This month I had the privilege of writing an article for the Lowe Syndrome Association Fall newsletter. This is my letter to all our Lowes families who also walk a similar journey. We are so thankful for you all!
Seven years ago when we raced to the hospital to welcome our 4th child into the world, my gut told me this time it would be different. Even as he was growing in my womb, I just knew something wasn’t the same this time around.
You probably all have somewhat similar stories and emotions from when you received the life-changing diagnosis. Our Zachary saw his first specialist at 3 days old and it was almost 3 years and countless doctor visits before we received the diagnosis of Lowe Syndrome. I’ll never forget where I was that September afternoon when I received “the call” from the doctor that changed our world. I cried lots of silent tears on the phone while listening to the Genetics Counselor explain the test results and began to learn what was next with a diagnosis like this.
This journey you and I are on as we fight for the best life for our boys is hard. The appointments are endless, the fear of the future is terrifying, and I feel like it’s not going to get easier. Zachary has reached some huge milestones in the past year! He learned to walk around his 6th birthday, made it through a very tough double hip surgery, and is now walking better than ever before! We are so proud of his fight and determination.
While we celebrate the walking and the fact that his eyes and kidneys are currently stable, life seems to be getting harder in other ways. It’s the “other side” of parenting I didn’t understand until now. The language barrier with Zachary not being able to speak is so very hard. The ugly behaviors I’ve feared and known would come are showing up and countless behavior therapy appointments have been recommended. The feeding pump errors, beeps, and wakes me up throughout the night. Are you tired? I’m exhausted.
But oh the amazing miracles we’ve witnessed in 7 years! Amidst all of the hard things we face, don’t you feel like as parents of a Lowe Syndrome boy that we’ve been given a gift? Who else gets to celebrate as big as we do when our son holds up his head or learns to sit and crawl? You and I get the opportunity to recognize the simple and celebrate the beautiful that parents of a typical child often miss.
Truthfully? I don’t know if I would change a thing. Absolutely, I would love for Zachary to live life the same as other 7 year olds - playing on the playground, reading and writing, having play dates with other kids his age, the list goes on and on. But the joys our son brings each day are massive, and our family of 6 wouldn’t be who we are today without our beautiful Lowe Syndrome boy. Which means I’m thankful for, yes, a difficult syndrome.
I don’t think I could be as strong as I have been without all of you, our Lowe Syndrome family. With social media as the glue keeping us together, it’s a beautiful thing to have someone who understands just a click away. We pick each other up with a simple Facebook comment, share photos of our beautiful boys, and link arms when this life we live gets really really hard. I’m thankful for each and every one of you!
We’ll get through this. Together!
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