Rick was away, unfortunately. I say “unfortunately” because I missed him so much, but also because he actually enjoys grocery shopping, and we needed some groceries. When Rick shops, he uses coupons and compares the prices of every item before putting something into the cart. He does not brand-name shop; rather, he buys the least expensive items. He can tell you the price of everything in the cart and how much money he saved; sadly, I cannot say the same.
When I shop, it’s always my goal to get through the store as quickly as possible, so I put all the items on my list into the cart in minutes, and off I go. Maybe it’s because for almost twenty-four years I always had a baby, toddler, little kid, or big kid with me. Sometimes it was one, and other times I would be shopping with several of my children. The only pause was in the produce section, where I really enjoy teaching my children how to pick out the best fresh fruits and vegetables.
Bridget was brushing Bella’s hair, and I gave my little sweetie a kiss and left for the grocery store. The cold air managed to make its way through my winter coat and the double layer of insulated clothing as I scraped the ice and heavy wet snow off our truck. We had not had a garage for seven and
a half years, and on this particular morning a garage would have been a dream. The untouched foot of softly fallen snow was now shoveled, driven on, walked on, and rained on. It was a slushy mess, and as I drove, the white snow turned to gray and brown.
By the time I reached the grocery store, the truck had warmed up and I could no longer see my breath. I sat in the parking lot for a moment, enjoying the warmth. The parking space next to me was for people with disabilities. When Bella is with me, I use these spaces all the time; they help to be closer to the doctors’ offices or stores. That disability placard was a hard thing to apply for, simply because it carried with it so many raw emotions. It was a hard moment when it came in the mail and I opened the envelope.
A woman in a minivan pulled up next to me in the disability space and put her placard on the mirror. Her boots hit the slush and she almost slipped. She kicked away as much of the snow and slush as possible, and as the side door slid open, there was a little girl in a wheelchair. She was bundled up in a pink coat and wore a pink hat that appeared to be hand knit. There were golden curls peeking out under the rim of the hat. The woman, whom I assumed was her mother, pressed something that pulled out the lift and safely brought the girl out of the van and to the ground. The little girl was smiling and sticking out her tongue as if to catch snowflakes. The mom smiled back and said, “Are you catching raindrops?” She quickly grabbed her purse and pushed her daughter into the store.
Another car pulled up into a disability space and an elderly woman got out very slowly. Maybe it was because she
did not want to slip, or maybe it was hard for her to move. As she stood up, she was attempting to adjust her nasal cannula with her gloves on. Her oxygen tank hung over her shoulder, concealed in a black canvas bag. I went over to her and offered her my arm and cover under my umbrella.
She cheerfully said, “Well, good morning, sunshine! Thank you for walking with me . . . I had to come out in this rain for my prescriptions, but, oh well; I think I’ll get a few things while I’m here.” We picked out some apples and bananas together and talked for a little while. My habit of rushing through the store vanished, as I was intrigued by the joy of this woman who was carrying a lot of heavy burdens.
For nearly seven years, I’ve watched these individuals and families through the eyes of a mother with a child with disabilities. Like anything in life, you have no idea of the daily challenges until you’ve walked the journey yourself. I thought as a neonatal intensive care nurse that I understood their daily struggles, but I didn’t know the half of it. When they pull into the disabled parking spaces, or lug their bags and medical supplies through physicians’ offices and hospital corridors, or wait patiently in the waiting rooms of the doctors attending their loved ones, I watch them and think about the huge effort it took for them to get through their morning care and out the door. Details are everything, and missing one detail could mean a medical crisis. Their burdens are heavy, but I’ve been inspired by the resiliency and joy in the many people I’ve met on my journey.
We are different nationalities and religions and work in different careers and live in different neighborhoods in different parts of the world—but we are united by our children.
We have suffered the sting of a challenging diagnosis, survived doctor visits and hospital stays. We have managed to navigate a complex and confusing medical world with long waits from one answering machine to another, only to think we’ve received a solution once we finally reach a real person, but then realize we were led down a dead-end alley by a health insurance company—again and again.
We frequently have to demand care, even basic care, and spend countless hours researching medical issues and finding the right physicians, therapists, and health care supply companies. In addition to usual daily care, there are always therapies and exercises to do, medications to administer, and medical supplies to clean, restock, and order. We have to thrive on very little sleep and learn how to be champions with handling stress. We carry hand sanitizer in our purses, pockets, bags, and cars, and use it frequently. We have specialized radar for germs, and cringe whenever someone coughs or sneezes around our special loved one.
We are united as one with our daily frustrations, worries, cares, exhaustion, and, yes, immeasurable joy. We have learned to stand tall and be a light in the darkness, and we have learned there are blessings even during the most challenging times.
A friend of mine, who has a special-needs child, sent a story to me that I’ve read many times. It’s sweet and has a powerful message. It was written in 1987 by Emily Perl Kingsley and is a metaphor of the differences between the excitement in having and raising a normal, healthy child and having and raising a special-needs child. Here it is:
Welcome to Holland
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas of Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, “Welcome to Holland!”
“Holland?” you say. “What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a
different
place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around . . . and you begin to notice that
Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that experience will never, ever, ever, ever go away . . . because the loss of that dream is a very, very significant loss. But . . . if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.
Bella was our eighth baby and our second trip to Holland. Our first trip to Holland was with our son Gabriel Michael, who was our fourth baby. He was born and died in our arms two hours after his birth, and with his death went all our hopes and dreams for his life. Through the tears I saw many beautiful things in Holland, but never ever wanted to return. We were brought back to Holland with Bella, and once again, all our hopes and dreams for her life were like fuzzy dandelions blown away in the wind. Like the metaphor of the excitement of going to Italy and seeing all the wonderful sites there, only to be disappointed at being told we were not going to the Sistine Chapel, or to the Coliseum, or to any of the magnificent sites in Italy, our plans had been changed and we were going someplace else.
The truth is that Rick and I have been to Italy six times with our other children and have enjoyed the splendor of every possible place in Italy. It’s been a complete joy raising Elizabeth, John, Daniel, Sarah Maria, Peter, and Patrick. It’s been a complete joy sharing with them the day to day,
watching them learn and grow, cheering them on with their accomplishments, and holding them during their disappointments. We are so proud of each and every one of them, and through the years we have enjoyed the beauty and brilliance of everything Italy has to offer.
However, I would not trade going to Holland for the world. Bella is almost seven, and raising her has shown us the beauty and brilliance of everything in Holland. For it was in Holland that I learned a new language; it was in Holland that my eyes were opened to the gifts of this new land; and it was in Holland that I learned pure joy and some of the most important lessons in life.
Raising Bella has been a different experience from raising our other children. Instead of concerning myself with breast-feeding and growth charts, I was worried about my baby surviving another day. Instead of healthy pediatric visits, our schedules were filled with time-consuming visits with several specialists. Instead of taking my little girl to soccer camps and ballet lessons, we do physical therapy. Instead of buying dollhouses and tricycles, we’re always looking for adaptive toys and enabling devices. Instead of running freely through spring meadows, my little girl is in her walker, taking baby steps across our kitchen floor.
Instead of homeschooling as I’ve done for all our other children for the past eighteen years, I homeschool Bella in a very different way. We read books and sing songs, but we also do occupational therapy, physical therapy, riding therapy, music therapy, and massage therapy. This is my new world of homeschooling, and I would not trade this time with Bella for anything in the world.
Through the years, my family has gotten to know Bella
and her cute, spunky personality and all her health issues, and what makes her happy, and what she does not like. Our dear Lord knows us and is a good example of how we, as parents, should know our children.
O L
ORD
, thou hast searched me and known me!
Thou knowest when I sit down and when I rise up;
thou discernest my thoughts from afar.
Thou searchest out my path and my lying down,
and art acquainted with all my ways.
Even before a word is on my tongue,
lo, O L
ORD
, thou knowest it altogether.
Thou dost beset me behind and before,
and layest thy hand upon me. (Ps. 139:1–5)
For the past seven years, as with all our children, we have been getting to know our little girl. Her physicians and therapists have been great blessings in our lives. I’ve talked about several of them as part of our getting to know Bella and her issues. One of her biggest issues is breathing, and Dr. Lisa Elden and Dr. Suzanne Beck have used their expertise to assist us. Dr. Elden, who is an exceptional ENT (ear, nose, and throat) physician and skilled surgeon, did Bella’s bronchoscopy when Bella was seven months old. This test provided valuable information about Bella’s airways and gave us direction in her care. Dr. Elden also put in Bella’s ear tubes that were a lifesaver whenever Bella was congested. When Bella was two and a half years old, Dr. Elden removed her adenoids, which greatly improved her breathing. Dr. Elden is kind and pleasant, and we just think the world of her. Her
care of Bella was superb, and Bella did remarkably well with each procedure.
Dr. Beck is an extremely bright physician who is in charge of the Children’s Hospital of Philadelphia’s Sleep Lab. Through the years Bella has had a few sleep studies under the care of Dr. Beck. These studies have given us a lot of very specific and important information regarding Bella’s breathing and sleeping patterns. Dr. Beck has always been thoughtful and generous with her time with us. She explains things really well and answers all our questions. Under her care, Bella has been on a BiPAP (bilevel positive airway pressure) machine for several years and has done really well. When she’s on the BiPAP, Bella does not have apneas, and her oxygen levels are very good when she sleeps. Because of the BiPAP, Bella is able to get a good night’s sleep and has a lot more energy throughout the day.
Francie Mitchell is Bella’s physical therapist and is one of the most cheerful people I’ve ever known. She thoroughly enjoys her work and cares deeply about her patients. Bella loves her sessions with Francie and smiles the entire time as she’s listening to her music and bouncing, stretching, reaching, and standing. Francie is a very bright and talented physical therapist, and she has been a great guide for us with learning how to keep Bella strong and healthy. She’s taught us how to use all the different balls and therapy toys with Bella.