12.12

{best buddies}

Happy Halloween

{my little pumpkins with a giant pumpkin}

___{fill in the blank}____ Awareness Month

You need not look too far to notice troubling situations and physical suffering.  

destruction

inequality

homelessness

poverty

orphans

widows

sickness

…

I always thought I was aware,

until

one January when I became aware…

…Kevin and I would welcome our 4^th little love in October.  

one May when I became aware…

…an ultrasound is about far more than finding out the baby’s gender.

…how ridiculous it sounds to say, "I just want a healthy baby" (so, what will you think if you don't have a healthy baby?).

…every one of us is fearfully. exquisitely. wonderfully. Made.

…in our personal heart break it may take some time before we are willing to let others in to help hold the pieces.

 

one September when I became aware…

… behind every diagnosis is a face, a name, and a beautiful soul.

… the NICU is full of families who are hurting - families whose pregnancies didn’t end the way they played out in their ideal plans and human dreams.

…it’s not just the NICU, there are floors and floors of full rooms in the same hospital.

…of patience necessary in affliction, joy in trial, and hope.

one October when I became aware…

…even after our lives returned home, together, a piece of our hearts would remain with all of the babies, and their families, who still long for healing.

the 2 years since then, when I continue to be aware…

…every person carries their own unique needs both physical and emotional.

… turning the calendar will always remind me of the experiences that sparked my fire.  This month - devoted to awareness of bullying, breast cancer, domestic violence, earthquake victims, down syndrome, __{fill in your blank}__, and Spina Bifida - will always fuel my desire to do something; to encourage other families who may just be starting out on a journey similar to our own.

It is now I feel as if I understand what it means to be aware and why it is so critical.

Awareness motivates us to help others, 

starts a conversation,

encourages community,

breaks down boundaries,

builds determination,

changes attitudes and misconceptions,

teaches us to look into the eyes of all the broken hearted, 

calls us to do more than recognize and sympathize.

Awareness inspires empathy and action. 

Birthday Book

It is a tradition in our family for each child to receive a book of special pictures from the previous year on their birthday.  Typically the book makes a surprise appearance on the celebration shelf sometime before the big day and the birthday boy or girl takes note, sneaks a peek, and sets it back on display.  Last year Gabe was too little to care much about flipping through the pages of his baby year book.  However, this year we wrapped his book to give to him and after he opened it there wasn't a single other present that grabbed his attention.  As he first flipped through the pages he looked quite concerned about how familiar the main character looked.   

"That Gabika?"

"That Gabika!"

Once he figured it out he carefully looked through each page with a giant smile and animatedly pointed out what he was doing in every picture. 

He sat by each of us while we read the book together.

The pictures in this year's book were arranged around a slightly revised version of the lyrics in the Will.I. Am Sesame Street Song.

 It was so fun to see him enjoy it!  Seriously, it makes the book worth every tedious hour I spent working on the lay out.

A Strolling, Rolling Success

rolling...rolling...rolling...

The 2nd Annual Stroll N' Roll was a wonderful celebration of friendship, support, everyday miracles,  and real life superheros!  The GEMS won the team spirit award with our gem-ified crowns and our streamer-fied wagon {Gavin declared the jeweled ring pops to be especially "spiritual"}. The event raised over $18,600 for the West Michigan Spina Bifida Organization. We are so thankful for the opportunity to be part of this community and to call the other families of the WMSBO our friends.

2day

{birthday boy}

This morning my babe woke up happy, shouted "Morning Mama," climbed out of his bed, walked out of his room to snuggle, asked for pancakes and sausage, and sat in a chair across from me eating his breakfast with a giant smile. "Gabika's berfday Mama?" It is his birthday. It is also so much more than we dared to hope for! I am thankful for the miracles: big, small, and 2!

Wait for it...

Just days from now Gabe will be 2!  We can hardly believe it.

I remember meeting with his neurosurgeon before he was born.  At the time he explained to us our baby would likely need a shunt to help manage his hydrocephalus.  When Gabe was born they decided to hold off on the shunt when doing his initial back closure.  There were many tense days in the hospital where they monitored his head circumference.  Measurements were taken at each feeding to see if there was a significant risk and reason to proceed with the shunt surgery.  After a month in the hospital we were sent home with a tape measure and our adorable little “mega mind” for more monitoring. 

When he saw him for the first time, our thorough pediatrician wrote a pop up note on our electronic file that he would personally like to measure his head each time Gabe was in the office for any reason.  A shunt seemed inevitable. 

We returned to HDV often for ultrasound, CT, and MRI scans of Gabe’s brain to carefully measure the percentage of fluid versus brain growth.  We held our breath.  We prayed for miracles.  With each visit to neuro our Dr. would weigh the pros and cons.  He seemed to wrestle with himself, and the options, just below his breath, in the octave where we could sense the hesitation in his thought process even if we didn’t hear it in his statements.

 “let’s wait just 3 more weeks to decide”

“repeat”

“hmmm…3 more weeks”

“well, I guess I want to revisit this in another month”

 “let’s check him again in 2 months”

“the next appointment will be critical.  If there is ventricle growth in his CT scan we will proceed with a shunt.” {note: This is when we took him to Boston for a 2^nd opinion and a discussion about proceeding with ETV/CPC instead}

 “if he makes it safely to 1 year he will likely be okay without a shunt” 

"see you in 3 months"

“well, if he doesn’t need intervention by the time he is 2 the chance he will ever need a shunt is about 0%!”

"schedule a 6 month check up"

We recognize the amazing medical advances in shunts allowing doctors to save the lives of children with Spina Bifida.  Along the way we somewhat accepted the idea that Gabe might eventually need intervention. But, this week we are relieved, thankful, and thrilled to finally say...

We have a SHUNT FREE 2 year old!  

A Beautiful Community

Since the time of Gabe's diagnosis we have been blessed to participate in an amazing community of families from West Michigan who are also living with Spina Bifida.  At first the group served as reference desk for my many questions about "What to Expect When Everything is the Unexpected."  Very quickly these caring and giving women became some of my closest friends.  There is something very comforting about being in the company of people who "get it."

In the past 2 years {that 2 thing...not quite ready to talk much about it ;)} I have also appreciated getting to know many amazing women from my own neighborhood, preschool, church groups, etc. who are parenting children with special needs.  In our conversations these moms are impressed by, and somewhat envious of, the community of support we have established in West MI, for families dealing with SB.  Two of my "mentor moms" {I use the term loosely since they are younger than I am} have often suggested trying to create opportunities to connect moms - who may otherwise feel like they are alone in their parenting journey - for conversation, advise, support, giggles, and encouragement.

I am so excited to have recently been given an opportunity and an outlet for bringing Holland moms together!  Working with Jenny, the heart behind Moms in Tow, we will be reaching out to bring moms together.  Our goal will be to plan at least two opportunities a month for families raising children with special needs to get to know one another.  It is our hope, within this large group  support system, small groups of families with similar diagnosis will be able to build special relationships.

Our first get together will be a play date at Christ Memorial Church's indoor playground on Monday, September 17th from 10:30-11:30 AM.  It will be a very casual chance for us to visit while the kids play.  We are looking forward to hearing from families who come about what types of events/support they would like to see in our community.  If you are interested, please know that you do not need to be a Moms in Tow member to participate.  However, the events will always be posted on their main page activity calendar!  You will also find information about these, and many other wonderful events on the  Moms in Tow facebook page.

To see the invitation and/or RVSP ( rsvp is not necessary) click HERE!

The 2nd Annual Stroll N' Roll

Calling Gabe’s GEMs!  

It’s that time of year again - the 2nd Annual Stroll N’Roll.  This year’s stroll will be held at Millenium Park in Grand Rapids on September 22^nd.  A perfect way for us to celebrate Gabe’s 2^nd birthday with our friends and family - that means YOU are invited!  

The Stroll N Roll benefit raises funds for The West Michigan Spina Bifida Organization. Our participation, and contributions, will enable the WMSBO to continue the important work of supporting children and families affected by Spina Bifida.

Spina Bifida is the most commonly occurring permanently disabling defect. The diagnosis itself is emotionally challenging, as is the resulting financial strain placed on the families who are affected. 

The WMSBO exists to alleviate emotional and financial burdens for the families it serves. The organization provides assistance for adaptive sports, special camps, and educational conferences. In addition, the WMSBO provides programs and events where the local Spina Bifida community connects with those who share and understand the unique challenges associated with this complex birth defect. The need for support in West Michigan is greater than ever!  

If you would like details about joining the GEMs to stroll, roll, or scoot send us an email (listladykatie{at}gmail{dot}com) and we will let you know how you can participate. 

If you would like to donate to the WMSBO Stroll N Roll in Gabe’s honor we have set up a donation page for our team, or you may donate by cash or check (payable to WMSBO).  Online donations must be submitted by September 14, 2012.

Thank you for your consideration!

Mimicle

Gabe’s favorite word is “mimicle.”  He’s always looking for them, always pointing them out, finding them in the most unusual places, making people smile as he identifies them, and encouraging conversations about how a 1 year old knows what a “mimicle” is.  We love it! Driving M22 during our recent family vacation, Gabe was so excited to announce, “Look, a mimicle!” as we passed the most amazing scenic turnout featuring nothing but Lake Michigan shoreline and water as far as you can see (and many tourists who also stopped to appreciate it). The natural beauty is a “miracle” for sure, but now we know for certain he is actually saying “motorcycle.”

8.20

{love}

Gabe's 1st Bicycle

This week brought a very special delivery!  The generous people who come together at the Kenowa Ambucs purchased, put together, and presented Gabe with his first bicycle.  It is an Amtryke hand and foot pedal tricycle fitted specifically to his size and current need. They also brought him a helmet to wear when he is keeping up with his siblings on their bikes :)  

He was not sure what he thought at first, but warmed up to sitting on it quickly.  When he is buckled to his seat and strapped into his pedals he will be able to practice moving forward with his foot motion, arm motion, or both.  Kevin and I will also be able to help steer using the push bar.

This is an amazing gift.  We feel very blessed and appreciate the friends at Ambucs who made this a possibility for Gabe, and work all year to provide similar bikes to many other families as well.  

Hopefully by the September 22nd Stroll N' Roll  Gabe will be ready to roll with his buddies instead of stroll{er}ing with mama!

{side note: the summer is hot and the plants are dry, but the color focus on these photos is deceiving.  Kevin has actually been working diligently to keep our grass lovely shade of green and the bike has bright primary colors.  we will have to get an action shot soon with full color}

SpiderBabe

Since Gibson was napping Gabe finally had a chance to try out his superpowers with the Spidey costume.  He thinks Spiderman should roar!  He tried and tried to get a reaction from Gavin and Anne Hope, but they would not let anything distract them from their precious screen time.  But, he had me all tangled up in his adorable web.

7.19

{cold treat. HOT day}

7.7

My future is so bright 

I've gotta wear shades!

7.4

{hooray for the red, white & blue}

6.4

{he doesn't count sheep, he reads himself to sleep}

6.3

{concentration}

6.3

{"hello"}

In Due Time

It has been two years today since we sat in the ultrasound room waiting for the first glimpse of our newest babe.  Followed minutes later by the news of things beyond our understanding. There was pain in the offering, yet there was beauty and hope.  

While the date and the emotions are tucked in my mind for always it isn't a day to mark on the calendar in celebration or in grief.  It just is. This date is part of Gabe's story. Now, thankfully, we know the seemingly devastating news of that day, is not so devastating. We know the joy of September 21!

Of course, God also knows the feelings today holds. He guards my heart as I replay the reels.  In my daily devotion book this morning he reminded me,

"When things don't go as you would like, accept the situation immediately.  If you indulge in feelings of regret, they can easily spill over the line into resentment.  Remember that I am sovereign over your circumstances,and humble yourself under My mighty hand.  Rejoice in what I am doing in your life; even thought it is beyond your understanding." 
~from Jesus Calling by Sarah Young

Although unread until this 2012 morning, these are words we have been trying to live out since May 25, 2010. 

"...that he may lift you up in due time." ~I Peter 5:6

A Piece of Our Love Story

While working on a project for my grad class I experimented with the Windows tool called PhotoStory3.  I enjoyed putting an article I recently wrote for Anat's site into video form to share with you here.  The sound and timing aren't perfect, but we think Gabe is! ;)

"I Made It"

So...

this happened yesterday

and again today

and I am certain it deserves words


the story.

but, even before I put all that together

this miracle needs to be shared

 


And now we step to the rhythm of miracles.
― Aberjhani

4.13

{Happy Birthday Daddy}

Tip Toes

{Ignore the shoe mess on the floor, but check out those toes!}

4.1

{just for safe keeping}

3.23

{well, I have to admit this isn't a scenario we anticipated}

Kids Beyond Limits

Anat Baniel is the founder behind the method of therapy we have gone out on a limb on to commit to with Gabe.  It is outside the norms and while it has been researched extensively, we are among the first to use it for a child with Spina Bifida.  We have been so fortunate to find a passionate and kind practitioner close to home.

On March 27th Anat's newest book, Kid's Beyond Limits will be released.  We are looking forward to reading it in whole and sharing it with others that may benefit from learning more about the method.  In anticipation of the book's launch Anat is sharing pieces of her philosophy on the Huffington Post.  I especially appreciated this article,  

Children With Special Needs: A Revolutionary Approach Gives New Hope.

Here's a couple of my favorite quotes if you aren't into reading the whole article.

"...if the arm of an infant is not doing the typical  because of an injury to the nerves  the brain will not be able to get information it requires to learn to control that arm well, if at all." 

(in our case consider the statement to include an injury to the nerves in the legs, feet, and toes).

"...Will moving her arm in that passive way, that is, by physically taking it in our hands and exercising it, result in her brain getting the information it requires to move that arm well on her own? Will trying to get her to do what she cannot do provide her brain with the missing information?"

 (ex. being propped in sitting before he is ready,  standing with extensive bracing, walking with any type of ambulatory device) 

"As counter intuitive as it may appear, the answer in most cases is that it won't. It is way too limited! The healthy infant does thousands upon thousands of small, highly varied movements that are not the final skill... It is this flood of seemingly irrelevant information that the child with special challenges also needs."

"{ABM} provides tools... to wake up the child's brain and flood it with information it has to have for that child to be able to successfully move from the impossible to the possible. This is not some kind of magic or esoteric system but is founded on scientific principles that have been demonstrated over and over again by leading researchers the world over. Science has shown how the brain possesses a remarkable ability to create alternative solutions to physical and mental disabilities when given the information to work with. Through the spontaneous process of differentiation (discerning increasingly finer differences), the brain creates billions upon billions of new neural connections; these are the very connections that every child's brain needs to figure out how to stand, walk, talk, think, and do everything he or she will ever learn to do"

Now, THAT is this kind of thinking that hooked me when I attended Anat's conference a year ago this March. Since then we have seen Gabe work beyond the limits of his diagnosis.  We are certain ABM has been part of our miracle.

3.21

                                                                              {18 Months}

photo credit: walcott imaging

Learning to Stand

This happens to be Gabe's favorite indoor activity.  Although with the wonderful sunny weather he spends most of his indoor time whining at the door to go out and chase "da ball, da ball, da ball."

Anyway, his chatter in this video makes me smile (so does the standing work he is doing!).

This video was actually taken a couple weeks ago now, but I couldn't resist sharing it.  Notice the couch cushion.  He usually  pulls one down when he wants to practice standing.  I think it is fascinating that the activity is self initiated and shows that he is a bit cautious not wanting to smack all the way to the floor while he is experimenting. Although, he is able to do it without the cushion also.
 
"Balance is not being rigid, but being able to catch ourselves, support and steady ourselves and move on....one of the things we explore is how to use support from the environment (usually the floor, sometimes a chair or the wall) to facilitate effective movement." Clyff Smith

Oh, you want to see more?
Sure!


Speaking of experimenting, while I have yet to catch it on video Gabe has been taking 2-3 steps completely independently when transitioning between pieces of furniture around our house.  Talk about exciting days in our home!

3.18

{boy's best friend}

Mom?!?!

HEY!

What's the hold up here? 

 I gave you all those cute videos to post.  

Where are they?

2.29

{please may I leap into the tub}

2.19

{beautiful duet}

2.14

{happy valentine's day}

oh, my heart has he grown!

Parent & Child Session with Conductive Learning

Gabe and I made it through a 2 week session of Parent & Child  therapy at the Conductive Learning Center.  It was a great learning and stretching experience for both of us. 

 I entered the program very hesitantly.  There were many concerns about how we would carry out our typical family routines with this added commitment, as well as my concerns about how this type of therapy would interact with the work we have been doing with the Anat Baniel Method. 

 

I  loved watching Gabe listen and participate during table time: snack speech activities, and fine motor practice.  He especially enjoyed painting and chose the green paint every day! 

 One of the main goals I set for Gabe, during my conversation with the conductors at the beginning of the session, was for him to continue to loosen his upper body and reach for things above his head.  We found that with the proper motivation {and a bit of whining} he was able to do it.  

He also spent more time experimenting with upright movement cruising along the tables, pushing small carts, and walking with our hands.  

 

A large portion of the session was also focued on "potty skills."  That is my lay mom's term for the CLC's proven method for beginning tolieting awareness.   Gabe actually enjoyed his time on the potty and has adopted it as part of his routine at home.  As for me, during the 2 weeks I learned the art of singing in rhymes, singing in my sleep, singing for snacks, singing for poop...basically singing everything I might ever want to say:)  

Overall, we were very pleased with the program.  It was run professionally and purposefully.  Every minute of the day was choreographed to encourage Gabe to experiment with movement, to play, and to learn.  It was fun to see the way the way he interacted with his friend, as well as with other adults and their instructions.  We really feel like his attention and vocabulary both grew during the two weeks.  It was a great reminder of all that our children are capable of doing when we have high expectations for them.