This week I read a post on Funky Heart's blog. This adult CHDr with Tricupsid Atresia (my own son's condition) inspires hope in me for a long, fulfilling future for Sam. This past week he had a post about being himself vs being a heart patient. He talked about how it was hard for him at times to identify as anything but a heart patient. He talked about friends and family who would introduce him from the heart perspective before the human perspective. He talked about watching a mom ask her son to pull up his shirt to show people the scar. He wanted everyone to know to let your kids be a kid, and not a heart patient, as often as you can.
I appreciate his post. Sam is still small, and I see how I could easily let this heart defect define him without realizing I was doing it. I will certainly have to watch how I speak around him and about him as he gets older.
But at the same time, I think there is good reason why heart moms, dads, and families get in this predicament. Two major reasons, really. For one, pride. I know I am so so SO proud of what my son has already survived. I will continue to beam with pride as he grows, reaches milestones, and smash everyone's original expectations, including my own.
But the second reason is a little more selfish. I know that I do a lot of reaching out to others in the CHD community, trying to find hope, peace, and answers. I know that I do a lot of 'preaching' to the non-CHD community, trying to spread awareness. I know some of this reaching out on both ends is to remind everyone of the see-saw we sit on daily. Sam looks so healthy. And yet his heart is essentially dying. From the outside, it is so easy to write off these heart kids as nothing but average children. But they are fighting the fight of a lifetime everyday. We, as parents, are uniquely aware of the true fragility of the life of a CHDr. Just today I was made aware of another little heart who didn't make it through his first week of life. Aaron had his first heart surgery at two days old. While his parents were praying over another child with another CHD family in the CICU, their own son arrested and died. It just makes me sick to my stomach. My heart breaks for this family, and I feel so close to their loss even though we have not experienced the same. It's just another reminder of a heart family's reality.
So while I will certainly make a conscious effort to let Sam define himself, rather than letting his heart define him, I will also not stop reaching out to other CHD families and to the general public. Those involved in the CHD world need support, and those outside of the CHD world need to know the struggle our children face daily so that we can all help bring an end to CHDs entirely.
~Kathy
Monday, August 30, 2010
Tuesday, August 24, 2010
Every Heart Has a Story
Thanks to Stef for organizing this Heart event. I'm a day late posting, but at least we made it! Check out Stef's web page for MANY other amazing heart stories.
Our story began at 20 weeks into our pregnancy. The ever-exciting 20 week appointment came, and we were soooo ready to learn the sex of our first child. It was at that appointment that we learned our son's heart wasn't built just right. An appointment with a specialist the next day confirmed we had Tricuspid Atresia, Pulmonary Stenosis, ASD, and VSD (combined would be called Hypoplastic Right Heart Syndrome). The specialist, who had no bedside manner, told us we should consider terminating the pregnancy, since our baby would likely not live long. We told him we didn't care how long he lived, he was OUR SON.
The decision was made to do everything we could to prepare for our special delivery. Many many specialist appointments led us to believe we would deliver in our hometown, be transferred immediately to Atlanta where our son would undergo his first open heart surgery at just a few days old. We knew he would need this surgery and at least two more to survive. Sam shocked us all by not only coming early, but being extremely healthy and stable. We beat the odds and didn't need this first surgery. We got to bring Sam home just in time for Christmas!
Over the next few months, Sam got more and more blue. We scheduled his Glenn surgery for April. Sam, once again, had other plans. Through a set of circumstances I can only describe as miraculous, Sam wound up crashing at our local hospital. His sats were in the 30s, his blood pressure was unreadable, and his heart rate was at human max (220). I call this a miracle because at any moment, this could have happened at home or daycare, and it was a fluke we were in the hospital in the first place. The cardiologist on call worked over the phone with doctors in Atlanta to get Sam stable and transferred quickly up to the CICU in Atlanta. I will never forget watching Sam fight for his life...watching his vital signs wax and wane...seeing the look on our cardiologists face when he told us he was truly unsure if Sam would make it through the night. But the hand of God was everywhere that night, and Sam survived to get to Atlanta and have his Glenn surgery early. He had a nearly uneventful recovery in Atlanta, and within a month was back to normal!
We have had an amazing life since then! Sam is 20 months old and the center of our world. He will still need the Fontan surgery, and, someday, a transplant. But currently, Sam is stable, and our cardiologist does not see any need for surgery for YEARS to come!
This post could have been PAGES longer. The details that surround our brief life in the congenital heart defect community fill my brain to the max. As difficult as it has been at times, and as difficult as it is sometimes to see a bright future, there isn't much we would change for ourselves. We have truly been blessed by our experiences since Sam entered our lives, and that includes the lessons we have learned about life and love because of this heart defect.
If anyone is in need of support or assistance in their own CHD journey, please feel free to contact us. We love sharing our story and would love to be a light in the dark for those who need us.
~ Kathy
Sunday, August 22, 2010
Heather
I like to peruse other heart families' blogs. It connects me to our heart world...a world that can feel very isolated at times. A few weeks ago I came across a link on a heart mom's blog to an adoption agency called Reece's Rainbow. This is an international adoption agency for children with Down Syndrome. They do, however, also dabble in facilitating adoptions for children with other medical conditions that make them hard to place. Long story short, I came across a little girl named Heather.
Heather was born in January (two days after my birthday and one day after my husbands, by the way) in the Ukraine. She was given up at birth because of a heart defect, Double Outlet Right Ventricle. She faces surgical correction this Fall in a Ukraine hospital, and no one expects her to survive. This literally killed me on the inside. A surgery that is perfectly survivable in the US will likely kill this child in the Ukraine. I immediately had flash backs to Sam on the vent in the hospital after his surgery. THEN I imagined this beautiful little creature, on the vent in a hospital after her surgery. The difference was, no one was by her bedside. No one was waiting on her in a waiting room for updates. No one was requesting prayers or questioning her doctors about her status. I broke.
I spoke with the adoption coordinator about the possibility of speeding up her adoption so that, if we adopted her, she could have her surgery HERE in Atlanta where her survival rate would shoot through the roof. Unfortunately, the Ukraine government would not let her come early, as there is a 14 month wait for adoptions. But I had really started to get my heart set on this little girl. My husband and I spoke and we were totally ready to start fundraising to bring this girl home with us when she was ready. Again, my heart broke, because before we could pull ourselves together, another family spoke up for her and put their paper work in.
This is a good thing. She WILL have family waiting on her, even if she isn't allowed to leave the Ukraine for surgery. And, since I believe all things happen for a reason, I have decided that the reason God wanted me to come across this little girl and fall in love with her is because I am supposed to let as many people as I can know about her and her plight. We can be a source of prayer for this little girl, who would be lost to the world otherwise.
Her surgery will be sometime before December. If you can spare some time, say a prayer for her and her surgeons, that God will work a miracle for her and have her safe and healthy for her new adoptive parents to pick her up as soon as the Ukraine government will release her. She will never know us, but we can do something big for her. I believe in the power of prayer and I hope you will join me in helping this little one pull through!
~Kathy
Heather was born in January (two days after my birthday and one day after my husbands, by the way) in the Ukraine. She was given up at birth because of a heart defect, Double Outlet Right Ventricle. She faces surgical correction this Fall in a Ukraine hospital, and no one expects her to survive. This literally killed me on the inside. A surgery that is perfectly survivable in the US will likely kill this child in the Ukraine. I immediately had flash backs to Sam on the vent in the hospital after his surgery. THEN I imagined this beautiful little creature, on the vent in a hospital after her surgery. The difference was, no one was by her bedside. No one was waiting on her in a waiting room for updates. No one was requesting prayers or questioning her doctors about her status. I broke.This is a good thing. She WILL have family waiting on her, even if she isn't allowed to leave the Ukraine for surgery. And, since I believe all things happen for a reason, I have decided that the reason God wanted me to come across this little girl and fall in love with her is because I am supposed to let as many people as I can know about her and her plight. We can be a source of prayer for this little girl, who would be lost to the world otherwise.
Her surgery will be sometime before December. If you can spare some time, say a prayer for her and her surgeons, that God will work a miracle for her and have her safe and healthy for her new adoptive parents to pick her up as soon as the Ukraine government will release her. She will never know us, but we can do something big for her. I believe in the power of prayer and I hope you will join me in helping this little one pull through!
~Kathy
Sunday, April 25, 2010
National Donate Life Month
When we first learned about Sam's CHDs, we were told several different figures regarding how long he might live. At first it was three years old, then sixteen, then forty! But no matter what figure we were given, it was usually followed by mention of needing a heart transplant to make it past that figure. Everyone KNOWS about organ donation. But you certainly don't consider the roller coaster of the whole process until you live it.
This month is National Donate Life Month. Please know how important it is for you to be an organ donor, and to let your wishes be known to your family (and not just to your drivers license issuer). And as difficult of a topic as it is to think about, please consider it for your family members, too. There are 89 children between the age of 1 and 5 who are waiting for a heart right now (that's Sam's age group). Your selfless act could save multiple lives (and one day, even Sam's life).
~Kathy
That's not saying we have LIVED it. At first we just knew it was something we would likely face in our future. Then, as part of my coping mechanism, I researched it as a serious, probable event in our future. But recently I have been forced to face the step by step process as lived by some of our heart family friends. Recently, a sweet girl from our own circle of Children's Healthcare of Atlanta heart friends, Emery, was listed and recieved a heart in about 24 hours! We followed a little boy, Mason, who lives on the other side of the US, be listed for months before getting his heart. We have watched a young girl from our hometown, Grace, survive and thrive for years after her transplant when she was just weeks old. The ups and downs and joys and pain of these kids and families is truly awe inspiring. I can't imagine going through all of it, and yet some day, unless some other technology is developed, we will indeed go through all of it.
I have recently become attatched to reading a blog by an adult CHD survivor. I think the reason I have become so attatched is because he has Tricuspid Atresia, which is Sam's root CHD. This man is so grounded and so full of faith. He's a master musician, a husband, and a father. He's what I pray Sam will become. A few years ago, after starting his family, his heart began to fail. He was listed for transplant and waited a year for a donor. He is a transplant survivor, and is thriving. It gives me hope for a future for Sam that involves all the normal things that go along with adulthood, including the posibility of a fulfilling life with a WHOLE heart.
This month is National Donate Life Month. Please know how important it is for you to be an organ donor, and to let your wishes be known to your family (and not just to your drivers license issuer). And as difficult of a topic as it is to think about, please consider it for your family members, too. There are 89 children between the age of 1 and 5 who are waiting for a heart right now (that's Sam's age group). Your selfless act could save multiple lives (and one day, even Sam's life). ~Kathy
Friday, February 19, 2010
Beads of Courage
Our family belongs to a support group called Kids at Heart. It is for families who have been treated by the cardiac surgeons at Egleston Hospital (Children's Healthcare of Atlanta). Through Kids at Heart, I recieved an email today about a fundraising event for an organization that is coming to Sibley Heart Center at CHOA, and I am so excited. I thought I would share...
The organization is called Beads of Courage. It actually exists in MANY pediatric hospitals throughout the country. Their goal is to help 'kids with serious illnesses record, tell, and own' their journeies. They do this by issueing these children beads for every procedure they go through. The beads for each procedure are unique to that procedure, as well as unique to each other in that they are all hand made and donated. Children collect these beads as a record of their journey of survival, and journal about each bead and why it was received as they go. This idea is part of a concept called art-in-medicine, and is meant to be a supportive program for both patients and family.
One part of this program I particularly like is called "Team Beads of Courage". As an athlete competing in any event is asked to make a donation, and is then given a bead. They were that bead during training and then during their competition. After they complete their event, they write a letter to a child who is coping with an illness, and include a photo of them at their event with their bead. The bead and letter are given to a child as part of the Beads of Courage program. The athlete is given a bead of their own, so that they can start their own collection of beads as they continue to compete in events as part of Team Beads of Courage.
This program is coming to Sibley in Atlanta, and I can't wait to get a collection started for Sam. Chris and I plan to participate in the Team Beads of Courage as a way to give back to this program what this program will be giving to our own son. Check out their website for the other 50 hospitals across the country where this program can be found, and get involved if you can!
~Kathy
The organization is called Beads of Courage. It actually exists in MANY pediatric hospitals throughout the country. Their goal is to help 'kids with serious illnesses record, tell, and own' their journeies. They do this by issueing these children beads for every procedure they go through. The beads for each procedure are unique to that procedure, as well as unique to each other in that they are all hand made and donated. Children collect these beads as a record of their journey of survival, and journal about each bead and why it was received as they go. This idea is part of a concept called art-in-medicine, and is meant to be a supportive program for both patients and family.
One part of this program I particularly like is called "Team Beads of Courage". As an athlete competing in any event is asked to make a donation, and is then given a bead. They were that bead during training and then during their competition. After they complete their event, they write a letter to a child who is coping with an illness, and include a photo of them at their event with their bead. The bead and letter are given to a child as part of the Beads of Courage program. The athlete is given a bead of their own, so that they can start their own collection of beads as they continue to compete in events as part of Team Beads of Courage.
This program is coming to Sibley in Atlanta, and I can't wait to get a collection started for Sam. Chris and I plan to participate in the Team Beads of Courage as a way to give back to this program what this program will be giving to our own son. Check out their website for the other 50 hospitals across the country where this program can be found, and get involved if you can!
~Kathy
Saturday, February 6, 2010
Blog Dedication
Since becoming parents to a son with a congenital heart defect, our lives have been consumed by doing everything we can to keep him healthy and happy. I can't even count the number of times I have sat at this computer and searched for information on CHDs, only to be disappointed at the lack of available public knowledge. We, like all CHD parents, have had to figure this heart disease thing out on our own. Well, not entirely alone. We have slowly built up a 'heart family' consisting of strangers from across the country who are going through their own heart journies with their own children. Through them, we have found knowledge, hope, and support. I hope this blog can return the favor. I hope to provide a source of information and support for all those who are seeking it.
I am also hoping this blog can help with our 'parenting' in the future. Being a parent is hard. I've only been one for a year, and that year was rough enough. I don't want to think of how bad it will get when I've got teenagers. And I can't imagine how I am supposed to share this love and attention between MULTIPLE children; one takes enough of me! Add to that the stress of having a child with a chronic medical condition...I'm exhaused just thinking about it. How do we take care of our medical miracle without pushing our other children into the shadows? How do we help all our children live normal lives? In an attempt to separate being a 'heart' family with being a 'normal' family WITHOUT trying to hide our 'heart' family pride, I hope to use this blog to provide an official place for heart related postings. Our original blog (LilWim) will continue to be our family blog, and will hopefully allow us a place to celebrate our children equally and share our family's journey through life with a little less focus on medical queries.
Who knows what these two blogs will evolve into. All I know is that I need a place to share my family, I need a place to share our heart story, and I think that is best done by separating the two and giving them equal opportunity to shine. Keep an eye on them both, and feel free to share your journey with us, too!
~Kathy
I am also hoping this blog can help with our 'parenting' in the future. Being a parent is hard. I've only been one for a year, and that year was rough enough. I don't want to think of how bad it will get when I've got teenagers. And I can't imagine how I am supposed to share this love and attention between MULTIPLE children; one takes enough of me! Add to that the stress of having a child with a chronic medical condition...I'm exhaused just thinking about it. How do we take care of our medical miracle without pushing our other children into the shadows? How do we help all our children live normal lives? In an attempt to separate being a 'heart' family with being a 'normal' family WITHOUT trying to hide our 'heart' family pride, I hope to use this blog to provide an official place for heart related postings. Our original blog (LilWim) will continue to be our family blog, and will hopefully allow us a place to celebrate our children equally and share our family's journey through life with a little less focus on medical queries.
Who knows what these two blogs will evolve into. All I know is that I need a place to share my family, I need a place to share our heart story, and I think that is best done by separating the two and giving them equal opportunity to shine. Keep an eye on them both, and feel free to share your journey with us, too!
~Kathy
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