Spina BIfida Awareness Day 30 Kumaka's Story

Dear Life,

Have you enjoyed the posts this month?  I know I have.  If you have wondered what inspired me to invite these families to share their stories it is really quite simple.  When I was pregnant with Kumaka, Stuart and I felt like we were old pros. 

 After all, this was our fifth pregnancy.  When we were headed to our detailed ultrasound at 19 weeks, we were just thrilled to find out if we were having boy number five or finally having a princess.  It was a beautiful, sunny, summer day and we talked all about the vacation we were leaving for the very next day. (That ended up not happening)  When I was taken into the ultrasound room, they said that Stuart had to wait in the waiting room while the tech did basic measurements.  At first, I chatted away with her, but after what seemed like forever, and her increasing quietness, I started to get fidgety.  Finally, she told me she was getting Stuart and the radiologist.  Stuart came in and grabbed my hand.  I really didn't think anything yet, not until the radiologist came in and kept looking and looking without sharing anything with us.  

They didn't point the screen towards us or anything.  Finally, he put the wand down, and said those fateful words "I'm sorry, your baby... " and the tears came rolling down my face.  It no longer mattered that there was a room full of other people getting ultrasounds....everything faded out.  He told us about "the lemon sign" showing hydrocephalus.....about spina bifida (not being able to see if there was a closed lesion or open)...about having two clubbed feet.  He then told us we have a small window to terminate.  We asked him what the gender of the baby was....he said it's a boy.  We asked for a picture (no, they didn't even offer one to us) and he gave us a picture of his face.  He told us that typically they don't give pictures to families of fetus's that have abnormalities.  He then told us we would have to make an appointment with our OB to discuss what all of it meant.   Talk about a bomb getting dropped in our lap.  We sobbed all the way to the car.  Our world was shifted and really would never be the same. I cried that messy ugly cry all the way home.  Before we got there, Stuart pulled over, turned off the engine and grabbed my hands.  He looked me in the eye and said this "Do you remember the conversation we had about having more children?  How I told you that I was pretty content with four children?"  I sniffled and nodded my head.  "Do you remember what you said?  You told me that you felt that there was another spirit waiting to come to our family.  This baby is meant to be here....he's meant to be with us.  It will be ok".  That still gives me a warm feeling in my heart, to know that my husband loves me and our children so much and is willing to listen to inspiration and remind me of that sweet moment.  After that, we did a lot of internet research, and the one thing I was looking for that I couldn't find was stories of hope.  We never thought termination was an option, and after the third time it was brought up we very forcefully told them to please stop offering it as an option.  But scouring the internet didn't help us at all...and the doctors told us worst case scenarios.  I was very scared, and sad.  I didn't like being around people who were pregnant with healthy babies.  I felt isolated...like no one knew what I was going through.  Every night, I would crawl into bed exhausted, and get as close to Stuart as possible.  I could not sleep if he was not holding me.  Poor guy...I'm sure he didn't sleep the whole pregnancy.  We heard scary words, mental delays, bowel and bladder issues, learning disabilities, inability to walk, decreased life expectancy, bladder and kidney problems. 


When it was time to have Kumaka, we were excited to meet him but scared at the same time.  I had him via C Section on December 20th, 2006. 

 I got to kiss his sweet head, and they whisked him off.  Six hours later, the surgeon came in and described what he was going to do (close his back and place a shunt).  I was exhausted because I hadn't gone to sleep yet. 

 I wanted to see my baby.  I asked him if I could see him before they took him into the ER.  He had the nurses bring him in.  I wasn't allowed to hold him, so I held my hand out to the incubator and sobbed.  I was so afraid I would never see him again.  He was beautiful.  

That was the first time he defied the odds.  After that surgery, he left the hospital in six days.....the day after Christmas.  That was our Christmas miracle.  

Since then, we have seen the inside of so many doctors offices, emergency rooms and hospital rooms.  We have seen the PICU three times.  My boy has been in so many casts...

just this year I think he's almost been in a cast longer than he's been out of a cast.  He's had 19 surgeries. Although none of that is fun, it doesn't define who he is. 

 Kumaka is a vivacious, silly, hilarious little boy.  He loves knock knock jokes, the color green, and he loves to cause mischief.  He laughs so hard you can't help but grin.  

He flirts mercilessly.  He loves to do wheelies and race people.  He loves to swim and he loves basketball.  He might run your feet over. 




 He is quick to apologize if he hurts your feelings.  He is tenderhearted and so sensitive to others.  He is loving and kind.  And we wouldn't change a thing about him.  

When you get a shocking diagnosis, the offer to terminate, your world becomes blown apart.  It's easy to get lost in it all.  But maybe, just maybe, if you look beyond the diagnosis to what your child can be and will be....you will be okay.  Your child will be okay.  Yes...it can be hard to see your child go through challenging things. 

 It sucks to sit in a hospital watching your baby hurt.  There is so much more than that.....so much joy and happiness.  We have met the most amazing people, the most amazing children and adults with Spina Bifida.  We have seen miracles.  We are blessed.  His smile melts our heart and makes the world a better place.  






This month is a wonderful celebration of life, love, and joy.  That's what this is really all about.