Christmas is a season of hope, and a time we think of a specific infant, and His mother. I feel this story belongs.
A baby boy was born in a small Irish county hospital in 1965. The birth was a tremendous struggle, and the baby was deprived of oxygen for such a lengthy time that he should not have survived. The resulting brain damage left the child completely paralyzed, with one tiny exception: He had the ability to move his eyes.
The boy’s name was Christopher (Christy). His parents were Bernadette and Joseph Nolan. After Christy’s birth, the family moved to Dublin, to be closer to medical help. The doctors could do nothing. He was diagnosed with severe cerebral palsy, brought about by the extended oxygen depletion.
Christy’s condition did not change. He was mute, quadriplegic and confined to a wheelchair. His body was wracked by spasms, and his attempts at speech were merely senseless sounds and dribbles of saliva. Bernadette once said he was “gagged and in a straightjacket for life.”
One doctor told Bernadette that the six-year-old Christy had the brain of a baby.
Bernadette refused to believe this. She was his mother. She knew him better than anyone. She could see recognition in his eyes. Intelligence. She wanted more for him than to spend his life trapped in a wheelchair, and inside his head.
So she taught him. She posted the alphabet around the house and maintained a steady stream of conversation to keep him occupied. His dad read to him, his sister sang songs and performed plays. They knew that there was something going on inside of Christy’s head, and were determined to help it develop.
When Christy was eleven, he was given a new drug that provided a small, but significant result: It relaxed his neck muscles to where he could move his head and inch or two.
They fashioned a device he could wear on his head – essentially a stick attached to a headband. Bernadette would cradle Christy’s head in her hands, and he would use the end of the stick to press down the keys of a typewriter.
After eleven years, Christy could communicate.
Mom would hold his head for hours as he labored to type the shortest of notes and letters. Bernadette had been right, as mothers usually are. The family soon learned that Christy had eleven years of pent-up thoughts and ideas that he wanted to express. The stick and the typewriter were his freedom.
He began attending school, then college, and he wrote.
He wrote as his mother stood with him, cradling his head in her hands. Herculean – for both of them.
At the age of 14, he published his first book. A collection of his poetry called “A Dam-burst of Dreams,” From there, Christy began attending college, but dropped out to focus on his writing.
He wrote two more novels, received an Honorary Doctorate of Letters, Whitbread Book of the Year, and the medal of excellence from the United Nations Society of Writers, and was named Person of the Year in Ireland. One of the novels was 120,000 words, and took 11 years to write. He continued to write until his death in 2009. He was 43 yeas old.
The brain of a baby? Bernadette knew better. She had looked into the eyes of her son and saw what no one else could see.
She had hope. A mother’s hope.
——-
Why do I know the story of Christy Nolan?
A song. I wanted to understand the gorgeous lyrics of a U2 song, so I researched it. It turns out that Bono and Christy attended the same High School at the same time . Bono later wrote the song called “Miracle Drug” which is told through the eyes of Bernadette. It is one of my favorite U2 songs, and I have included it at the end of the post.
——
Why this matters to me?
My older brother was born in similar circumstances. He suffered severe brain damage in childbirth – half of his brain was completely destroyed, He was diagnosed with cerebral palsy. He was not as severely affected as Christy – my brother could walk and talk and do many things.
But his life was a constant struggle, hampered by physical and mental deficiencies, surgeries, cruelty, and the ‘soft bigotry of low expectations.’
But my mother had hope. I watched her as she taught, fought, and struggled with my brother. I watched her fight like a lioness as she took on all challenges and challengers when it came to his care and education, and opportunities. She saw something that most did not see. She had a greater hope for him. His accomplishments were all beyond the wildest dreams of most everyone – except my mother.
Miraculously, my brother went on to graduate from High School, and serve a full-time mission. (Something that would be impossible by today’s standards.) He lived most of his life on his own, held down several jobs, and was happy.
He passed away almost a decade ago, where I’m sure the first person to greet him on he other side – was my mom.
http://vimeo.com/49210580
Here
I’m surprised how much this made me tear up. Moms are pretty neat. I wonder sometimes what it would be like to have a mom. I just try to be a good one myself and see how hard it can be at times. It’s very healing to serve others and know of God’s love.
Thank you for this post. Here is a link to a blog has great information for members of the church ( or anyone really) who are working with people with disabilities. I highly recommend it.
http://disabilitiesandthechurch.blogspot.com/
Amazing stories! It’s late and I’m very tired but I’m so glad I read this. Thank you for blessing my life with the telling of so much goodness–over and over again. Keep thinking and writing. I’m reading. You lift my spirits:-)
Have you ever seen “Turning Point” on BYUTV?- i cry during every episode. There was one about a professorat some prestigious university (MIT I think) who suffered a paralytic episode where he could only move his eyes. His mind was fully functional but he had no way to communicate. After he recovered, he went on to develop a system that attaches sensors to the face to track where the eyes are looking so they can use their eyes like a computer mouse. It has “unlocked” so many children whose minds were there all along but they couldn’t communicate. They’ve been able to go to school and do all kinds of things that they couldn’t before! I bawled through the whole episode.
This story touches us here at home. My second child was born early and with severe life threatening birth defects. However being born too small, no one was interested in saving his life. We did find a surgeon who not only saved his life at the beginning, but many times after. We were told our son would not walk, talk, use his deformed arms and hands, and most likely die before a year old. Fast forward almost 15 years and he not always walks, he talks and nearly never shuts up. His mind is very keen and sharp……honor student who loves learning and it just comes to him. He draws with those deformed hands masterpieces and wants to illustrate comic books for Marvel. He composes music and is so utterly amazing! He struggles every single day with his health, but he has a wonderful aid who assists him at school when needed. Sean has taught us to never give up….we can accomplish anything we want if we just try.
Beautiful!
Wow. And all because you did some research on lyrics for a song. This whole post inspires me on SOoo many levels. Thank you for sharing this. I am truly uplifted and my mind is racing with all the thoughts going on. Education {self searching for knowledge} is such a powerful thing….and is such an on going thing in our lives. There truly is so much more to learn than we know. Also powerful?….. hope, love, and so much more.
Merry Christmas!
Love the story. Love U2. Love Katrina! Motherhood is the greatest career I will ever have. I am so grateful for this blessing/trial, and now a grandmother. Never underestimate the power of a mother’s love for her child/children.
I love U2 and I love this song. It’s cool to know the story behind it.
On point today
I loved this! Thank you.
Okay, are you ready for my novel? I try not to spam people’s blogs too often, but this struck a chord. Here goes:
My first son was born under similar circumstances. Fortunately for angels and skilled medical care and the tender mercies that accompany the hand of God in our lives, he was born via caesarean and so he wasn’t as damaged as he could have been. Unfortunately, he still was born dying. Fortunately we were in a hospital where they could pass him straight through the window into the NICU and resuscitate him, and they did.
He has brain damage, too. A week after he was born they ran an MRI and the pediatric neurologist gave us a prognosis that ranged from full scale CP to ‘just a little clumsy,’ with no telling concerning any mental deficiencies he might have.
Our son is an absolute miracle. It took him a long time to roll over, but a few weeks after he did that, he was crawling, and a few weeks after he started crawling, he was walking. He runs and climbs and likes to give his mother panic attacks at the playground, just like any other boy (I’d imagine). I feel the weight of the knowledge that not every boy with his history shares his outcome, but I can’t help but be grateful, and I know he has an important work to do.
He has a little bit of a speech delay, but we have the assistance of both public education speech pathologists and a special program at our local university, and he his improving leaps and bounds– another miracle.
I first followed a link to your post on how to keep you kids reverent during church without toys or books or treats. I did it because we rely on them as a staple to make it through sacrament meeting, and our kids were still the least reverent in the whole meeting, and I was ashamed and a little desperate. I remember reading your observation that was along the lines of, ‘if my kids can sit and watch Sponge Bob without moving for two hours, they can sit through a sacrament meeting.’ Initially, that was my ‘ah-ha!’ moment. Later, I realized my oldest never sits still- even when he’s watching TV, he’s running from one side of the room to the other, and jumping up and down in front of it. Hahaha. (That post still helped us, by the by– we’ve rid toys from sacrament meeting, at least… although he still has to have something in his hands to make it through primary…)
This is where the difficulty of our situation is. People look at our son, and they can’t see a handicap, so we feel a lot more judgement coming from people when we have a hard time keeping him in control. He loses his cool a lot more, and his breakdowns are a lot worse than other kids. They include hitting himself and banging his head on the floor, which is so painful for me. We are still working with him, and have had some excellent input from a local psychologist, but the weight is still heavy. Add to that two other little boys who are too smart for their own good and like to find as much trouble as possible, and I feel like it will be impossible for us to survive the next ten years. 🙂
I try to cast my burden at the feet of the Savior, and I try to take his yoke, and I can’t express how many times I have felt his hand lift and carry me. Even so, I wish I was more like your mother and Christy’s mother. My childhood taught me to be patient and understanding, and I grew up promising myself I would love and care for my children with all the tenderness of a loving mother, but living through it has made me realize how much more work I need, and sometimes, how ill-qualified I am for this, the greatest calling of my life.
Blah, blah, blah, I realize this is really too much information. My apologies. But thanks for sharing stories from women who survived this. It gives me hope that I can change and that, maybe, I will actually be a good mother by the time my boys are grown. 🙂
I am the mother of 3 very active boys and 1 girl who has made it through the younger years and is now in the midst of the teens. My thoughts for you are this…many times when we think others are judging us we are really just judging ourselves. The worst part about this self judgement is we compare us at our worst (we know all our flaws) to others best or at least their known best. “Their known best” that is where the heart of the problem lays. Someones chaos may be easier to hide or someone may be better at hiding it but it does not mean they do not have any in their life. The only person who has the right to judge you loves you more than anyone else and knows you better than anyone else. He also knows and loves your son -so He gave him to you. In the midst of your chaos let the knowledge of He who loves you lift you for you are a FANTASTIC mom.
Mmm- Thank you! I loved Elder Uchtdorf’s talk(s) on that subject– you are so right. 🙂
I guess, in the end, I just have to find ‘A Mother’s Hope.’ And part of that is ‘always remembering,’ just as you said.
Thanks for this! I’m teaching about bearing one another’s burdens tomorrow in Seminary and this will be perfect. BTW-Loved the movie with Daniel Day-Lewis, even with the profanity.
Thanks – different Christy though – Daniel Day-Lewis played Christy Brown in the movie My Left Foot. Similar lessons to be learned.