Jaxon - 13 Stories of Trisomy 13 | Still Playing School

Jaxon - 13 Stories of Trisomy 13

By Devany | Labels:
I volunteer as a penpal for other bereaved mothers through Faces of Loss Pen Pal program (highly recommended if you have experienced the death of your baby).   This program was how I "met" Shane.  We were assigned to each other since my Violet and her Jaxon had the same diagnosis. Jaxon's story is tragic but his little face will steal your heart.

Shane, thank you for being a part of our 13 Babies with Trisomy 13 series.  Who do you share your life with? 

I share my life with my husband, Montana and our daughter, Jaylee.

Can you introduce us to your baby? What would you most want us to know about him? 

My sons name is Jaxon.  He is truly amazing. I never thought that someone so small could leave such an impact on my life. Jaxon has changed me more than anybody I have ever met. I would want people to know that he is a beautiful baby boy and though he was only here for a brief time he touched so many hearts.

Can you tell me a bit about how you learned he had Trisomy 13?

We weren't aware that he had Trisomy 13 until 4 weeks after his death. He had none of the markers for T13. We had a genetic test done and it came back positive for T13. I remember the phone call like it was yesterday. In a way for me it was comforting to know that he didn't die because of something that I did. Because I felt so guilty after his death, it was just so sudden. 

What was his birth like?

His birth was terrifying. It was unplanned I had pre-eclampsia and I was delivering 10 weeks early. The doctors tried so hard to keep my blood pressure stable but I just kept spiking up. They started pitocion and his heart rate dropped so they rushed me in for an emergency c-section. I think for me that was the scariest because I didn't know what was going to happen. I had to be put to sleep so when I woke up I had no idea what was going on or if he was even okay. I remember seeing him for the first time and just thinking how blessed I was to have such a beautiful little boy to call mine.

How long did Jaxon live? How was your time with him?

Jaxon lived for 69 hours, 29 of those hours I wasn't allowed to go to the NICU to see him. Our time with him was brief it feels like. We weren't allowed to hold him at all. It was hard seeing his little body fighting for life and not being able to comfort him as a mother should. I cherish every second that I got with him though and when I finally got to hold him in my arms it was the most amazing feeling in the world. It was nothing like I imagined it was going to be, it was so much better.

I just snuggled him close and told him how much I loved him and that I would never allow anybody to forget how amazing he is.

What choices did you make for Jaxon while he was alive regarding medical intervention? 

I feel like all I did was sign consent forms while Jaxon was still alive. I had to sign so many forms for medications and the machines he was on and if I wanted them to resuscitate him if he were to need it.

What did you choose after his death for memorials? 

I actually didn't plan Jaxon's funeral. My sister and husband had to handle all of the arrangements because I was still in the hospital.

What supports did you have in helping you make these choices?

I really just did what the doctors thought was best because I had no idea what to do. I just wanted what was best for Jaxon and since we didn't know why he was so sick I listened to his doctors.

When did you last hold your sweet baby?

The last time I held Jaxon was the day before his funeral, May 17, 2013. I had gone to the funeral home to see him dressed and to make sure that he looked perfect. It's been 8 months and 1 day since that day.

Where are you in your grief journey today?
I would say that I'm in a stage of acceptance. I still have my bad days where I'm so angry but they don't come as often as they used too. I miss him every single day but I've accepted the fact that there is nothing I can do to bring him back. All I can do as his mother is keep his memory alive and make sure that nobody forgets about our sweet boy.

What advice would you give to other bereaved parents? 

My advice would be to NEVER try and put a time frame on your grief, grieve as long as you feel that you need too. Don't let people tell you that its time for you to "move on" or that you should be "over it" because you shouldn't. That will forever be your child and you are allowed to love and grieve over him/her as long as you feel the need too.

Is there anything else you'd like to add?
I would just like to add that I have met some amazing people on my grief journey and I am truly thankful for them. I have also been able to help others that have joined this journey and I am so thankful that I'm able to bring comfort to them. I can say from experience that it WILL be okay and they will survive this no matter how much it seems like they won't.

Meeting you, Shane, and hearing Jaxon's story has been healing to me even as I was assigned to help support you.  It truly goes both ways.  You are an amazing mother and Jaylee is an incredible big sister to Jaxon!

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