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Beautifully and Wonderfully Made: Jordan's Story

October 19, 2012

Christie Boyer is the mother of two boys, Hunter and Brooks, and a little girl, Jordan. In honor of Down syndrome awareness month, take a moment to hear her story.

On December 3rd, 2002, our family entered a WONDERFUL new world with the birth of our BEAUTIFUL daughter, Jordan Elizabeth. With two older brothers, 15 months and 6 years, waiting to meet her, there was much excitement surrounding this birthday. However, our journey together would begin very differently than we expected.

Our biggest regret is that we didn't CELEBRATE Jordan's birth the way we did our boys. Sadly, the words wonderful and beautiful were not ones we chose to define that day. Although our journey would include meeting AMAZING children, families, teachers and specialists along the way, we couldn’t see beyond all the unknowns before us. She arrived a month early, but we had no idea there were any medical issues until moments after her birth when her Dad overheard two nurses talking about her features as they were working on her. In the few minutes we were able to hold her, she looked so frail and lifeless. A Down Syndrome (DS) diagnosis was confirmed the first week she was in the NICU as well as an Atrial Septic Defect (ASD). She had many health issues that tend to be more commonplace with DS. Thankfully, her ASD closed with no surgery required by the time she was 4 years old. She learned to walk by age 3 with physical therapy and the help of a walker. Feeding was difficult with daily supplements through a feeding tube at home. What a big day it was when she finally reached 20 pounds – just before her 3rd birthday. Her first eye appointment revealed cataracts on both eyes resulting in three surgeries with lens implants between the ages of 2 and 5. Two ear surgeries would follow to remove a cholesteatoma that eroded away the eardrum and the smaller bones within the middle ear. A prosthetic used during the second surgery was successful in restoring her hearing to within normal range!

Those early years seemed all-consuming with therapists and specialists, but through it all, her sweet spirit and joy shined through. Having her rearranged our priorities instantly and reminded us what was truly important in life. She CELEBRATES love and life and simply makes us better people, better parents.  Having older siblings has helped her tremendously, and we’re so thankful she has two older brothers to model after (with exceptions!). We expect the same behaviors from her that we expect from our boys and have tried to raise her no differently. Do we wish she had no limitations? Absolutely! But then we would still have ours! We wouldn't trade this walk for anything!

If you are a new parent, be encouraged to take one day at a time, not to think too far ahead, as each day will have enough of its own to work through. (I still can't think too far ahead without feeling overwhelmed). Plug into a local support group as soon as possible. There were days it was easier for us to stay isolated, but our families and local support group were a wonderful source of encouragement and information for us. We’ve had wonderful reunions at The Family Café Conference in Orlando each year. It’s a wealth of information for all special needs kids, their families, caretakers, and teachers, anyone who wants to learn how to be a better advocate for their child.

Early Steps is Florida's early intervention system that offers services to infants and toddlers with special needs or developmental delays (thru age 3). They will evaluate and establish any services your child might need such as occupational, physical, speech, feeding, and behavioral therapies. Jordan initially received physical and occupational therapy as well as feeding and speech therapy at home through organizations like Easter Seals and Shriners. They came to our home, which was very helpful that first year with our two young boys.

Our BEAUTIFUL girl is now 9 years old and in 4th grade. School, friends, and family fill her days and she’s excited to be planning her first sleepover. She’s covered every detail, from getting phone numbers to picking out fun things to do. In preparation for the big day, she used her vacuum to “clean” the whole house today! She’s smart, stubborn, independent and often uses the phrase “I’m 9 years old now” to bargain for more privileges. Music, movies, reading, and family are her loves. But most of all, she loves CELEBRATING birthdays, anyone’s birthday! For her 10th birthday, she’s requesting concert tickets for The Fresh Beat Band and a trip to Sea World with her favorite teacher.

We have much to be thankful for and many reasons to celebrate this WONDERFUL life!

For more information on services offered in the Central Florida area, contact the Developmental Center for Infants and Children/Early Steps.

Looking to get connected? Check out the Down Syndrome Association of Central Florida, which serves over 9,000 individuals and families.

 

 

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