How i remember it…

One year ago today, I was told my baby boy was going to die.

This is how the story begins.

September 29th at 9:30 am we were at the 3D/4D ultrasound when we saw a mysterious growth on my baby’s tummy. The technician said she hadn’t ever seen anything like it and I should call my doctor. For some reason I gave it some thought but not a whole lot – call me naïve. I made an appointment with a doctor the next morning and I looked up what I could on google (not finding much about “mass/cyst on stomach”). Josh on the other hand spent the day into night researching and calling his Dr. friends to get answers.

The next morning, Sept 30, 2010, we got up and made our way to the car. While driving he said, “hey Lis, I just want you to know what the doctor says might not be good news. He may even say Jaxton has Downs syndrome and I want you to be prepared for that.” I nodded my head with out saying a word at first. For a while I’m stuck in my head. Thoughts racing around slowly and quickly at the same time. I had not thought about Downs or anything serious. It was a quiet car ride.

We arrive to the doctors office and have an ultrasound technician check the baby for quite some time. Most women would say it felt like eternity and that the nurse would not say anything to them about the circumstance. I remember it differently. I intently was looking at the monitor along with her. I was conversational saying “see, there… that’s what we saw on the 3D/4D ultrasound.” She couldn’t give me any specifics, but she did tell me she felt for me and reassured me that Our God is a good God.

The next thing I remember was sitting in the cold stark examination room. Nothing fancy just the stirrup bed that I was sitting on the edge of and 2 chairs. Josh was sitting on my left just far enough behind me that I’d have to turn to see him. The doctor was in front of us sitting in the other chair. Not an overly friendly or comforting person to say the least. White coat. Salt & Pepper hair. Glasses. Then his words started to come. “Sometimes there are times when a woman carries a baby and while all the cells are forming something just does not go right. With your baby we see some markers that suggest a chromosome disorder. I’m sure you’ve heard of Downs syndrome which is Trisomy 21. With the all issues your baby has I think we can rule out Downs syndrome. It looks to me like either Trisomy 13 or Trisomy 18. Both of these are incompatible with life.” (paraphrased)

To say I sat quiet and perplexed would be an understatement. {What? There is something worse than Downs? My baby is going to DIE?!?!} I turn and look at Josh and reach for his hand.

I was feeling warm and heavy inside trying my best to hold in my fountain of tears. The amount of my confusion and shock was somewhat keeping them from dripping, but with one good blink I was a sobbing mess. I used my sweater to wipe my eyes and my running nose.

Then it continued… “With a baby that is incompatible with life we don’t know when it is going to die. Most pass before birth but I’m not telling you to expect that you have that long. It could be today or a week from now or months. There’s just no telling. There are options for families in your case. (Abortion) If the baby does survive he will be severely handicapped with out the ability to sit up, breath, eat or communicate on his own for as long as he lives. You have another son, right? Take into consideration what the quality of his life will be if you are taking care of this one all day long.”

I stopped him abruptly and said, “Abortion is not an option. God gave us this baby and we will NOT end his life.”

The next thing I remember is exiting the office and walking down the corridor with my face in Josh’s chest crying. We get on the elevator to see a mother with her teenage boy who obviously had Downs syndrome. I try to pull myself together and give him the sweetest smile I could muster up. I immediately start thinking about telling him that his mom thinks the world of him and that he is very special and loved, but i don’t. He starts asking, “mom why is she crying?” (Over and over and over) I think I said, “I’m ok.” just to ease his concern. {or at least I did in my mind.}

Just moments ago we were told Jaxton was inevitably going to die. Now here is this sweet, innocent Downs boy that I wished I could have. I think about Jaxton {I would have committed my life to taking care and loving him. That option was off the table and now I couldn’t choose it even if I wanted to.}

We get in the car and I let no holds barred with the crying. My life was irrevocably forever changed. So many questions, so much confusion, my world was spinning out of control and there was nothing I could do but weep from the depths of my soul til it physically caused me pain.

My thoughts about God you ask???  My honest and truthful answer is… I wondered if I was being punished for all the bad things I had done in my past! I was mentally crucifying myself for causing this outcome on Jaxton’s life. (obviously, if you have read my blog at all I pretty quickly changed my tune on that.) It was a bad day to say the least.

As for my dear hubby: Josh put the family first and cancelled a speaking obligation in Nebraska and took a few days off to be with the family. What a loving guy i’ve got.

So that was my day 1 year ago today.

*   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *   *


I have learned: If we take the distraction of our fantasy out of the way we can see God’s plan so much clearer. I came to terms with your life and what it has meant and now I can see God’s plan and blessings so vividly.

I would not trade all the tears, all the sleepless nights, all my aching bones.

I would not trade my empty arms, the empty nursery or my empty heart.

I would not trade the hours lost, the smiles gone, or the memories missed.

I would not trade anything to have not had the opportunity to have you.

… But, oh what I would give to hold you again.

You are dearly missed son!


9 responses to this post.

  1. i love you, Lisa! thank you so much for sharing from your heart again. praying for you…all the time! love you, friend!! xoxo


  2. Posted by Debbie Vinall on September 30, 2011 at 12:21 am

    “If we take the distraction of our fantasy out of the way we can see God’s plan so much clearer.” I keep reading this over and over, trying to let it sink in. Thank you for sharing your heart, and your hard-earned wisdom. Love you. Hugs and prayers.


  3. Posted by Lynnette Anderson on September 30, 2011 at 9:54 am

    We continue to pray for you and your dear family. Thank you for sharing.
    Blessings to you and yours, Love, Lynnette


  4. Posted by April on September 30, 2011 at 10:47 am

    Praying for you today. I know Jaxton is so very proud of his mama. I know I am. You continue to be a light in this dark world, for our mighty God. Love you!


  5. You’re an amazing person and I’m sorry for your loss of your little boy. I don’t know if i could have handled but I’m sure I would have done my best. You’re an inspiration to me and thanks for doing your blogs. You will always be in my heart and prayers. Keep strong and you’re right GOD always has a plan whether we know it or not. The saying I live by is God wouldn’t put us through anything we couldn’t handle.


  6. Posted by Karie on October 4, 2011 at 5:48 pm

    Oh Lisa…not a lot of people can say this, but I truly know exactly how you felt at that moment in the drs office. It was one of the worst moments in my life (the second being when we got the call confirming Full Trisomy 13). I prayed so hard for Valerie to just have Downs…i was looking forward to having a baby with Downs… I’m still praying for both of our healing. I am so thankful I found your blog & met you. You’ve helped me tremendously. Thank you Lisa!


  7. Posted by Adrienne on October 5, 2011 at 12:59 am

    Oh man Lisa . . . I have oftened wondered about this day for you and now reading you re-live it just breaks my heart. I cant imagine this day and no mother should have to . . . and yet to think it was all part of a larger plan and you can actually SEE the plan and the blessings in it all. You are so filled with the Spirit and I just think you are such an inspiration. Jaxton and Jake have the best mommy EVER. All my Love and Support Always. Adrienne Ewers xoxo


  8. Posted by michelle Bradley (Aunt Mimi) on October 7, 2011 at 12:12 am

    I will never forget that day either or the call I got after you found out I was devastated for you. I love you always bestie and still cant really believe all that you have gone through. Jaxton will always have a special place in my heart and I know my momma is watching over him in heaven 😉


  9. Posted by Brandi on April 24, 2012 at 9:39 am

    You don’t know who I am, but I’m so thankful for your story. I recently found out our baby girl has semilobar holoprosencephaly. We don’t know yet if she has a trisomy and she does have a heart defect. I’m 20 weeks pregannt right now. I was looking online for others who have dealt with this when I came across your story. Hearing your story of faith and love will always be in my mind during our journey. Your video of your son’s journey was beautiful. Thank you for sharing your story and helping others who are going through the same thing. God bless you and your family!


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