Cover Model Elizabeth Ketcher Redefines Awareness

Check out our friend Emily, she's helping redefine Spina Bifida by being a first ever cover girl!

The Washington Post wrote about it, here

Check out her Mother Elizabeth (now you know where Emily gets her great looks from!:) as she shares in this Parents Magazine interview, here  and video interview here

We bought our copy yesterday!  It was the LAST one at HEB and there was a crease in the cover... but I bought it anyway!!! We are so proud of Emily!

"Oh, Mom.  What's this?"

"OH!  I know her!!! She's a SB friend!" 

"Gimmi that magazine Momma, I need to read it!"

Some things that come with Spina Bifida, like community and friendships and beautiful awareness. are the undeniable blessings!  Thankful for the many friendships and beautiful parents and children I've come to know and love on this journey!

Keep CALM and Happy 2013

My "word" for 2013 is CALM.  I've spent way to many hours letting the anxiety of life rule.  It's time for a season of CALM.  I'm going to rest and trust and lean into enjoying more.  Sometimes over thinking just gives you a headache! 

‘As you walk and eat and travel, be where you are. Otherwise you will miss most of your life.’ ~Buddha

International Standard Version (©2012) You will keep perfectly peaceful the one whose mind remains focused on you, because he remains in you. ◄  Isaiah 26:3  ►

THREE!!!

 Happy Birthday to my favorite oldest son!

Don't ya just LOVE him!!!:)

I Am The Child

I Am The Child 

Author UnknownI am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

Happy Valentines

My baby turned ONE!

Happy Birthday Brother!

YOU TUBE

We made a YouTUBE channel.

Having two children is like 100% more than having one child.... go figure:)
I admit, I've been shamefully behind in my blogging.  I'm not even going to try and play catch-up.  Sorry:)
I've been much better about posting videos and photos on facebook.  I think I'll do good on YouTube too.
I'm currently loading up older videos from my phone, and the newest ones are only days old.
FOLLOW US: HERE

Choosing

Sometimes I stumble upon a quote that really speaks to me.  I found this sweet gem years ago, around Christmas 2007.  My life was crazy, there were a lot of loose ends and I was feeling a lot like I do now... unsettled.  I was in a drought and this quote was like a drop of water.  I wrote it on an a scrap of paper, and carried it home with me.  It sat on my side table and I read it often.  I had prayed for peace and clarity and I think God sent me a little reminder.  A reminder to be open... to CHOOSE to LIVE!  And I did, soon after we made the choice to open our hearts to children!:)  2008 was a year of celebration!  It hasn't been easy since, but it has been rewarding.  We've learned a lot, loved a lot, welcomed another sweet soul into our lives and grown closer as a family.  It's been tough though and I feel the unsettledness setting in.  God reminded me of my little quote, but for the life of me I couldn't remember where I put it... we've moved since then people:)  Today though, I was putting some things on the shelf in my closet, and there it was... my words, my quote, my reminder:)
Here it is...
"Every moment of every day, CHOOSE.
Choose to do the right thing, the tough thing -not the familiar easy thing.
Choose the way of the warrior or the way of the coward.
Make your choice out of love instead of fear.
Choose from the heart.
Choose to live fully, not to sleepwalk thorough your life.
Choose to respond with the way you really feel, not the way you're supposed to feel.
Choose the mineral water over the soda;
Choose the lemon and olive oil over the blue cheese;
Choose the walk in the park over the ride to the mall.
Choose simplicity over extravagance.
Choose conversation over the television.
Choose to talk things out rather than stew in your anger overnight.
Choose compassion and generosity.
Choose to smile instead of frown.
Make your own choices in your own time and choose to stick with them."
-Rachel Snyder

Revisiting REDEFINING

There's a lot of talk about Spina Bifida recently.  Those "awesome" commercials about SSRI's and birth defects are making Spina Bifida a house-hold name.  Honestly, if there is a link, I hope they hold those who had a part in it responsible.  How dare anyone knowingly put any child in harms way!
That being said... NO CHILD IS EVER A MISTAKE.  My Jonathan and the 100's of his little friends and millions others who were born with Spina Bifida, are not "preventable birth-defected children".  Most of us took our folic acid and did EVERYTHING we knew to do to have healthy pregnancies.  There is NO sure fire way to EVER conceive a perfectly healthy child.   So, we do and did the next best thing, we loved our children anyway, we love them a little more each day and we realize that we are BLESSED!
Here are a few links to some very AMAZING blogs on the topic this week:)

From Misty of 

Broken Body/Whole Spirit: But Didn’t You Take Your Folic Acid?

From Jill of

:Awareness

and lastly, I'd like to share a blog by my Mom friend Jamie of 

A WORTHY JOURNEY:  Sometimes-Doctors-Are-Wrong

boy-are-they:)

Fun With Photo Booth

Happy Fathers Day 2011

The boys and I would like to give a shout out to the best Daddy around!

You're everything a Dad should be, smart, loving, kind, caring, responsible, dependable and FUN!!

You make Daddy Doo-ty look Gooooooood!

And We think YOU ROCK!!

WANTING

Do you try harder when you feel like you've lost everything?
I have been reading the blogs of some moms outside of the Spina Bifida world.  Mom's who have children with special needs not completely unlike Jonathan's needs.  However they have one HUGE difference... their children were NOT born this way.  Each of them suffered some illness or trauma that impacted their little bodies and brains in such a way that they can no longer do things that they were born able to do.  Something stands out about these moms (families), something a little different than what I've seen with the moms in my "community".  They travel and spend money, lots and lots of money.  They are trying EVERYTHING and having some amazing success to show for it.  I'm learning about all sorts of new therapies and treatments, devices and equipment... there are things out there that I never knew existed!  In fact, I've spent over 10K (in my head) just thinking of the things I want to do/get/try for Jonathan right now.  I WANT THAT TOO!!!
I WANT to to try those things, I WANT, WANT, WANT for my child and children like my child!  Some days, it makes me crabby and bitter just thinking about it because I have no way to get it.  I have never in my life struggled with wanting something I don't have.  I'm not into shoes, clothes, cars, fancy things.  I'm just not.  Before Jonathan I was happy in our little tiny cottage of a house, now I WANT a wheelchair friendly one story.  Before, I didn't care about my car, now I WANT a van so we can have more room for equipment and kids.  I WANT to try new therapies, to have the best equipment and have the latest technology for my son.  And, I can't afford most of it.  I'd go broke trying to attain it.  So I pout, and I'm frustrated and I'm pretty sure I'm sinning in my attitude and I make myself CRAZY.  I'm blessed beyond measure, yet I still WANT.  I WANT for myself and others in the same situation.  We have it better than SO many, my son's have a lifestyle and a quality of life better than so many but still I WANT.
And I struggle... why is it, in our community we aren't encouraged to think outside of the box and try new things?  Why doesn't insurance cover new therapies?  Is it because our children were "born this way" so, "it is what it is", and nothing can change it?  Is it because we already have a "set treatment plan" for children with Spina Bifida, a go-to-guide?  Is it because for us, our children never "broke" so we see no need to "fix" them?  Honestly, we feel blessed just to have them.  We take what we have been given and roll with it (HA, a wheelchair joke!:)  We do the therapy, yes.  We go to the Dr's visits, yes.  We get the bracing and equipment and supplies and we follow the beaten path of those who have gone before us.  There is nothing in our community to "fix" Spina Bifida.  Our children either can or they can't, they will or they won't and it's all a wait and see.  In some ways the black and white of it all is comforting in others, frustrating beyond words!
Here is my dilemma... just because it's not the USUAL method of treatment, just because our Dr's have never heard of it, just because it may not work... do we not try?  Where do you draw the line between trying new things and spending buckets of money, in hopes of a better life for your child, and being a good steward of your money by not being careless.  If insurance doesn't cover it, do you raise money... do you ask others to join you on a journey of "what if"?  Because... WHAT IF... what if it DOES work, what if it's not all "snake oil" and what if it DOES make your child's life easier and more "normal"?  What if we are carving new and better paths for the future generations?  Can you really put a price tag on that?
I DON'T KNOW!  And that's my dilemma.

(But it does help to vent:) it gives me perspective and reminds me to CLAIM and CLING to God's Word.
<< Ephesians 3:20 >>Glory belongs to God, whose power is at work in us. By this power he can do infinitely more than we can ask or imagine.
GOD'S WORD® Translation (©1995)

My 10K list:
Childrite therapy seat $150 (on order will be used to make the Zac Chair)
Charley Wrap $500 (on order)
ZipZac WheelChair $800 (on order, Kent and his team are custom making Jonathan a bigger version with the Childrite seat)
Magnetic Therapy 200 hours $8000

Moving Forward

This is what Jonathan has discovered... movement get's you places!  I have been collecting plastic containers and waiting for this day to come!

Oh, yeah.. that's right!  Today my son learned to ARMY CRAWL!!!
You should try it!  It's harder than it looks:)
I couldn't be more proud!




Here is a video of J's first time army crawling!  He surprised us today when reaching for a toy he pulled forward!!! We've been using the scooter a lot and he learned to pull forward on that just a week or so ago.  Now that he has the mechanics down, he can do it without wheels!!! He just keeps getting stronger and doing new things!!!

Good Morning Brother!

I love these sweet boys, and I love that they love each other! I pray they will become the best of friends!

Mattress "Tweet"

"Shake n Bake.... and I TOTALLY helped! #gotyourback #i*support*co-sleeping"- <3 Matty the Mattress

Hospital Day 6...Last day?

Well, it looks like Mr. RSV will get to come home today.  He's eating and drinking well.  His fever is lower and controlled by pain meds.  He's holding his oxygen levels while awake and his energy is slowly returning.  The Dr's are encouraged and believe we can safely continue nursing him back to health here at home.  Please continue to keep us in our prayers as we carefully balance care for Jonathan and Owen.  Jonathan still has a low fever with cough and stuffiness and will continue to be contagious until all symptoms pass.   Please pray he is totally healed quickly and that no long term effects with come from the stress to his respiratory system.  We are thankful for how quickly he has gotten better and continue to claim complete healing.

Here is a video of a happy boy this morning:)  Daddy has been singing him "his" song since he was born.  Now we all sing it and it's always good for a grin:)  "Jon William Jinglehimer Dill"

Hospital Day 4 in Pictures

Friday

After a good nights rest you gotta wake up and check your email and update facebook.

A wholesome breakfast.  Cheerios are a FAVORITE!!

After playing a little, and a blood draw, a much needed nap is in order.

Lot's of smiles after pulling his own IV (stinker!)... now it's MUCh easier to use the ipod!

Aunt Heidi gives a much needed bath.  All that sweating is stinky!

Time for bed.  Aunt Heidi crawls in the crib... He's so cute you can't help wanting to snuggle:)

Good day, Goodnight.

So Sick:(

My little boy is so sick:(
It started on Sunday with a little cough, a rattle and a cough, something I've never heard.  I was worried, wondering about aspiration and when and if that might have happened... That evening Jonathan fussed and fell right asleep when we laid him down for an unscheduled nap at dinner time.  Monday, Valentines was the same, a cough and a sleepy boy.  We figured it was Owens cries that had kept him up.  Monday night he slept hard, but he awoke often battling this cough that sounded worse.  By 6am he was setting his pulse ox off, even on bipap and 2L of oxygen, he was not able to hold his oxygen levels above the mid 80's.  I knew something was very wrong.  I cried, It's so scary when your child has to work hard to do the most simple thing... breath.
I sent Mom , Caleb and my dear sweet son off to the nearest ER... I felt so helpless, home alone learning how to nurse my precious newborn and being able to do absolutely nothing to comfort my oldest son in his suffering.

Long story short:
Tuesday: ER at St Lukes... they suctioned him and that helped a lot.  They cultured the snot and it came back positive for RSV.  In the meantime fever set in 103.  Dr's told us it would get worse before it got better and transported him downtown to Texas Childrens.  He had a long restless night filled with fever, breathing treatments and exhausted sleep.  Caleb and Mom stayed with him and I cried at home.  Heidi and Theo arrived from MT and their presence with me at home was a God send.  They helped me with Owen and gave me the encouragement to deal with being away from Jonathan.

Wednesday:  My son spent his second birthday in the hospital feeling like poo!  The hospital put a banner on his door and brought him balloons, a toy and a cake.  He enjoyed a few taste of cake and his new toy, but slept and coughed and had waves of fever as his little body did battle on his behalf.  Pop came to relieve Mom and stayed with Caleb and Jonathan through the night.  My heart broke that I couldn't be with him on his special day, I'm so glad he had his daddy to snuggle him.

Thursday: More of the same, Caleb said Jonathan was able to eat some breakfast and drink some.  However he gets pooped quickly and it will probably be a few more days before he is well enough to come home.  After resting and visiting and spending the night with us, Mom returned to the hospital and relieved Caleb.  My dear sweet husband is home now resting.  He has stepped up and been such an amazing Dad, advocating and fighting to get Jonathan the best care possible.  He's never had to do this alone, without me by his side, and I am so proud of him.  I know in a million years I couldn't have made a better choice in a father for our children.  Tonight Mom and Pop will stay with my boy.  I am so blessed to have a family so close and praying friends who provide for our needs physical and spiritual.  God is mighty and to be PRAISED and although we are not there yet, we claim His healing for our son, we thank Him for his provision and guidance this far and we look forward to the blessings he has in store for our future!

to be continued...

Happy 2nd BIRTHDAY Sweet Boy!

Jonathan,
Happy Birthday Sweet Boy!  I can't believe you have been blessing my world for 2 whole years now.  Your Daddy and I look at you and can't believe how blessed we are.  It nearly brings me to tears to know God has trusted your sweet little soul for us to raise.  I never knew what it was to truly love so unconditionally until you. You encourage and strengthen me daily.  I want to do better and be more because you so easily are better and do more daily.  I am so proud of you and your sweet spirit.
You work so hard in therapy, you find "aww" and humor in EVERYTHING.  You most especially love pushing buttons.  You can't say a word but you have figured out how to unlock both our ipods and our cell phones, no button is safe with you around.  You so are smart, I see the little wheels in your brain figuring things out behind your beautiful blue eyes!  You light up when you hear your favorite song or TV jingle, Caleb and I just watch an wait for that big grin and you deliver every, single, time!!
You have been a big brother for 6 whole days and you love smiling at Owen and petting his hair.  His LOUD cries don't even bother you... yet.  Your patience is inspiring.
I'm so glad God has given us you.  We pray we will do right by God and by you and that you will continue to be blessed as you bless so many others.  We are thankful for the last 2 years and so excited for the years, days and moments to come.

Owen has ARRIVED!

Beautiful 10# baby boy born on the 10th of Feb.  You made us wait nearly 2 extra weeks but you are so worth it!! We scheduled your birth but you decided that although the date was great, you wanted to meet us earlier in the day!  After breaking your own water at 3 am and giving me a few hours of ineffective contractions:)  The Dr's delivered you via csection at exactly 7am!
We drove 45 min to the hospital, your sleepy brother in tow and your Gammi and Poppi following in their car.  It was a quick check in and before we knew it you were here and in your Dads proud arms!

Welcome to our family.  We are so excited for all the future holds!