The Happiest Place on Earth

In February 2013, our son Tyson was given the opportunity to have a wish granted by Make A Wish Foundation of Canada. Wish foundations like Make A Wish grant wishes to children who have life-threatening medical conditions, and as a child with complex congenital heart defects Tyson qualified for a wish. This, in and of itself, is a bag of mixed emotions. On the one hand we feel so blessed that Tyson was given the opportunity to have his wish granted, but on the other hand it is hard to face the reality that he actually qualified for such a wish. When his doctor filled out the forms to verify that Tyson had met the medical eligibility criteria required to have a wish granted, it just reinforced the reality again that our child was born with a life-threatening medical condition and his future is unclear.

The next step after approval was for Tyson to fill out a questionnaire to help Make A Wish narrow down an appropriate wish for him. He had to answer four questions. “I wish to have…” “I wish to be…” “I wish to go…” and “I wish to meet…” The last question was easy for Tyson. As a typical four year old boy interested in all things superhero, he wished to meet Spiderman, and of course Mickey Mouse.   Make A Wish granted Tyson his wish to meet Spiderman at Universal Studios in Orlando, Florida. In addition to meeting Spiderman, a week-long stay at Give Kids the World Village in Kissimmee, Florida was part of the wish package too.

Give Kids the World is a 70 acre village that exists only for families who’ve been granted a wish from a wish-granting organization. They provide accommodations, meals, entertainment and theme-park tickets to the best-loved attractions in Central Florida. Our family lived at this magical place for an entire week, enjoying all that Florida had to offer. After our experience at Give Kids the World village, we now refer to this place as “The Happiest Place on Earth.”

It’s the happiest place on earth because while you’re there, you forget about all of life’s burdens and worries. You don’t cook, you don’t clean, you don’t attend any medical appointments or therapy sessions, you don’t think about all that’s going on back at home. You just get to celebrate life with your family. The happiest moment for our family was watching the sheer thrill on Tyson’s face when he met Mickey Mouse for the very first time, and hearing him giggle and laugh when Mickey pretended to tickle him. Another moment we’ll remember forever was seeing how enthralled Tyson was with Spiderman and revelling with awe when he had his picture taken with the superhero. There’s something about a child’s dream coming true right before your very eyes that makes you want to cry with overwhelming joy.

Mickey (397)Spiderman and Ty

It may seem trivial to some, but to a family who has watched their child endure so much pain and so many medical procedures that you can’t possibly remember them all, seeing their child happy and bouncing all day long and celebrating life is priceless and satisfying. Give Kids the World goes above and beyond what you would ever expect. From the moment we were welcomed by a GKTW volunteer at the airport we were treated like royalty and we literally didn’t have to lift a finger the entire holiday. Not only did we receive more theme park tickets than there were days in the week, Tyson was also given a ‘magic button’ which allowed our family to advance to the front of every ride line up. We enjoyed great food and great service at the Gingerbread House, Katie’s Kitchen, and unlimited ice cream treats at the Ice Cream Parlour. There was nightly entertainment at Julia’s Safari Theater, daily personal meet and greets with all kinds of the Disney characters, and every time we returned to our villa after a day of fun we found a gift for each of our children to help them remember their stay. It’s like Christmas every single day. All of this can only happen because of the 1500 people who volunteer there weekly.

As if the trip wasn’t enough, when we checked we were given a ‘farewell package’ which included a CD with hundreds of pictures of our family that the volunteers had captured during our stay, a “World Passport” which included tickets to local theme parks to enjoy once we arrived back home, and vouchers from various companies willing to donate photos and even make a scrapbook of our trip to help keep the memories alive.

Just a few weeks ago we returned to Give Kids the World for a day as an Alumni Family. Tyson was excited to see Mickey Mouse again and our oldest son was just as excited to go back too – he wanted to visit the Gingerbread House for breakfast because they make the best waffles in the whole entire world. Once again, we were treated like royalty. The volunteers went out of their way to make us feel just as welcome that day as we had during Tyson’s wish trip back in 2013. And once again my husband and I sat back and witnessed our kids having the time of their lives, being silly and having fun; seeing the sparkle of excitement in Tyson’s eyes as he waited for his turn to high-five Mickey Mouse, and enjoying the village through the eyes of our now three year old daughter, who at the time of Tyson’s wish trip was too young to really enjoy it. And of course we made a few visits to the Ice Cream Parlour for unlimited ice cream treats.

Tyson with Mickey Mouse in 2015

Tyson & Mickey 2015

The whole gang with Mickey Mouse in 2015

GKTW 2015

At Give Kids the World, they really do give kids the world. It is, without a doubt, the happiest place on earth.

If you or someone you know has been diagnosed with a life-threatening medical condition and you think they might qualify for a wish, contact Make A Wish or another wish granting organization today and help make their dream become a reality.

To learn more about Give Kids the World, visit www.gktw.org

Melissa 

Heart Month

A Heart Dad’s Perspective

My name is Rob, and my son Branden was born with Serve Aortic Stenosis Bicuspid Valve. Partly because of this condition, he is shorter than kids his age. I’m not the tallest fellow myself and I’ve tried to allow him the confidence in his height – no matter what it may be. I’m told often – much more often than I am told with my other kids that he looks a lot like me.

Which is curious and more than a little bit funny, because he is my step son.

Now we tend not to use the word “step” in our house. Branden is now almost 17 and I have been Dad since he was 6. We have a typical father/teen relationship. By this of course I mean he gets repetitive strain injuries from rolling his eyes at me almost hourly.

Moms, all mom’s, deserve so much more credit than they get. But Heart Mom’s deserve an extra flower, an extra hour of sleep, an extra long hug of support and understanding at Valentine’s Day I feel. How my wife, as a single mother dealt with surgeries, work, temperamental toddlers, etc I will likely never understand but I will always, ALWAYS appreciate.

But let’s not forget the Dad’s either. I may have been Dad for a wee bit less time than she’s been Mom, but I also CHOSE to be the father of a Heart Warrior. Whether by choice, or by design – fathers, grandparents, siblings, neighbours and more all contribute to the daily conditions of having a heart kid.

Sometimes, it’s easy to focus on the negatives … oh it is so easy … but there are also so many positives that a family can focus on as well. To help me focus on this I have created a “Pride Journal” for each of my 6 kids.

A few years back I went to the local stationary store, bought uniform books and since have been writing those moments of pride in my kids. My kids aren’t aware of the books … I hope the first “volumes” will be ready to share with them in a year or so and by then there will be about 4 years worth of special moments.

It’s easy during or after surgery to get lost or lose track of those moments of intense pride when things become stressful.  These books help me keep track of those special moments. First goals, good humour after surgery, character development and more – pride in your children can come in many forms.

I have written of Branden’s patience with his sisters, (he is the oldest of six and the only boy), I have written of his jokes when finished a major sugery, I even wrote of Branden’s first roller coaster ride last spring when finally given the opportunity – and although he was terrorized and likely will not ever go near another one – he can cross this off his list. He did it. He was brave, he took it as a personal challenge. Like so many other challenges in life, he climbed that mountain, and firmly planted the flag at the peak to say he did it.

Every Heart Kid has peaks and valleys. As does every relationship within families with Heart Kids as well. This is why it is so very important to recognize those moments of pride, love, and respect.

So with Valentine’s Day upon us, I encourage every Heart Family member out there to show pride. Show pride in their Warrior, show pride in the loved ones who support you. And, I personally, would like to write, however inadequately, that I have pride in all of you as well.

Not even sure I should post what I wrote as his is from the heart and mine more of a business plan, but I guess in some ways it good to write in both thoughts.

Rob 

February the month of love, the month of romance. This is what February means to most people. The excitement of Valentine’s Day, where is he going to bring you for supper, what’s he going to get you? This is what we look forward to as young teens, adults, even when you become a mom and get a night away. It’s the month your child works hard at school on heart crafts, stories about friends and math sheets with little hearts on them. Kids look forward to handing out Valentines cards to their classmates and a party at the end of the day. Maybe they made a gift of love for you. If your  in older grades you look forward to the dances and hanging out with friends. It’s really the month of hearts, pink or red hearts are everywhere.

For heart moms in the last 5 years or more, February isn’t just the month of Valentine’s Day it is also the month of CHD awareness. No other month would be better for such a cause then February.

With more and more babies and children being affected by CHD in part the wonderful world of social media, have allowed us heart parents to share our experiences, our joys and our heartache. We aren’t alone anymore. We have each other, we open our arms and hearts and families to pregnant mom carrying future heart warriors. It’s a wonderful feeling to have someone else to talk to.  Someone who gets your fears. Someone who are already been through the same steps as you have.

Because of the social media such as facebook we have been able to get in touch with heart families around North America. We have seen other people step forward to ask their cities, towns, provinces, states to declare the week of Valentines as CHD awareness week and February 14th as CHD day. The more areas that declare the more media that takes a interest in sharing the more knowledge the rest of the world will have an understand or have a small view in what our amazing heart warriors have gone through, the more knowledge people will have about CHD. Knowledge is a powerful thing. It only takes one person to start and other to follow until we are all over the media and have big function  to support and promote CHD like other illness.  It takes community to raise a child it takes a world to raise a heart child.

Shannon

Heighington-Ridley family

Shannon is a regular blogger for Cardiac Kids, her husband Rob was inspired to write his post in honour of heart month and the amazing sacrifice heart moms make for their families.

The First 24 Hours – Owen Update

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After 6 hours of waiting, we walked in…not sure of what to expect. I mean, I had images in my mind of what he would look like, after all, we had waked into the CCCU 4 times prior post-surgery. But this time, he was no longer a baby. This time he was a 6 year old boy.

The boy that was wheeled into the operating room high on medaz, laughing and giggling was switched with a boy, covered with tubes and wires, seemingly struggling to take every breath. He was, for the moment still, excepts for his gasps. Then he started writhing and ripping at tubes, punching the air and his eyes were filled with panic. We immediately went into CCCU Mode. Every instinct to grab and pick up your child is ignored, you push your emotions to the side, you become a medical advocate for this child in front of you. What medications are being pumped into him? What are his vital signs? What is being done for pain? What is the immediate plan? Is this in-drawing normal? How much O2 is he on? After a few moments, he stopped, almost as suddenly as it started. After a short ten minutes of peace, he once again began writhing. It was indescribably painful to watch. I had to fight off my own panic to help him calm down and settle.

Owen has been through so many procedures in the past that the sedatives are no longer as effective. He is much more alert and aware then the majority of kids who have just had major reconstructive heart surgery.   They could no longer give him sedatives…as he was beginning to have apnea-like spells, signalling that if he received anymore medication, he would stop breathing altogether and have to be intubated. He was breathing through his mouth and his lips were beginning to crack and split. You could see his tongue and mouth were completely dry. Occasionally he would suck a few drops of water from a sponge.

This is how our night began. Every 10-15 minutes he would awake in a panic. At one point in the early morning hours he had kicked off one I.V. resulting in the foot of his bed covered in blood. Every time someone spoke or walked into the room he would bolt into the air. Ripping at the central line in his neck causing it to ooze blood.   We quickly learned, that when he did wake up, our face was the first thing he had to see, otherwise, calming him from his hysteria was much more difficult. I took first shift, I am by nature a night owl and the late shifts were always mine. Brian, is an early bird so these shifts work well. There is never a moment that Owen is without my husband or myself while in the CCCU. By early morning, Owen was so exhausted that his bouts of sleep were stretching from 10 minutes long to 20 minutes. Though, every touch would cause him to jump. Any sudden noise would wake him. We had assumed as many nursing duties as we were legally allowed to do. The lights were dimmed and everyone spoke in barely a whisper. All to make this, the first 24 hours post op, as painless as possible.

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Laura 

Stay tuned next week for Laura’s next post about Owen’s recovery progress.

Step by Step

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When you begin the journey of parenthood you are in it alone, with a baby growing inside you. You may have a partner but the journey of discovery is really something that you can only share with them. You carry him and feel him kicking in ways that your partner can’t feel or understand.

In the hours after Josh was born, I lay in the OR recovery room touching my empty womb and wondering if he was still alive. He wasn’t even in the same hospital with me anymore, he had already been taken to Sick Kids across the street. From there it was what can only be described as a journey, a beautiful, scary, deadly journey. Every single appointment, every single needle, surgery, procedure, MRI, ER visit, clinic visit, question, every single tear, it was on me to help make it better. I have a husband, a good husband and father but it was me who took over the medical care of Josh (and I did it because I wouldn’t have it any other way).

Last year I was asked to walk in the walk for life event that the Cardiac Health Foundation of Canada runs every year. I joined a team but I didn’t really know anyone so I found myself on the start line alone, and I walked, alone. However, as I walked I found myself on a journey of remembering, of healing. I had promised my donors that if I reached a certain goal I would do 10km instead of the 5 I had been meant to do; and the first few kilometers were fairly easy going, I walked and thought back, sometimes the memories were hard and sometimes they made me smile. The further I got the more tired I was but I couldn’t stop, step after step I continued down the path and I realized that it was similar to our lives. We get tired, but we can’t stop, we have someone counting on us in ways that they count on no one else. As I got to the 8km mark I began to pick up speed and in honor of Joshua’s strength I ran the last 2 km. Running isn’t my thing, I hate it for many reasons, but I ran because I was now on a journey too, one of healing. When I crossed the finish line I had tears in my eyes, sweat everywhere, and so much joy inside at both finishing the race I had set for myself but also knowing that I was doing this alone, for Josh. As the parent of a child with a congenital heart defect it can sometimes feel like we are alone, sometimes we feel like there is no one that understands what we are going through. Last year I was on a team of survivors, they were awesome, but they have different stories, different journeys.  This year, I am so excited that we will walk with the Cardiac Kids, we will stand tall together, step by step on a journey not one of us wanted but we are here anyway. This year, I won’t be walking alone, I will walking beside people who fully understand life with CHD from a parents perspective and I have to tell you that I am so excited, to meet all of you and to raise money and awareness with you. I will see you in May with your walking shoes on!

Laurie

Interested in joining Team Cardiac Kids in this year’s Walk of Life? Click here to join our team.

Getting to Say Thanks

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On July 14, 2011 at 7:30am, 2 men became our family’s heroes. From that moment on it seemed incredible to me that we had barely spoken to them, didn’t know their names and never had the chance to say thank you. How was it possible that there were people just out there that had played such a huge role in our lives and we knew nothing about them. This had been on my mind for quite some time and after going back and forth I reached out to Toronto Paramedic Services and asked if we could arrange to meet these men. I wasn’t sure what to expect; you see stories like this in the media and I always wondered how the paramedics really felt about these meetings. For someone who is not a paramedic, I had always imagined that the most difficult part of their job was the fact that they have to walk away without knowing the outcome of the call. Did meeting people just feel like another obligation of the job or does it actually help to bring some closure? The commander who responded to my request answered that question right away – both of the paramedics who worked on Lily remembered her call vividly and were excited at the chance to meet again.

To say that we were nervous would be a complete understatement. What do you say to the people who actually saved your child’s life, who literally kept her heart beating? We’ve had doctor’s do that, who have held Lily’s heart in their hands and we’ve been able to thank them, but this just felt different. Perhaps because there was no plan, no preparation on their part; they didn’t have scans or echo’s to look at, they just had the information that was coming up on their screen and with that little information, they created a miracle and saved us from a life of grieving. I didn’t know how we were going to get through saying hello without turning into a blubbering mess, let alone actually get out the words that I wanted them to hear.

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It was incredible to sit in a room with them, to have them see Lily with their own eyes, to her the story of that day from their point of view. They were able to give us information that we never could have known without them. They told us that, contradictory to what we had always thought, they were both in the back of the ambulance working on Lily and they actually thrown the keys to a police officer and had him drive. They were incredibly careful not to communicate with words so that my wife, who was in the front, would not panic because they were also scared that it wasn’t going to end well. We found out that one of them had made a special trip to Sick Kids after their shift ended that day to come and check up on her (under the guise of picking up a piece of equipment). We sat in silence, and tears, and listened to the 911 call and I have never been more proud of my wife. I can hear the fear in her voice, hear how terrified she was but she didn’t allow that fear to win – the recording could be used as an example of the perfect 911 call. She was so calm, communicating all of the information so quickly and clearly and she was one step ahead the entire time: she had already put our dog in the crate and opened our front door before the dispatch operator could suggest it. While I had known that arrangements had been made to give us a recording of the call, I didn’t know that we were going to listen to it that day and I started to panic when they queued it up: could listening to that call do anything good or would it just bring all of the painful memories screaming back? But something happened as we listened, listened and watched Lily sitting on the laps of the men who saved her: it felt like healing. Towards the end of the tape, you can hear the sirens wailing as the paramedics pulled up to our front door and even from where I was sitting I could feel the relief again, knowing that help was so very close.

It was hard to be eloquent though. I had so many things that I wanted to say to them but struggled to put those thoughts into words. How do you say thank you? How can you possibly put into words what their actions meant to our lives? I stayed awake quite late the night before we met thinking about what to say, because I knew that I had to be ready; that if I left it to chance I would miss something important and regret what I didn’t say. In the end, I realized that the only way I could ensure that was to write it down and I’m so grateful that I did, because while I got through saying hello, when I did try and say thank you, I was left in tears and I became the blubbering mess that I had been trying to avoid. So while I won’t share the entire letter with you, I will share this:

“To even think of a world without Lily breaks my heart and we came so close to that being our reality. You not only saved her life that day, but you saved ours as well – you saved our entire world. So, thank you. Thank you for coming into our lives on the very darkest day and giving us back the sunshine. Thank you for giving Lily back to us. Without you we would be nothing and so thank you for giving us everything.”

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Crystal

Crystal is a regular blogger for Cardiac Kids. Click here to learn more about her and to read Lily’s story.

Stay tuned next week for a post from Laurie.

**Photos used with the permission of Toronto Paramedic Services**

Brace for Impact

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The parents of kids with complex congenital heart defects will know all too well the following post. I am very aware that I am not alone. I am not the first parent to experience it, nor will I be the last. That does not give me any comfort. Doesn’t make me feel any less alone, any less unprepared, any less scared out of my skull.

Owen’s defect requires staged surgical interventions for survival. The first is done at birth, the second around the 6 month of age mark and the last at 2-3 years of age. This past June, Owen turned 6…he has yet to have the last stage. His heart was never strong enough to endure the final stage. Truth be told, his doctors never believed it would be strong enough. His function was so poor that we were all waiting for the decision to “list” him for transplant. Then, after a little perseverance and some awesome heart function medications, Owen’s heart function is ‘adequate’. This means he has been approved for surgery. Insert P-A-N-I-C.

These past few years of waiting and hoping for this heart function to improve has been gut wrenching. We had come to accept transplant as Owen’s future. But since birth, we have been told everyone is better off keeping what they were born with for as long as you can. Most people do not realize the complexity of transplant. The ramifications and the side effects, the difficulty of finding a heart that is the correct size, right type, and the precise concoction of antibodies.

But, then, with guarded confidence, it was decided he would have the final stage…the Fontan. My hand shake as I type this. He is 6…he does not remember his last surgery. I have memories of when I was 6. Owen’s sister is 11 and brother is 9. I do not need to tell you that chaos of emotions, worries, questions that swarm in my brain each and every moment. Our intention was to tell the kids after the holidays….let them enjoy time with family and friends without the cloud of angst his father and I feel. Our eldest found out by accident. The look on her face spoke volumes, “But I thought he was done?” The truth is, Owen will never be ‘done’. There will always be the next thing…

We are on uncharted territory. I have done all I know how to do to prepare to explain to Owen and his siblings. I have read books, articles, sought resources and support…..but nothing that will promise them everything will be ok. Nothing anyone can say or do will promise Owen that he will not feel pain, that he will be able to run outside, or go to another Monster truck show. No one can promise Emma and Gavin that their brother will come home unscathed…or that he will come home at all.

This is our reality. We do not know anything different. But as a family, we have learned to pull together and power through. We have done our best to prepare the kids the best way we know how. We know that things will get worse before they will get better. We are walking straight into the the thick of the battle with every weapon we have. We are braced for impact.

Laura

Laura is a regular blogger for Cardiac Kids. Check back regularly for updates about Owen’s surgery.

How to Be a Friend to a Heart Mom

So you have a friend whose child was born with a serious, life-threatening heart condition. They’ve lived the past few years in and out of the hospital, they’re constantly busy with appointments, procedures and tests for their child, and you can tell that they are often run-down and stressed out. Do you find yourself thinking about them often, wondering how they’re doing but not knowing what you can say or do to help them? I have some pretty incredible friends in my life who have been with me through a lot of ups and downs in the past six years. Here are some examples of the things they have done for me in the past (and continue to do) that mean a lot to me – things which you can do for your friends who are raising a cardiac kid.   Keep in mind that many of these could also apply to friends who are dealing with other medically fragile family members – like their parents, sibling or child – so if you have friends in that situation these tips would be helpful too.

  • Be there. Listen to her when she expresses her joy about milestones reached, steps taken, teeth lost, or report cards issued. It’s likely that she treasures the little things in her child’s life because she might not have expected them to ever happen. If she’s venting about something, don’t feel you always have to find something brilliant to say; sometimes you just need to listen and let her express it. You may not always understand what she’s feeling, but she just needs you to lend her an open ear. Don’t forget to give her a warm hug if you think she may need it.
  • Stay in touch. Call her, text her, email her, or come for a visit – not every single day, but enough to let her know you care. She needs to feel supported and loved and needs her friends to stay in her life. Don’t ‘not call’ her because you feel she’s probably too busy to chat. Reach out and call her – and if voicemail picks up, leave a message letting her know that you’re thinking of her.
  • It’s ok to ask questions. When you don’t understand what she means by certain tests or procedures or medical jargon, just ask her. She wants her friends to understand what is going on in her child’s life and what he’s going through, so that you will know how to pray for her and her child. Don’t hesitate to ask her other questions like, “What do you need?” “What can I do to help?” And, “How can I pray for you and your child?”
  • Offer help. If you know she’s had a busy week filled with appointments and therapies for her child, offer to make her family dinner, do some light housekeeping, or offer to babysit her other children. Offer to drive her to her appointment if you know that the drive to the city is stressing her out. Sometimes that one appointment can take all day long and suck the energy right out of her, so having someone offer to drive could be a huge stress-relief for her.  If you think she might be run-down with the day-to-day caring of her child, offer help.   Ask her to teach you how to operate the feeding pump, administer medications, or monitor oxygen levels so that down the road maybe you could watch her child for an hour or so, while she gets out and enjoys time to herself or time with her husband and other children.
  • Offer support and encouragement when she expresses her feelings or anxious thoughts (and definitely don’t criticize them.) When she talks about fears of her child getting sick or dying, or when she worries because he’s been sleeping a really long time, don’t tell her that she worries way too much.  She is raising a child with a life-threatening condition – there is going to be some anxiety that comes with that. Her fears are very real and shouldn’t need to be validated and they are likely there for a reason. It may be because of what her child’s surgeon frankly told her when she asked about the long-term prognosis of her child, or because her child has all kinds of other health concerns that stem from the heart condition and/or surgeries – vision problems, after-effects of a stroke, side effects from medications, or learning disabilities. It could also be that she’s thinking of the families who are no longer holding their child in their arms this Christmas but are mourning for their child who fought so hard. Whether it’s post-traumatic stress or anxiety about the future, try to understand that her anxious feelings are not going to disappear overnight, if they ever do at all.   The harsh reality of CHD is that the farther away her child is from his last surgery, the closer he is to his next one.
  • Don’t give up on her in her darkest hour. She may go through difficult times when she closes herself off from you and her other friends, hiding from the world and declining invitations to go out. Don’t give up on her. It may be tough to always be the one pulling her out of her shell, but she needs you. Other people might think it’s not worth all the hassle, but real friends don’t give up on her. So remember that she needs you to not give up.
  • Invite her and/or her child to your party. When you’re hosting a social event at your house, don’t ‘not’ invite her because you think she won’t be able to come anyway. When you host a birthday party or other fun social gathering for your kids, don’t ‘not’ invite her child, thinking he probably won’t come anyway because he could get sick. It’s more hurtful for them ‘not’ to be invited, than it is to be invited and have to gracefully decline. Leave that decision up to them. They’ve been making tough decisions for their child his whole life; they can handle turning down an invitation if they need to. Invite them anyway; it’s the thought that counts.
  • Don’t send your sick child over to their house. EVER. If you’ve ever seen a child with a breathing tube, fighting for his life in Intensive Care then this needs no further explanation. Families with a heart child have likely spent weeks or even months at a time in the hospital, and they like to stay home as much as possible where they can be together with their family. When you are healthy enough to visit their home with your children, hand-washing is very important too. The virus you could be carrying on your hands and bringing into her house can be disastrous for her sick child.
  • Stop calling her a Superhero, or Superwoman, or SuperMom. While she might timidly smile when you say this, inside she is absolutely cringing because she knows it’s not she who’s the superhero, it’s her child. He’s the one who has dealt with all the poking and prodding and endless medical professionals in his face yet still finding reason to smile and be joyful when he wakes up each morning. Saying things like “I don’t know how you do it,” might seem like a nice compliment about her super powers, but saying this actually makes her realize her failings and remember how tough it really is sometimes. She doesn’t want to be reminded of how tough it is. If you insist on saying this to her, follow it up with a “How can I help make things easier for you?”
  • Be sensitive and think about what you say before you say it. It can be very difficult when she’s spending the holidays in the hospital with her sick child and all you want to talk about is the awesome time you just had in Florida over Christmas. It’s hard for her to admit that while she and her family are split apart over the holidays and she and her child are seeing the same four walls of the hospital room day in and day out, the rest of the world keeps spinning and her friends are out having awesome family time.  I’m sure she’d love to hear all about your trip once they’re home and settled again. Also, try not to say things like, “It really doesn’t look like there’s anything ‘wrong’ with him!” While this may be true and you might intend it as a compliment, we know that things can change in an instant. He may look really good today but tomorrow be lying in a hospital bed. Just because you can’t see anything ‘wrong’ with him it doesn’t mean his life is easy. Instead, you could say something like, “Wow, he looks great!”

I really wanted to keep my list simple and include only ten things. But #11 and #12 are really important too!

  • Try really hard to remember important dates. If her child has an upcoming test like an ECHO, MRI, cardiac cath or surgery, try to remember those dates (particularly the ones involving intubation and general anesthetic – those ones are the most stressful.) There might be a lot of them to remember, but you could write them on your calendar so you don’t forget. On the night before or the morning of the big day, send her a quick text saying that you’re thinking of them and hoping all goes well.  Remembering the important dates and letting her know you’re thinking of them will mean a lot.
  • Be an organ donor. Wait, what? What does being an organ donor have to do with being a good friend? EVERYTHING. It means you’re listening to her when she talks about the importance of organ donation and the fact that her child will one day be a recipient. It means you hear her. You get it. So as soon as you’re done reading this list and before you exit this page, click on beadonor.ca and register you and your family members for organ donation.   Your choice could one day save the life of 8 people and enhance the life of 75 others.

Melissa

Melissa is a regular blogger for Cardiac Kids, to learn more about her click here.

Stay tuned this week for a post from Caitlin

Lets Talk

Organ donation is often a hard conversation to have. An open discussion is difficult since the topic is about death but remind yourself it is also about life. When the unthinkable happens we do not have time to think about donating organs since we are dealing with grief and a variety of emotions. We all need to open the discussion and I hope I can show you why.

Did you know that organ donation can save 8 lives and further saves up to 80 lives now with tissues, valves and other vital organs in the human body. I have seen and continue to see people and children whose lives have been saved by this wonderful gift. I currently personally know ten children in our province who have had transplants and are doing amazing things with their lives. My daughter had also been a recipient of donor tissues and she continues to thrive. We are very thankful that she is no longer in immediate need of a donor heart but we however know that this will be necessary in the future.

Each year thousands of Ontarians get a second chance to live life to its fullest, thanks to the kindness of people who have given the ultimate gift but sadly everyday on average 18 people die waiting for that second chance. Some people still believe that you can be too old to donate but this is not the case. There is no age-related reason not to donate. We as compassionate human beings can plan to give a gift of life and we can start by opening a discussion with our family and friends. This is also very important since in Ontario even if you have registered at beadonor.ca your family can decide not to donate your organs. Canada continues to have one of the lowest donation rates so let’s change this! Let’s talk so we all know and then we can respect each others wishes. I am now going to include one of my favourite stories written by the late Robert Noel Test.   Read this to your loved ones to open up this discussion – it is so very important – Let’s Talk and remember loss can equal hope.

To Remember Me  
Robert Noel Test (1926-1994)

To Remember Me

At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my “deathbed.” Call it my “bed of life,” and let my body be taken from it to help others lead fuller lives.

Give my sight to a man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.

Give my heart to a person whose own heart has caused nothing but endless days of pain.

Give my blood to the teenager who has been pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.

Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Explore every corner of my brain. Take my cells, if necessary, and let them grow so that someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her windows.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses and all my prejudice against my fellow man.

Give my sins to the devil. Give my soul to God. If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you. If you do all I have asked, I will live forever.

Jean 

Jean is a regular blogger for Cardiac Kids, for more information about her or to read her daughter’s story click here 

 

Winter Struggles

With the winter coming faster in some areas then others, I thought this was the perfect time to talk about the struggles some heart kids face in the winter months.

Branden from the age 5 and up seemed to always struggle to keep warm in the winter. You would often see his hands/face red or blue and his toes too. It didn’t matter if I spent the $100 or $400 on the best or warmest jacket the companies declared, he just never could keep warm. I know $100 doesn’t seem like a lot today, but it was 15/16 years ago. But it got to the point where he wasn’t allowed out at recess during school day and long fun trips to the local hill turned to short trips for tobogganing.

When Branden was a baby and living in North Bay and relying on the bus system and walking to and from daycare Branden was fine in a good winter jacket and snow pants, bundled up with a blanket. It wasn’t until we moved south and he started to go to school did I see the big change. In February 2004, Branden started turning red fast and sometimes blue. No longer did the warmest jacket work. He couldn’t control his body temp. His arms turned to what I call “marble cheese”. I went with my gut and called sick kids. Off he went for a unscheduled echo. They discovered one of his two leaflets clasped. For the next 10 years it was a up and down battle to keep him warm.

Branden started off by staying in at recess on really cold days. (School should accommodate your child’s special needs). For the first few years he was sent to the office with actives that I provided. He was allowed to bring a friend to play the games. For the most part it seemed to always be a girl, I guess they had a soft spot for him. This worked for a bit but the battle to keep him warm continued.

It seems the unscheduled echos in Feb/March became almost like tradition. For 10 years every Feb/March I would called his Cardio Doctor and say Branden isn’t looking right. Most of the time he was fine- twice he wasn’t. BUT nothing would keep him warm during those cold winter months. I spent hundreds of dollars on new snowsuits the best of the year the warmest jacket ever. I would buy thermal underwear and shirts, the thickest socks. Nothing kept him warm. It was crazy. So no longer was he able to go out on the nicer winter days at recess. He started joining some clubs the schools ran and some, like Lego club was a big hit for him. Branden’s only time spent outside was walking to and from school. It got to the point where I felt like the weather police and kept him hostage in the house. Which was sad as he had younger siblings who had no issues playing outside. (I would let him out for a 20 mins at a time, but I guess this was the year Branden realized he wasn’t a regular child). But all through school from Jk-grade 8 Branden wasn’t going out during the cold days he lost and never had the chance to learn social aspects of play outdoors with other kids..

So how do we keep our heart babies, toddlers, children, teens and almost adults warm?

It gets harder to do, with the new suggestion from private organizations that have done some research on this on what is safe and unsafe in regards to car seats.

If you can’t put snow suits in the harness car seats, you can’t use those nice warm JJ coles bags any longer to bundle up your baby it gets harder to keep those little ones warm. I know with baby number 5 all these suggest came into place, we have seen them pop up on our local news feeds on facebook, in the papers and maybe even on yahoo. I worried about how to keep this youngest one warm and she isn’t even a heart baby. I researched a lot to find an infant car seat that sold a warm bag, that you were allowed to keep in the seat. I bought the plastic cover to go overtop the car seat ( best invention ever) and put a warm blanket on top of the seat while going from house to car. I also bought a fleece suit; it was thin and safe to go in the seat. She was warm all winter.
It gets harder when they are out of the infant seat. If you can’t put kids in seats with snow suits how do you keep them warm. There are a few suggested jackets that would be safe according to all of the research I have done. Primaloft is one I have found in my research if you lucky and get a code you can sometimes get it for 50% off at Gap. These are some of the struggles a mom’s of of little ones face, But would that car seat approved jacket, keep a heart toddler warm outside building a snowman? ( we all know we are building Oalf’s this year). I wish there was a magical answer to this question. I wish the Doctors would give us a manual of what to buy them to keep the safe and warm.

But I guess there isn’t. Each heart child is different, some can handle the weather changes and others like Branden can’t. I think it depends on which stage they are in during their heart journeys. I can say what worked for my heart child in the last 16. It really is trial and error and learning from experience. I wish heart parents would share more often what has worked for their kids so parents wouldn’t have to struggle so much.

Things that have worked for Branden:

I have bought many brands over the years nothing kept him warm or if it did it was for a short time frame. I started researching jackets and brands of what people used when climbing snowy mountains or people who camped in the winter. I checked out MEC which is a supply store I heard many people talking about. I talked to people who work outdoors all day long in all weather conditions. Through out my research one of the Jackets I have found was the down filled North Face jacket. I went to a store near by that sold them. I got one 50% off. I tend to buy in Jan/Feb where they are trying to get rid of winter stock. I gave it a try, when Branden started fooling around on the coldest days instead of doing his papers I knew for once I found a jacket that kept him warm. I can’t even say Branden was in great health as we knew our days were number to the next surgery. But he was out for a few hours and wasn’t cold. I felt like I found gold. He needed a good warm jacket and snow pants, good Sorel boots, thick socks, layer clothing and a hat. Finally at 14 he was able to join the cold winter weather.

These suggestion might not work for your child but they might also. Lets start talking more about what we do to keep our kids warm and safe this cold winter.

Here is a blog of other suggestion
http://carseatblog.com/24645/baby-its-cold-outside-winter-coat-suggestions-for-kids-in-carseats/

http://www.thestar.com/life/2013/01/21/for_children_in_car_seats_snowsuits_bunting_can_pose_a_safety_risk.html )

Shannon

Shannon is a regular blogger for Cardiac Kids. To read more about her and her son Branden click here

What’s Next?

As parents who love our kids it is our job to ensure that they have the best possible care. We give them the medications, we take them to every appointment, we hold their hand for every blood draw, we sign consent for every surgery, we shed tears with them when it hurts, we hug them when they are scared, we seek therapy for them when they need added help. In every way we seek to make their lives as great as possible, we strive to give them as normal a childhood as possible; sometimes we succeed and sometimes as hard as we try to we have to admit defeat.

I am generally a fairly hopeful person, it wasn’t until Joshua’s third surgery that it really struck me. There is no cure for what ails my son. It doesn’t matter what I do, I will never be able to fix his heart. It was a bitter pill to swallow, one that still has a bitter after taste years later. As I wrestled with the idea of Josh always having a heart defect I also began to research what his future will look like. I wanted to be as educated as possible, what I learned was disturbing but not hopeless.

In the 1950’s and 60’s a child born with a congenital heart defect had a twenty percent chance of surviving to adulthood. Fortunately, today, ninety to ninety-five percent of children born with a CHD survive. The growing number of survivors is leaving us with a beautiful yet unique problem.  Where we have never before needed an adult care system, we now have a desperate and constantly growing need for specialized cardiologists in the field of Congenital Heart Defects.

When Joshua turns 18 he will leave the safety of his paediatric hospital and enter an unknown adult world of medicine that is not ready for him. He will leave Sick Kids and be met with new doctors who may not be specialists in the world of congenital heart defects. As a parent I have learned a great deal about the medical system from pre-natal, through to pediatrics and now realize what the adult care system is currently facing in terms of larger numbers of survivors, a lack of specialized doctors and health care providers.

But what would happen if there were a place where adult CHD patients could all be treated with equal care, equal value–just one all encompassing system such as they already receive as kids? What would happen if we had a place for all CHD patients—baby, child or adult? What would happen if we went to one place for prenatal care, paediatric care and then adult care? What if Josh, who has always been followed by one specialized cardiologist, whose surgeries were always done by the same surgeon, was followed throughout his life by the same institute, the same care providers?

I see all the problems that face Josh and survivors like him, I see the lack of specialists in this field, I see the lack of education for the patients leaving paediatrics, I see the cracks in the system that are just waiting for kids like Joshua to fall through and I see a deep need for change. As parents it is our job to take care of our kids, to help them in any way that we can; I cannot cure my son, I can’t fix his broken heart, but I can do everything in my power to see that his future is as secure as possible. I can make sure I tell everyone who will listen about this silent killer who stalks our kids. I can do whatever is necessary to see a place like this dream institute can become a reality.

This is not so farfetched a dream. It only needs an action plan. It needs people like you, people with a voice, people who care about the future of our children, people with the power and will to make things happen, to ensure change.

Laurie

Laurie is a regular blogger for Cardiac Kids. To read more about her an her son Josh click here 

Be sure to check back next week for a post from Crystal