Matter of Heart
This week is history in the making. While hundreds of thousands of women march and advocate for rights to equality and promote the fair treatment of women who are bearers of the image of God and thus deserve equality, respect, protection and rights, Im reminded of another event in my life that was history-making. 9 years ago this week, I delivered a baby at 42 weeks gestation which (had we known of her condition before she was born), we would have been advised to terminate.
Ive read countless stories of other devastated moms who discovered their babies had heart defects at their 20 week ultrasound and were given the option, and sometimes advice, to end the pregnancy.
To end the life that likely would end anyway.
To spare their child pain and suffering.
Because the variables are just too complicated — the surgical “fix” may not work, may fail over time, may cause other medical complications, may hinder development, may reduce life-expectancy. Live birth and initial surgery are only the first hurdle. Should your child survive that, there are no guarantees and a special needs child like this will never outgrow the risks. There will always be the fear that as they grow and mature, that their repair may not hold up. No parent should have to see their child suffer the way mine has. I would gladly have given my right arm, or taken her place, as I watched her struggle for life in the first months, writhe in pain from an incision the length of her tiny torso, cry without a voice because of the ventilator tube down her throat and bruise from literally hundreds of needles and blood draws.
The issues surrounding the march today center around women’s rights. Around human rights. I too am gravely concerned about rights. About the rights of all who are marginalized. About the right to life. The rights of women, yet to be born, who cannot speak for themselves and yet, are no less “human” than you or I.
In the hospital where I work, I witnessed the stillbirth of a baby last year that stopped developing in the second trimester. The doctors tried to console the mom by saying that the fetus would be unrecognizable. But when this brave and bereaved momma pushed out the tiny frame of her underdeveloped babe, it was not as they had said.
But undeniably, intricately, beautifully formed and whole. A baby. A human.
Let me say, this is not a political post. I too am deeply saddened and concerned about the leadership of our country. And as a general rule, Id steer away from an issue as controversial and polarizing as abortion. First of all, because there is probably already an understanding of where I stand on this issue and second, I believe my opinion is unlikely to change anyones mind. However, the oversight of little lives in this huge campaign to liberate and empower cannot go unnoticed. I know many of you women marching do so out of love and concern for our daughters and in a hope to create something better for the next generation. But we are neglecting a fundamental value we believe in when we make right to abortion our battle call. Banners blaze claiming our uterus is private property.
And it is.
But for some, its also the home of a helpless, tiny human of which early eviction will mean extinction! We are violating the right to life of our unborn children and thats counterintuitive to our belief as we advocate for equal rights!! Im not going to try to tackle every reason for an abortion, which would require a whole series of blog posts. But in my years of working for and even directing a Pregnancy Resource Center, my compassion has only grown for women who find themselves in the impossible situation of an unwanted or unplanned pregnancy. Theirs is a hard road to walk often without the love and support that they desperately need to continue a pregnancy. Ive counseled victims of rape, teen moms and women in crisis situations. I was advised myself by doctors during my last two pregnancies that my own health was in danger and I was at increased risk of sudden death because of a heart condition of my own. Ive held hands as well with women who have been told their unborn child will be incompatible with life. Likewise, Ive supported through post-abortive counseling, women who made decisions that left them wrecked with regret and guilt and shame. My heart bleeds for them and I hope that all women will find grace, healing, hope and support! There is no room for anger in my heart – only love and compassion! Many women believe they have no other choice.
There are no easy, simplistic answers to the very painful and excruciating circumstances under which women have made impossible decisions. Decisions in which there is no easy out. Decisions that all bear ramifications no matter what you decide. But any decision to end a life as we claim our rights – is denying one for someone else. Abortion does not simply preserve and protect our rights to our bodies – it denies the rights of the unborn and takes a life.
My children are studying WWII and the mass execution of the disabled and mentally handicapped. We all find it unfathomable that such evil would possess mankind to make a judgement as to someones right to live based on their definition of the quality of life. And yet the same selection is made routinely when pregnancy is terminated based on assessment that the baby has defects or abnormalities. My two Downs-syndrome cousins (one of which was adopted knowingly accepting her handicap) are individuals that are adored by their siblings and that bring joy to all who know them. A niece of mine was found to have a cleft lip in utero. They, along with Evie, are lives that some would deem “imperfect”.
Is perfection the definition of worthiness of life? What about birth marks or vision problems or big ears or clubbed feet? Where do we draw the line qualifying ourselves as the almighty judge on worthiness of life? A great many handicapped, special needs and individuals with defects have been contributing members to society. And prenatal diagnosis we know for a fact, are not always correct. Yes, the potential for heartbreak is there. Babies with the most complex deformities wont live to adulthood. But that doesnt negate the fact that their lives served a purpose whether that be for months in utero, hours after birth, days, weeks or years. Life has meaning!
In this monumental day when women refuse to be silenced and many march to protest the oppression of a society that abuses, demeans and undervalues women, I’m campaigning just as ardently for another undervalued minority. Im standing for rights of the unborn who cannot advocate for themselves, for justice, for fair treatment, for respect, for women.
For all women.
Starting with the little lady who turns 9 this week whose life represents so many others whose rights have been denied, whose birthdays will not be celebrated, whose “defects” could have been beautiful parts of their unique, untold stories.
Today we celebrate 8 years since your heart was repaired.
You my child, are my biggest answer to prayer.
We prayed desperate prayers in those early hours of shock hearing that your heart was failing and that your prognosis was grim. We prayed for survival as you were life-flighted to Charleston and dozens of machines kept you alive.
We prayed that the doctors would be able to repair your tiny, broken, strawberry-sized heart and that it would beat again on its own when they took you off heart/lung ECMO bypass. We prayed your heart would be strong enough to function in a way it wasn’t intended to in its transposed design.
We prayed for circulation to your left leg when the shunt they’d had to put in caused so much swelling that they couldn’t get a pulse reading in your toes and we heard scary words like “amputation” if circulation didn’t return.
We prayed healing for the infection and collapsed lungs in the tough recovery as you struggled to breathe on your own again and had to repeatedly be intubated.
We prayed through dark days seeing you crying, gagging, and throwing up in pain with no noise coming out of your mouth because of the tubes paralyzing your vocal cords. We prayed for the ability to one-day hold and comfort our hurting child and to hear her cry.
We prayed for a miracle when your arrhythmias skyrocketed your heart rate to dangerous levels and extreme and painful measures were taken to restart your heart multiple times and correct the electrical damage.
We prayed that you’d learn to eat and that we wouldn’t go home from the hospital on a feeding tube.
We prayed for months as you lived hooked up to a Pulse Ox Monitor, and slept with an apnea monitor regularly alarming because you couldn’t breathe efficiently. We lived with tanks of oxygen in the house and gadgets always hooked up to you. We prayed that you’d live a normal, healthy life free of wires and monitors.
We prayed for answers as doctors tested for asthma, pertussis, RSV, Cystic Fibrosis, pulmonary hypertension, AIDS (a risk from all the blood transfusions)….all scary prognosis as your fragile immune system battled for the first two years of life.
We prayed for God to redeem your story. Your pain. The heartache and suffering. We prayed for strength to praise Him, no matter what the outcome and for our faith to be built through you.
We prayed for your life to be a testimony….come what may. We prayed that God would teach us peace, shalom, through so much uncertainty and fear.
God has and continues to answer! We celebrate you my girl. Today I watched you run in your relays at school and marveled at how far you’ve come from the baby in the ICU 8 years ago today whom we didn’t know if she’d survive or not. God has done this. Your life is our biggest answer to prayer and we say thank you Lord!!!
After our ridiculously late night the night before, It was no surprise that the ship had long been docked for our final day at Castaway Cay before our little “sleeping beauties” rolled out of bed groggily after 10:00am. We grabbed some breakfast and then hit the Aquaduck while the masses were off the ship on the island and the line was shorter for the water slide.
We lazily made our way down the gangway to enjoy a few more hours on the tropical island. While in search of a row of empty chairs, we happened upon a character dance party. You can be sure these girls knew how to boogie with Chip n Dale!
MAW had given us vouchers for tube rentals and snorkels and fins for the day so we cashed un and suited up. Can I just say that getting half a dozen kids fitted with masks and teaching them to breathe through a rubber hose is no small feat!! I was so proud of Evie who overcame her first couple frantic minutes of hyperventalative breathing and mastered the art of snorkeling! She was so proud! The kids and I kicked off and explored the mile long staged underwater ship-wreck. Totally cool stuff!! Coral covered abandoned underwater ship and canon…..treasure chest….and even a massive granite Mickey statue. Colorful fish weaved through the wreckage and Tristan even chased a massive sea turtle and had the gumption to go up and touch it!!
It was our fault that we missed lunch again due the the fact that we were so busy having fun that we totally forgot! Way too busy having fun! So that meant ice-cream-cones all around from the beach-side soft-serve machine.
We contemplated “missing” the last call to get back on the boat. I mean, how bad would it be to be stranded here? Reluctantly we bid farewell to the most magical destination in the world and boarded the Dream for a final night at sea.
The MAW staff had strawberry-shortcake cupcakes waiting in our stateroom for an afternoon snack. Always, always one step ahead with surprises and treats! As the kids showered and dressed for the evening activities, Evie protested the nautical dress I’d laid out and begged to wear her Cinderella dress “one more time”. Of course I couldn’t say no to that! So princess it was for one more magical evening!
C and I ordered a wine and cheese platter and enjoyed a few leisurely “couples” moment after sending the kids off to the Kids Clubs so we could get the suitcases all packed up for tomorrows departure! It was short lived, but man….why hadn’t we accessed the free room service before now? Cheese platter was fantastic!
C went to pick up the little girls from the club which resulted in a scenario he will not soon live down….
Disney has stringent security measures in place to make sure no “stranger” can walk in and check your child out of the club. When we’d enrolled the kids the first day, we were asked to provide a secret “family password” which would be used in conjunction with our key cards, etc. to ensure our kids protection. I had told C the password Id listed, but apparently in his slightly loopy state (still taking some heavy duty pain killers from his surgery only a few days before), he had no recollection of the password. So….as he’s trying to pick up our girls, he’s drawing a complete blank when asked to provide the password.
The club counselor (bending the rules a bit and trying to work with him) asks instead if he can provide the kids full dates of birth.
If this woman only knew…this guy has a LOT of birthdays to keep up with!
Apparently it took some time and careful calculation, but he eventually was able to retrieve his own daughters 🙂
Disney saved the best for last. Their final nights show performance in the grand Walt Disney Theatre was absolutely enchanting! However, C and I could barely take our eyes off of Gigi who sat perched on the edge of her seat dancing and singing along and then collapsing in laughter, completely immersed and enthralled in the performance. Oh the magic in her eyes!!
On our way to dinner, we stopped at the guest services desk to take a thank-you note from Evie to our precious Miss Nicky who had done so much to make the trip unforgettable for us. She in turn had more treats for Miss Evie – chocolate covered Mickey shaped rice-crispie treats. This woman was amazing!
Animators Palace dining room hosted us for our “last supper”. Tristan and I ordered the best truffle stuffed white wine sauce ravioli for appetizers. Absolutely divine! We interacted with “Crush” on the movie screen by our table while we sipped cocktails and tasted delicacies. Fillet Mignon. Lobster. Escargot. Creme Brûlée. When else in their lifetime will my kids get to try these things in one sitting?!! 🙂 We were seriously sad to say goodbye to Constantin and Potchara when we concluded our meal. These guys made our dining experience every night a truly entertaining event!
Reluctant to see the fairy tale end, we soaked up every last magical moment. We donned mermaid tails and went night-swimming and enjoyed one more ride on the Aquaduck. We sat on lounge chairs with the deck all lit up and the little ones wrapped in (heated) towels on our laps and watched Avengers on the “dive in movie screen”. The big kids filled cups with coke from the soda machine and topped it off with soft serve ice cream for everyone – coke floats!!
The 4 days aboard the Disney Dream were that precisely – a dream! Im pretty sure if Evie had wished for the moon, MAW would have thrown a lasso around it. This organization is amazing and facilitated memories for our family that have so beautifully celebrated Evie’s life and commemorated all she’s been through! We are so grateful for the opportunity together as a family to recollect all the prayers God has answered in our girls life and to reflect on how far she’s come! Here’s to many more dreams come true and life lived abundantly, joyfully, gratefully!!