The doctor was running late the day of Maria's twenty-week sonogram, so Kurt left Maria at the doctor's office to pick up the kids from the baby-sitter. No big deal - they had been through a half-dozen sonograms before; they would catch up at home when Maria was done. So Maria was alone with the doctor when he observed that the baby appeared to have a cleft lip and palate. There was no history in either family of any such problems. How could this be???
Since Maria was 39 at the time, the doctor suggested that they have an amnio test - just to be sure that there were no other problems. What other problems could there be? Wasn't this enough? The doctor said something about the baby's femur not being in the right proportion to its torso, or some strange thing.
While Kurt and Maria came to grips with the fact that their baby would look different than others, they searched for doctors who could do corrective surgery. They also decided to have the amnio --- maybe there were other problems and at least they could be prepared. Not that any news could make them think of taking the baby's life, but if the baby had other problems, they could begin their search for the best hospitals, the best doctors, the best of everything.
Kurt and Maria told Rachel and Ben the news that baby would have a "boo-boo" on his or her lip. (Rosalie was always modest during the sonograms - they still couldn't tell if the baby was a girl or a boy). Ever since the kids learned that they would be having a baby brother or sister, Rachel and Ben always included "baby" in their night-time prayers. Now they added an extra message - "...and God, please bless 'baby' and please help the boo-boo on baby's lip..."
Kurt and Maria had the amnio done in early May and were told to expect up to a two week wait for the results. You've got to be kidding! They actually make you wait for two weeks for this kind of news? The test results came back more quickly than expected - in a little over a week. Maria was teaching her fourth grade class when the doctor called her at school. Did she want to hear the news over the phone, right then? Yes, said Maria. She just had to know.
The doctor's words were unbelievable. The baby had a condition called "trisomy 13" - something Maria had never heard of before. Worse yet, the doctor explained that it was a condition which is "incompatible with life"-- the baby would likely die before he or she was born!
Maria had to call Kurt and tell him this incredible, terrible, numbing news - that their little baby - a girl - was so very, very sick, she would probably die before her first breath. Unbelievable heartache accompanied the news as it spread through the family. Between them, Kurt and Maria had six sisters and two brothers; they also told Maria's mother, who had lost day-old twin girls forty years earlier; Kurt's parents, and grandmother; countless aunts, uncles, cousins, and friends. No one had ever heard of Trisomy 13. From now on, no one would ever forget it.
The doctor assured Kurt and Maria that there was no mistake; the results were not subjective and they could not be changed - their little baby had an extra 13th chromosome from the minute she was conceived, and there was nothing in the world anyone could do to change it. It's like a programming error that impacts every organ in the body. T-13 babies typically have undeveloped lungs; incorrectly developed kidneys; and major problems with their hearts. Thankfully, all this information was available on the internet. What did people do before? The doctor answered their questions as best he could, but the bottom line was that in thirty years he had never delivered a trisomy baby alive. And he strongly cautioned against expecting that this pregnancy would be any different.
Kurt and Maria were referred to genetic counseling to inform them of their choices, and offer encouragement in whatever course they chose. They were told, again, that the odds were greatly against this baby surviving to a live birth; the baby may die at any point from that day on; if the baby died in the womb, they may have to wait before inducing labor because Maria's body may not be ready to deliver right away; they could choose to terminate the pregnancy, even though there was no danger to Maria in continuing the pregnancy to term. Although overwhelmed at the prospect of carrying a child who may not live to term, Kurt and Maria both knew that it is God who gives life and they would not intervene, in the name of convenience or anything else, to take their baby's life.
"For you created my inmost being; you knit me together
in my mother's womb...
When I was woven together in the depth of the earth,
your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be." Psalm 139:13 - 16
Kurt and Maria had been praying for their baby since they first learned of the pregnancy. If they were to "terminate" the pregnancy, what would they say to the children? They, too, had been praying for the baby from the beginning. When the kids were told that the baby had a problem with her lip, they prayed for "baby's lip". Now what do you say - "baby was very sick so we decided to get rid of the baby?" The next time the kids are sick, do they secretly fear that they, too, will be gotten rid of? And yet, how do you tell children that their little sister, who as yet, had no name, would not be with them for very long, if at all?
Rachel always loved spending time with her Dad. That weekend, they went for a ride in the sea kayak. While on their ride, Kurt explained to Rachel that they had some good news and some bad news about "baby".
He gently told Rachel that the good news was that the baby was a little girl - Rachel was going to have a little sister - and she was so excited! The bad news was that the baby was very, very sick, on the inside, and God would be taking her home to be with Him sometime very soon - but they would pray to be able to hold her and love her for just as long as God would allow. Rachel was very sad, but told her Dad that it was ok because "since God made her, he can take her to be with him whenever he wants." From the mouths of babes....
Kurt and Maria also decided to tell Rachel that she could name the baby if she wanted. Earlier that year, while on spring break in Florida, Kurt bought Rachel a "beannie baby." The beannie baby's name was Rosalie. For months, Rachel had been asking to name the baby Rosalie if they had a girl, but Kurt and Maria were hesitant. Now, Rachel got her wish. So she told her Dad that the baby's name was "Rosalie Marie" - which is funny because it seems as though every girl on Maria's side of the family has "Marie" as a middle name - including Rachel.
When Kurt and Rachel got back from their kayak ride, Rachel jumped out and excitedly told her Grandma, "guess what, Grandma! I'm going to have a little sister! The baby is a little girl! And I got to name her - 'Rosalie Marie Honis' - but Grandma, Rosalie is also very sick and will not live for very long so we need to pray for Rosalie. But it's ok - since God made Rosalie, he can take her to be with Him whenever he wants..."
No wonder the Lord says,
"Let the little children come unto me, and do not hinder them,
for the kingdom of heaven belongs to such as these." Matthew 19:14
The next few months Maria anxiously monitored her body for signs of problems with Rosalie. The entire family was acutely aware that each day may be the one they dreaded. The encouraging news was that all of the sonograms showed Rosalie had a very strong heart, unlike may T-13 babies.
As the weeks went on, Rosalie continued to hang in there and beat the odds. Each doctor's visit confirmed the news from May - the baby was not developing as she should, and they should not expect Rosalie to make it to a live birth. Nevertheless, there were countless prayers all across the country asking for God's help.
On Thursday, August 24, 2000, Maria started to have preliminary labor pains, about twenty minutes apart. The baby wasn't due until September 22, but they were told that Rosalie could come at anytime. Even so, the doctor said that it could be two days or two weeks, so she shouldn't worry. That night, Maria and her sisters took Rachel and her cousins to the Brittney Spears concert at the New York State Fair. Even though she was uncomfortable, it gave Maria something to try to take her mind off of the labor.
Friday evening, Kurt, Maria and the kids traveled back to the camp on Lake Ontario.. Kurt's sister was coming in from Atlanta Friday night, but would be riding her bike from Syracuse to the lake on Saturday. Family friends, one of whom is a nurse in an ob/gyn practice, were also due at the lake on Saturday.
Saturday morning, August 26, 2000, Kurt, Maria and the kids went out on the lake. The kids had fun tubing while Kurt drove the boat and Maria winced in pain. To try to alleviate her discomfort, Maria actually got in the 72 degree water - and it helped. But only for a little while.
After they got back to camp, the family friends arrived. The labor was progressing despite Maria's strong denials. Before insisting that Kurt take their guests out on the boat, Maria asked for some tylenol. But nurse Cheryl told them, "this is labor - tylenol isn't going to do anything for labor - you need to get to a hospital! If you don't take her, I will!" Whereupon Kurt called the doctor in Syracuse (which is two hours from the lake) and was told to go to the nearest hospital, right away. The nearest hospital was in Watertown, New York, 45 minutes away.
Kurt and Maria set off for the hospital. After a few miles, they saw Heidi approaching on her bike. She was 80 miles into the 85 mile ride. Heidi had no idea that Maria was in labor, but recognized the car and thought they were driving pretty fast. Maybe they were in a hurry to get some ice cream. Kurt pulled over and told Heidi that Maria was in labor and they were on the way to the hospital - did she want to get in? "Of course!" So they threw her bike in the back of the car and took off.
Kurt drove on the very narrow county road with one hand, held the seat buckle off of Maria's stomach with the other hand, and attemped to pass cars while timing Maria's contractions. They were two minutes apart and lasted 45 seconds. Heidi was in the back seat, calling the hospital for directions. The hospital said to "take Route 12 to Watertown, and take a right at [some unmemorable] bridge." Fine, said Heidi. But then they realized there was a Route 12; Route 12E; and Route 12 F. Which Route did they need??? Maria was in the throes of hard labor, but she recognized that Kurt and Heidi were not clear on the directions. Understandably, Maria suggested/accused them of not knowing where they were going, and observed the real possibility that they might not make it to the hospital in time.
Not to be discouraged, Kurt turned on his lights and flashers which, surprisingly, many drivers acknowledged as an emergency and pulled over to let him pass. When they arrived at the edge of Watertown, they saw the international symbol for "Hospital" and were very happy. That happiness turned to near panic when the road stopped and you had to make a turn - left or right, which way? - and there was no hospital sign. They picked right, which was correct, ("thank you, Lord!") and within a few blocks the signs showed up again. Other than having to cruise through a couple of red lights, after beeping at cars to clear the intersection, it was a straight shot to the emergency room.
When they pulled in, Kurt ran inside, grabbed a wheel chair and alerted the nurses. Kurt helped Maria into the chair and wheeled her into Samaritan Medical Center. An orderly took over for Kurt and pushed Maria to the maternity ward while Heidi parked the car. As they were coming down the hall, Kurt saw four women rush into the room ahead of them. It was 3:02 p.m.
Maria was told she would be getting no drugs for her pain - "You are going to have this baby RIGHT NOW! Get ready to push!..." The obstetrician was busy on another delivery down the hall so the midwife on duty and a couple of nurses took care of Rosie's birth. When Heidi got to the room, it was 3:10 p.m. As she walked in, she saw an unbelievable sight - Kurt was holding little Rosalie and she was alive!
Rosalie was doing just fine. Had the labor been very long, it is unlikely Rosalie would have survived. Maria had done a wonderful job, especially with no drugs! Rosalie was in her father's loving arms, and she actually opened her eyes to see who was holding her. As soon as it was possible, Maria took her baby in her arms. The long days of waiting were finally over, and she was blessed to be able to kiss and hold her sweet little girl.
Soon, other friends and family made it to the hospital to see and hold Rosalie. She met her brother and sister, both grandmothers, her grandfather, and many aunts and uncles and friends. After a while, Rosalie actually had a little bit from a bottle. The room was filled with joy! Ben reminded his dad that they forgot to bring the car-seat. If only they would have the need for one!
As the afternoon turned to evening, and Rosalie continued to hang in there, there was hope that she might actually see another day. They moved the family to a regular hopsital room, complete with an extra cot. The nurses were wonderful, tending to everyone's needs without getting in the way. Kurt, Maria and Heidi stayed while the rest of the family headed home with hopes of returning the next morning to spend more time with Rosalie.
The nurse encouraged Kurt and Maria to get some rest after such a long day. So for an hour or so, Kurt, Maria and Rosalie actually slept together in each other's loving arms. This was a gift that they had only dreamed of.
Around midnight, Rosalie's breathing started to become labored. The nurse checked on Rosalie periodically, and her condition continued to deteriorate. Finally, at around 3:00 a.m., Rosalie took her last breath while in the loving arms of her mother and father and aunt.
"Where, O death, is thy victory? Where, O death is thy sting?"
1 Corinthians 15:55
Rosalie was not there - she was immediately in the arms of her heavenly father. This promise is all that sustained Kurt, Maria, and their families in the days after Rosalie's death. The image of her little casket being carried into the church for her funeral broke everyone's heart. Yet her funeral was filled with hope of the resurrection, and God's promise of our ultimate "family reunion" at the wedding feast of Jesus.
God was very gracious to allow Rosalie's family to hold her before he called her home. He answered the fervent prayers of many, many people. The good news is that the separation from Rosalie need only be temporary. We all dream of the day of being together again forever, where there will be "no more pain, and no more sorrow." In the meantime, we are very thankful for God's mercy and grace, and we pray that our experience will be an encouragement to all who read this story. Always remember that He stands closer than a brother and he will never, ever, ever leave or foresake us.
If you trust in the finished work of Jesus, you will never be disappointed!
Blessings to you all!