Thursday, March 20, 2014

Celebrating 2014 World Down Syndrome Day- No More Worries!

Almost exactly four years ago we found out during our second pregnancy that our baby boy, Joseph David, had Down syndrome. We had a prenatal diagnosis and to this day I will never forget the geneticist telling my husband and I that our son did indeed have an extra 21st Chromosome. Trisomy 21. Down syndrome. Words I had never thought about before.

At the time and for a long time after I remember worrying, worrying and more worrying. Worrying about things that I had absolutely zero control over. In some cases I felt like I was worrying just for the sake of worrying. I was worrying because somehow I had gathered from society that I should worry. How would we raise a child with Down syndrome? How would he get along with his brother? 

I worried about whether he would ever date. Ever get married. Ever get a job. Would he have friends? Would he need more care and more love than I could provide him with? Would he be funny? Have a sense of humor? Fit in our family.

My worries came in all sizes. Large and small. They were never-ending. Exhausting.

And a complete waste of time. Oh, the time I wasted worrying. The nights I would lay in bed and worry and wonder what in the world would happen to this child of ours.

The energy I spent was endless. I worried and worried and worried. 

What we learned was that the worrying was pointless. Every little moment spent wondering and worrying was time that was wasted and that I could never get back. 

Today we practice a different approach to raising Joey. It's called living in the present. It's called being present. It's about enjoying Joey where he is right here and now and trying our very best not to worry about tomorrow, next week or next year.

Instead of worrying we focus our energy and life towards helping Joey be the best he can be. We do Physical Therapy, Occupational Therapy, Speech Therapy, Horse Therapy, Swim Therapy and we just added Music Therapy to the mix. We try to expose him to the world and help give him opportunities to socialize and just be a little boy. 

Instead of worrying we devote our family to advocacy for Down syndrome and to helping raise awareness by volunteering for organizations like Stand Up For Downs, and Buddy Up Tennis as well as other organizations like The Up Side of Downs and United Disability Services

Instead of worrying we work on helping the world and the community realize that individuals with Down syndrome can do anything! Hold jobs, get married, workout and so much more. 

Instead of worrying about if Joey will ever have a job, I daydream about where he might like to work. 

Instead of worrying about if Joey will ever start to walk on his own, I daydream about when he starts running and I have to chase him.

Instead of worrying about if Joey will ever be able to fully talk and communicate, I daydream about the funny things he will say.

Instead of worrying- we are living. We are celebrating World Down Syndrome Day 2014 and we hope you will celebrate with us. Thank you to everyone who helps make our world a better and more accepting place for individuals with Down syndrome every single day.

To every single person out there with Down syndrome- this one is for you! Happy World Down Syndrome Day!!!

Monday, February 24, 2014

Congenital Heart Defect Awareness Month - Honoring Super Joe's Amazing Heart

We spend the majority of our time raising awareness and advocating for Down syndrome, however, there are other causes that Super Joe's life has helped us to become more aware of and that have made us more cognizant of the lives of families with children who have extra health concerns around us. 

Photo by Nat.
February is Heart Month and approximately half of all infants born with Down syndrome have a heart defect. Many of those defects have serious implications and require surgical intervention.

When we were just 22 weeks pregnant with Joey we learned that he might have a heart defect. Within two weeks were had a fetal echocardiogram and his congenital heart defects were confirmed. Joey was born with an Atrial Septal Defect, which is a large hole between the two collecting chambers. Additionally, he was born with an abnormal mitral valve, which in his case is a cleft mitral valve that causes leakage.

Photo by Nat.

Most recently we found out he also has a PFO, which is a Patent Foramen Ovale. In 75% of the cases a PFO will close on its own shortly after birth. Usually this is a heart defect that is caught early on, but we did not know about Joey's until his last echocardiogram with his cardiologist. Plus, we have learned that Super Joe never settles on being "typical" or playing by the rule books- he usually has his own entirely unique spin on every condition. 

Learning about Joey's potential need for open heart surgery while we were pregnant introduced an entirely new world to us. Suddenly, fetal hydrops and a diagnosis of Down syndrome took the back seat and we were facing the facts that if Joey survived the pregnancy (of which he was given a mere 2% chance of being born) he would most definitely need open heart surgery to repair the large hole in his heart. 

Instead of maternity visits to the high risk fetal medicine doctor, suddenly we were in the waiting room of the Akron Children's Heart Center along with children of all ages waiting to learn the latest on our babies' heart condition.

Photo by Nat.

Joey's cardiologist at Akron Children's is incredibly professional, incredibly skilled and was 100% accurate in his diagnosis. I still remember the day he told us that Joey would likely need open heart surgery to repair his ASD. He said it with such compassion and care and he told us that he truly hoped he was wrong. Unfortunately, he was far from wrong.  He was completely correct and from that moment on we started the long waiting game of trying to figure out when and where Joey would need his heart surgery after he was born.

Looking back now I can hardly believe the numbers of appointments, the stress, the worrying and the waiting that we all went through. 

After he was born we would spend every day wondering if his lips were starting to turn blue. We wondered if he would go into congestive heart failure before we could get his heart repaired. I honestly don't really know how we survived those final months of pregnancy and then those long 9 months until he finally had his heart surgery at the University of Michigan.

Joey and his heart surgeon, Dr. Bove.

Seeing him for the first time after surgery.

Seeing Joey for the first time after his surgery was surreal. He was in a medically induced coma, his little body was swollen from all the fluids and his hair suddenly had taken on a strange neon yellow quality. He was alive. But he just wasn't quite Joey, yet.

After nine long days of Tom and I staying beside his bed day and night we were finally able to make the three-hour drive home back to Ohio. 

I remember a conversation after we returned home with an acquaintance who made the comment  that she didn't really understand what the big deal was since it was just a "routine heart surgery." Needless to say, we aren't really acquaintances anymore. Any surgery, any procedure is anything but routine for the child and the parents who watch their child go through it. For us, open heart surgery was unmarked territory. It was terrifying for all of those months through the pregnancy and then all of those months while we waited for his heart to grow bigger and to finally have the surgery.

Knowing that his rib cage was being cut open while we sat helplessly out in the waiting area nursing cups of coffee, knowing that he would have drainage tubes and scars and that he would be in pain and would have no way of telling us was anything but routine. It was hell.

His first smile after surgery.
Tubes and wires were slowly removed each day.
But he made it. We made it. We all survived. Joey's Congenital Heart Defects are a part of our lives. We take any illness very seriously. We cringe when he eats a blue sucker or Popsicle. We continue his yearly appointments with cardiology.

And we wait. We wait for that day when his cardiologist tells us it is time to do it all again. When he tells us that the time has come for Joey to have another surgery to repair or replace his Mitral Valve. The problem is, when he had his first heart surgery, the surgeons were not able to repair his Mitral Valve because it was simply too small. Someday it will be time to do this all again. 

In the meantime, Joey is doing amazing. He is thriving. He is learning. He is working on talking--his latest phrase is "I am strong!"while he holds up his muscles. 

He is working super hard on learning to walk. He chases Hershey, Tommy and the rest of us. The past five months have been the longest he has ever gone without undergoing surgery and the difference in his health and stamina is remarkable. He finally has the opportunity to have all of the anesthesia out of his body and all of the trauma of the past three years of surgeries behind him.

In his first three years of life he had 7 surgeries at 4 different hospitals- Akron Children's, University of Michigan, The Cleveland Clinic (leading with 3 of those 7) and University Hospitals. 

We think that 2014 is Joey's year. We are hopeful that by the time the Buddy Walk rolls around on July 26th that he will walk over the finish line on his own.

Whatever he does- it will fill our hearts with love and pride. However he does it will be his own unique way.  

We are so proud of our Congenital Heart Baby and we are so grateful for the care and treatment he has received. If you have or know of a Congenital Heart Baby- we also send you our prayers and love for your own journey of the heart.

Photo by Nat.
As far as the next time he needs open heart surgery? We will cross that bridge when we get there and in the meantime we plan on enjoying every single day.

Thursday, January 23, 2014

CONTEST! The Akron Rotary Camp Wayne Homes Chili Open 2014!!!

For more than 88 years, the Rotary Club of Akron has sponsored the Rotary camp. This coming summer, more than 1,600 children and adults with disabilities will attend the Rotary camp. Campers will enjoy all the traditional activities you might remember from your own time at summer camp such as swimming, canoeing, arts and crafts, sports and games, team building and most importantly- making lifelong friends and memories. For parents who have a child with special needs, knowing that there is a safe and fun place for your child to attend summer camp is something that puts your mind at rest and heart at ease. Knowing that Joey will get to swim in the lake, make s'mores and stay overnight at a real camp is something that gives Tom and I a great amount of hope and gratitude for what the Akron Rotary Camp has created.

Akron Rotary Camp has an annual awesome fundraiser called the Chili Open. It is held every winter and they have given Cowgirl Up! four Clubhouse passes (a $100 value!) to give away to a reader who would like to attend the Chili Open! All you need to do to enter is either leave a comment or send an email stating why you'd like to attend the Chili Open this year and you will be entered into the random drawing. Results will be posted here and on Facebook next Wednesday. Good luck!

What is the Chili Open? Imagine nearly 1,000 polar bear golfers converging on Hale Farm and Village in Bath, Ohio. On February 1, 2014, the historic Hale Farm will be transformed into seven golf courses with nine holes each. The hole distances will range from 65-125 yards. Hole-in-one and closest-to-the-pin prizes will be awarded.

If you aren't into Polar Vortex golfing, join the golfers and spectators as they enjoy all-you-can-eat Whitey's Chili inside the clubhouse.
Date: Saturday, February 1, 2014
Tee Times: 8 am to 2 pm (tee times will be assigned based on first-come, first-served preferences)
Location: Hale Farm & Village, Oak Hill Drive, Bath OH  44210 
Fees: $200 per foursome ($50 per individual, $30 of which is tax-deductible)
Registration Deadline: February 1, 2014

For more information on the event, please visit the

Wayne Homes Chili Open Website.