"a purposeful life"

a few weeks ago, we were contacted by wendy victora from our local newspaper about doing a story about our journey with jonathan. today, the article was published (and on the front page nonetheless!) it was a little surreal to read our story in print, but we were very pleased with how it was written. we have appreciated the outpouring of support and prayers for our family.

you can read the article online at nwfdailynews but i have included it below as well.

Couple prepares to say goodbye to unborn son (with blog excerpts) Lauren and Greg Tomaschko hope their son, Jonathan, is born before they lose him.

September 26, 2009 6:59 PM
Wendy Victora
Daily News

For now, Jonathan Tomaschko is a tiny foot in his mom’s ribs. A ricochet of mini hiccups jiggling her belly several times a day. Each time he moves, his mom stops and concentrates on what he is doing. She doesn’t want to miss a minute of her son’s too-short life.

Jonathan is a baby who might live his entire life inside of his mom. If he does not die before he is born, he will die soon after. A few minutes. Maybe a few hours. Days would take a miracle.

“Not compatible with life” is the sterile medical phrase assigned to Jonathan’s condition. Trisomy 13 is a rare, always fatal, chromosomal defect. His heart and kidneys cannot function outside of his mom’s womb. He has an extra chromosome in every cell of his body.

“Meeting our son alive is our greatest desire in all of this,” says his mom, Lauren, adding that she and his dad, Greg, pray that they will be able to hold and comfort their son when he dies. “It’s our chance to be parents to him and to show him how much we love him, and by making sure he’s not alone when he takes his final breaths,” she says.

She has tried to imagine what it will be like laboring with her son, hoping that he survives the delivery, cradling him in her arms. It always makes her cry. “I imagine memorizing every single part of his body, the way he smells, the noises he makes, and declaring him ‘beautiful’ and ‘perfect’ in spite of any physical defects Trisomy 13 has caused.”

‘The long pause’
The Tomaschkos gave birth to their first child, Kate, almost two years ago. Lauren is radiant in her second pregnancy with a sleek baby bump that doesn’t quite measure up to her first. Jonathan will be smaller than their robust little girl.

When Lauren became pregnant last spring, they hoped for a boy to complete their family. At 17 weeks, Lauren and Greg went in for a routine ultrasound to determine the gender. Their baby was a boy, their obstetrician told them. But she saw something “kind of abnormal” during that ultrasound.

The Tomaschkos remember “the long pause” while the doctor looked at the black and white image. It was quiet in the room. They waited. “You could tell she was looking him over,” Greg says.

Two days later, they were sitting in the office of a high-risk specialist in Pensacola. Almost immediately, a high-level ultrasound picked up one serious problem after another. “We were holding each other’s hands. We were both crying,” Lauren recalls. “We knew we were dealing with something that could change our lives.”

They chose to have an amniocentesis that day, although they were concerned about the slight risk of miscarriage associated with the test. But there were so many apparent problems that doctors stressed that more information was needed. Within days, they had the official diagnosis: Trisomy 13.

The Tomaschkos made it clear that ending the pregnancy was not an option. Initially, they hoped Lauren would have a miscarriage. Almost immediately they changed their minds. This was God’s plan for them, for Jonathan. “We just knew deep inside that no matter what, he was our son,” Lauren says. “And we were going to continue the pregnancy. “We had to really believe that this was part of God’s plan for us,” she adds. “That God didn’t make any mistakes when he created our son.”

Finding words
Within days of learning that their baby would die, Lauren and Greg started blogging online at jonathansbabyjournal.blogspot.com.

In it, Lauren — writing for both of them — chronicles how Jonathan’s condition has both tested and strengthened their faith. Lauren writes about feeling him move inside of her and cupping his tiny body in her hand. About savoring every movement. “This day may be all that he has for now,” she wrote July 7. “No matter how bad of shape he is in, I still have to take care of him the best I can and love him like he was perfect. He has no other mommy but me.”

She writes about shopping at a baby store for the clothes to bury him in while other pregnant moms dreamily wandered the aisles, anticipating the arrival of healthy babies.

Lauren blogs about choosing his casket and buying a gravesite, about sitting in a cold room and trying to imagine holding her baby for the last time before handing him over. “I did feel a little guilty about planning a funeral for a baby who is very much alive,” she writes. “I know it must be done but it was like he was reminding me the whole time, ‘But Mommy, I’m still right her with you.’ I wish I could tell him that everything we’re doing is because we love him.”

And she writes about how they are grateful for that routine ultrasound that allowed them to learn early in her pregnancy about Jonathan’s condition. “We have been blessed with over three months now to do everything we can to prepare ourselves as best as we can emotionally and spiritually,” Lauren wrote Sept. 21.

Their blog is one way that they feel they are giving meaning to their son’s life. His life might be short, but he matters. Instead of a baby shower, friends threw them a celebration of Jonathan’s life. More than $1,300 in cash and countless gifts were shipped to orphanages in Africa and to the Children’s Advocacy Center in Jonathan’s name. “When we learned of Jonathan’s prognosis, suddenly I became very aware that he would be considered a waste by many. My heart’s desire became that Jonathan’s life would mean something, anything,” Lauren wrote in her blog.

Difficult choices
Jonathan, whose name means “Gift from God,” is due in November on the same date their daughter was due two years ago. It is almost certain he will not make it that long. Only about 20 percent of Trisomy 13 babies are full-term. Many don’t survive the first trimester.

The Tomaschkos are hoping that Jonathan will be allowed to choose his time to be born, but inducing labor early may be necessary. At 30 weeks, his condition is worsening. Doctors have said his kidneys are not functioning well and Lauren’s amniotic fluid is low. Her blood pressure is also becoming a concern. But his parents are not ready to say goodbye. Nor do they want to make the decision to induce him until they have to. When he’s born, he will die. “I don’t feel prepared to lose him yet,” Lauren says. “I want to enjoy more time with him.”

They cannot save their little boy. They can only celebrate his brief life and pray for the strength to deal with losing him. “I want him to be remembered as a blessing to us, to other people,” his mom says. Greg starts to talk and then chokes up. Long moments later, he regains his composure. “I want him to be remembered as our son,” he says. “And that he was ‘fearfully and wonderfully made’ and that he wasn’t a mistake. His life does have purpose.”