When you wish upon a star


This weekend has been so busy! Gabriel turned one yesterday, and we had a wonderful time celebrating his first year with our family and friends. I still can’t believe it’s already been a year since he came into our lives. He is so full of personality, so smiley, and at times so stubborn, but he has been such a blessing to our family and I couldn’t imagine our life without him.

I have to admit though, at times I feel like a first time mom with him. After going through what we have with Landon and Blake, I find myself worrying about things that I don’t think I would, had we not been through so much already.

While I was pregnant with Gabriel, we had genetic testing done via a CVS test to determine if he also had San Filippo syndrome. Although Jordan is not Landon and Blake’s biological father, we had not had his carrier testing done yet, so we had no clue if he also carried the gene for San Filippo. We knew we would not be able to go through a pregnancy without knowing whether or not the baby would be affected. At the same time, Jordan had his testing done to determine if he was also a carrier. The results for his testing would likely come back sooner than the CVS test results. If he wasn’t a carrier, then we were in the clear, as both parents must carry the gene for the child to be affected. If he was in fact a carrier, the CVS test would be able to determine if the baby would suffer the same fate as it’s brothers.

Waiting the two weeks for those results to come back were some of the longest in my life. They called about a week after the test with some good news: test results for chromosomal abnormalities all came back negative and they had also determined gender….a baby boy. A little over a week later we got the call: Jordan’s test results had come back and he was not a carrier of the San Filippo gene. The relief brought me to tears and the next 7 months were spent preparing for Gabriel’s arrival with excitement and anticipation.

Watching him grow and change over this past year has been amazing. He has been determined from the get go. Holding his head up before he was even a month old, crawling at 7 months, and walking at 10. With the meeting of each milestone, I am filled with pride, but in the back of my mind there is always some trepidation. That little, nagging voice always whispering “Don’t get ahead of youself, you just never know.” And I hate it.
I don’t want my fears to overshadow the enjoyment that these things should be bringing. Gabriel is in all aspects healthy. He is meeting milestone, and most of them ahead of schedule. He is growing and thriving…but still the voice. Even knowing he does not San Filippo, I can’t help but to worry. At times I feel like it’s dangerous to let myself believe that everything is fine, everything will be fine, and that his future is bright and limitless.

In all honesty, I think I hold onto the fear, the paranoia, and the worry because having that is easier than letting myself believe everything is okay and finding out otherwise down the road. I don’t know if I could handle another devastating blow like the one that ripped out my heart when the boys were diagnosed. Logically, I know it is irrational because we have had the testing done to rule out and prove that these fears are unfounded…but still. I don’t think I will fully let go of these fears until he has words: something neither Landon or Blake ever had.

Yesterday, as we sang “Happy Birthday” to my baby boy and I blew out his candle, I made a wish. I wished for the strength to let go and enjoy this time. To live in the beautiful moments that are these growing years and stopping worrying about what hasn’t happened and what I can’t control. I will always love my sons for exactly who they are regardless of what the future holds for any of them, and worrying about it is only cheating me out of the happiness of right now.

So today, we are going to play with his new toys, chase Blake around the house, eat left over birthday goodies, watch movies, cuddle, and enjoy this new phase of the journey: Toddlerhood.


One thought on “When you wish upon a star

  1. Ashley,
    You’re blog is amazing! Thank you for sharing your wonderful and tragic story with the internet world, and your Disney family. It’s amazing the raw emotion you express in your writing, and you are so brave to share that vulnerability. So many hugs and prayers for your family, think about you guys almost daily since first reading your story. God bless you and give you the strength as you continue this journey!
    Your fellow DA,


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