A True Story

Today we share a story of our friend Joey. Joey’s Mom Lisa posted this on her Facebook page in honor of March being Trisomy Awareness month. I thought it was a story that should be shared with many more people in the world! I have always admired the way that Joey’s parents, Lisa & Bruce, have loved Joey and made sure that her life is awesome – and it is!

Thank you Lisa for sharing your journey with Joey. The world is a better place with Joey as part of it!

When we got Joey’s diagnosis (prenatally at 15 weeks gestation) I was beyond devastated. All I could think was I must be being punished for something really bad, otherwise why would God do this to me??
I wanted children so badly, but struggled with infertility. A ray of hope appeared when I found out my insurance would pay for In-Vitro (IVF). Much to my amazement we got pregnant from the first round of IVF. We held our breaths those first 8 weeks unsure if the pregnancy would continue (higher risk of miscarriage with IVF). A huge sigh of relief was had when we were discharged into the care of our regular OB, with the idea that the pregnancy would progress normally.
At 12 weeks I had a discussion with my OB, in which he brought up the subject of my age (I was 38) and the risk of Chromosomal anomalies in our baby due to my age. His question was did I plan on having this baby no matter what, if so we should forego extensive prenatal testing to avoid the stress of false positives. My reply was “I can’t make an informed choice without the information, I need to know everything”. So I was referred to a specialist for further testing.
A higher level ultrasound showed some possible anomalies with our baby, but nothing definitive. It was too early for an amnio so we had to wait 3 long weeks to find out if our baby had a chromosomal anomaly, a heart condition, or was just fine.

I had an amnio at 15 weeks pregnant, the anomalies found in the earlier ultrasound were no longer present. We were told it could mean the baby was fine, but still no guarantees. We were given the option to cancel the amnio, but I needed the info. No matter what the amnio showed I needed to know.
3 days later we got the initial amnio results (over the phone). Our baby girl had Trisomy 18 aka Edwards Syndrome. The devastation set in when the Doctor proceeded to tell me it’s considered Incompatible With Life, and less than 10% of surviving children born with T-18 survive to their first birthday. I grasped at anything to make it not real. I prayed the amnio results were wrong, or our amnio got mixed up with someone else’s. I made an appointment with the doctor hoping beyond hope the final amnio results would be different.

Our appt didn’t provide the relief I was so desperately praying for. It only confirmed what we were told. Not only did we have to hear the diagnosis again, we were given information in writing the Doctor had pulled from a certain foundations website. To say the information was grim would be an understatement. It literally gave NO hope, no chance of a future for our daughter. At that point we were offered the option of terminating the pregnancy. To which Bruce and I whole heartedly replied, ABSOLUTELY NOT, TAKE THAT RIGHT OFF THE TABLE. This was our baby girl, we were 100% in no matter what the future held for her. No matter how long we had her for, we were not going to be the ones to end her life. Luckily, our doctors respected our decision and never pressured us to terminate and didn’t bring it up again. I didn’t waiver in my determination to carry her as close to term as possible until 24 weeks.

At 24 weeks I could no longer terminate the pregnancy and I had a meltdown. Feeling like I couldn’t do it, not even one more day. It was too hard, I wasn’t equipped to carry a baby that had no chance of life. I couldn’t give birth to a baby that would survive but a few moments, I simply wasn’t strong enough. I prayed for strength and guidance. The answer came in the oddest of ways.

The answer came while I watched Passion of the Christ. Watching the scene where Jesus was being beaten, tortured, forced to carry his cross, and then being crucified on his cross while his mother watched was a wake up call. I’m not sure if I can accurately describe the moment, but I will try.
As I watched the scene, I felt everything from a mother’s perspective. A mother watching her child suffer unimaginable pain and torture, and being unable to do anything to stop it. And her child accepting it all with grace and forgiveness. All I could think was if Mary could go through all of that, I should be able to go through what I was going through.
Joey was never going to suffer, she would never be beaten, tortured, or crucified. She would never inflict pain or torture upon others. She would only know love and peace, even if she never took a breath I knew she could feel our absolute love for her while she was in my belly.

I wish I could say I handled the remainder of my pregnancy with grace and peace of mind, but that’s not how I’m wired. I still had several meltdowns, but I was always grounded in the knowledge that I/we were making the right decision and there would be no regrets no matter the outcome.
Joey came into the world on June 17, 2009 with the tiniest of cries that held the biggest promise of hope. She came into the world with a team of people working to give her the best chance of life, and a crowd of people waiting for the chance to meet her. That set the tone for the rest of her life.

Joey is now 7 years old, she knows very little in the way of pain and suffering. She is very well acquainted with love, peace and joy.

Truth is, if I had to do it all over again I would still do it again even if the outcome was different. She has changed my life in a way that is indescribably awesome.
Another truth is if God gave me the option to take away her extra Chromosome and make her a “typical/normal” child, I am not sure I would do it. We think Joey is perfect exactly as she is. Our only wish for her is more love, more joy, and more peace. Everything else is a bonus (walking, talking, doing the things typical children do).

Today Joey is a joyful seven year old girl. She has a custom made pink car that is specially adapted so she can drive herself! She loves to go to school and nothing makes her laugh like a Direct TV remote!

You can follow Joey’s journey on FB here.