Life with Down Syndrome by Amanda Gilbert

The team at SentioLife Solutions thanks Amanda Gilbert for her beautiful post about raising a child with Down syndrome. The Mayo Clinic Staff  writes, “There are no known behavioral or environmental factors that cause Down syndrome.
Is Down syndrome inherited? Most of the time, Down syndrome isn’t inherited. It’s caused by a mistake in cell division during the development of the egg, sperm or embryo.

Some parents have a greater risk of having a baby with Down syndrome. Risk factors include:

  • Advancing maternal age. A woman’s chances of giving birth to a child with Down syndrome increase with age because older eggs have a greater risk of improper chromosome division. By age 35, a woman’s risk of conceiving a child with Down syndrome is about 1 in 350. By age 40, the risk is about 1 in 100, and by age 45, the risk is about 1 in 30. However, most children with Down syndrome are born to women under age 35 because younger women have far more babies.
  • Having had one child with Down syndrome. Typically, a woman who has one child with Down syndrome has about a 1 in 100 chance of having another child with Down syndrome.
  • Being carriers of the genetic translocation for Down syndrome. Both men and women can pass the genetic translocation for Down syndrome on to their children.

READ the complete Mayo Clinic article on Down syndrome.

Life with Down Syndrome by Amanda Gilbert

My daughter was born two weeks early, in the early hours of April 30, 2011. It wasn’t until the on-call pediatrician made his rounds the next day that I ever thought anything would be amiss.

“Is her dad Asian by any chance?” he asked me. I must have looked confused, because he then clarified, “her eyes are a little slanted, but she doesn’t get that from you. She also has low muscle tone.” I continued to stare at him. “I think she may have Down syndrome, I’d like to run some tests.” My world stopped turning in an instant, and as he whisked my newborn daughter away to perform un-named testing on her, I whipped out my phone and started to Google.

Now, almost 3.5 years later, I have no idea why I was so afraid. Well, of course I was afraid of the unknown. But thanks to living in the age of technology, anything and everything I wanted to know about Down syndrome (aside from the actual physical part of living it) has been at my fingertips as soon as I wanted to know it. It has been the generations of parents before me, raising their child with Down syndrome, and talking about it, that has helped make this journey so relatively easy.

The First Years of My Daughter with Down Syndrome

Life with Down Syndrome by Amanda GilbertOf course, it hasn’t been all rainbows and butterflies, but since when is raising and being responsible for another human being easy. Living in Canada, where Early Intervention is easily accessible and sought after has helped. Not having to choose between paying the bills and taking my daughter to the doctor when she has a runny nose, a cough, or when I’m just being a paranoid parent has helped. Having an easy going child, who really has had no medical issues to speak of, has helped as well. Not every parent is so lucky, but that often isn’t dependant on the number of chromosomes your child possesses, as much as just the hand of cards that you’ve been dealt. Some kids are easy; some kids are a little harder. It just is what it is.

Sure, Everleigh had to work a little harder (with the help of therapists) to learn to sit up, roll over, stand on her own, take her first steps, learn to climb stairs, etc. etc. etc. But that doesn’t mean that her journey has been difficult by any means.

Trisomy 21, aka Down syndrome, is a third copy of the 21st chromosome. People get two sets of chromosomes at conception, 23 from mom and 23 from dad, for a total of 46 chromosomes in total. People with Down syndrome have an extra 21st, therefore they have 47 chromosomes in total. Trisomy 21 can be caused by an “oops” at conception, or can be inherited.* Up to 80% of the instances of Down syndrome are totally random. Nothing mom or dad did caused it to happen.

*On the MayoClinic.org site find more information about Translocation Down syndrome being the only form of the disorder that can be passed from parent to child. 

Some Characteristics of a Child with Down Syndrome

Up to 50% of people with Down syndrome are born with a heart defect that will require surgery. Everleigh’s heart is fine. She has a murmur that is checked up on from time to time, but her heart is in full functioning order.

People with Down syndrome can have certain physical characteristics that set them apart physically from the general population, but not every person will have every characteristic. Slanted eyes, low set ears, flattened bridge of nose, single palmar crease, larger sandal gap, Brushfield spots in the iris, smaller mouth, shorter stature, and low muscle tone are all indications of Down syndrome.

Boys with Down syndrome have a slightly higher chance of being diagnosed with Autism Spectrum Disorder than the general population. Boys are sterile (I don’t believe there is a single case of a male with Ds ever fathering a child). The females can get pregnant, but their chance of sterility is higher. People with Down syndrome have a higher chance of being diagnosed with Celiac disease or leukemia. Coincidentally, for some reason people with Down syndrome also respond better to chemotherapy.

My Life with Everleigh Has Been Pretty Blessed!

Everleigh - raising a daughter with Down syndromeMy life with Everleigh has been pretty blessed. Not because I am a better, or worse, person than anyone else, but because having a child is a blessing all in itself. Having Everleigh has opened my eyes to a totally different way of living.

  • Because it has taken her longer to reach milestones, I have learned patience and perseverance.
  • Because she learns differently, I have learned to teach differently.
  • Because she is who she is, I have learned to be a better person. To see everyone I pass on the street with a different lens. To take a second to smile at those who are differently-abled. To reach out to those who are struggling, and offer them a hand up. To take an extra second to see the good in the world where possible, instead of being inherently pessimistic. Life has changed because of her.
  • Because she made me a mom, and because she has Down syndrome, she has challenged me to see things differently.

She HAS Down Syndrome, But She Is NOT Down SyndromeShe HAS Down Syndrome, But She Is NOT Down Syndrome

I guess if I wanted you to know one thing specifically about Everleigh, it is that she HAS Down syndrome, but she is NOT Down syndrome. She is not downsy, or “that downs kid”, or retarded. She is Everleigh. She has her own set of personality traits and quirks that make her totally unique. She is human, just like you or me. She has emotions, hopes, dreams, and aspirations. And all we can do, as her family, is help her reach those dreams, just as we would for any other child.

About Amanda Gilbert:

I am a 24 year old mom to Everleigh, with a boy on the way for February 2015! Up until January of 2014, I was a single mom. I am the oldest of 3, and we were raised by a single mom as well. I live in Southern Ontario, Canada. I work outside the home, and just graduated from college in April of 2014. My only goal in life is to be happy, and I assume I will know it when I get there. I am always available by email to answer questions and help others as best I can. I can be reached at amanda.gilbert17@gmail.com and blog occasionally at www.t21everleigh.blogspot.com

Thank You: The team at SentioLife Solutions thanks Amanda Gilbert for her touching guest post about raising her daughter with Down Syndrome.

SEE video Just Like You-Down Syndrome

Check out this parenting book we reviewed for our Special Needs Book Review site and our interview with the author:

See Also Reviews of  Children’s Books on Down Syndrome:

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