Bryce's Story - Living With Our son with Spina Bifda

By Rachel Olstad

    My story begins when I was 25 years old and had been married just three years. 

We'd been trying for a baby for a while and were very excited to finally be pregnant!  We'd had an early ultra sound (at six weeks) and had seen the baby's heart beat, so we didn't have another routine US later on.  We also chose not to have an AFP test, because we thought back then that the only reason people had those tests was so that they could abort their babies and we knew that we would never do that.  Well, God took care of us despite all of our plans! 

    I had unexplained spotting a little before my seventh month and it was a weekend so I went to the hospital for an ultra sound.  There it was discovered that my precious baby had spina bifida, a neural tube defect.  He also had "remarkable" hydrocephalous, Arnold Chiari II brain malformation, bilateral clubbed feet, a missing rib and a missing kidney.  My OB sent me to UC Davis because, lo and behold, there were things that could be done to help my baby.  They monitored the baby's lung growth so that as soon as he was "ready", they would deliver him so that his brain damage from the hydrocephalous could be halted.  They also planned a C-section so that he would have a greater chance of making it, and then he would be whisked away to OR by the neurosurgeons to repair what they could of the hole in his back.

    Despite planning this all out for him, the doctors didn't give us much to hope. He only had a 25% survival chance.  If he made it he would most likely be a "vegetable".  The genetic counselor assigned to us kept urging us to consider abortion.  Even after asking her to please not mention that again, she kept mailing us stories of other parents who had made the choice to end their babies lives.  The picture painted was bleak.  But we knew that we had no right whatsoever to end a life that God had entrusted us with.  Our baby's life was in God's hands. 

    So we prepared ourselves for the worst...But guess what?  The worst didn't happen!  Our son, Bryce, is now 12 years old and extremely healthy.  He pushes himself around in his manual wheelchair.  He reads at an adult level.  He loves music and even plays a mean swing beat on his drum set.  He loves learning anything he can about Native American Indians.  He loves to go to church and visit with all of the people who love him the most.  He sits in the front row at all the concerts of our local city band and conducts along with his own baton. Some of the band members say they actually follow him instead of the conductor!  He loves telling funny stories and jokes.  He loves slapstick humor.  He loves to play with his younger brother, Abel, who is 6, and his baby sister, Phoebe, who is a year and a half old.

    If we had been referred to a spina bifida clinic BEFORE we had Bryce, we could have seen all of the wonderful parents and children who are living successfully with this birth defect.  We could have seen the happy smiles on their faces.  We could have talked to other parents, other doctors, who would have given us a brighter picture of what our lives were going to be like.  So now my advice to moms who are expecting a baby with a prenatal diagnosis of spina bifida is to pretty much ignore the genetic counselor (who told us never to have more children ) and instead, to get themselves to a spina bifida clinic - usually at the large teaching hospitals, or Shriner type hospitals.

Has it been easy?  No.  Bryce has undergone about 30 surgeries, had umpteen hospitalizations, umpteen close calls with death.  We dress and bathe him every day.  We take care of his toileting needs.  We interpret his speech to those who cannot understand him.  We teach him at home. We deal with his learning disabilities. We answer his endless questions that are the same questions he had yesterday and the day before.

    But you know what?  Our joys are greater because our pains have been greater.  His first smile, the first time he laughed, were reasons to throw a celebration party!  The first time he signed a word, spoke a word, were reasons to call everyone we knew to let them know.  If we had chosen to end his life before he was born, I think all we'd have would be the pain.  No joy.  Probably a broken marriage. Because of our son, we've entered a whole new world.  We didn't choose this world, we didn't want this world, but now that we're here, we are loving life.  You see, God knew that we would make it with His help, His strength, His people.  We have become people with stronger character than we had before, more compassion, more patience.  We have a whole circle of friends and acquaintances that we would have missed out on if it weren't for our son.  My husband has become an expert at fixing wheelchairs, and has even gone on missions trips to foreign countries as a wheelchair mechanic.  We have become people who seek God and dig into his Word more, because we see clearly just how much we need Him.

Our son will never be able to live on his own, but at least we'll never have "empty nest syndrome"!  Our middle son is being raised around a lot of disabled people, and you know what?  He doesn't even notice it.  He's already talking about how his brother Bryce can live with him in house when he grows up.  Our son has touched more lives than we will ever know. We take him to the local assisted living home to visit with the residents while his daddy plays music for them.  He just loves to visit with the residents and they just love him back. 

Once while he was talking to a man (who was talking back to him and giving him an orange from the centerpiece bowl to take home), one of the attendants ran to get a camera to document the occurrence of this man speaking. Apparently he never talked to anyone - except Bryce!  Another resident passed away and his family requested donations be sent to the Spina Bifida Association of America in honor of our son Bryce, because their dad always talked about him and just loved him.  We never knew!

Is his life worthwhile?  You bet!  He loves Jesus with such a simple trust, that I wish I could do the same!  He can't wait to get to heaven so that he can talk with Jesus and so that he can walk.  (Although he
can't imagine walking ~ He wonders about who will teach him how to walk there and will he be using crutches?)  Can I imagine life without him? Never.  Although his life, and my life, and my family's lives, are not easy nor typical, we find joy, humor, love and laughter where it can be found ~ all around us.  Sometimes we're scared, discouraged, frustrated, dare I say even angry or bitter?  But then we remember to run to Jesus and let Him handle it for us.  It's so much easier that way. 

Would we change our lives now?  Nope.

I've been compiling a humorous list of all of the benefits my life has because of my son Bryce:

1.We never have to worry about not having a good parking spot.

2.  I have a built in sweater dryer by flinging them over Bryce's bath
chair.

3.  Our family never has to wait in line at Disneyland.  (Bryce is a hot commodity when we go to D-land with his cousins!)

4. We will never have "Empty Nest Syndrome".

5.  I always have someplace to hang my purse and my purchases when we go to the mall. (The back of Bryce's wheelchair).

6.  Bryce's hand held shower sure makes it easier to rinse the tub when I clean it.

I'm always looking for the positive side of things.  This helps me from dwelling on the "poor me" stuff.
The following is a poem that a friend wrote for us BEFORE our son was born.  She gave us the gift of seeing the value of his life, even if it was only for a short time as the doctors predicted.  If he hadn't survived, we still would have been blessed by the presence of this child.

THE PRESENCE OF THIS CHILD

(Bryce's Song)  by Diana Hancock

There's a precious baby waiting,

God's angel from above.

Who, yet unborn and troubled

Has touched our hearts with love.

For whatever God has formed

Is perfect in His sight.

And we know this special child

Is absolutely right!

And already we have seen

A bond of love abound

For this baby and his parents

As we've become so interwound.

And as one day we cried

And another as we smiled,

We know we've been so blessed

By the presence of this child.

copyright 1990 Hancock/Olstad

    My prayers are with those of you Moms out there who are going through what we went through over 12 years ago.  The pain and fears have subsided for us over the years.  One experienced mom told me that the first 2 years would be the hardest.  In our case it was the first 4 years, but life has actually gotten alot easier.  Our son has a severe case of spina bifida.  Like all birth defects, spina bifida ranges from mild to severe. Never limit your expectations based on what you're told in the beginning, for, like us, you never know what "miracles" might happen.  I recommend the song "Sometimes Miracles Hide" by Bruce Carrol. 

God bless,

 Rachel Olstad