Monday, October 31, 2016

Faces of Spina Bifida: Meet Owen, Olivia, Jemma, and Jordan

Owen
(right)

Ten years ago today we went in for my first ultrasound. Since it was Halloween, everyone in the doctor's office was dressed up. The ultrasound tech told us we were having a boy! We had a 2 year old boy and 16 month old girl at home, and now we were having another boy! We were thrilled! Then the tech said she needed to show the doctor the scan. We didn't suspect anything was wrong.

When my doctor came in she was dressed in a robe and curlers. She put her hand on my knee and gently said, "I see a couple of things on the ultrasound I'm concerned about." I took a deep breath. "It looks like your little boy has a cleft lip and palate." Okay, we can handle that I thought. "I also see fluid around his brain and a sac containing spinal nerves protruding from his spine. He has hydrocephalus and Spina Bifida. With the presence of multiple birth defects we're probably looking at a chromosomal abnormality. It may be fatal. I'm so sorry."

The world stopped. My tears flowed. Our world had been turned upside down in an instant. All our hopes and dreams for our son had changed, just like that. The questions swirled in my head. What would this mean for our son? My doctor was pretty confident in the diagnosis, but wanted us to see a specialist ASAP to confirm. She used lots of big words. It was completely overwhelming.

The thing I remember most clearly from that day, and still marvel at all these years later, is the overwhelming flood of peace that came over me as I lay on that exam table. This was most certainly God’s grace. I would have expected a diagnosis like this to feel devastating—it was no picnic, don’t get me wrong. But God gave me an unmistakable peace in that even if our worst fears were realized and Owen would not survive birth God was still in control. It was the most clear experience I’d ever had of the peace that transcends all understanding in Philippians 4:7. Our world was certainly rocked, but our faith was sure. We named our son Owen Mark right there in the ultrasound room. It means "Mighty Warrior," and that's just what he turned out to be.

Forty-eight long hours later we were sitting in the Perinatologist’s office waiting for the results of a level two ultrasound. The specialist was not as compassionate as my OBGYN had been. He flatly stated that he’d give our son a 50/50 chance that he’d survive birth. He gave a grim prediction of what our Owen’s life would be like if he survived. “He will never walk. He will never be normal. He will have no quality of life whatsoever. He will likely be a vegetable.”

Thankfully we familiar enough about these birth defects to know that NEVER was a pretty strong word to be using so early in the game. Both Spina Bifida and clefts are present in our extended family. We believed that though this doctor’s predictions may be right, there was plenty of room for God to work a miracle. God is the only one who knows the future. We held on to that Hope with all our might as we faced whatever lay ahead.

The specialist began to explain how we might “terminate” the pregnancy. I cut him off. This was our son. He was fearfully and wonderfully made by His creator. Each day of Owen’s life was ordained before one of them came to be. We loved him no matter what.

Since both conditions were present in our family, I asked the doctor if it was possible Owen just happened to get both at the same time. He replied, “I suppose you can get hit by a bus and shot in the back of the head at the same time, but it is pretty unlikely.” The nerve. In my dreams I often would go back to this moment and stand up and slap him across the face. Instead I snapped back, “Well, I think that’s exactly what happened.”

We chose to have an amniocentesis to know if we needed to plan to deliver a baby with specific medical needs or prepare to say goodbye to our son. Sure enough his chromosomes came back perfect. God is so good. And He still would have been good if the outcome were different.

If only I knew then what I know now? I would have understood, like my friend Carrie said in her post a few weeks ago, that the events of this day ten years ago would only be a bump in the road of our journey.

Owen is 9 ½ now. He has had 30 surgeries, with more on the horizon. He walks independently with AFO’s, caths 4 times each day and does a bowel program every other day. His Spina Bifida is just part of his life. It does not define who he is. I can say with confidence that God has used the challenges Spina Bifida has brought into his life to grow Owen’s determination, persistence & creativity. He always finds a way to do what he wants to do. In the last few years, Spina Bifida has actually been in the background as we’ve encountered new “bumps in the road”—with the diagnosis of PTSD and Autism.

Owen is a super creative Lego and Minecraft builder. He loves the Ninja Turtles and playing on the iPad. He likes playing with his brothers and sisters (he’s the middle of our five kids.) We always joke that he has the best handwriting in our entire family. He’s crazy good at remembering obscure facts and is a great cuddler. He is a concrete thinker, and as such his biggest frustration in life is that he is shorter than his younger brother. “If you are older you are supposed to be taller.” No examples to the contrary will sway him in this conviction.

I asked Owen what he would tell someone who didn’t know about Spina Bifida what it was like to be a kid with SB. This is what he said: “Kids with Spina Bifida have shunts and wear braces. Kids with Spina Bifida can do anything they want… except running fast. We go to the doctor a lot. Some cool things I got to do are go to the Indy 500 and be in a commercial for Riley. He agrees with Toby that the worst part is that the operating room stinks. “I don't like the mask. It stinks even without the scents they put on it.”

I love this kid to the moon and back again. I am privileged to be his mom.



Olivia

She's 6 years old and amazing. She's in first grade and has an entourage of kids that hang around her. She loves dolls, playing hide and seek and tag. She's not able to wall at all but that doesn't keep her in one place. She's everywhere all the time. She doesn't mind being the girl in the wheelchair because everyone has something different about them and this is her awesome!


Jemma

5 year old Jemma Grace Donahue, born on January 17, 2011 as baby B. She weighed 4lbs 15ozs. Due to being under 5lbs she had to go to the NICU where the noticed a skin tag on her lower back. They ran scans and ultimately found she had SB. We had many check ups with her specialists and not had any problems with it. She does have a raised bump on her lower back that we keep a eye on. She's a very active tomboy and dreams of being a firefighter. She adores the ninja turtles, and everything boy. She has an identical twin sister who is the polar opposite to her.



Jordan


Jordan Lee is an amazing young lady! She's got a great and quirky sense of humor and she loves sports, especially the Texas Rangers and Dallas Mavericks. She is 17 and a senior at Lamar High school in Arlington where she participates as a para athlete with the track and field team. She won gold in all of her events at the UIL state track meet this year. She's also a member of the National Honor Society, HOSA, French Club, and Science Honor Society. She will graduate in the top 5% of her class this year! She plans to attend UTA or the University of Illinois so she can play wheelchair basketball and study neuroscience. She loves wheelchair basketball and has been playing for the Dallas Junior Wheelchair Mavericks since she was 9. Her goal is to make the 2020 USA women's team and go to Tokyo for the Paralympics. In her spare time she loves playing with her lab Landry, reading and watching sports. She is strong willed and stubborn and doesn't let much get in her way. She doesn't like being called an inspiration but she's a great example of what a person with Spina Bifida can do and become. Everyone is different and everyone deserves a chance to succeed and show what they can do. We were told to abort her at 18 weeks. Look what the world would have missed out on. She's loved by many and prefers to focus on her abilities rather than her disabilities.

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