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Dr. Judy Coughlin: 'You have to hurt to understand'

Dr. Judy Coughlin teaches special education at Nova Southeastern University in Fort Lauderdale. Her Ph.D. is from the University of Miami in special education. She lives in Davie.

I write with the wisdom of 26 years as a parent of a beautiful daughter with spina bifida. When Katie was little, I pored through books looking for anything to provide a road map. I wanted to know how other parents got through this, if they ever stopped crying, if it ever got any better, if the pain ever stopped feeling as if it were ripping through my stomach or if I would ever feel “normal” again. I never found anything that touched my core, that gave me hope, or helped me understand the big “Why me?” question that, if we’re honest, I think we all ask at some time or another.

Now 26 years later, the journey has been long and hard, joyous and burdensome, lonely, and yet the most fulfilling, incredible and “bittersweet” experience of my life.

I share my insights hoping that some of you -- maybe just starting out, maybe tired and weary -- will find value in it. For others, it might be the wrong time for you to read this, and it won’t resonate for you, and that’s fine -- I only offer it with love for my fellow “handicapped” parents as a gift from me to you.

When I was six months pregnant, an ultrasound revealed that my much-wanted first child had spina bifida (an opening in her spinal column) and hydrocephalus (fluid on the brain). We were told it was one of the worst cases of spina bifida the doctors had ever seen in utero (prior to birth) and that she would never walk, never have bowel or urinary control and probably would be severely retarded. In shock from that diagnosis, my husband Jim and I were sent to a neurosurgeon who told us that having hydrocephalus prior to birth meant that her brain was compressed so severely that he could not determine if she’d have any brain function at all. He also told us that statistically 80 percent of parents and children with such a severe disability divorced, and became depleted financially, physically and mentally. What a depressing day! We had just learned that our child would never know whom we were, or be able to walk or talk -- and on top of that, we would probably go broke and get divorced. I left the doctor’s office crying and in despair, only to see the three nuns, with whom I was teaching at a Catholic school at the time, awaiting us with open arms of love and support. I was so grateful that they were there.

But the world as I knew it was crushed, over, fini -- and I wanted to die. “Why God?” “Why me?” Why us?" I cried. I wailed. I complained.

The rest of my pregnancy was a sad, lonely time. I hid in my house, refused phone calls, disliked every pregnant woman I saw and generally wanted it all to go away, but it didn’t, Katie was coming -- good, bad or otherwise -- and we had to prepare to welcome her.

I took matters into my own hands, transferring my medical care to Jackson Memorial Hospital in Miami, to be cared for by a “high-risk” gynecologist. I was a special-education teacher at the time and read everything I could on spina bifida. I learned that the outcome for children with spina bifida was better if born by caesarian section (often giving them less damage to their open spinal column) and that they needed early aggressive treatment to have the best chance at life. Armed with that knowledge, I made an appointment with the most wonderfully caring high-risk gynecologist at Jackson Memorial. We spent an hour discussing my case, and I grilled him relentlessly. I told him I wanted a caesarian and that if she were not breathing at birth, we wanted her resuscitated (or brought back to life). We also asked for a neurosurgeon to be present at her birth and to operate to repair her back on her first day of life. We also wanted surgery to implant a shunt for the hydrocephalus as soon as possible; that way she would have the best chance for intellectual development. Subsequently, I saw him weekly. When he determined her head was becoming too large because of the hydrocephalus, he scheduled a caesarian to deliver her at 32 weeks of my pregnancy.

Fast-forward to supposedly the best day of a woman’s life, giving birth to her first child. I awakened with tears. My husband’s sister drove us to the hospital in complete silence. I felt as though we were on our way to a funeral. I had chosen to have general anesthesia. I simply didn’t think I could cope with her birth. Well, she was born, blue (not breathing) but a whole team of special doctors -- all the right doctors -- was there at her birth. She was resuscitated and rushed to the neonatal intensive care unit (NICU), but not before Jim and his sister had a chance to see her. What they saw was a “Gerber baby” face, with lips like a little heart and a perfectly beautiful little face. Jim and his sister never forgot that moment. In awe of her seeming perfection, they also were all too aware of all her imperfections. While I was recovering, Jim went to the NICU to see his daughter. He scrubbed up and put on a sterile yellow gown. As he was waiting to see her, he overheard the nurses commenting on how disabled the baby was, and how she probably would not survive overnight. As they looked up and saw Jim, who told them that was his baby. I have always imagined that they felt awful at that moment.

Katie had her back surgically closed at seven hours old and her shunt surgically implanted at two days old. We hoped to take her home at two weeks old, but she contracted meningitis (a serious infection in the lining of the brain) and had to have the shunt removed and start a brutal round of treatment for the rare type of meningitis she had contracted (candida, or a type of yeast in the brain). The “Why me?” started again with a vengeance. Most babies with spina bifida are born with the opening in their back at the lumbar (from the waist down) area of the back, Katie’s opening was much higher on her back (thorax), and only 2% of children with spina bifida were that severe. That meant she couldn’t use her legs and would have neither bowel nor bladder control. Most babies with spina bifida have their shunt implanted and go home from the hospital within two weeks. Not Katie! Katie was the only case of candida meningitis the neurosurgeon had seen in 25 years. It felt like we kept winning the "what can go wrong’’ lottery! The treatment meant that her shunt had to be surgically removed, and every 10 days a huge (and I’m not exaggerating) needle would be put into the fontanel (soft spot) on the top of her head to drain off the extra spinal fluid from her brain. Without this procedure, her head would continue to enlarge, and the result could be severe mental retardation. So there I was -- a young, first-time mother watching my baby’s head go up and down like a yo-yo every 10 days, and as a special-education teacher wondering what this was doing to her potential intelligence. She didn’t get out of the NICU until she was 4 1/2 months old.

The hospital chaplain came daily and prayed over Katie. I was a bit skeptical about prayer then. But the way she prayed filled me with peace and contentment. While the prayer wasn’t being answered in the way I wanted (which was my desire for a miracle), I since realized that the prayer was being answered by providing me with hope and peace and strength to get through that time. In my youth and immaturity, however, all I could see was the sadness and the problems. I didn’t want to hear any comments like, “God doesn’t give you more than you can handle.” How did they know I wondered? I thought God had way overestimated me if he didn’t think this was more than I could handle. I didn’t want to hear how I was chosen to be a “special mother,” particularly since I was a special-education teacher already. I didn’t want to be a "special" anything. I didn’t want to be told how this would be a wonderful opportunity for growth. I much preferred to be a not-so-special mother in a perfectly ordinary life…thank you very much.

Then someone sent me a “Welcome to Holland” article in which the author equates having a baby with special needs with planning a trip to Italy…but while on your journey you find out that you’re going to Holland instead. Holland is not where you had intended to go; you had made no plans to go to Holland and, moreover, you did not want to go to Holland because you signed up to go to Italy! But once you are there (after you get over the jealousy of not going to Italy) you begin to see the good things about Holland, and you begin to notice that Holland has tulips and other beauty, too. While the analogy helped me somewhat at the time, what really resonated with me was that the writer didn’t try to sugarcoat it and tell you how grateful you should be to find yourself in Holland. She tells you – honestly – that for the rest of your life, while the other families are busy coming and going from Italy, you’ll feel pain, and she tells you that the pain of that loss (of the “perfect child”) will never go away, but if you stay with that pain, you’ll never get to appreciate the special, wondrous things about Holland (or the life of your child with a disability).

I read and re-read that over the years, trying to make sense of it. Sometimes it soothed me; other times I cursed Holland. “I hate Holland!” People in “Italy” don’t have to catheterize their infants, and deal with seizures, and their babies walk and talk on time, I thought. Holland wasn’t for me. Yet I was in Holland -- like it or not, planned or unplanned -- so eventually I stopped fighting it and learned how to live life in Holland. Do I still hate it sometimes? Absolutely. Do I still wish I had been chosen to go Italy? Absolutely. Would I return all my insight and wisdom, borne of experience, if Katie could walk, and talk normally, not need to be catheterized, have more friends, drive a car, go to college and marry? Yes!

But I learned so much. I learned that you have to hurt to understand, that only people who have lived in Holland truly get it and can understand your pain. I learned from Desiderata (an old rules-for-life narrative written by Max Ehrmann) that, “if you compare yourself with others” (like the people in Italy) that you may become vain and bitter, “for there will be greater and lesser persons than yourself throughout your life.” I learned to be gentle with myself because I and my child is each “a child of the universe, no less than the trees and the stars” (Desiderata), and we have a right to be here.

Fast-forward 26 years to the summer of 2011. I am a professor of special education at Nova Southeastern University in Fort Lauderdale. My privilege is preparing the future educators of our “special” children, and I have had the honor of having three of my previous college students graduate and become teachers of my own Katie. Because I am the parent of a “special” child, I share stories, insight and knowledge with my students that they might not otherwise learn from this sort of course. This occurs not because I am wonderful, but because of what life has taught me through Katie. Because of Katie, I became involved in parent advocacy with Jim. We joined Parent to Parent and the Spina Bifida Association of America, learning all we could about our daughter’s condition and what we parents could do to make better her life and the lives of other children with disabilities. Because of Katie I returned to college and obtained a master’s in special education. Because of Katie I reached for the stars and believed that if she had the strength, courage and fortitude to endure 20 hours of surgery at one time and to survive more than 20 surgeries in her lifetime, then I certainly had the capability to return to graduate school (in my 40s) to obtain a Ph.D. in special education.

It is because of my bittersweet journey with Katie that I am the person I am today. I’m stronger, more confident, happier, and generally a nicer person. Both her father and I have a contribution to make to this world because of Katie. Katie makes her contribution every day by spreading her joy and love. No one who has met our daughter hasn’t come away touched by her story, her life, her beautiful smiling face.

After 26 years, looking back, I see the tapestry of our lives. I saw the bumps and knots on the underside of the tapestry that I thought were the messy threads that were making up our often chaotic, stressful, overwhelming life. But when I turned the tapestry over, I saw how all those loose ends, knots and bumps were woven together into a beautiful tapestry that is my life today with Katie and her beautiful sister, Colleen. Now I can understand that I had to climb the mountain and I had to hurt to understand how it all fit together and how all of it worked together for some reason. Now I can look back in awe and see that I really can endure, that I really am strong and that Katie and I really do have worth.

My counsel: Take charge of your situation, join parent groups and seek out others in your situation. Learn from other parents who have paved this road ahead of you. Let yourself feel sad when you must. It is not easy. Acceptance does not come overnight, if ever. But it does get somewhat easier, or at least less painful, over time.

Now for the rest of the story: Many of the medical predictions were true. Katie has never walked. She never has had bowel or bladder control. She is developmentally delayed, dependent on us for daily needs and care. At 26, she still lives at home with me. Her life has affected our life in many ways. We’ve had very limited freedom over the years because of her seizures, and need for catheterization. In fact, her father and I went away overnight just one time in 20 years because hiring a nurse cost too much, and most friends and family were frankly too scared to be responsible for her care. It wore us down. Our marriage withstood years of non-stop stress. Yet it did not endure, and we ended our marriage after 23 years. But that’s okay because Jim and I have learned so much about advocacy.

Katie has taught us all so much. She had many friends when she was little. She was invited to birthday parties. She was the grand marshal at the Disney World parade on year, delightedly telling everyone, “Look at Mickey Mouse!” Middle school was harder; the friends matured, and she was somewhat left behind. But she made a few good friends who also had disabilities, and to this day they still burn up the phone lines. In high school, we chose the "special diploma" as her graduation option. That meant a significant reduction in homework and all the stress of the academic demands. She was happy, she had fun, and she was asked out by a boy (also in a wheelchair) and now has a boyfriend. She graduated in June 2004 and was the only graduate to “wheel” across the stage, with the biggest smile you ever saw, and to my surprise and delight, accompanied by cheers from her peers and the audience as she received her diploma. None of us had a dry eye.

Jim and another father worked tirelessly for years to educate legislators on the needs of children and families with special needs. Jim traveled to Tallahassee sitting patiently for hours in legislative offices to tell our family’s story. When he couldn’t get their time or attention, he created a placard in the shape of a boat that said, “Get on Board for Spina Bifida,” and left it on their desks. In a sea of business cards that boat stood out. Eventually some legislators listened, and new programs were enacted in Florida for children with special needs.

For the first time in Katie’s entire life, we were able to employ a companion and then a personal care attendant (PCA) every week. They attended to many of her personal needs and began to take her out into the community. Additionally, Jim took on the job of president of the Spina Bifida Association when Katie was only 2. One of his undertakings was to counsel parents who had just learned that their child had or would be born with spina bifida. He talked with parents for hours on end, always willing to provide support and empathy.

Because Jim was, and remains, a full partner with me in her care, her life outcome is positive. Jim also had to learn how to catheterize an infant. As Katie matured, as difficult as it was he still took an active role in her personal and physical care. If he hadn’t, I would have been unable to have any personal freedom. So I thank him for taking the journey to Holland with me. Even when we both longed for the freedom that we perceived to be in Italy, we worked hard to find the beauty that was in Holland.

These past few months, I’ve decided that if Italy was not an option and if Holland wasn’t where I wanted to be, I’d try a new country, maybe France. In France, I’m trying on a new concept called “freedom.” Due to the new programs in Florida I have been able to employ a companion on the weekends to make it possible for Katie to go out, like other girls her age. This friend, much more than a hired attendant, is a beautiful, fun-loving young woman who was once Katie’s friend in elementary school, and truly loves, and understands, Katie and her special needs. She learned how to strap down her wheelchair and how to drive her van; they crank up the music, and they’re off! The first time, she went out with her friend, she said, “Mom, now I feel like a real teenager.” It was the first time she had been out alone in a car without either of her parents, and she was 18 years old!

I live in Davie, a country-Western-themed town, and Katie has taken on the role of cowgirl with gusto. She’s a “redneck woman,” knows all the country songs and has the Stetson hat and boots to prove it. She and her friend have been to country-Western concerts, a country-Western club, the movies, dinner and the mall. In short, she is having a life -- a bigger, better, more fun-filled life than I ever expected for her. So it looks as though the future is brighter in France. In France, she’s experiencing a life I never thought possible for her. Although I once thought she’d never dance, she proved us all wrong -- she “dances” in her chair while her whole soul sings.

I cannot close without telling you how Katie’s life has impacted her sister Colleen’s life. Colleen grew up being shuttled to her grandparent’s house whenever Katie had to go in for surgery, so she learned early how to adapt to change. I’ve watched Colleen become a sensitive, loving, empathic young woman, with more wisdom and understanding than most teenagers. One example. She was just 5 years old, and we were waiting for the elevator at Boston Children’s Hospital. Another mother was waiting with us with her toddler in a carriage. That baby had a large tumor on one side of his face that pulled down the corner of his mouth, distorting one side of his face. He also had no arms below his elbows. The other mother and I waited in silence, sending silent messages with our eyes of understanding. As we entered the elevator, the baby began to cry. Colleen bent down, looked into his face and stated making funny faces to get him to laugh, which he did. As we exited the elevator, the other mom and I again exchanged glances with tears in our eyes.

I called Colleen over and said, “Colleen, you have such a big heart. I think many other children might not have been comfortable with that baby because of his handicap, but it didn’t bother you. I’m so proud of you.” She seemed surprised by my comment and responded, “Why, Mommy, he’s only different on the outside; he’s just like me on the inside.” I cried, in gratitude, for the life lessons her sister’s life had already taught her and would continue to provide for her (which many adults may never acquire). Among the lessons learned: You have to hurt to understand, to understand pain and suffering and to feel empathy for others. Once you understand that, your whole world opens up; you can see the bright side of the tapestry, and you can dance. Perhaps we’ll dance a different dance in France. Now that the veil has been lifted from my vision, France seems full of possibilities.

Now I see a brighter and more beautiful future reflected in both my daughters’ eyes.