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!