Tag Archives: Down syndrome

Why does this FBI agent run with his daughter with Down syndrome?

November 7, 2013

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If you haven’t seen this ESPN video, here’s your chance.

It’s about  how a man with “genetically superior genes” reacted when he discovered he and his wife were expecting a child with Down syndrome. “I felt like I was getting a broken baby,” he tells the journalist. His wife was afraid he’d run away–quite literally. But he now knows that this little girl is his “light in the darkness,” and what a privilege it is to be her daddy.

  • What was the turning point that made Heath White respect Paisley’s life?
  • Why does he write her letters and run marathons with her?

Watch and find out.

I’m flabbergasted, and thrilled, that such a popular sports news channel produced this pro-life story!

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Baby Fiona: A Fighter!

October 30, 2012

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In October our church concentrates on Respect Life issues. It is also a month designated to Down syndrome awareness. I wanted to share  story with you about a lovely couple who became a mommy and daddy recently. Their tale encapsulates both themes for this month beautifully.

Dealing with infertility

Stephanie and Joe Palewicz of Vadnais Heights tried for four years to conceive a child. Stephanie said, “Ask anyone that has had trouble getting pregnant and they will tell you how stressful it can be. There were times that I thought I would never get to be a mom. There were also times I thought if one more person tells me, ‘once you stop worrying about it, it will happen’ I was going to scream. I know they meant well, but I’m confident that I speak for pretty much everyone dealing with infertility in recommending that people not say that.”

Which is good advice for us all.

A blessing

Fiona Grace Palewicz

On October 20 Stephanie wrote: “5 years ago I married my amazing husband Joe Palewicz. Today, exactly 5 years later, our lives have forever changed as we welcomed our baby girl into our world. Fiona Grace Palewicz, 7lbs, 7oz, born just after 7 this morning. I am the mommy to the most beautiful, sweet baby girl in this entire world. She is strong and she is a fighter. Fight Baby Fiona, fight. You are amazing!”

Why does this newborn have to fight?

Little Miss Fiona Grace has Down syndrome with a congenital heart defect plus some unexpected complications.

A prenatal diagnosis

When Stephanie was 18 weeks into her pregnancy she went through routine testing. The results for Trisomy 21 came back with a probability of 1:10. “I remember that exact moment, feeling like my heart had just hit the floor 1,000 feet down. The doctor explained that means that 90% of the time everything is fine and that sometimes these tests give false positives. We just needed to do a Level 2 ultrasound. No big deal. Oh, and genetic counseling (whatever the hell that is, I thought).” After their level 2 ultrasound the doctor told them that their baby had a heart defect.

Stephanie recalls in her blog called Life Unexpected, Love Unimaginable:

“I know she said other words following those, but they are blurry in my mind. I remember feeling the instant tears burning in my eyes as I thought of my poor little baby girl. She talked about the defect, that the middle part of her heart didn’t form, she called it an AV Canal defect. She talked about the baby needing surgery after birth. I cried harder. My poor little baby girl on an operating table?… I thought it couldn’t get any worse. Then she told me that this defect was one that was very common in children with Down syndrome. My heart had now dropped so low, it was digging itself a hole in the floor. I asked how this defect increased my chances, she said significantly.”

Stephanie explains very honestly:

“She said they wouldn’t terminate the pregnancy without an amniocentesis. Holy crap, ‘Terminate’? How did we just go there??? Okay, rewind. No way! I tried to clear my mind and breathe. When I received Fiona’s diagnosis of Down Syndrome, I was hardly halfway through my pregnancy. I remember when the doctor used the word ‘termination’ with us at that time and I remember how the thought of it took my breath away. Fortunately for us, although it was spoken of, we were never pressured to terminate and were offered a lot of positive and hopeful information immediately from our doctors and genetic counselor.”

Lifesite News stated that last year a Time magazine article reported statistics pulled from a 2009 edition of the Archives of Disease in Childhood. As a result of more sophisticated prenatal screening, and with nine out of ten babies aborted following the prenatal diagnosis of Down syndrome, the birth rate for these children has been dropping for decades, decreasing by 15% between 1989 and 2005.

The Palewiczs’ friend and real estate agent, Angela Hames, told me, “They never thought twice about choices, and were shocked at other people’s assumption that they would have done anything differently.”

Feeling hopeful again

less than 3 weeks after the adverse diagnosis the Palewiczs were feeling anticipation again. Stephanie stated, “Thinking positive about our future and letting go of hopeless feelings helps. We are more energized about this pregnancy and our family’s future.”

Something that helped them climb out of despair and uncertainty is that they learned more about having a child with Down syndrome. They did this by connecting with a lot of new people through friends, parent support groups, online forums and communities. These people enriched their lives and brought great comfort and hope for the future.

Baby showers with friends and family helped the expectant couple to share in their joy. Notes of encouragement helped them to sustain that anticipation. Here is a lovely Face Book post from Stephanie’s father:

A Dream Come True, A Second Time

Words cannot describe the emotions I’m experiencing right now. I remember how overwhelmed and thrilled Mom and I were when we welcomed you, our only daughter, into our lives. Now it’s your turn to have a dream come true, to experience the overwhelming joy of Fiona’s birth and to share that joy with Joe, and with family and friends. You can be sure that our first granddaughter will be cherished, and of course spoiled, just like her cousins, Jake, Josh, Joseph. That IS a grandparent’s primary function. Love you and hope the final part of you journey is bearable.

Baby Fiona’s first days have been rough…that’s why she’s fighting

The new mother wrote: “Fiona is truly a gift from God and a gift that was meant especially for us.  On her 2nd day of life, she became very ill with necrotizing enterocolitis and a blood infection. On her 4th day of life, she had emergency surgery to repair 2 bowel perforations, but instead she had 4 sections of bowel removed and now has 4 ostomies. We are currently in the NICU at Children’s Hospital Minneapolis. When I watch this happen, I am in terrible physical pain myself. I feel so horrible for her. I wish I could take her pain away and give it to me.”

Father O’Gara from Assumption Church in St. Paul came to the hospital to perform Fiona Grace’s baptism. As I wrote this story at noon on October 30, the wee child was recovering from surgery to place a central line. It went well! I would like to echo what her mother said on the day she was born: “Fight Baby Fiona, fight! You are amazing!” (Please pray for the family.)

(Some suggested websites:

http://www.ndss.org/ (National Down Syndrome Society) An advocate for people with Down syndrome and Baby Fiona’s Caring Bridge site: http://www.caringbridge.org/visit/fionapalewicz)

 

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Irish Photographer Captures Images of Down Syndrome

March 8, 2012

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Photo by Richard Bailey

When Irish photographer, Richard Bailey, had a daughter born with Down syndrome, he started to research. He discovered that the images available to people were misleading and negative. He wanted to show the lovely side of family life for those with Downs. He states, “They can do all sorts of things if they have the proper support.”

His goal was to create hope and showcase the individual—not the condition. And he did this through his traveling exhibition. Get a taste of his work by viewing this video:

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The Greatest Gift I Was Ever Given

July 18, 2011

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My mom came over the other day. She was touched by Fr. Michael O’Sullivan’s homily at Assumption Church. This priest’s name probably doesn’t ring a bell, and that’s because Father is a missionary, working in Tanzania for the last 14 years. But the story my mom heard actually takes place in Father’s homeland of Ireland. It’s about a famous athlete and his son who was born with Down syndrome.  I had the pleasure of meeting Father O’Sullivan at Joseph’s Restaurant and he gave me permission to share an excerpt of this homily with you.

 A Wee Bit of Father O’Sullivan’s Homily:

Courtesy of footystamps.com

Growing up in County Kerry in the 60’s, Mick O’Connell, a Kerry Gaelic Footballer known as “Micko,” was our boyhood hero…….. and the way he played football was to us very magical.  No one else on the planet could rise up and pull down the ball from the skies. We all wanted to play like him and we’d often pretend to be like him as we played on the local football field.

In 1972 he married Rosaleen, and they had three children: Máire, Mícheál and Diarmuid. For Micko and Rosaleen, the news that their youngest son, Diarmuid, had Down’s syndrome was a very disturbing experience. Their hopes and dreams dashed and it caused them to “weep together.”  But since then, their hearts have turned to happiness and a deep love for their special son. “Now,” says Mick, “we weep with joy.”  He describes Diarmuid as a great friend, and considers him the “greatest gift I was ever given.”

“There are times that I’m away, if I just speak to him on the phone or just think about him, it’s something that gives me great joy and happiness.” Diarmuid became for Micko the light of his life. Apparently the mere mention of his name brings jubilation to this great man.

“He has brought untold joy into our lives and we love him dearly,” says Micko whenever he is interviewed.

 Assisting People With Down Syndrome

Father O’Sullivan has something in common with his hero, Mick O’Connell– Both gentlemen are involved with helping those with Down syndrome.

“My wife is deeply involved with raising funds for the handicapped on the island and I support her as much as I can,” Mick O’Connell said. He and Rosaleen worked to establish a residential and training facility, called Tíg An Oilean, on Valentia Island which is off the west coast of Ireland– and from whence Micko would row a fishing boat to the mainland for school and ball practice.  They donated the land for the building and they also devote a good deal of  time fundraising for it.

Father O’Sullivan ended his homily saying the following about Micko’s generosity: “This facility is located, indeed, on Michael’s own land–on the very field on which he was raised and honed his immaculate and unequalled skills. It is a place that enables Diarmuid, now in his 30s, and his friends who have Down syndrome to live life to the full in their native place among a community which Rosaleen describes as, ‘the salt of the earth.’ ”

Below the Equator from Ireland lies Arusha, Tanzania–the town in which Fr. O’Sullivan formed his parish. He and his workers have set up a local support group for children living with disabilities and their families, including many with Down syndrome and Cerebral Palsy. He told me, “We have 65 children attending weekly therapy sessions with a volunteer from Ireland. We have planned to set up a creche in the new centre we are building to give the parents and ‘carers’ some time so that they are not overwhelmed by their situation. Living in a society where disability is still a taboo can be a very lonely place.”

Father Michael O’Sullivan is saying Masses at Assumption for the month of July. If you happen to see him, tell him, “Tanks a tousand!” According to the priest, it’s how the Irish say ‘Thanks a thousand.’ He and Micko’s family–and other heroes who embrace life–need to know how much we appreciate their beautiful work!

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