World Down Syndrome Day

World Down Syndrome Day

March 21 is World Down Syndrome Day (Trisomy 21…get it?) and a great time to advocate and share with others what our loved ones mean to us. When I found out via a prenatal ultrasound in 2001 that my baby might have Down Syndrome, I was devastated. With little information and no real experience with the Down Syndrome community, I reacted with fear and spent the remainder of my pregnancy praying that this would not happen to us.

When I gave birth to Nicolas, the operating room went silent. Back in my room, there were no happy welcome packages. I was informed that I had a “Down Syndrome situation.” Because of his heart issues which included AV Canal and a PDA, I had to leave him in the hospital for a week. At home I worried about how I was going to handle taking care of him as well as my three other kids. People greeted me with the words “I’m sorry” after they learned about his diagnosis.

There was nothing to be sorry about.

World Down Syndrome Day

 

Nicolas is now 15 years old. The impact that he’s had on our family and our community is immeasurable. I’m sometimes asked about his “level of function.” His quality of life doesn’t depend on how high functioning he is. He just is, and that’s enough.  

  • His smile and charisma light up a room.
  • He’s taught me more than I could ever teach him.
  • Because of him, my compassion for the disability community as a whole has increased a hundred-fold.
  • I’ve met the most amazing people that I would never have crossed paths with if it weren’t for him.

Is it always easy? No. But parenting so-called typical kids isn’t easy either. Do I worry about the future? Yes. Parents like me always have to be one step ahead, thinking about what comes next and how to navigate the school system, social services, medical and behavioral issues while we try to tend to ourselves and our families.

Bottom line…with all of our challenges, I wouldn’t trade him for the world. In honor of World Down Syndrome Day, here’s a few of my previous posts about our life.

Why My Son With Down Syndrome is My Greatest Teacher

Our Story of Down Syndrome and Congenital Heart Defects

5 Things You Shouldn’t Say to a Special Needs Parent

For further reading, check out

Down Syndrome Facts

How to Deliver a Down Syndrome Diagnosis the Right Way

How My Dogs Help Me Cope With Chronic Illness

 

How my dogs help me cope with chronic illness

As the Dystonia Medical Research Foundation has invited dystonia patients to honor our canine friends this February with a virtual walk, I’m moved to write about my four friends Lily, Bruiser, Luna and Bridget, how they bless my life every day and ultimately help me cope with chronic illness which is dystonia.

I was diagnosed with cervical dystonia in 2010. The symptoms came on fast and furious. It also left me mostly incapacitated for close to a year. It was completely devastating and as a special needs mom, I became overwhelmed with anxiety. I didn’t know how I was going to handle everything. Through it all, I’ve come to appreciate my dogs more than I ever did. They provide a much needed distraction from the near constant pain and limitations that I struggle with. Like many people with chronic illness, I’ve become pretty housebound. When the rest of the world is too busy to notice, my dogs are always there.

I’ll start with Lily, the youngest of the bunch. With my physical limitations it probably seems a little crazy that we got a hyperactive Jack Russell Terrier, but I’m so glad that we did. There is never a dull moment with her and she always has us laughing with her antics, whether chasing around something outside, burrowing in the couch or one of her crazy blanket creations that she makes before she settles in. Lily has to go out a lot to burn off energy. We live in the country with 2 fenced in acres so I just have to go outside with her. Even if I don’t feel like walking, I can just sit down and watch her run. She is one of the most faithful dogs I’ve ever owned..she instinctively knows when I’m not well and stays very close when I’m struggling.

cope with chronic illness

 

cope with chronic illness

 

My Bullmastiffs are a lazy lot..they lay around sleeping for the most part but they are always very sweet and affectionate which gives me a lot of comfort even on the days I’m stuck on the couch. Bruiser like to “talk” to us which gets very funny at times. They’re 8 and 10 which is getting up there in age for these sweet gentle giants.

cope with chronic illness

Last but certainly not least is Bridget my Cairn Terrier who is 17 now. She’s been here since my kids were little and is an integral part of the family. She’s old now and mainly sleeps and wanders around. As her time to cross the Rainbow Bridge grows closer I get really sad. I’ve had Cairn Terriers in my life since 1987. I love little terriers…they always keep me smiling and get me out of myself.

cope with chronic illness

Throughout the month of February you can join us for the DMRF Dogs4Dystonia Virtual Walk and help us raise money for much needed medical research to help improve treatment options for dystonia.  Right now they are still very limited to oral medications, Botox injections (which the insurance company fights me about) and deep brain stimulation surgery. Holistic lifestyle measures including yoga, medical cannabis and massage do help some but still are not enough.

Our fundraiser page is here.

Thanks for reading!

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