Down Syndrome Awareness, Day 12

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Mary and her friend Victoria, who also has Down Syndrome, took a small animal class at Camden County High School last year. As part of the class, they needed to do a project that involved small animals. They decided to volunteer at the Humane Society. They went through the volunteer training and spent time playing with cats and dogs.

Mary has done other volunteer work as well. She has volunteered as an usher at Theatre by the Trax in St. Marys. She has volunteered at Jacksonville Zoo and Gardens, explaining bones to visitors. Mary has also volunteered at a race on Jekyll Island, where she handed out water to the runners after the race.

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Down Syndrome Awareness, Day 11

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While I was wearing this shirt, someone commented on my being a Georgia Tech fan. My response? “I’m really not a fan of sports, but I AM a fan of my husband, and he’s a Georgia Tech Fan!” I remain ambivalent about sports (except baseball, of course! I’m a huge Angel’s fan!)

Mary, on the other hand, is both a fan of her Dad AND Georgia Tech! She follows the games with her Dad. She cheers for goals made, and she gets bummed out when Georgia Tech doesn’t win. But she never stays bummed out for long. She’s very good at looking at the bright side of life, and drawing beautiful things to other’s attention. It has been my privilege to have a front-row seat to observe and take part in Mary’s world.

 

Down Syndrome Awareness, Day 10

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I’m getting a little tired of working so hard to be “Politically Correct.” I watched this commercial again today…and it makes an excellent point. People with Down Syndrome DO need “education, jobs, and opportunities, friends, and love just like everybody else.” But it was qualifying as a “Special Needs Kid” that allowed Mary to have a play therapist, physical therapist, occupational therapist, and speech therapist in our home from the time she was a year old until she started Pre-K at the ripe old age of 3. She was actually eligible for from birth, but since she was born in Florida we weren’t aware of services available in Georgia. Georgia’s Early Intervention Program paid to have those therapists come to the house.

It is Mary’s “special needs” classification that allows her to enjoy the annual Special Hearts Prom at Christ’s Church Camden. It is also her “special needs” classification that allows her to play baseball at Justin’s Miracle Field in Kingsland. As a matter of fact, one of the physical therapists who came to the house now volunteers at Justin’s Miracle Field, and is able to see for herself the good her groundwork has accomplished. This therapist has watched Mary take her first tentative steps, and now watches her run bases at breakneck speed!

The Down Syndrome Association of Jacksonville is appreciative of the “Simply Amazing Special Needs Pageant” that is being promoted by Leann Purvis. All funds raised from this program will help the DSAJ keep coming up with programs to entertain and educate the Down Syndrome population, while creating opportunities for those who don’t have personal experience living with a person with Down Syndrome to get to know them and understand that every single one of us…”differently abled” or not…has a story to tell and a life to live.

Tell me my kid has “special needs?” Go ahead. I know she does. And I’m glad. She gets to hang onto her innocence longer than most. I still get to tuck her into bed at night, even though she is nearly 19 years old. She has a smile and a word of encouragement for everyone she meets. This world needs more people like my Mary!

Down Syndrome Awareness, Day 9

Mary in the NICU

Mary developed an eye infection shortly after she was born.  As a result, when I was discharged, she was sent to the Neonatal Intensive Care Unit at University Hospital in Jacksonville (now UF Health). I agonized over the fact that she would be transported by ambulance, and neither her Dad nor I could not ride with her.

At the NICU we learned to wash carefully up to our elbows for two minutes, then don a hospital gown. We thought our daughter at 4 pounds, 12 ounces was small. But many babies in the NICU were so much smaller than she was!

We were able to stay at Ronald McDonald house while Mary was in NICU. It was tremendously helpful to be mere blocks away from her. We visited Mary as often as we could. She did not take to nursing, so she started on formula. We would rejoice when she finished a two-ounce bottle!

Down Syndrome Awareness, Day 8

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St. Marys, Georgia, where we live, has an annual Scarecrow Stroll. The Down Syndrome Association of Jacksonville, Northern Stars, has had an entry in years past, and naturally decided to enter again.

The St. Marys waterfront is in disarray following hurricane Irma, but away from the waterfront the roads look fairly normal. The Scarecrow Stroll is a great way for people to hold onto a bit of normalcy while our neighborhoods are being repaired.

For information about the DSAJ, visit https://dsaj.org/.

For information about the Scarecrow stroll, visit http://www.visitstmarys.com/event-calendar2.html.

 

 

Down Syndrome Awareness, Day 6

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“Every Child Deserves a Chance to Play Baseball.” That is the belief of the people who started Justin’s Miracle Field. I was hesitant to let Mary play. I’m not a big sports fan and didn’t relish the idea of sitting in the stands, in the heat and the mosquitoes and gnats that make the heat feel even worse. But after many reminders and a lot of coercion, I finally decided to let Mary play.

Mary loved the game from the very first time she set foot on the field, and she hasn’t missed a season yet. Justin’s Miracle Field works hard to make sure every player feels welcome and appreciated. Mary returns the favor because she is a natural-born encourager! As Mary’s buddies and teammates (and even the opposing team) cheer Mary on, she turns around and does the same for them.

Part of the magic of Justin’s Miracle Field is that every athlete gives there best effort every time. The game always ends in a tie. Everybody cheers for everybody else. The players set the pace of the game, so two or three innings are played depending on time.

If you would like to know more about Justin’s Miracle Field, you can visit their website:

http://www.camdenmiracleleague.com/

 

Down Syndrome Awareness, Day 5

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Today was my Mom’s 71st birthday. In the picture above, Mary is showing off the skirt her Grandma hemmed for her.

My Mom retired from civil service, and now does substitute teaching. Mary was SO excited to see her Grandma at her school today!

Mom chose to spend part of her birthday at the annual Care Net fundraising banquet. This was Mary’s first year to attend the banquet, since she is an (eh hum…) ADULT now! (This kid will be 19 years old at the end of the month!)

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Care Net is a ministry that is near and dear to my heart. I surrendered a child for adoption when I was 15 years old through a similar ministry. That daughter will celebrate her 35th birthday on October 8.

One of the things I’ve done that makes me the happiest is that I was on the steering committee that brought Care Net to Camden County back in 2003. I have hosted a table for the banquet since I first learned of the ministry through today’s banquet. I continue to support Care Net because I believe in what they do. They share the love of Christ with gentleness and humility. They encourage sexual purity. They provide resources for men and women experiencing crisis pregnancy together. They provide post-abortion comfort and restoration. They even provide sexually transmitted infection tests.

When Keith and I found out I was pregnant with Mary we were overjoyed! Then an ultrasound indicated Mary might have Down syndrome, as well as a heart defect. A genetic counselor encouraged us to terminate the pregnancy so we could “try again for a healthy baby.” Abortion was something my husband and I never even considered. I didn’t even submit to having an amniocentesis done to find out if Mary had Down Syndrome. Keith and I knew that Mary was a gift from God, and we didn’t want to do anything to put her life at risk. There was statistically a greater chance that the amniocentesis would cause an “unintended abortion” than that Mary would be born with Down Syndrome.

Well, Mary WAS born with Down Syndrome, but not the heart defect. Her facial features tell anyone in the know that she has Down Syndrome. Mary’s aunt Amy, who is a NICU nurse, recognized the Down Syndrome the first time she saw Mary, but she waited for Keith and me to announce that fact in our time (which truly was only a little while after Mary was introduced to her Aunt Amy and the rest of the Chancey side of the family).

Patrick Eades, who oversees the Care Net centers in Brunswick, Camden County, and Jessup, shared tonight that every abortion results in a story never told. I can’t imagine this world without Mary in it. She is a prayer warrior, and has a compassionate heart. Her story is a story worth telling. I am grateful for her presence in my life, and for the opportunity to share her story!