Fearing My Daughter

A Father struggles with the birth of his Downs Syndrome daughter, “’If she dies as a result of her surgery the pain will be over for all of us,’ we thought.” 

grace-and-family-at-usna-featured-w480x300“It’s a girl!”  The nurse announced. After the birth of seven healthy sons, those words should have brought great joy. Under different circumstances, I would have done back flips.  Instead, she was what I had feared. When I saw her almond-shaped eyes, my heart froze—Down’s syndrome.

My wife Bonnie was 46 years old. We knew that the likelihood of a baby with Down’s increases with maternal age. Today, tragically, nine out of ten babies with Down’s Syndrome are aborted. Bonnie and I are passionately pro-life but our prayers were for a healthy child.  A special needs child was for some other family; one that was holier than we were.

Our handsome, intelligent, and athletically gifted sons brought us great joy and not a little pride: Thomas (15), Kevin (14), Jack (10), Michael & Patrick (8’s), Luke (5) and William (2).  We did not want to become the poster couple for why it’s a mistake not to quit while we’re ahead. I imagined, even family members saying, Why didn’t you leave well enough alone when you already had seven healthy children?

Bonnie’s labor was one of her easiest. The nurse and I cheered her through contractions and pushing. The baby slipped out after one big push. But after her arrival, the atmosphere turned tense and quiet. I tried to mask my emotions. What kind of a father would express disappointment and even rejection for his own daughter? I knew it was wrong to feel that way.

Feigning happiness was beyond my ability so instead, I tried to hide my emotions. The absence of joyful excitement and a pensive look on my face told Bonnie what she was wondering—this was the baby we had feared that God would give us. Bonnie silently wept.

Our doctor confirmed that our baby looked to have Down’s Syndrome and explained she needed tests done on her heart.  More than half of Down’s children are born with cardiac conditions.  After being examined we were told that our daughter had two holes in her heart. She would have to undergo open-heart surgery when she was a few months older.

Instead of anguish, the news prompted a somber reflection… “If she dies as a result of her surgery the pain will be over for all of us,” we thought.  Those were not the thoughts we wanted, but the ones we had.  We had not even named her yet. Bonnie looked at me and said, “Let’s call her Grace Anne.”  She wanted something pretty yet simple, already thinking of the learning challenges that lie ahead.

I left the hospital at 3 AM in a daze, imagining that all of the nurses were saying, The poor guy, just got his girl and now look what happened. I welcomed the privacy of my car.  I cried the entire half hour ride home.

All the kids were still asleep so I rolled into bed, physically and emotionally exhausted.  Upon waking from a short and restless sleep, reality pushed into my consciousness, filling me with the dreaded realization all over again. It felt as though God had played a mean trick on us. Be open to life, accept seven sons, accept a pregnancy later in life and then, I will give you a daughter, but she will have a disability.

Besides the anguish of a disabled daughter was the anguish that I felt such little love in my heart for her.  My pleading began. Lord, please help me to love my daughter the way you do. I knew it was wrong not to love her the same as my sons. I began a relentless pursuit to learn to love like God loves.

The first task before me was how to tell the boys about their new sister.  Bonnie had penned an email to several friends and to a prayer chain, asking for prayers as our little girl had a serious heart condition. She asked people to pray for ‘grace’ to guide us on this journey.  I shared the email with our older sons. As they finished reading it, we cried and hugged each other.

Thomas and Grace

Thomas and Grace

“You would think that getting an extra chromosome would be a good thing,” my oldest son Thomas commented, “like scoring one more run in a game.” We discussed how to respond to people with questions about Grace. It didn’t seem right to say, we had a girl, but she has Down Syndrome.  We decided it would be best to just say we had a girl and if anyone asked how she was doing, we would explain, “She has a heart issue which is very common for babies born with Down Syndrome.”

To the older boys I said, “Guys, the world often defines a person as “perfect” when they’re pretty, handsome, athletic, intelligent, and wealthy.  Yet, these are not the qualities that God judges us on. He looks at our soul because it is the pure souls that experience the eternal glory of heaven.”

It felt like the Holy Spirit was giving me the words to comfort them.  “Maybe God knew our family wanted a girl, so he is telling us, ‘I didn’t want to send just any girl.  I saved the ‘perfect’ girl for your family. This little girl has an incorruptible soul!”  The kids were quiet and seemed to absorb what I was saying.  “Think of what a gift it is to have her living under our own roof,” I continued. “To be able to love her is to love God!  You see, God knows what is best for all of us!”

I was amazed at how easily those words came to me, but I was disappointed that my love for my daughter was not coming as easily. Why couldn’t I love her the way she is?

I simply told our youngest sons that they had a sister and her name was Grace. They went bananas jumping up and down. “It’s a girl, it’s a girl!” they yelled.  Lord help me to love like these little one’s, I prayed.

After Grace and Bonnie returned from the hospital, managing six school-aged boys and one toddler became more complicated with the new set of routines for Grace. The shock of Grace’s birth and diagnosis began to wear off, though Bonnie and I continued struggle with loving her unconditionally.

As Grace approached her five-month birthday and her impending open-heart surgery, mixed emotions plagued me. I realized that I was less nervous about this major surgery in contrast to how I would feel if it had been for one of my sons. Lord please have mercy on me, I prayed, not wanting to love her any less than my other children.   In a very subtle way, a feeling of compassion for our little Grace flickered in my heart. She was only ten pounds—so little to face such a life-threatening surgery.

A few days before her surgery, as I held Grace in my arms, it hit me that I saw her “condition” and it was preventing me from giving her my entire heart. Christ sees us through his Sacred Heart. I understood that Christ wanted me to love Grace UN-conditionally…to be blind to her ‘condition’.

Bonnie had already reached that point.  In fact, through her realization that our culture would not affect Grace in the same way as other girls, she began to see the advantage of having a daughter with Down’s.  So on the day of her surgery, Bonnie could not bear to be the one to bring her in.

big-hearted-coverAs I held Grace in the early morning hours prior to her surgery, and then eventually walked down to the operating room with her, my heart swelled with emotion. I was falling in love.  Suddenly, I couldn’t imagine losing my little baby girl and my heart ached for the pain she would have to go through.  When I laid her on that operating table and they began to administer anesthesia, I prayed and cried for my little angel!  I didn’t want to lose her!

Grace emerged from the surgery with a seven-inch scar down the center of her chest. The holes in her heart were repaired. When she came home and began to emerge as the heart of our family, the holes in our heart were also repaired. Her little personality began to captivate us and all the boys fell deeply in love with their little sister. They treat Grace differently than their brothers. I believe it is because through Grace, our hearts have grown. Her brothers constantly hug and kiss her and tell her they love her. The boys were gifted athletically, while Grace, who cannot even run or jump is gifted in love.

This story is shared by Tom Mahala and excerpted from Big Hearted: Inspiring Stories From Everyday Families, a collection of 22 stories that show the best argument for the value of families is the families themselves.

Patti Maguire Armstrong and her husband have ten children. She is an award-winning author and was managing editor and co-author of Ascension Press’s Amazing Grace Series. She has appeared on TV and radio stations across the country.  Her latest books, Big Hearted: Inspiring Stories from Everyday Families and children’s book, Dear God, I Don’t Get It are both available now.

To read more, visit Patti’s Catholic News and Inspiration site. Follow her on Facebook at Big Hearted Families and Dear God Books.

Looking for a Catholic Speaker? Check out Patti’s speaker page and the rest of the ICL Speaker’s Bureau.

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  1. Please read “The Clowns of God” by Morris West…You will finally understand…a very minute lesson, from the Mind & Heart of God!

  2. We terminated after a down,s diagnosis…so glad we did…I could actually be retired in 9 yrs (possibly) @ age 54…we can travel…spain, england, middle east, latin america…without abortion…our lives would have been wrecked

    1. Bob,

      Believe me when in a charity I tell you that you are in my prayers. I am certain that the child whose life you ended (that is what happens when one “terminates” a pregnancy) loves you and is praying for you as well.

      Yes, you have your retirement (maybe) and possibly will travel (maybe) but one thing is certain, your life would not have been wrecked if you had allowed your child to live, it would have been blessed in ways you cannot imagine.

      It is not too late for you to turn your attention outward, away from self. Your child and your God will forgive you… all you need do is ask. They love you… you can still love them.

      In Christ,

      Deacon Mike

    2. I, too, will pray for you and your wife. You have done something so extremely horrible. I will ask God to give you the sense to seek forgiveness before it is too late for you to be forgiven.

    3. Hey Bob.

      Why don’t you get rid of your wife too – then you could (possibly) retire in 8yrs, and it’ll only cost half as much to travel! And if your parents are still around, why not have them euthanized – that way you can inherit all they have and then you could (possibly) retire in 7yrs! To avoid having to share the inheritance, though, may require you having to ‘bump off’ siblings, but then, who cares, it makes economic sense, right?

      Anyway, I’m just off to shoot my dog so I don’t have to feed or walk him – that’ll save me an hour per day, not to mention how much I’ll save on pet food: I could (possibly) retire a month early in the end on those savings!

      My heart breaks for your poor, poor child.

      Enjoy your reward, Bob.

  3. I had a friend who had an abortion, quite a sad story too. Her mother found out after the “procedure” that the doctor had actually had the wrong papers. A total tragedy for her and her husband and two other children. Poor Bob R. I cannot even imagine your reaction. Your poor child.

  4. Wow! Very similar to what happened in my family. Shannon was the 11th child in my “perfect” family. She was a shock to my mom who couldn’t believe her baby was not “right”. Shannon also had a hole in her heart.
    This was back in the 60’s and the medical professionals told my parents to go home & enjoy her. Shannon was the most loving, happy, baby that we could not spoil enough! We used to take turns holding her and playing with her. I was only 10 at the time, it was like having my own doll baby!
    Shannon went to heaven when she was just 1 yr old. I often pray to her to keep me “in line” so that one day I may join her & my parents there.

  5. Bob,

    May God’s peace and healing be with you. It’s a natural human reaction to defend a choice you made, but it’s a Divine action to make peace with God and seek healing. I too will pray for you. Trips and retirement last but a moment. God’s mercy is eternal. Here is a simple yet powerful prayer to obtain mercy. http://thedivinemercy.org/message/

  6. This is such a beautiful story. Every life deserves a lifetime. Every child is a miracle and a blessing. I know several people with Down Syndrome… They are the happiest and the most loving people. So many people advocate for aborting these people, but they don’t advocate for ending their lives outside the womb. There is no difference. The world is a better place with them in it. (I did recently read a story that they are discovering ways to remove the extra chromosome as well, which might help some of the medical issues.) For those who have aborted a child, I strongly recommend rachaelsvineyard.org or hopeafterabortion.org. God bless this amazing family and their beautiful little Grace.

  7. A heartbreaking yet beautiful story. I pray that Our Lord will make them come to realize too, that little Grace’s salvation is GUARANTEED. She will always be sinless and her parents role in her life will make up for any shortcomings in their own lives. They will be saints in a time when life holds no value in so many ways to too many people.

  8. U all r so foolish. This bewildering religious speak is comical to hilarious. Ur angst stems from ur lack of power over others’ choices. Our quality of life is so much better without Downs Syndrome. I shutter to think how my daughter’s opportunities would have been crushed. Those opera coaches do not work for free.

    1. Mr Rodriguez, the only thing resembling angst around here is your own arrogant defensiveness in the face of your mortal sin of murder. You whine and moan about how your daughter’s opportunities would have been crushed, but you snuffed out her life so that you could wallow in some pig-slop that you call “quality of life”. You can laugh and sneer all you want right now, but one day you won’t. I pray that you repent of your sin before you must at last stand before God’s judgment throne for then it will be too late. “Quality of life”? Better that you concern yourself with “quality of eternity”!

    2. Sir, I can only assume that you are horribly uneducated about the realities of Down Syndrome. I don’t mean the medical condition itself, but the actual realities of Down Syndrome. Your child’s “opportunities” were crushed by you. Your “quality of life” consists of trolling on sites like this one searching for stories about children with Down Syndrome where you comment about the joy/happiness it brings you to have ended her life so that you could “live” yours. You sound like a person who is hurting. You sound like a person who knows what you’ve done is abhorrent, but instead of forgiving yourself and your spouse, you choose to spout off about how what you did was right. It doesn’t matter how many times you say it, what you did will never be right. It doesn’t matter how many times you call the sun the moon, it will always be the sun.
      My quality of life is amazing BECAUSE I have my son, Michael, who has Down Syndrome, not despite of it. He is the reason I slow down to appreciate every gift I have. I give thanks for all the good times more wholeheartedly because I have had the hard times which create a relief or a foil, if you will, to show me just how good those good times are. Without my son, I would be trudging along, unappreciative of all the beauty and goodness around me, working for a tomorrow which may never come.
      I am so sorry that you were ill-informed of the “opportunities” and the “quality of life” to which you were looking forward at the birth of your amazing child. I am sorry you will never get the opportunity to see her first smile, so hard won, or hear her first say your name, so long in coming. Those things most worthwhile in this life are those for which we work the hardest. I hope you find healing, both you and your spouse. It may not be obvious to others or even to yourself just how much you are hurting. One day, perhaps when you are alone, old, unable to care for yourself, you will think of the loss of the child who would have been there to care for you with unconditional love after everyone else, guided by your example of self first, has left your side, and then the hurt will be uncovered and you will grieve for your loss. I hope it does not take that long. I hope you find healing before that time. I will pray for your conversion of heart before it comes to that.

    3. Our quality of life improves when our heart grows and we love others. People who love others and are loved in return are the happiest. Children with Downs have the gift of love; they love so easily. I have written several stories on families with children that have disabilities and the love and grace flows in those families. Siblings learn compassion, parents learn patience and overcome shallowness, and all grow in love. Taking trips, having more money and leisure brings only a temporary happiness. Ultimately, those who serve themselves have hearts that grow cold and lives that become empty. And regardless of what your plans are for yourself, you cannot control your destiny. If you become disabled, who will be there to care for you? Aren’t you worth the love of others? Well, others are worth your love, especially a child of yours. No one is so powerless as one who depends only on himself.

    4. Bob, how can you be so cynical? Do you know anyone with down syndrome? I do, and none of them think they have a poor quality of life. As a matter of fact, because of it, they see life through “rose colored glasses”. Finding immense joy in the things we overlook and/or take for granted. I also have a 5 month old daughter with down syndrome. She also will require heart surgery in about 9 months. In the few months she has been in our lives, she has brought us abundant blessings….more than I ever could have imagined. I pray someday you see life as valuable not b/c of its usefulness to society but because each life is a gift. All people, but especially special needs people, can teach us things all the money and travel in the world never could. May God open your eyes to the error of your ways.

    5. Hi Bob,

      Thanks for your input!! … Down Syndrome is certainly a serious condition, and if, at any point after the birth of our youngest daughter (whom we love very much!), we had become aware of a cure for her Down Syndrome, my wife and I would certainly have pursued it vigorously.

      That said, I wanted to share that most of the good that has come into our lives as a result of my daughter’s Down Syndrome was not anticipated by either my wife or by me at the time of her birth.
      For instance, it was through the understanding we developed and the contacts we made while helping our youngest daughter, that we were able with God’s help to avert extreme misfortune for one of our other children. I have no idea how my wife and I would otherwise have had the knowledge and contacts when we needed them.

      I do understand that, if you had chosen to keep your child, your life would be much different that it is now. Whether your life now is better really depends on the true definition of “good”, and on the true measure of a human being.

      You seem to have bet pretty heavily that the Catholic church is wrong in what it teaches regarding human life. I’ll pray that you always allow time in your life to think through this position.

      Good Luck to you!!

    6. Mr. Bob,

      This spring I went to Quebec city, and while wandering in the old city, I saw a man and a woman with a Down syndrome girl. And I said to myself: I must greet these people, especially their daughter. So I went back and introduced myself. To my great surprise, they were travellers: they came from Australia, and they told me that their daughter loved to travel with them. They seemed happy and gentle hearted, I was happy myself to meet them and quite amazed that they came from so far away!

      So, you see, it was unnecessary to kill your daughter to be able to travel. May God forgive you.

  9. We are so grateful to the birth-parents of our dear youngest daughter who happens to have Down Syndrome. God has blessed our family in so many ways through her innocent and joyful life. We would adopt again in a heartbeat!

  10. My fifth daughter is also called Anne and she also has Down Syndrome. I cannot describe the she brought into our family and to our hearts. I will not say it has been easy, I will not say I am not worried, but I can say she is a true blessing, a veritable gift of God.

  11. Bob, I am so sorry for your loss. Please read the following poem by Edna Massimilla copyright 1956.

    Heaven’s Very Special Child

    A meeting was held, quite far from earth
    “It’s time again for another birth”
    Said the Angels to the Lord above,
    ” This special child will need much love.”
    Her progress may seem very slow,
    Accomplishments she may not show
    And she’ll require extra care
    From all the folks she meets down there.
    She may not run or laugh or play
    Her thoughts may seem quite far away
    In many ways she won’t adapt,
    And she’ll be known as handicapped.
    So let’s be careful where she’s sent
    We want her life to be content
    Please Lord find the right parents who
    Will do this special job for You.
    They will not realize right away
    The leading role they’re asked to play
    But with this child sent from above
    Comes stronger faith and richer love.
    And soon they’ll know the privilege given
    In caring for this gift from Heaven.
    This precious charge, so meek and mild
    Is Heaven’s very special child.

    I will pray for you that you can come to know our Lord and accept His love and mercy.

  12. Beautiful read! Honest and raw. Wonderful that Tom and Bonnie came full circle to fully embrace their beautiful little girl, Grace Anne. Children with special needs come to us as such blessings. They help us to see the world in a more perfect and loving light.

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