For the last year, I have been blessed to share this beautiful journey with my Huddy. Hudson is a vibe, a mood, a reminder of how precious life is and a reminder of just how resilient we’ve been created. Thank you for reading my heart over the past 12 months. My goal has always been to share a glimpse into this life to encourage everyone to embrace and support your families in your communities better. To see each person as someone who deserves more respect; give more of your time to someone who is easy to love. Mississippi is the “Hospitality State”; hospitality is the friendly and generous reception and entertainment of guests, visitors and strangers. This is also a given for thy neighbors. Be hospitable and kind to all.
A friend of mine once shared something with me, “maybe our children don’t have an extra chromosome, maybe we are missing it and we will be given it at the gates of Heaven”… that is exactly how I feel. God is love and love definitely lives on the 21st chromosome. Hudson daily (really every second) shows love in the smallest and biggest ways. I have learned so much by looking through his eyes and embracing this journey with open arms. Just because I am his mom, this doesn’t mean you can’t embrace with open arms, too. Actually, we are all called to use our strengths given to help others. Whether it be a time of need, like poor water quality or a hurricane, we should use our strength to lift others when they need us. I promise you that lifting others with different abilities will only increase the strength of who you are; help make you whole. You may already believe that what you’re is working, and likely it is, but, what if you could find a happiness you didn’t know existed? Wouldn’t you seek it?
I have been very open that I didn’t embrace anyone on this journey before my Hudson was born. Given the opportunity, I believe I would have been a good friend, but my path never crossed any of these beautiful families before Hudson. Boy, did I unknowingly miss out. Each smile I have experienced on this path is so deeply stamped on my heart and I know I am a better person today. I have always been a happy person. A person who sees life as a gift. A christian who lives life to help others. This is a new part of my life; I am a strong advocate, a wonderful caregiver and I plan to be a world changer for Hudson.
October was Down Syndrome Awareness Month. I call it Down Syndrome Acceptance Month because I see a world where my son doesn’t need a month to prove he deserves a seat at the table. I see a day where he can decide, even if his decisions need support, what he can do in life and then be supported fully to achieve his dreams. I pray for a day where children aren’t tucked behind their parents in fear of them saying something that would be embarrassing, but that they are given the chance to ask whatever they wish with their curious little hearts to be able to learn. The unknown is where fear lives, so let’s talk.
In honor of Down Syndrome Acceptance Month, a sweet friend sent me a gift. This gift came the same day we brought Hudson home for the hospital with pneumonia. We were tired, sleep deprived and needed to learn a new routine to support his healing (as all parents experience with all sick children), and this gift was in my mailbox. I love Gods perfect timing. The gift had words that read this:
“Chosen: You were chosen for this journey. You were handpicked to be the caretaker of someone who will touch the hearts and lives of many. Your eyes will open to a beautiful new world. A world that is far more innocent than the one you are familiar with. This precious world is the closest thing to Heaven here on Earth. You will become an advocate, a therapist, and a teacher. You will celebrate big for this that used to look small. You may not feel prepared, but know that you are fully equipped with everything your child will need. This journey will be part of your legacy. “You were born for such a time as this” -Esther 4:14”
Here’s a recap of all the NDSS facts that were shared during October:
- Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. The additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
- According to the CDC, approximately one in every 772 babies born in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. About 5,100 babies with Down syndrome are born in the U.S. each year.
- There are three types of Down syndrome: Trisomy 21 (nondisjunction) accounts for 95% of cases, Translocation accounts for about 4%, and Mosaicism accounts for about 1%.
- In almost every community of the U.S. there are parent support groups and community organizations directly involved oil providing services to families of individuals with Down syndrome. You can find a list of groups on the NDSS website.
- The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children born with Down syndrome are born to omen under 35 years of age.
- In 1958, Dr. Jerome Lejeune discovered that Down syndrome was caused by having an extra chromosome on pair 21.
- A few of the common physical traits of Down syndrome are : low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
- Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today. (And still increasing)
- People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote, and contribute to society in many wonderful ways.
- All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
- Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends, and the community enable people with Down syndrome to lead fulfilling and productive lives.
- People “have” Down syndrome, they do not “suffer from it” and are not “afflicted by” it.
- “Intellectual disability” or “cognitive disability” has replaced “mental retardation” as the appropriate term. NDSS strongly condemns the use if the word “retarded” in any derogatory context. Using this word is hurtful.
- NDSS uses the preferred spelling, Down syndrome, rather than “Down’s syndrome.”Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.
- Translocation, a type of Down syndrome that accounts for 3 to 4% of all cases, is the only type of Down syndrome known to have a hereditary component. Of those, one-third are hereditary.
- People with Down syndrome have feeling just like anyone else. They are not always happy. They experience the full range of emotions. They respond to positive expressions of friendship and are hurt and upset by inconsiderate behavior.
- People with Down syndrome socialize and have meaningful friendships. Some choose to date, maintain ongoing relationships, and marry.
- World Down Syndrome Day is celebrated on 3/21, representing three copies of the 21st chromosome.
- The American Academy of Pediatrics recommends that all children with Down syndrome have a sleep study preformed by the age of 4 because research suggests up to 76% will experience sleep apnea compares to 1-4% of the rest of the population.
- Approximately half of al babies born with Down syndrome have a heart condition. It is important that medical treatment is provided.
- People with Down syndrome actively partake in advocacy efforts that impact their lives. NDSS regularly invites individuals with Down syndrome to advocate on Capitol Hill on legislative issues beneficial to the Down syndrome community.
- One someone has given birth to a baby with Trisomy 21 or Translocation, it is estimated that the chance of having another baby with Trisomy 21 is 1 in 100 up until age 40.
- Adults with Down syndrome are not children and should not be considered children. They enjoy activities and companionship with other adults and have similar needs and feelings as their typical peers.
- Chromosome 21 plays a key role in the relationship between Down syndrome and Alzheimer’s Disease. Scientists have located several genes on chromosome 21 that are involved in the aging process and that contribute to the increased risk of Alzheimer’s. However, not all individuals with Down syndrome will develop Alzheimer’s.
- The Buddy Walk was established in 1995 by NDSS to promote acceptance and inclusion for people with Down syndrome. It is still the premier walk program for the Down syndrome community in the United States.
- Down syndrome is a condition or a syndrome, not a disease.
- Children with Down syndrome typically face delays in certain areas of development, so early intervention is highly recommended. It can begin any time after birth, but the sooner it starts, the better.
- Each year NDSS hosts the Times Square Video presentation, showcasing 500 individuals with Down syndrome from around the world on the big screen.
- Down syndrome is not contagious, you cannot catch it.
- Instead of saying “a Down syndrome person”, it should be “a person with Down syndrome.” Also avoid “Down’s person” and describing the condition as “Down’s” as in, “He has Down’s.”
- Individuals with Down syndrome are able to be independent in a wide variety of ways. Wait for someone to ask you for assistance before jumping in to do something for them.
As I wrap up this amazing year of sharing all of the facts and my heart, I can say without a doubt that I was chosen for this life. That I am blessed for this gift of Hudson’s life. All children are amazing individuals who deserve a chance at life, with or without an extra chromosome. The more you educate yourself with anything unknown or feared, the more you grow as a human. You were chosen to be here, too. To be reading about my son. To be learning and teaching in your communities. To be on this journey with me.
Remember that this journey will be your legacy. “You, too, were born for such a time as this”.