Melissa

Balm for my Heart Mama Soul

I think I can speak for all parents of cardiac kids when I say that our life is filled with a significant amount of anxiety and worry. We all deal with it in different ways and some are better at building their walls than others, but the anxiety is always there.

Doctors told us right from the start of Tyson’s life that there were absolutely no guarantees for his life. His surgeon told us quite frankly that he might do really well after his surgeries and live a relatively good life, but there will always be the possibility that one day we could walk into his bedroom in the morning and find him gone. After three open heart surgeries, five heart cath procedures, and more cardiac tests and procedures than you can shake a stick at, no one can promise me that he will live a long, healthy life. No one can say for sure what his long-term prognosis is. CHDs are a lot like a tornado. You can use satellite to track its course and warn others of impending doom, but ultimately the tornado moves in an erratic path with no rhyme nor reason. It can completely destroy one house while leaving the house next door unscathed. In the same way, one child who the doctors think don’t stand a chance of making it through another surgery can end up kicking CHD in the butt and live a long, prosperous life. The other whom they think is fairly strong from a cardiac perspective drops down dead on the floor one day because her heart just suddenly gives up. It’s true that in life there are no guarantees, but for the lives of thousands of cardiac kids this holds true even more so.

Some days I worry more than others. For Tyson’s whole life, we’ve critiqued and analyzed every little sniffle, every cough, every time he vomits, every day that he appears to have less energy than normal, every time he sleeps more than normal, or says he has a sore chest, or a sore head, or that he feels dizzy, or that his legs hurt. All these things might be normal things that most kids complain about from time to time. But for Tyson, any of these things can be signs and symptoms of congestive heart failure or stroke, brain hemorrhage or blood clot. Being on blood thinners puts him at risk for stroke or bleeding in the brain so we have to closely monitor his INR levels, making sure they are not too low and not too high. Having an AED in the house is not exactly what you’d consider normal, is it? Sending him off to school every day with the chance that the simplest cough could develop into pneumonia and admit him to the hospital – that is worrisome. Having only 18% blood flow going to his left lung, his oxygen levels are low, making him at risk of being hospitalized with what a healthy child would experience as a common cold. And the CVS team at Sick Kids has determined that they’ve done all they can do for his heart and the next step once his heart starts to decline is ‘heart and lung transplant.’

I definitely don’t worry about where Tyson will go when he dies. I have complete confidence in my God and Father, that His promises are true for Tyson and that he’ll have a brand new heart in heaven. That he’ll walk with Jesus with oxygen saturations of 100% and he’ll never need to take another pill or have his sternum sawed open, or get poked with another needle or endure another IV ever again. I definitely know where his home is! But what I worry about most is while Tyson’s heart is made whole, we who are left behind will be left with a huge hole in ours. I worry about the hearts of his older brothers and his sisters, his parents, the hearts of his aunts and uncles, cousins and friends.    Would we be able to carry on without him? Would I be able to guide my family through a lifetime of grief and mourning without our Mr. T? I have no control over God’s plan for Tyson’s life. No control over whether or not someday my children may have to mourn the loss of their dear brother and playmate.   There’s no bandaid I can put on Tyson’s heart to heal it, no medicine he can take to prevent his death, no magic potion to guarantee he won’t ever be hospitalized again.

So for now, we love him. We snuggle him close and hold him tight, kiss him often and enjoy every single second we’ve been given. Laugh often and hold on to as many memories as we can.

I can’t count the number of times other Heart Moms or Dads have asked me how we came to the decision to have another child after all we’d been through with Tyson. “Weren’t you worried you’d have another child with a heart condition?” “Weren’t you scared how you were going to juggle your heart child at the same time as having another baby?”   “How did you decide?”

To be honest, we didn’t ‘decide.’ In reality, the very thought of bringing another baby into the crazy hospital-life we lived terrified me! You can imagine my surprise and fear when I found out we were expecting again when Tyson was not even three years old. Sure, he had completed his three ‘scheduled’ surgeries but his challenges were far from over! He was still hospitalized once or twice a year, and even when he wasn’t in the hospital, he was often sick at home with pneumonia or fighting some kind of virus he had caught; and during the times that he was well we were often hopping from one specialist appointment to the next.  Not only that but we were also raising three children older than Tyson, each with their own unique needs and challenges, each needing our love and attention too. How in the world could we give time and attention to another baby at this time in our life?

I’m so thankful that we have an awesome and loving God that knows our needs before we even ask. As much as she may have been ‘unplanned’ in my mind, God knew that our little Addisyn Faith would be balm for this Heart Mama’s soul. She is exactly what this family needed.

I know these blogs posts are typically supposed to be about our heart warriors. But the next part of my post is going to focus on our heart-healthy daughter Addisyn. I write these words to encourage other families with cardiac children that you CAN move on after having a child with a heart condition! You CAN have healthy children after having a child with CHD! Our son’s cardiologist told us that because we already have a child with CHD our chances of having another CHD child would double – but then he quickly added that the chance of anyone having a child with CHD is about 1-2% so that means the risk of having another child with CHD is 2-4%. Recurrence risks vary considerably depending on the type of CHD, so he said the likelihood of us having another child with a right or left ventricular anomaly was highly unlikely. If you have a child with a CHD, the risk of having another child with a CHD is higher than that of someone without an affected child, but it is still quite low. You may in all likelihood have a child with a completely normal heart.

Was it a stressful pregnancy? Of course! There were minor complications that resulted in several added appointments (as if we didn’t have enough appointments already!) because of an antibody issue in my blood. I was referred to an OB at Mt Sinai in Toronto and had several level two anatomy ultrasounds there to ensure that the anti-C was not attacking our baby’s red blood cells. We also had a fetal echo at Sick Kids so that we could be prepared in the event that we were given another baby with CHD. Thankfully the fetal echo revealed that our baby girl had a healthy, four-chamber heart.   On top of my regular ultrasounds at Mt Sinai, I also had to have bi-weekly bloodwork to monitor the anti-C titre levels. It actually worked out really well because Tyson also needed bi-weekly bloodwork to monitor his INR levels at the same time. Being only two and a half years old, he was not always able to understand why he needed to be poked all the time so it was super helpful that we could do our bloodwork together – and be brave together. The extra appointments added extra stress and anxiety to our lives resulting in several trips to Toronto every month for the duration of my pregnancy.

Sometimes I worried how it was all going to work out, knowing there was a chance Tyson could need a heart and lung transplant if his heart deteriorated any more, and knowing that he could be hospitalized with pneumonia again at any given time. Sometimes I wondered what God was doing in my life; how could we possibly bring another child into the world with all that our family already had on our plates? I admit, I was exhausted with all the appointments that we had for Tyson and for our unborn baby, and the anxiety level in our house was at an all-time high. Our oldest son, who had taken on so much responsibility being the oldest sibling of a CHD warrior, had also endured so much emotionally that year and he struggled with depression and anxiety that winter too. It’s not something I talk about with a lot of people because I feel 100% responsible for the anxiety that he felt. If only I had handled things better at home, perhaps the anxiety wouldn’t have rubbed off on him.

But let me tell you that the birth of our little Addisyn Faith was so very therapeutic for all of us. In the end she was born healthy and well. A cute little six pound twelve ounce bundle of joy, appropriately named because she certainly did “Add to our Faith.’ We had to throw all caution to the wind and just have faith that God knew what He was doing. And He certainly did know what was best for us – of course, how could I doubt? Addisyn turned out to be the BEST thing that could have happened to our family. She was a very happy baby right from the start, sleeping well though the night and very happy during the day. Tyson was hospitalized with pneumonia again when Addisyn was only four months old, but Tyson was able to stay at our local hospital so it was much easier for Brian and I to take shifts at the hospital. And my Mom was able to take some night shifts too so that Addisyn and I could sleep in our own beds. So it all worked out, as it always does.

At times I feel I was robbed of the joys of Tyson’s infancy because we spent so much time doing things that most new Moms don’t ever think about doing: weighing diapers, measuring fluid intake, learning Ng feeds, Enoxaparin injections, cleaning up the aftermath of reflux problems, weekly trips to Sick Kids, stressing over med times. But giving birth to Addisyn healed me from the trauma of Tyson’s first few years of life and restored some normalcy back to our lives. I took her home, nursed her when she wanted to be nursed and let her sleep when she wanted to sleep. Never once did I weigh her before or after a feed, or poke her tiny legs with a needle, or have to wake her up from her nap because it was time for her medication. I was allowed to snuggle her like a newborn baby needs to be snuggled and she spent many hours curled up at my breast bonding with me exactly where a new baby belongs. She allowed me to put closure to my child-bearing years with good memories instead of traumatic ones.

Today she fills our lives with joy and laughter and keeps me busy at home when Tyson and his siblings are at school all day. Because she and Tyson are four school years apart, she will continue to bless my stay-at-home days for a little while longer yet. I often ask myself what I possibly would have done with my life once Tyson hit school full-time and I had no one else to focus on. What would I possibly have done with all my spare time? Now I spend my days laughing at all Addisyn’s idioms like, “Mom, can you please put tiggy-pails in my hair today?” And the way she can finish the sentences in her favorite books before I even have the words on my tongue. She is so full of spunk and life that I simply can’t imagine my life without her. Even though she wasn’t necessarily ‘planned’ by us, God had a plan in mind for her and for us, and He knew how therapeutic she would be for us.

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I want to encourage you, heart Moms and Dads that you can heal after the trauma of having a cardiac baby. You can move on and have another healthy, happy baby. I’m not saying that having another baby will cure your anxiety, but it will absolutely help to dull the upsetting memories that fill your head; the memories that have robbed you from the joys of a healthy baby. In this life of tornadoes, Addisyn Faith was the shelter that I needed to take my mind of the raging tornado for a little while and enjoy the sunshine again.  Will I still feel anxiety from time to time? Of course. I’m pretty sure the anxiety will always be there. But Addisyn Faith was balm for this Heart Mama’s soul.

Melissa 

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 

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

Being a Heart Family

In November 2008 when our son Tyson was born, our world changed forever and we became a ‘Heart Family.’ I’d already had seven years’ experience being a ‘Mom,’ but being a ‘Heart Mom’ is different. It’s not better, it’s not worse; it’s not inferior or superior; it’s just different.

What does it mean to be a Heart Mom? Being a Heart Mom means never looking too far ahead in the future, but trying to live each day in thankfulness and praying you get to enjoy many more. It means taking things one day at a time – some days one hour at a time, and some hours one minute at a time. It means preparing for the worst, and hoping for the best.

Being Heart Parents means we had to brush up on our knowledge of the heart anatomy and how it works, because in three short days our newborn son was having his first of three palliative open-heart surgeries. We had three days to try and understand what the cardiologists meant when they told us ‘your son has very serious, complex congenital heart defects.’ We had to try to understand the complexity of his heart and what the surgeon planned to do to help, and still afterwards mentally prepare ourselves to lay our newborn son on the operating table so that the surgeon can stop his heart, open his sternum, and re-knit his tiny, strawberry-sized heart. Being Heart Parents means nervously waiting hours in the surgical waiting room, hoping and praying that the surgeon’s hands are steady, praying that the heart and lung machine will keep our son alive during the procedure so that he will be given back to us again when it’s over. It means spending hours by his bedside, watching him fight for his life on life-support, with so many tubes and wires you can’t even count them, with monitors and machines beeping constantly.

Being Heart Parents means learning and developing a new kind of ‘normal’ when we finally get to go home from the hospital. It means learning and administering several different medications, trying to make meds with rigid schedules fit into a baby’s unpredictable one. It means doing things that seem so unnatural like having to wake your baby in the middle of a nap because he’s slept too long and we’re already an hour late with his heart medication, or trying desperately to keep him awake for just half an hour more so he can have his meds before he drifts off to sleep. It means weighing him every morning to make sure he’s not losing weight, feeding him low-fat formula when all you want to do is nurse him again, and having home care nurses come to your home to help monitor him for heart failure. It means squeezing his lumpy thighs morning and night, trying to find a new spot that isn’t already bruised and batted up from his anticoagulant injections. It means low-fat feeds, feeding pumps, NG tubes and reflux. It means needles, X-rays, ECHOs, ECGS, antibiotics and IVs. Blood thinners, sedation, MRIs, heart caths, stickers and bravery beads. It means that hospital visits aren’t actually that scary at all, because in a sad sort of way, the hospital kinda feels like home. Being a Heart Mom means learning the hard way that a two-hour car ride from our local hospital to Sick Kids in Toronto takes a mere sixteen minutes via helicopter. It means joining online support groups, living in ‘heart world,’ and having some really good friends on the computer whom we’ve never actually met in person.

Being a Heart Mom means sometimes being consumed with worry and fear. If our cardiac kid sleeps too long or he doesn’t answer immediately when we call his name, we worry about cardiac arrest or stroke. If he drinks too many fluids, it could put undue stress on his heart; yet if he doesn’t drink enough, he could dehydrate and be at risk for a stroke. Being a Heart Mom means monitoring daily fluid intake, and always watching and monitoring sleep patterns, behaviour, colour, and activity levels; checking respiratory rate, heart rate, and oxygen levels.  It means analyzing every little cough or sneeze. Does his cough sound wetter today than yesterday? Is he coughing because he has a cold or is this the start of heart failure? Is he looking bluer today? Does he look puffy? When was the last time he went pee – is he retaining fluids? Did he meet his required daily fluid intake?  Being a Heart Mom means trying not to let the worry surpass you, trying not to expect the other shoe to drop. It means owning medical equipment you never knew existed like pulse oximeter monitors and CoaguChek machines. It means owning an AED and praying you never have to use it.

Being a Heart Family means sometimes spending Christmas, New Year’s or long weekends in the hospital.   Being the sibling of a heart child means learning to roll with the punches; it means knowing that we can never etch our plans in stone because they are bound to change in a heartbeat. They develop an early understanding of life and death, heaven and Jesus, and have experienced the truth that God always carries us through. Being a Heart Family also means never taking a single day for granted and counting each and every little blessing as a gift from God. We make the best of our quality time, because we never know when his time will run out. It means rejoicing over all the little milestones that maybe we’d otherwise take for granted. And thanking God every day for His grace and mercy, acknowledging that it’s all because of Him that we have the blessed opportunity to know and love: a living, breathing *miracle.*

Melissa is a regular blogger for Cardiac Kids. Read her bio and learn more about Tyson HERE
Be sure to check back in 2 weeks for Laura’s next post!