Day 9 | Dear Jaxson

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Day 9: A letter to my son Jaxson

Jaxson at our recent ENT appointment

Dear Jaxson,

You’ve taught me that there is no such thing as “can’t…” 

When you were diagnosed with Dyrk1a Syndrome back in April it scared me. The genetic doctor called me with the startling results. Evidently this Syndrome wasn’t on their radar when they did the WES test back in December 2017.

When she started to name off the many different features and symptoms of Dyrk1a Syndrome, it scared me even more. We already knew that you were a bit delayed but we were hoping this was something you would eventually outgrow. The genetic team told us the following symptoms and features:

Intellectual disabilities

Developmental delays

Seizures / Cerebral Palsy

Fine motor delays

Feeding difficulties

Speech difficulties

Skeletal abnormalities

Microcephally

Etc.

And the one that scared me the most was that you wouldn’t be able to live on your own or take care of yourself when you got older. I was scared because who wishes that for their child? We want our children to succeed, spread their wings and make it on their own. It was a blow.

I had so many different emotions.

We eventually scheduled an Early Steps consultation because you qualified automatically with the genetic condition. As we were doing the evaluation I found myself saying, “I’m afraid he can’t do that…”

The therapist smiled and said that “we would do everything in our power to help him...” That’s when I stopped with the word can’t. I shouldn’t think like that, I shouldn’t automatically assume you can’t do that because of the features and symptoms the genetic doctor cited. 

Jaxson’s first dentist appointment

I didn’t think you would overcome your feeding difficulties, but you showed us you can on May 2017.

I didn’t think you would start gaining weight, but you showed us you can on August 2017.

I thought you wouldn’t start rolling over, but you showed us you can on October 2017.

I thought you wouldn’t start crawling, but you showed us you can on January 2017.

I didn’t think you would ever start to walk, but you showed us you can on July 2018. 

I didn’t think you would be able to communicate what you need, but you showed us you can on August 2018.

You show us each and every day that you can, and we are so proud of what you have accomplished and will continue to accomplish. You have inspired me to never give up and to tell myself I can

Love,

Your mother

A letter to my son Jaxson

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14 Comments

  • Reply Erica Raquel

    This is so beautiful! Your son is so lucky to have you, someone to really believe in him. It can be difficult hearing bad news and trying to stay positive through the situation but keep believing in him and his abilities, I’m sure he will beat all odds.

    Erica Raquel
    https://www.grandfashlife.com

    December 10, 2018 at 7:37 am
    • Reply Jennifer

      Thank you Erica. Thank you for taking the time to visit and read my post. I will continue to believe in him and his abilities! He will definitely beat the odds!

      December 11, 2018 at 8:05 am
  • Reply Lisa Carmer

    With the right support system, he will keep on thriving!!!

    December 10, 2018 at 11:34 am
    • Reply Jennifer

      Yes Lisa he will! Thank you!!

      December 11, 2018 at 7:59 am
  • Reply Sheila

    Way to go Jennifer! Make that have-done list!

    December 10, 2018 at 9:38 pm
    • Reply Jennifer

      Thank you Sheila, I’m going to keep adding to that list!

      December 11, 2018 at 8:04 am
  • Reply Rachel

    What a sweet and incredible post. My baby sister was born with Golden Har Syndrome. Very rare, and alot of time times symptoms can be severe. Given the nature of the syndrome she was put in a box by professionals. She will be this. She will be that. She was lucky to have come out with less severe symptoms and ever since she was a baby she has showed us she CAN. My parents were told she would be in Special Education and likely have developmental issues, last week she placed in the 97th percentile for her PSATs and she plans on going Ivy League. I’m not saying this for any other reason than I love that if we wait, everyone will show us that they CAN. I’m not a mother yet, but my boyfriend and I talk about how if we ever decided to have children we’ll be scared of any problems. How would we handle it? If I should ever find myself in your position, I hope to handle it with your grace and gusto, because the babies CAN.

    Cheers xx

    Rachel | http://www.myspottedblog.com

    December 11, 2018 at 4:49 am
  • Reply Eve

    Your such a strong mum to be able to write this. Sending love and hope and beat wishes from Scotland 🧡

    December 17, 2018 at 2:25 pm
  • Reply Lusine

    You are such a strong mother. I am glad to come across with your blog.

    December 26, 2018 at 2:30 pm
    • Reply Jennifer

      Thank you so much Lusine!! I’m glad we are friends 🙂

      January 1, 2019 at 10:02 am
  • Reply Hollysbirdnest.com

    Jennie, you sweet little Jaxson is bless to have such an awesome Mommy! As he grows he will continue to amaze you, keep an open mind and miracles will show up everyday!

    January 18, 2019 at 4:15 pm
    • Reply Jennifer

      Thank you Holly! I definitely look forward to him learning new things everyday, he definitely amazes us!

      January 22, 2019 at 10:31 pm
  • Reply Edel

    Beautiful words for a handsome boy. You are a strong woman and mom, Jennie, your son can because you can! My best wishes to both of you. <3.

    January 20, 2019 at 1:15 am
    • Reply Jennifer

      Thank you Edel! That means so much to me coming from a strong woman such as yourself!

      January 22, 2019 at 10:30 pm
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