Category Archives: Parent Advocacy

Happy Father’s Day from “Heart to Heart with Anna”!

HappyFathersDay

Image courtesy of bugtiger at FreeDigitalPhotos.net 

I came to appreciate fathers in a whole new way when I began working on the book The Heart of a Father. That book is a compilation of essays by 50 men from around the world. Most of the men are fathers of children born with congenital heart defects. Some of the men are adult survivors of congenital heart defects. We even had a chapter by grandfathers of children with congenital heart defects. The Heart of a Father is the companion to The Heart of a MotherThe Heart of a Father was published 10 years after the mothers’ book and we discover what happened to some of the families we learned to love when the husbands shared their own stories.

The men had a different story to share. Their stories focused on different themes than the mothers’ essays did. The fathers talked about how having a child with a heart defect affected their marriages, their faith and how some of them felt stuck in a Catch 22 situation. The essays were touching, loving and brutally honest. They made me feel their anguish, their pride and their quandaries. I left feeling like I better understood what men feel like when their worlds fall apart because they’ve been told their children could die from their heart defects, or worse — because their children have died due to their heart defects. The mothers’ book had one chapter devoted to losing a child; 10 years later the dads needed two chapters — one called Shooting Stars for the essays of the babies lost too soon and another chapter called Short Journeys for essays by contributors sharing the lives of adult loved ones taken too soon.

AmazonSmile QR Code

Many of us enjoy buying something special for our fathers during this time of year. I know that it means as much, if not more, for children to make something, write a card or letter or, better yet — to get together to spend time with their fathers. If you would like to find something special for your dad, you can help out Hearts Unite the Globe and the “Heart to Heart with Anna” radio show by shopping using the AmazonSmile program. If you go to http://smile.amazon.com/ch/46-4352863 before you shop at Amazon, then 1/2 of 1% of qualifying purchases will be sent to Hearts Unite the Globe. This will allow us to continue free programming for the congenital heart defect community. Our programs feature dads, moms, survivors, nurses, siblings, doctors and many others in the heart community. This year, I hope you’ll pay special tribute to the remarkable men in your life. I know I will.

 

 

Tribute to a Heart Dad

Lauren&Frank

Lauren and Frank Celeskey

Today’s radio show is a tribute to Frank Celeskey. He came on the radio show back in Season 3 when the theme was Finding Your Voice and Frank was terrific about sharing his concerns and what it was like for him to watch Lauren grow up.

The title of the show Frank Celeskey was on was called “Parenting Changes: When Your CHD Warrior Becomes an Adult” and it was interesting to hear him and Alysanne Crymes discuss the changes they’ve endured watching their children — both born with critical congenital heart defects requiring surgery in infancy — grow up. Like many heart warriors, their children didn’t only have their heart defects to contend with, but other medical conditions as well. I enjoyed hearing Alysanne and Frank talk about how they dealt with that situation.

Lauren and her brother have started a GoFundMe page to help their mother with expenses for their younger brother. This death was totally unexpected and no financial arrangements had been made to take care of his son, who will be a senior in high school next year. Lauren and her older brother are doing what they can, as is their hardworking single mom, but any help from the heart community would be greatly appreciated.

Next week we’ll begin Season 8 of Heart to Heart with Anna. The theme for Season 8 is: Care for Adults with Congenital Heart Defects and we have a terrific line up of shows that we are so excited about! Please tune in to hear Frank’s show, if you haven’t done so already and be prepared for next week’s brand new episode!

Healing a Broken Heart

Esther,Elvis,Anna,BraveLittleHearts

Esther, Elvis and me holding my iPad featuring the Brave Little Hearts SA logo.

Over the twenty-one years I’ve been part of the heart community, I have seen many miracles but I haven’t had a chance to do as much as I’d like to help in the healing of a broken heart. Recently, however, something happened that has made me feel euphoric and very blessed to be part of such a tight knit community that has members willing to make a miracle happen.

In August 2015 I received a letter from a mother (Esther) who told me that she found me on the Internet and that she was a single mother of an only child (Elvis) and that he really needed open-heart surgery. I’ve received letters like this over the years but most of the letters were requests for financial donations. This mother told me that she needed help. She didn’t ask for money; she asked for help. In addition to that, she sent me scanned in copies of her son’s letter from his cardiologist stating what his heart condition was and that he needed surgery as soon as possible.

I had connected with two dads online who were from Africa and who had started nonprofit organizations. I immediately contacted these two dads and to my surprise, within 24 hours one of the dads told me that he had found a surgeon willing to do the surgery! I thought that would be the end of the situation, but it wasn’t. That offer fell through which I found out about when I wrote to Esther to ask how the surgery had gone. I immediately reached out to the two fathers again to see what had happened and what we could do to help the child.

Fareed Matthews of Brave Little Hearts SA was persistent. He continued reaching out to many other organizations hoping to find a surgeon to help Elvis. By November Fareed had found someone in India but the problem was getting the mother and child to the facility. Fareed continued undaunted and found someone in Turkey and Israel but there were complications with both of those situations, too. Then in January 2016 Esther replied to a note I had written to her to inform me that Elvis would have surgery in January in Texas! I couldn’t believe it!

Last week I drove to Dallas to meet Esther and Elvis. I was pinching myself. I couldn’t believe that in 5 months’ time I went from communicating with a complete stranger in Africa to actually driving to meet that woman — who now felt more like a friend than a stranger.

I cannot thank Fareed Matthews and HeartGift enough for their dedication to people like Elvis. This little boy has a new lease on life. His broken heart is now mended. He spent only one day in the ICU and is expected to be released from the hospital soon. It’s just amazing to me what loving, caring and concerned individuals can do to mend a broken heart.

Fareed told me that he had written to 18 organizations in 9 countries across 4 continents before Elvis’ help was finally secured. Fareed’s daughter was born with a number of critical congenital heart defects and she is the angel who has inspired him to help others born with broken hearts. I feel blessed for the contact I’ve had with everyone involved in this miracle.

Season 3 Line-Up of Shows

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Dear Friends of “Heart to Heart with Anna,”

I’m so excited to announce our new line up! Please let me know if you’re interested in being on one of these shows. The first two shows have already been taped but I’m looking for Guests for a number of the shows. The theme for this season is “Finding Your Voice.” Naturally, there are many ways we can find our voices. This season we will investigate many different ways we can find our voices.

Episode 1) An Interview with Heart Mom, Advocate & Author Lori Jones (already taped and available here: http://www.blogtalkradio.com/hearttoheartwithanna/2014/10/14/an-interview-with-heart-mom-chd-advocate-and-author-lori-m-jones)
Episode 2) Empowerment Through Helping Others in the CHD Community (with Wayverly Mouse-Evangelista, Susan Vanderpool and Natalie McGee). Here is the link:
http://www.blogtalkradio.com/hearttoheartwithanna/2014/10/21/empowerment-through-helping-others-in-the-chd-community

In no particular order (just numbered to help me keep track of them all!)

Episode 3) Irregular Heartbeats: When HLHS Survivors Need Pacemakers *
Episode 4) Living with Eisenmenger’s Syndrome*
Episode 5) Music Therapy while in the Hospital
Episode 6) Political Activist and HLHS Dad*
Episode 7) Alternative Heath Choices for CHD Survivors*
Episode 8) Forever Young: Raising a Child with Cognitive Impairment*
Episode 9) Art Therapy in the Hospital
Episode 10) Parents Advocacy when Your CHD Warrior Becomes an Adult*
Episode 11) Raising Money for CHD Research
Episode 12) How CHD Survivors (children) Tell other Kids About Their CHDs
Episode 13) Adults with CHDs — Becoming Self-Advocates*
Episode 14) Teen and Young Adult CHDers’ Rebellion — Tattoos, Piercings and Alcohol*
Episode 15) ACHDers on the Hill (being an advocate in D.C.)*

* potential Guest(s) identified but not confirmed

I’ve had many great suggestions from my Listeners and Guests regarding upcoming shows. Your emails are read by the host, Anna Jaworski, personally. We appreciate your participation and look forward to producing many more fun and interesting shows.

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