This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.

9.27.2009

"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.”

11 comments:

  1. Hello Lauren and Greg, my name is Brittany and through facebook I learned of your story and have begun following your blog. I am so sorry that you have to say goodbye so soon. My husband and I lost our oldest daughter on Jan. 18, 2007....it really changes who you are inside. I wanted to tell you about a service that we are a part of if you are interested. Please feel free to email me at allheartphotography@gmail.com Know that we are praying for your family! Thank you for sharing your life and Johnathan's, it is truly a blessing to come across such beautiful people in a world that can be so ugly.

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  2. I just want you to know that you are bringing such honor to God and that good things have come from this and will continue to come from this. Through one person's trajedy, another persons miracle can happen. I pray that you and your family will continue to be securely anchored in faith, and you will feel God's arms around you. I just read your article, and cried my eyes out. I am a Christian from FWB, I have a friend who lost two babies to this disorder, she also is a believer, and she has three other perfectly healthy children. Thank you for the blessing that you are being to others who know and/or read your story. You will be in my and my family's prayers.

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  3. Dear Lauren and Greg,
    I read your story with tears in my eyes. What an honor to our Lord and Saviour your story brings!! On March 2, 1987 we lost our precious boy, Richard Andrew to Potters Syndrome. I can relate to everything you are going through as I have been there myself. Thankfully, we had a great church body, family, and our God's comfort to get us through. I will lift up your family in prayer. Your Sister in Christ.
    Pam Gradick, DeFuniak Springs, FL

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  4. Hey Greg, Dave Atkinson. Lauren, I was a friend of Gred's growing up. We spent many a fun day playing sports, fishin', water skiing, or playing computer games (remember GridIron?!). I just wanted to let you two know that my wife Monica and I read your story and were truly touched by how courageous you are both being in seeing the Lord's work through. You've touched many lives, including ours. God bless you and your families.

    Dave, Monica, & Owen Atkinson

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  5. Dear Lauren and Greg, I just came across your blog through the pensacola.momslikeme.com website. I live in Pace and am currently 9 weeks pregnant with my 3rd child and 5th angel. I have 2 healthy, wonderful baby boys. I lost our second child at 17 weeks. I was put into labor and gave birth to a perfect, tiny baby boy 4 years ago. We did not know that we were having a boy until he was out. We could never decide on a name and just avoided talking about it all together. I have felt such an unresolved feeling about not naming our son and feeling like we are not acknowledging his presence in our lives. I had another miscarriage but earlier on in the pregnancy. When my 4th pregnancy came along, I knew it would be a boy and decided to name my little miracle Joshua as it means "Saved By God." I did not plan on having another child but this one is here and on it's way. I am so humbled by how you are being so strong through your journey. I wish you the best and pray for you and your little Angel, Jonathan. Thank you for sharing your story.

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  6. I agree, it was a wondeful story! So many will be encouraged in their faith or pointed to the Lord by reading it.

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  7. Lauren & Greg,
    I read your story in the Daily News on Sunday and I wanted to let you know that even as a complete stranger I am inspired by your story, and by how God is using you to reach others. I am praying for your family during this hard time. Our God promises to deliver us, even if that means baby Jonathan will go straight into the arms of our savior. What a promise of hope we have in Jesus and what a great honor that you two get to share His love in this way. I know you will have a sweet angel there to greet you when Jesus calls you home. I will pray for your faith to increase by leaps in bounds throughout this trial, and I encourage you to keep being a light for Christ in the dark. God Bless You Both,
    Andi Mahoney

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  8. Dear Lauren and Greg,

    A friend of mine sent a link to your blog through facebook. After reading your story I was in tears. God blessed us with four children and I cannot even begin to understand the path you are traveling. Your faith is inspiring.

    I thank God for the blessing that Jonathan is in your lives. The news article was wonderful. Even before Jonathan has made it out of the womb he is sharing Gods love through his story and family. What a wonderful saviour we have!

    We'll keep your family in our prayers and pass along your story to our friends.

    Allison (California)

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  9. Lauren and Greg,
    I am from the Crestview area and check in at the NWF Daily News website now and then to see what's going on back at "home." I read your story there yesterday.
    As I was praying for you this morning, the thought kept coming to mind that, regardless of what happens, you HAVE parented Jonathan and have done so with grace and love. I am praying you will get to hold that precious boy and love on him after his birth.
    Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion, the God of all comfort. 2 Cor. 1:3

    Nancy Henderson Lundy

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  10. Lauren and Greg,
    I read about you from my email from One News Now, and I am in Awe with your strength and courage and determination through all of this. My heart is broken for your pain and knowledge that your son may not be able to grow up with you. I know we never actually know what we are capable of until we have to face a challenge, but what you are going through tears my heart to pieces. I have three daughters and 14 grandchildren and the thought of losing one leaves me with undescribable pain. You both have the strength through Jesus and I know we all do when we let HIM help us see the way. I pray that you will be given more than just this time with your son, and that his sister will be able to have him in her life as they grow up together. Thank you for sharing your life and letting others know about this critical disorder. God Bless you and your family.

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  11. Lauren,

    You are so in my thoughts these past days. I'm so thankful you were able to meet your son and hold him, even if just for precious minutes. I've been following your story for a long time, even though we haven't spoken or seen each other since high school. I am 33 weeks pregnant and in the beginning was tickled that you were pregnant as well. Even though I hesitated to comment as your journey progressed, you were always in my thoughts. Your strength is amazing and even though there were bad days, and now more to come, I'm so very thankful you had sprinkles of joy in there as well. Jonathan was truly blessed to have such parents of faith and strength. You and your family continue to be in my thoughts.

    Kindly,
    Jennifer Caldwell-Jeans
    All the way up in Maine

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