February is Heart Month! My 3-year-old son Ian has HLHS (Hypoplastic Left Heart Syndrome). He was born with half a heart and has undergone 4 open heart surgeries among other procedures. There have been ups and downs, but he is a light in our lives and instead of dwelling on all the uncertainties, we try to see everyday as a gift. Currently, he lives a fairly normal life. #halfthehearttwicethefight is one motto in the HLHS community. I think another hashtag could be #halfthehearttwicethefaith.
Recently, the HLHS community lost the second oldest known person living with HLHS. She was 38 years old and her surgeon Dr. Norwood was an important pioneer of the life-saving operation that allow people like my son to function without a left ventricle. My son had his “Norwood” surgery when he was 1 week old. Sometimes people will ask me about Ian’s life expectancy. Usually an awkward silence follows. The answer is we don’t know. The oldest people living with HLHS are our age. Scott is 38, I am 36. Technology keeps advancing and the medical community continues to learn more and more. The highest risk of death is in the first 5 years. We don’t dwell on the reality that there is no guarantee of 40 years, 20 years, ten years, or even tomorrow. Ian’s life, though we know not the number of days, is certainly a gift. Nobody knows the number of their days, however, heart parents have a much more acute sense of how fragile life can be.
When we lost Ian’s little brother Gus during the second trimester of pregnancy it hurt. (FYI Gus died from a nuchal cord, no heart or other defect) And part of the pain was a fear that God was somehow using this loss as a dress rehearsal for a greater loss. His funeral was a very beautiful experience for me. It reminded me of our wedding (oddly) and I felt very connected to my God and my Catholic faith. I finally understood not just in my head, but in my heart the glory of the resurrection. And we found peace in our submission to God’s will.
I am 28 weeks pregnant a benchmark also known as “obviously pregnant” where strangers will comment on my expectant condition. Before I was showing, I confided our joyful news in a non-family member who I thought could use a little cheering up. I was surprised at his reaction, “You’re having another one? After all you’ve been through?” I was quick to reply, “Oh yes, we have faith not fear.” Twice the faith because of the fight.
I am reminded of the oft quoted verse from the great Tennyson poem:
“‘Tis better to have loved and lost
Than never to have loved at all.”
We chose love, and I don’t have to defend myself for that. We chose love in a free, faithful and potentially fruitful way. Yet, there are plenty of people who question having “more children” especially after having a child with a “defect.” Scott and I put the pen in God’s hand, not knowing if His plan included more children for us.
Life is about love, right? Love your partner, love God, and know that by God’s loving design new life may spring forth from that love. But society wants to terminate the connection between choosing love and life. One can choose to love their partner with their whole body, but then flush, dismember, or shoot through the heart any strings attached. God’s design connects the body and the heart. And though a baby may not ever be given a birthday, for many women a child is born in her heart the moment she learns of her baby’s existence. You can terminate the pregnancy, but you can’t sever the heart strings to the soul. You can only perhaps let your heart grow cold, the unfeeling heart will never feel the pain of abortion.
January was Human Rights month. Martin Luther King, Jr day, January 21st fell one day before the 46th Anniversary of Roe v Wade the Supreme Court decision to legalize abortion in the United States. This anniversary was particularly tragic as New York state legislature picked that day to strike another blow to the legal protection of unborn humans. Shouldn’t being a human be the only qualification to be granted the most fundamental human right, a right to life? A right to exist as every other member of our species once existed, and not be willfully and intentionally killed. As slaves were once considered property of their owners, so too the unborn are considered property of their mothers- literally at their disposal. The abortion debate is the human rights issue of our time.
Seems to me that parents should be legally bound to protect and provide for their children to the best of their ability. Instead “Every individual who becomes pregnant has the fundamental right to choose to carry the pregnancy to term, to give birth to a child, or to have an abortion, pursuant to this article.”.
What strikes me about the above sentence is the phrase, “to give birth to a child.” If it is given birth (wanted) it is dignified with the designation “child,” but if a woman elects an abortion it is the dehumanized “pregnancy” that is terminated. The right to choose is the right to murder via age discrimination an innocent human being. I gave birth to 3 children, but God gave them life. And as Mother Angelica sums this whole debate up so concisely, “Let no one call to death someone God has called to life.”
The fear of Roe v Wade being overturned and state abortion laws then being enforced, we will see more and more of this debate. States may allow abortion up to 24 weeks for any reason like the New York law does. This puts the lives of all “defective” children at risk. Children like Ian who we learned at 20 weeks would be born with half a heart. Half the heart, twice the fight. And he has fought hard. He has fought through shunts that were too small, paralyzing agents, delirium, partial blindness, partial paralysis, permanent vocal cord damage, feeding tubes, kinked breathing tubes, long hospital stays, nausea, vomiting, bouts of being blue and too many pokes, tests, and tears. Oh my brave boy, my conquering hero. You are my greatest adventure.
No one said it would be easy, they only said it would be worth it. Looking at my boy he was so worth the fight. And I believe few people regret giving their “imperfect” children the chance to fight. I know what it is like to be pregnant and uncertain ….. fearful of the future. What kind of life will we be able to give him? How will his disability affect my other children? He has changed my life no doubt, he has given me abundant joy. God gave him life, and I gave him birth. Choose love. Choose life. Choose joy.
I see some God-fearing individuals getting depressed at all the potential negative consequences laws such as the one passed in New York. It breaks my heart to think of little ones like Ian being aborted, having their ending written before their story really began.
“Once upon a time there was a very young child created out of the heart of God . . . . . .The End.”by 800,000+ Americans who each year think they can write a story better than God and choose abortion over life.
The story may be a drama, but let me tell you, it is also a love story. A love story that points to the greatest Love Story ever told. The cross, the Christ, the kingdom. Let your faith be greater than your fear. Continue your pro-life efforts and ramp them up if you can. There are 101 ways to build a Culture of Life. Seek the ways that God is calling you, and step by step we will march closer and closer to justice for the unborn.
I’d like to close with four great quotes from Dr. Martin Luther King, Jr. How do they speak to you?
“Injustice anywhere is a threat to justice everywhere.”
“Our lives begin to end the day we become silent about things that matter.”
“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”
“We must accept finite disappointment, but never lose infinite hope.”
Steve SebergerFebruary 6, 2019
Agree with everything you’ve said here. I just don’t understand how people can think they stand for justice and care for the disadvantaged, but condone abortion. Love your MLK quotes.
Nicole BaldersonFebruary 6, 2019
Beautiful! Thanks for writing this and sharing your family’s journey. May God continue to shower His blessings on you! ?❤️
MyrnaFebruary 6, 2019
Oh, Emily! Everyone should have the opportunity to read your writings! So moving.
Elwood (Woody) SmithFebruary 6, 2019
Thank you for allowing my third cousin to live his God given life to the fullest of his God given ability.
God bless you and your family, those you know and those to be.
Cheryl BalesFebruary 6, 2019
Prayers for all of you! God certainly chose the right parents for Ian. You are correct that none of us know the number of our days so it’s a reminder for all of us to live our lives to the fullest. I’ll watch for your blog.