The Secret about Parents of Kids with Special Needs

 

Alisa and Anna Chilton

Alisa and Anna

I follow a lot of blogs. One of my favorites is Special Needs Mom, by a gifted writer named Suzanne Perryman. She posted an entry on April 14, 2013, that pops back up in newsfeeds occassionally and during the past week, I’ve noticed that several of the moms of students in my program have reposted it. Click here to read the post.

As I re-read this post, I realized that I know a secret about parents of kids with special needs, a secret they won’t tell you because they probably don’t even realize it …

The secret is that parents whose kids have special needs are brave.

What else do you call a person who has faced their worst fear and emerged changed for the better? In the past seven years, I’ve met hundreds of parents and I’ve only encountered one who was bitter, a young mom who’s daughter has cerebral palsy and who told me that her daughter was too disabled … more disabled than any other child and couldn’t possibly be part of my program. The rest of the parents I’ve met are … well, they are just brave. And brave people rarely tout their bravery.

They didn’t start out that way.

They started out on the road to parenthood just like I did … with a vision that did not include hospitals, therapists, resource classrooms. They were a couple with a shared dream of creating that perfect family that we all want. Maybe they imagined their child would be a great athlete or a great artist or a great engineer. While they were expecting, they imagined all those life events their child would experience … playdates, school plays, college, a wedding. For some of them, that imagining came to a halt during pregnancy, for others the end of the dreams didn’t come until later.

But at some point, life said to the parents I know:

“Sorry, you don’t get that dream. You better get busy trying to imagine a different one.”

And so that’s what they did.

 

Connor and Brian Furber

Connor and Brian

 

They’ve taken the disappointment, the fear, the anger that they must have felt and have turned the other cheek. They refuse to let anything negative shape the rest of their lives or cast a shadow on the lives their children will have. They were dealt a blow that must have laid them flat on their backs, but they’ve gotten back up again, put a smile back on their faces and they’ve re-imagined the future without rancor and without regret.

There must be times when the heartbreak returns. Maybe a girlfriend tells them about her daughter, who made the cheerleading squad or maybe their buddy tells them about teaching his son to drive – and there it is … that pain, that regret, that feeling of, “Yeah, that’s what I thought I’d be doing.”

I think bravery is doing something, even when you don’t want to or are afraid and never allowing yourself to become resentful about it. Which is exactly what the parents I know do.

I’ve experienced a miniscule taste of what it might be like. Austin began to lose touch with his classmates around 9th grade and for the rest of his high school years, we were caught up in the drama of drug addiction. A few weeks ago, I ran into the mom of one of his kindergarten classmates and was startled when she told me that her daughter had graduated from college back in May.

“Wait a minute,” I thought to myself. “If Austin hadn’t spent six years using drugs, he’d be graduating from college now?” For a brief time, I let myself think about all that we missed … prom, high school graduation, fraternities and campus visits.

And as I thought about those lost dreams I’d had for Austin, I wondered if I would have turned out like that one parent I met who was bitter that her child had cerebral palsy or if I would have been brave enough to embrace an unexpected and uninvited path.

Once I said to a parent, “I don’t know how you do it,” not realizing that this would be offensive to her. Parenting her child was not some onerous task, some hardship she had to endure … parenting her child was a gift in life.

Was she like that to start with, before she knew her child would have a disability?

Or did having a child with a disability turn her into a resilient and brave woman who could accept that she was going to have to travel a road she never asked to travel?

 

Ben, Carly and Gina Bender

Ben, Carly and Gina

 

Some of the bravest parents I’ve met are ones whose adult children have disabilities … those parents who insisted on bringing their children home from the hospital back in the days when doctors told them not to.

One father told me that when his son was born, in 1960, the doctor said,

“Put him in an institution. You’ll visit him once a week at first, then every six weeks and before you know it, you’ll never even remember you had him.”

Those parents brought their children home when there were no resources, no therapists or early interventions, when their children were not even allowed to go to school. I know so many parents who have retired and still have their children living at home and imagine that they worry every single day about what will happen if their children outlive them. But that doesn’t stop them from fully embracing the path life placed them on, despite what they might have imagined one day so long ago.

All I know to say is … that’s what bravery looks like.

The next time you see a parent of child who has special needs, remember this secret they will never tell you … when you see them in the grocery store or at your school or at your church …

You are in the presence of a person who is truly brave.

And the next time you are disappointed in something or life hands you an unexpected twist, and take inspiration from their bravery.

In Sickness and In Health

Image

I usually write about the people with special needs who are part of my arts education program or I write about being the mother of an addict in recovery. Today, I’m writing about a totally different topic…my marriage. I’m close to being an “expert” on the topic of marriage, as I’ve been married for over 28 years to the same man, who was my sweetheart for five years before we said, “I do.”

What prompted me to think about marriage is that I went to a wedding last weekend. The groom has been one of my daughter’s closest friends since they were in diapers and he is the first one of her close friends to tie the knot. He and his bride looked like Barbie and Ken, so gorgeous and happy. When the minister said, “Who gives this woman to be married to this man?” I thought, “He’s not a man…he’s a little boy who’s diapers I changed; a boy who was convinced he was Captain Hook for about two years; a boy who loved to eat Reece’s Pieces…very deliberately, one at a time…for hours.”

As I teared up, Alan put his arm around me. Maybe he thought I was thinking of our wedding day, of how quickly the years have gone by, of how incredible it is to realize that we’ve been together more than half of our lives. I was thinking these things but I was also thinking that I’ve taken for granted that I will always have Alan by my side and that we’re too old to take anything for granted anymore.

Debra and Alan first date

When I was 25 and again when I was 40, I had intestinal resection surgery to deal with my diagnosis of Crohn’s disease, a chronic and progressive disease of the intestines. Alan’s had to face the possibility of my death and he’s had to nurse me through everything from C-sections to back surgery. The worst health issue that Alan’s ever had was a torn ACL. Because I live with a chronic illness, I’ve obviously thought about the possibility of my death and have sometimes agonized over the thought that I might not be around to watch my children reach adulthood or to be a grandmother.

I’ve worried about what my children would do without me but never about Alan. He’s a man, after all, tough and capable. I’ve always figured that I’d go first and that he’d get married again or would spend the rest of his life remembering me with affection but would move on without much fanfare, remaining strong for our kids. I’ve never doubted his love and devotion but I guess I’ve always thought we were two individuals who decided to spend our lives together and who would eventually be okay when one of us was gone and the other had to return to life before those “I dos.” I’ve been oblivious to how old we’ve gotten and told myself that one of us dying…well, that won’t happen for years. Only we’re not so young anymore and Alan wouldn’t have been okay if something had happened to me. I know this now because the tables have turned and for the first time in the 32 years that I’ve known him, Alan is facing a health crisis.

It’s nothing he won’t recover from but it is something that involves a serious major surgery, scheduled for two weeks from now. It will involve a week in the hospital, then a 6-week recovery and it will involve a lot of pain and some alterations to his lifestyle. I know he will be fine, I’m grateful that a routine procedure discovered something that isn’t critical now but would have been a death sentence a year from now and I have no doubt that he will recover completely. But imagining, even for a minute, that I might lose him is something I wasn’t prepared to think about. No, if something had happened to me, Alan wouldn’t have been able to just move on and if he goes before me neither will I.

Debra and Alan at Conner Wedding

As the bride and groom pledged to be there for each other through sickness and health, I thought about the power of those vows we take. Two young people choose each other and then they stand in front of God and everyone they love and promise to hang in there, even when it gets hard. Those words we say to each other, when we are too young to really understand what they mean, are what bind us together through the years and the ups and the downs, through the joy and the tears and the loss. When people take those vows, they cease to me “you” and “me” and they become “we.” Alan and I have been a “we” for so long that I can’t even contemplate what it would mean to be “me” again…and I never want to find out.

Being married isn’t easy. Marriage requires a selfless resolve to remember those vows every day and to work through those things that make it difficult to live with the same person day in and day out. Marriage means that sometimes you may not get what you want and sometimes, you might not even get what you need. But it also means that if you stick with it, your relationship with each other will evolve into an intricate tapestry with threads of tragedy, sadness and pain woven together with threads of joy and contentment. If you stay the course, your marriage will become a union of you and me that cannot be put asunder because it’s woven together so tightly that it’s bonds are stronger than you could imagine when you were young and so in love. And when you’ve been married long enough, you will know that you are a different person, a better person because of your spouse and because of all the things you’ve shared in your life as husband and wife.

Because of this current health crisis, I realize that I cannot take being married for granted any longer because it won’t last forever…one of us will leave our marriage someday. The other one won’t be ready when that happens and the other one will never be the same. But at least whichever one of us is left behind will have a beautiful tapestry to wrap around our shoulders.

Debra and Alan with kids from NoAla

My Heart is Heavy

Me with our first group of students, including Darby, in 2008.

Me with our first group of students, including Darby, in 2008.

As we come to the end of the 6th program year of the Johnny Stallings Arts Program, I have been reflecting on all that we’ve accomplished in the past 12 months. We have experienced some incredible highs:

  • Project UP was selected to perform at the National Dance Day Gala in Los Angeles.
  • They were victorious at regional dance competitions in Alabama, Georgia and Tennessee.
  • We have doubled the number of people we are serving.
  • We completed the renovation of part of our building to house our new day habilitation program for adults.
  • We have re-vamped and improved our monthly social events for adults with special needs.

Personally, there have also been some tremendous high points this year:

  • I launched this new blog and website and have attracted over 25,000 readers in less than 90 days.
  • I completed 22 hours towards an Executive MBA in Social Enterprise from Columbia University and received a Certificate in Business Excellence.
  • I graduated from Leadership Huntsville Class 26.
  • I was honored by the Women’s Economic Development Council for my contributions to the community.
  • My son celebrated one year of sobriety.
  • My daughter moved back home after two years in South Carolina.
  • And Alan and I celebrated 28 years of marriage.

And yet, I feel so low today because no matter how high the achievements have been, the losses this year have been staggering. We lost our beloved Darby Jones on October 28, after her courageous battle with leukemia. One of our students underwent a kidney transplant at the Mayo Clinic and is still recovering from the surgery. Another student is slowly recovering from a series of strokes and grueling rounds of chemo in her battle with leukemia. We lost an adult in the day program to colon cancer, a beautiful man who we immediately fell in love with and lost way too soon. A three-year-old girl has spent the last few months in outpatient treatment for various health problems and another young child is in a body cast, recovering from hip surgery. Just this morning, we learned that a member of Project UP, who should be receiving his trophy and being recognized as a high school senior at our recital on Saturday, will instead be recovering from surgery that is scheduled for Friday to determine if he has cancer or not.

And last Thursday morning, we lost a precious 9-year-old girl, an unexpected and heartbreaking blow to our program. When I started this program, it didn’t occur to me that the volunteers I recruited might have to face loss and pain nor did I realize that along with watching our students achieve great personal milestones, I might also have to watch them die.

Project UP with Melissa, Claire and Hayley in Los Angeles this summer.

Project UP with Melissa, Claire and Hayley in Los Angeles this summer.

Melissa, our Program and Operations Director, is expecting her first child any day now … Merrimack Hall’s first staff baby. While we were at the visitation on Sunday evening, Melissa reminded me that she began her pregnancy at Darby’s funeral and is ending it with the loss of another student … and that was before we learned the news of our other student possibly having cancer.

What a contrast … a new life beginning while others have ended.

I’m reminded of something I heard in my Sunday School class a few years ago. Dr. Donn Wheeler, an esteemed obstetrician, was leading our class in a discussion about the virgin birth. Dr. Wheeler said something like this: I’ve delivered thousands of babies over the course of my career. I can tell you the mechanics of how an egg and a sperm come together to form life and I can explain every step from conception to delivery. I know the science and the medicine like the back of my hand.

And yet, at each birth I attend, I’m reminded of the miracle of life and even though I can tell you the ins and outs of how that life came to be, it’s no less a miracle every time.

As I’ve become involved with people who have special needs, I’ve thought of Dr. Wheeler’s words many times … about the intricate marvel that is human life and about how easily things can go off course.

I’ve thought about how lucky I am that my pregnancies were uneventful, that my children were not injured during birth, that all of their chromosomes lined up in their proper order, that every molecule in every cell came together in just the right way … at just the right moment … to produce a healthy baby.

I’ve thought of how tenuous life is, how easily things can go awry, how fine the line is between complete health and something going terribly wrong.

On Thursday, Melissa and I had to tell the volunteers and parents that one of their classmates had passed away and the reaction from the teenagers who volunteer in the class was painful to see. I feel responsible for their pain because I’m the one who started this program, encouraged teenagers to get involved with us and put them in the position of laying their tender hearts on the line. I know in my head that being involved with JSAP is enriching the teens’ lives and that they are better people because they’ve allowed our students into their hearts but my heart is heavy when I see them grieving, questioning “why” and hurting so deeply.

On days like this, I fight the urge to say, “I can’t do this anymore.”

I said to Alan this morning:

“I wish I could do this without getting so personally involved”

He answered:

“You can’t because that’s why the program works … because everyone is a family now.”

I know he’s right and I remain committed to the work we are doing but sometimes, it just sucks, plain and simple.

Our students at the 2010 Dream Big! spring recital.

Our students at the 2010 Dream Big! spring recital.

Winston Churchill said, “In each person’s life, there comes a moment when they are figuratively tapped on the shoulder and offered the chance to do a very special thing, unique to them and fitted to their talents. What a tragedy if that moment should find them unprepared or unqualified for that which could have been their finest hour.”

I got that tap on the shoulder in November 2008, when I was first inspired to start a dance class for children with special needs. That tap on the shoulder led me to do something I never could have imagined, it’s introduced me to people I never would have met and it started a chain reaction that created an entire community of lives that never would have intersected if it hadn’t been for that one little dance class.

Until this year, I thought my tap on the shoulder was only going to be a source of happiness but the truth is that happiness and sorrow have to come as a pair…without one, you would never appreciate the other.

I wouldn’t trade knowing Darby or Anthony or Genavieve for anything in the world and I would bring them back if I could, but I can’t. If I could, I would give my own health to prevent other students from suffering, but I can’t. If I could, I would guarantee every teenager who decides to volunteer with us that nothing bad will ever happen to any child they meet and love through our program, but I can’t.

All I can do is remind myself every day that I got tapped on the shoulder for a reason and that tap on the shoulder created a family, so at least all of our hearts share the same pain. Winston Churchill never said that answering that tap on the shoulder would be easy or that it wouldn’t involve getting hurt but he did say that if we answer our tap, it will be worth it.