Bella's Gift (12 page)

I wish that doctors, like parents, would choose their words more carefully and understand that when they say “lethal diagnosis” it can too often lead to deadly outcomes. “Death and life are in the power of the tongue” (Prov. 18:21). God Himself instructs us to use caution with the words we choose to use.

Rick and I are not alone in this experience. During the
past seven years, I have become immersed in the world of Trisomy parents and their children. I frequently talk or correspond with parents. I have read every article and watched every video I could find. What I have learned is that doctors always refer to Trisomy 18 infants as having a “lethal diagnosis” and always say that the children are “incompatible with life.” All the Trisomy 18 parents I have spoken with have faced this same battle. The only place where we did not hear Trisomy 18 referred to as “lethal” or “incompatible with life” was at the Children’s Hospital of Philadelphia.

When parents hear the word
lethal
, it places fear into their minds and gives them a sense of hopelessness. When we watch the nightly news, we hear about people dying from lethal attacks, lethal weapons, and lethal drug doses. In all those situations, the people are already dead, and we are learning about what lethal thing killed them. To refer to a child who is still alive as having a “lethal diagnosis” is grossly inaccurate; many children who have Trisomy 18 survive and thrive, even into adulthood.

The tongue of the wise dispenses knowledge,
but the mouths of fools pour out folly.

A gentle tongue is a tree of life.

(P
ROV
. 15:2, 4)

Moreover, any good physician knows that a thorough patient exam and evaluation is necessary to make an accurate diagnosis. After reviewing the patient’s history and analyzing the tests and labs, then a physician can come to a conclusion. Making a diagnosis should be a thoughtful process. Sadly and too often in the Trisomy world, a physician will get the
Trisomy 18 results from an amniocentesis or blood tests and quickly write the child off without any further evaluation as to what his or her issues are. It’s a sweeping assumption that is careless and irresponsible.

Trisomy 18 is a serious diagnosis, but physicians need to first look at their patients and see what the issues are before disregarding the infant and eliminating all hope. If they fail to do this, they abandon their patients and should not be practicing physicians. Patients deserve better. A friend of mine once said that “the MD after their name does not stand for ‘Medical Deity’!” I wish doctors would realize they should not be playing God.

What follows after a Trisomy 18 diagnosis is the long, drawn-out, bleak list of what the child will surely suffer from and will not ever be able to do. It’s the “will never” list. Rick and I painfully sat through the “will never” list many times, hearts heavy, but hopeful that Bella would prove them all wrong. We were told Bella would never sit up, never walk, never know us, never talk, and that she would be a vegetable who would never live past a month at most. But, essentially seven years later, Bella does know us. She plays with her toys and frequently looks up and smiles. She is a spunky girl who loves being silly and making everyone around her laugh. She has her favorite music that she loves listening and dancing to, and she loves books.

Bella walks all the way across the kitchen floor in her walker. She works hard at walking and knows she’s done something great when we tell her how proud we are of her. She may not speak English, but she speaks “Bellish” quite well, and we always know what she’s saying. Like any of our children, Bella
is her own unique person and will do things in her own way, in her own time. We think she’s perfect and love her just the way she is! But the fact is that what Bella (or any other person with special needs) “can do” does not determine her value. What truly matters is that Bella and other children like her are all created in the image of God. My prayer is that they be treated with love, dignity, and respect, not dismissed and left to die.

The summer of 2008 was the summer of small miracles: firing hospice, Bella’s g-button surgery, and figuring out how to balance family life. These small miracles were wondrous affirmations of God’s compassionate hand acting in our broken world. C. S. Lewis wrote, “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.”

As the summer months went by, the “Happy Birthday Bella” sign still hung in the doorway. Determined to make every minute count with Bella, we recognized those moments as pure gifts and worthy of joyful, grateful celebration. As the weeks went by, we changed the birthday sign from one to two to three weeks. Eventually weeks turned into months and months turned into years. Bella continued to beat the odds. Hope endured. Bella’s story is small and simple, but perhaps that purity makes it possible for us to see the miracle of her life. Her large life is written in small letters.

7
LOVE IS HEROIC

•
Rick Santorum
•

Heroism is endurance for one moment more.

—GEORGE F. KENNAN

W
hen I hear the word
heroic
, my mind conjures up images of a soldier single-handedly taking out an enemy position or those New York City firefighters rushing into the World Trade Center on September 11.

Webster’s Dictionary
defines
heroic
as, among other things, “brave, courageous, extremely noble and self-sacrificing.”

To some degree, all parents engage in acts of heroism in raising their children, because we disregard our own desires
to meet their needs. The superhero in our house under that definition is Karen, the love of my life and my wife.

When I met Karen, she was a second-year law student who was working part-time as a nurse. She graduated from law school a week before our wedding with a job in hand to clerk for a federal judge in Pittsburgh. She delayed the start of the clerkship to knock on doors with me in what every political observer, and I mean every one of them, believed was a quixotic run for US Congress.

After our miraculous win, Karen was all set to start her legal career. Unfortunately, just after the election the federal judge rescinded his offer to Karen. It turned out the judge, who was a Democratic activist before being appointed by the court, was a good friend of the congressman we defeated. Since he approved her delayed start until after the election, we assumed he was going to honor his offer. It turned out the offer was good only if I did what he expected of me—lose.

You might be thinking,
no big deal.
She was a law review graduate of a well-respected law school in town, the University of Pittsburgh, plus the wife of a congressman. Piece of cake! That may have been true if it weren’t for her physical condition. We had found out just before Labor Day that Karen was expecting our first child, Elizabeth.

Karen wanted to continue working until the baby came. Back then, Pittsburgh was a tough town for women in the workplace, much less pregnant ones, even tougher on Republicans, and toughest yet on the wife of that conservative upstart, Rick Santorum.

We decided that after a grueling election, my starting a new job that would take me out of town three days most
weeks and getting ready for our first child in that environment would max out the stress meter.

And so it was, from the very beginning of our marriage, Karen put her professional dreams on hold to put family first and help me pursue my calling. That was only the beginning. She was an integral part of two campaigns for Congress, three campaigns for the United States Senate, and a national election for president, during which we personally campaigned in twenty-five states before exiting the race.

She not only held down the fort, but in several of the campaigns—particularly our first race for the House and even more so during our first Senate race—she hit the campaign trail. In 1994 the biggest issue in our campaign was health care because my general election opponent was the Senate sponsor of “Hillarycare.” Karen was a neonatal intensive care nurse with a law degree, with an emphasis on health law. She turned out to be our secret weapon, traveling the state and giving her strong and well-grounded arguments against government-run health care.

Then there was the daily heroism of being a mother at home. There is no more important and fulfilling, while at the same time humbling and at times demeaning, job than running a household. Karen dedicated herself to it every day, and thanks to my campaigns and serving in the House and Senate, they were long days.

During our first four years in the House, we kept our home outside of Pittsburgh. We rented an apartment in Alexandria, and Karen and I would drive back and forth to DC every week for session. After I was reelected in 1992, our son John was born, and it became a bit more of an ordeal to travel back and
forth. We also decided right after that election to take a leap of faith and run for the United States Senate in Pennsylvania.

Because of the proximity of Philadelphia and Harrisburg to DC, I knew there would be many a night that I would travel up to the state to campaign. We decided to keep the family at home in Mt. Lebanon and I would sleep at “Club Fed,” as we called it. Many members of Congress who, like us, did not come to Washington with a hefty balance sheet, slept in their offices and used the House gym locker room to shower and get ready for the next day. What that meant for Karen, of course, was more time on her own caring for two children.

We finally moved to Northern Virginia after a year in the Senate, trying to go back and forth to our home in Pittsburgh and living in an apartment in Arlington. It seemed as if we were on the road between Pittsburgh and DC half of our life; and first with two, then with three children under age four, it was too much. We had to decide where to plant the family for my time in the Senate.

It was not an easy decision. While my family had all moved away from Western Pennsylvania, Karen still had living there her parents, nine of ten siblings, and some thirty nieces and nephews. They are a tight-knit family who get together all the time and are very supportive of each other. Again Karen put our marriage and family first in 1995, and we moved into a home in Herndon, Virginia, about twenty miles outside of DC.

The 2012 presidential race was a difficult and stressful journey, but for sheer effort and time away from family, the 1994 Senate race was the worst. I’ll never forget an incident that was a wake-up call during that year of transition in my life, 1995. Karen and I were changing out clothes for the
kids, and Karen pulled out a pair of boy’s pajamas and said, “Aah . . . Johnny loved these pajamas; he wore them to bed almost every night.”

I looked at the pajamas and said, “I don’t recall ever seeing those!” I vowed then never to let anything consume me as that race had done. That moment helped send me on a different path to be a better husband, father, and follower of Jesus Christ.

In Virginia, our lives slowed down some, but the days were still long, and there was the constant travel to Pennsylvania. I pledged to visit every county every year, and I did so for my twelve years in office. Karen was always there, supporting this time-consuming job.

Our children were now getting to be of school age, and we had to make a decision on schools. We were still traveling back and forth to Pittsburgh on a regular basis on weekends, and during the weeks the Senate was not in session. If we put Elizabeth in school, that travel would be dramatically curtailed. In addition, when I was in DC, I was routinely gone from the house at 5:30 a.m. and didn’t get home until 8:00 p.m. Karen began looking into the possibility of teaching the kids at home. After much prayer and research, we decided to give it a shot for just one year.

It worked out beautifully for everyone that year, so we decided to try one more year, adding John to the mix. We ended up making eighteen one-year commitments to school at home, and it has made all the difference for our family. We have an incredible bond with our children that I would have never had given my schedule. Teaching the children at home allowed our family life to be in rhythm with my Senate schedule. With the exception of one year when I solo taught Daniel
in first grade, Karen carried the vast majority of the responsibility for educating our children.

After Gabriel’s death in 1996, we had three more children. In spite of the craziness that comes with caring for a hockey team–sized clan, Karen and I were hoping for even more. We realized that as much as you love the first child, and you don’t think you could possibly love another child as much, you do. Each child, I think, increases your capacity to love, so we hoped for God to continue to bless us with more children. Eventually, with time the window of opportunity for another baby closed, and we accepted the fact that God had no more children for us. That’s when God surprised us with a very special gift.