Spina Bifida Awareness Day 25 Hunter's Story

Dear Life,

I have only recently met Hunter's mom through a mutual friend named Christiaan Bailey.  He's an amazing surfer.  He's an amazing skater.  He's an amazing man.  He reached out to us after he found out about us from Aaron Fotheringham (who is also pretty dang awesome).  Christiaan told me that Kumaka needs to be friends with Hunter.  When you read about him...you will agree.  My boy needs an older friend to be an example of living a full life.  I can't wait to get our boys together~

Hunter is 7 ½ years old. 

I remember the day we found out about Hunter's diagnosis like it was yesterday, and yet it was almost 8 years ago. On a cold and rainy January 3, 2005 after spending the holidays in California with our families, we had an appointment at the Genetics and Fetal Lab in Phoenix, AZ to have a “routine” ultrasound at 19 weeks. Things were great – we said YES to finding out the gender and were so excited that we were having a boy. And then the tech slowed down a little bit when looking at the head. I knew right away that something wasn’t right. I asked if it was normal for the two black spots (the ventricles) on the head to be so big. I didn’t remember them being so big with my daughter. Quietly and calmly, the lady said “No, they are not supposed to be that big. I would like to look at a few more things, and then go speak with the doctor.” The doctor and the tech both came back in the room and tried to explain to my husband and I what spina bifida and hydrocephalus are and how they would impact our lives and the life of our child.

 I don’t remember ever hearing these terms before and felt like we had so much information thrown at us in such a short period of time that I felt like I just needed to bust out of there. But no – we had to meet with a genetics counselor who said we had options. Pete and I looked at each other and told this guy we didn’t need to hear about our options because LIFE was the only choice for this child!

I got home and immediately started researching on the internet – trying to read through my tears all these horrible things that my child was going to go through – because that was pretty much all I could find. We started praying and trying to figure out what we were going to do. At first we asked “why us?” but that didn’t last long. We both got that overwhelming feeling that God is putting his trusts in US to raise and love and teach this special child of his. HOLY COW – He trusts me? I went from tears of the unknown, to tears of comfort, knowing I was going to have the Lord on my side through this journey.

We had only been living in Arizona for ten months when we found out about Hunter and his spina bifida. Prior to moving to Arizona, we lived in San Diego. Pete worked for the State of California, and I worked for a mortgage technology company. Within hours of getting this news, Pete and I knew that we needed to move back to California. We knew we were going to need help with my daughter, who was six at the time, and also with Hunter when he was born. I called my boss and without skipping a beat told me I could start back in the office as soon as I needed to. Pete called his former boss and was informed that his position would be opening back up in a month and that he could have his job back. Now if that doesn’t tell you that we were supposed to move back – the next part will. We had just signed a year lease on a rental home. We were only two months into when we got this news. We talked to the property management company and they said we would be responsible for the rental payments until they could get the house re-rented. They told me they contacted the owner, told him our story and they couldn’t do anything to change this. So, knowing that home ownership is public record – I did my research. Come to find out the owner of the home only lived about 30 miles from us in California. So I overnighted him a letter and got a call from him the next day saying he didn’t want us to have to worry about any more rental payments. He was going to let the management company know we were no longer responsible for making the payments. So many answers to our prayers!

Now, 7 ½ years and 15 surgeries later, Hunter is one awesome and happy kid! He loves participating in all different adaptive sports. He loves wheelchair basketball, tennis, chairskating and especially SURFING! Sports have been one of the best things for Hunter – bringing him out of his shell. He even had a wheelchair sports birthday party this year.

 He shared with his friends from school and church what it was like to play basketball, teatherball and do relay races in a wheelchair. Not only was it fun, but it was educational for the kids and their parents (every single parent stayed to watch)!

Spina bifida is just a diagnosis – not a way to define a person, who they are and how their life is going to be. We have been blessed with so many wonderful friends and opportunities (fun and teaching) because of Hunter being a part of our family. I don’t even want to think about how different our life would be without him in it.

My motto is **You never know how strong you are until being strong is the only choice you have.** Yes, you have to be strong when sending your child back for surgery. Yes, you have to be strong when they struggle and get frustrated in physical therapy. Yes, you have to be strong when you feel like the doctors aren’t listening to you – even though you know your child better than anyone. Yes, you have to be strong not just for them – but for YOU!! BE STRONG - even though sometimes you just want to sit down and cry, because you will and that’s OK!

My advice to future parents of a child with spina bifida – as much as you want to “do” for your child, you need to let them learn to “do” for themselves. As parents our purpose is to raise responsible and independent children – with or without spina bifida.