot more alike than we are different.
When that same question was posed to Will, he said he would be able to "encourage kids who struggle."

Today, at a press conference (I know - that seems funny in relation to a 6 year old!), the Mayor declared it officially "Will Butts Day!"
Will asked me if he could do anything he wanted on his "holiday."  I told him no.
I told him I didn't know anyone else with their own day and then he reminded me that Jesus has a day too  - Christmas!
That gave me a good laugh.  

Will's teacher, his school nurse, & the assistant principal all came to show him love and support and celebrate Will at the press conference.
Wow - it meant so much to me.  In just 9 months I have come to LOVE the people that pour into kids every day at his school.  

Ready for the press conference to begin.  (Will & Ellie did ok throughout - they appeared a little bored at times but thankfully managed to stay quiet and in their chairs.)

Cookie & Lovie & Mimi all came!

Will & Mrs. Harden - his kindergarten teacher

Will & Rachel & Molly - nurses at the local Special Needs Clinic (completely funded by CMN and one of the few existing in the country!  They serve over 500 kids (& their moms and dads!)

Will gave several tv interviews and did some radio recordings.
(If you are local, he'll be on the news tonight!  If you live elsewhere in TX, CBS will be doing some sort of state wide story at some point in the future I think.)

Sweet friends from school came to support Will!

All of the neighbor kiddos he plays with daily came too!


Guess what else a CMN Hospitals Champion Ambassador gets to do?!?!?!

Travel to Washington DC in the fall and meet his Congressman, hang a wreath on the Tomb of the Unknown Soldier, participate in various activities around the Capitol, &

MEET THE PRESIDENT OF THE UNITED STATES!!!!!

I am so excited I can hardly stand it!
(As a former US History teacher I'm already drilling Will on Presidents, US history facts, & pets owned by each President.  Did you know there have been hippos, lions, bears, tigers, & alligators in the White House!?!)
Will is really hoping he can meet Bo - the First Dog.
I however, am so humbled that my barrier breaking boy will have an opportunity to shake hands and visit with the first African American President - a man who broke a huge barrier. 
The significance is not lost on me.
Someday, I think that will matter to Will too.

As if that's not enough for the WOW...

after hanging out in Washington and getting to know kids from each state (plus one from Puerto Rico & one from DC,)
we will fly on a chartered jet all together to DISNEY WORLD!!!
Apparently I need to subscribe to People magazine to catch up on pop culture because from what I'm told, there will be celebrities there CELEBRATING these champion kids are various ceremonies at Disney World!!!
(So to recap - in preparation, we are studying US History facts & People magazine.)

Does it get any more magical than this?!?!

I am so so so excited for Will to have these opportunities and can't wait to share more with you as we learn more about what being a TX Ambassador Champion means.

In the meantime - want to melt your heart?
Check out these two brief highlight videos for the 2012 & 2013 champions:





I cry every time I watch these videos - I can't wait to be a part of something that celebrates kids who show courage in the face of unique medical circumstances and an organization that fights to save lives and better lives and normalize lives for kiddos every single day.

5.08.2014

Spring 2014 (Recap)

Summer is thankfully only a short and sweet 5 days away for this family.  As I helped Will get ready for school this morning (still way too early!)  we daydreamed together about al the things we can't wait to do in the summer:
swimming! sleeping! Reading!  cartoons!  And according to Will - sleeping in for 50 hours!
(Amen!) 
(I have loved his school and his teacher but I am definitely a summer mom & am so ready to have him back home with me!  My countdown may be more about me than him!)

So with summer rapidly approaching, here's a recap of our spring.
It's been fun & busy and wonderful (mostly.)
So with no further ado...
I present the longest post ever.
For Spring Break, the kids & I road tripped to see some of our best friends on the planet in Central TX.
Pretty much it was perfect - 
Will & Mason are the same age as are their little sisters.

The kids were instant best friends

as were the girls

Both Hailey & Ellie spend most of their time being mommies...

More to come on Will's reading but he & Mason enjoyed some good books together

Sweet friends having a slumber party (this didn't last all night)

(neither did this)


Ellie plays doctor all the time.  She loves to give check ups.

Not bad for two dislocated shoulders!

The crazy Waco gorilla - we took a walk one evening to show this to my kids.

Make up time

Mason introduced Will to the joy of creating things from paper.  The boys made paper ipads and even paper plugs for their ipads and then they spent hours playing pretend paper ipads.
This makes my heart smile.
Since returning home, Will has continued to make paper objects of all kinds.

Being with the T Family felt like home to me.  This may be because I spent more meals and hours hanging out in their home while R was in grad school than I spent in my own home I think!




Will was in his second play, "The Dragon of Krakow."
He played "elder #1."  He informed me he needed a beard, a cane, & glasses for his costume.  When I asked him why, he told me he was an "elder" and that means he is supposed to look old!
Of course!

His sweet teacher came to his performance.



The elder with his grandparents

Ellie is getting more and more into dress up too.
Dorothy is one of her favorites



 
We saw another musical in Dallas this spring with Cookie & Lovie - Wizard of Oz!
It was fantastic and we all loved it!

One Friday, Will went with his class to a local field where they met their  8th grade buddies for a kite day & picnic.
He had a blast!


The little sisters had fun watching the kites




For Christmas I really wanted a wooden swing...
& I got it!  
It's one of my favorite gifts ever as there's almost always a kid out swinging now in my front yard - sometimes it's even my own kid.


I've caught neighbor kiddos quietly swinging or loudly singing to themselves and it just makes my heart so happy to look out and see someone swinging.  Already, the grass has been worn out beneath it and I just love that.  Kids belong on swings.
I confess that I often go out late at night and swing under the stars.  It totally relaxes me and makes me feel small to stare at the stars from my swing.

We've enjoyed some recent long walks in our neighborhood and Will has been working hard on mastering bike riding - he's doing great!
Ellie does great too walking and went over 2 miles one day!

Ellie had her little dance class spring show off.  I channeled my creative side (had to dig deep) and made all the girls matching tutus.




Ellie and her favorite dance teacher, Mrs. Jeanne


She got to dance with her daddy at the spring show!  It was precious

After the dance show, Ellie and I headed to the make up store as I needed a few things...
I turned around and discovered that she had found the lipstick.
She doesn't do subtle.

Being a mommy can wear a girl out - Ellie pretend co sleeping with all her babies.

Will has started tennis again and loves it.  He practices in the yard almost daily and always enjoys his lesson.
I joined a tennis team and league this spring too & have LOVED learning the sport and playing so much.  It's the only time where I truly just turn off my brain to every thing except playing tennis.  I can't  think of errands or grocery lists or make phone calls or check email or worry about anyone.  I get to be outside for a few hours, laugh with friends, exercise, and think of nothing except the sport and the game.
It's amazingly refreshing.
I lost my first match but won my second and it is just a blast. 
(Especially winning.  That was more fun.)
(Will made me a pipecleaner ball for good luck which I wore attached to my shoe for my second match.  I think that was what did it.   He has since begun making them for our whole team.)





A few days after hand camp (that gets its own post soon), Honey & G-Dad came to town to take care of the kids & we headed to VA for a very special wedding.
In between wedding events, we managed to explore Richmond, VA with friends.
I love history & Richmond has it in abundance.

Carolyn & I rocked on the groom's 200 year old porch.  

The church where Patrick Henry gave his famous "Give me liberty or give me death" speech.  The grave markers here were fascinating.

With dear friends at the wedding

I've known Michael since before he was born - he's like a little brother to me & I loved being there to see him get married!

The dad of the groom & R

Will & I 



My groom & I

The weekend's groom & I


Whew!
And that is it (almost) for Spring 2014 in a nutshell.
Summer Here We Come!


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