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.

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Jaxton,

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!

Mommy