Sunday, May 8, 2011

Mothers Day 2011

I opened the blog today and realized that it had been some time since I posted.  To me, that's a good thing.  It means nothing blog worthy has happened.  When you have a child with chronic health issues, boring is a great thing.

Today was Mothers Day!  I feel it is a day that I should thank my children for allowing me to be their mother.  I have two amazing children and I couldn't be more blessed. 

For the past few months I have been working hard to raise money for our Walk N' Roll, which takes place every year on Mothers Day.  The money raised helps the Spina Bifida Association of Colorado do many wonderful things.  I have been fortunate enough to be a the receiving end of those things several times.  The most recent being that they are paying for our family to attend the National Spina Bifida Confernce which is taking place this year at Disneyland!!!

I am surrounded by an incredible group of friends and family who helped our family to raise just short of $1800.  Thanks to each and everyone of you who donated!!

I was asked a few weeks ago to be a testimony speaker at the walk today and tell our story.  I was so honored to be asked to do this.

Thought I would post it here for others to read.

June 10, 2009 was a day that changed our lives.  We walked into our doctors office for an ultrasound, knowing that my triple screen had come back abnormal, but also believing that those results much be wrong.  We walked out with the reality that those test results were correct and that our lives were about to make a dramatic change.  We learned our son has Spina Bifida.

Upon finding out, like many other families who are given life altering diagnoses, we were dealing with a whole array of emotions.  We felt anger, sadness and confusion.  We felt torn between celebrating this new life we were bringing into this world and mourning the loss of our normalcy.   We asked WHY, why us, why our son?

It didn’t take long before I decided to deal with this only way I knew how.  I thrive on information.  I am a planner.  I needed to know what was going to happen when he was born.  What kinds of medical issues would he have?  What kinds of doctors did I need to have lined up?  What was our new normal going to look like?

Soon after getting our diagnosis my husband and I met with a multitude of doctors to try to prepare ourselves.  I got on the internet and started looking up information.  As we all know, the internet can be our worst enemy.  There was such devastating information about kids born with Spina Bifida and I kept reading astounding statistics about how many people choose termination upon learning that their child would have Spina Bifida. 

In my heart, I knew that wasn’t the right decision for us.  I felt confident that our baby would beat the odds.  I felt a connection to the baby inside me and it was important to me name him immediately, because he was already a part of our family.  We chose the name Evan Samuel, Evan meaning “young fighter and Samuel after my grandfather, one of the strongest men I’ve ever known. 

Not every day was an easy day.  On those tough days the thought that got me through, was that if I could see my son smile and be happy than that was enough.  It didn’t matter that his bladder may not function properly or that he many never walk or any of the other things that may come along with Spina Bifida. The possible physical issues he could face didn’t matter to me.  After he was born, and to this day, I still feel that way, his smile brightens our lives.

I realized that it was to my benefit to look for more reliable and positive resources to prepare for the unknown.  I wanted to seek out others who had made the decision to work through the challenges of Spina Bifida and continue their pregnancies.  I needed to connect with others who had already traveled this unfamiliar scary path. 

My first connection to the Spina Bifida Association of Colorado came about in a very coincidental way.  Shortly after getting our diagnosis, I was talking to my cousin, who is a former 2nd grade teacher.  She was telling that years ago, she had a student whose mother had a baby with Spina Bifida.  She remembered that they somehow had found a way to be happy.  She had lost touch with them over the years, but she had remembered the mothers name as well as a website they had put their story on.  I got on the website and read their story.  It was the first personal  experience I had and it gave me some reassurance.  At the time I thought it may be as close of a connection I would make with others dealing with Spina Bifida, at the time, not knowing how truly common it is. 

Several days later, my cousin was at a park near her house with her kids, and by some miracle, so was the mother of this former student.  The mother Cheryl Veenstra, the baby, Cassidy, by then an 11 year old girl.  Within 2 weeks of our diagnosis I was emailing with Cheryl and had a sence that I was no longer completely alone.  It wasn’t long before Cheryl had me in touch with other members of the Spina Bifida Association. 

In July, the association was having their annual summer picnic and we were asked to come and meet other families.  At the time our diagnosis was too new and our wounds were fresh.  We weren’t quite ready to face what our future would hold.  It seemed that everyone accepted our reservations of not attending  but still continued to give their support.

When Evan was born in October 2009, I felt armed with information that I had learned from doctors and members of the local Spina Bifida community.  During our long 29 day NICU stay, I finally had the opportunity to meet Cheryl in person.  She brought with her a care package from the Spina Bifida of Colorado Association as well as an abundance of reading materials and resource information also provided by the association, and I felt officially welcomed into this new family.

Shortly after Evans birth we attended our first Spina Bifida Association of Colorado event that Christmas and it has become one of our favorite events of the year.

It has been nearly two years since we heard those earth shattering words and I still ask why.  Except that now I ask why I was chosen to go on this amazing journey.  Why did I get to be so lucky.  Why did one life changing decision, become one of the most amazing experiences of my life.  I couldn’t be more blessed, not only  by my precious little dude, and rest the of my incredibly family who has stood by our side on the good days and the bad, but also by the great friendships that have emerged through our involvement with the Spina Bifida Association. 

It is so great to have people care about your kids and truly understand what you are going through.  Although we all may not see each other but a few times a year, we are a family brought together by a common bond.

My family is fortunate enough to be embarking on a wonderful journey this summer as we attended the National Spina Bifida Association conference, thanks to the assistance of the Spina Bifida Association of Colorado.  I hope to bring back a wealth of knowledge to help educate others who are in the position we were in not all that long ago.  I look forward to meeting many more families along the way and help to welcome and support them as I once was.

Happy Mothers Day to all the great moms out there!!!


  1. There is no way you could have gotten through that without crying! Great speech!

    And hopefully I'll get to meet you in Anaheim this summer!

  2. Hi Evan!
    My name is Jenna and I came across your site. That is awesome you get to go to Disneyland! I have a friend who has Spinabiffada and her brother was just recently diagnosed with Neuroblastoma. U are an amazing, brave,courageous, fighter, and such an inspirational hero.
    I was born with a rare life threatening disease.