“Help us help Hearts!”

“Help us help Hearts!”
This was the mantra of the Pink Bow Benefit 2014 held on August 9th, and boy what an outpouring of help and open hearts it was! It’s been a while since I’ve been able to post with all that I have going on, but it would be remiss of me to not relay how much of an overwhelming success the event truly was. It all began as a mere thought, a ‘nice thing to do’, a vague possibility, a daunting task to say the least. Yet the more I thought about it the more convicted I became to put it on. With each successful milestone Mila achieved I felt the calling on my spirit to give back and bless someone else, some other family with the gift of hope, encouragement and the ultimate gift of donating to the institutions and charities that advocate for research into the cure and treatment of the many congenital heart defects affecting families around the world.
pic 55
Mila’s Pediatric Cardiothoracic Surgeon Dr. Minoo Kavarana and his family with The Troys.

After months of tireless work, lobbying, solicitation, promotion and most of all prayer, the outpouring came. One after the other came the donations, the sponsorships, the volunteers, the participants and slowly but surely it all came together wonderfully. The best part was the event itself, to see every seat filled with people who supported the cause was tear jerking. Everyone who came was moved and their hearts were touched and opened. Opened to the reality of the diagnosis and to the power that was within each of them to help impact a small ailing heart. All the support and a successful event have led to a generous donation to the American Heart Association towards the research of Congenital Heart Defects. In addition a generous donation made to the Bustamante Children’s’ Hospital in Kingston, Jamaica will be used to purchase TWO mobile suction machines for the first ever cardiac unit, currently being built. Talk about the gift of giving?! Glory be to God! Sincere thanks and appreciation to all of YOU who made it possible!
Pink Bow Benefit 2014-6965
Mila’s Cardiologist Dr. Matthew Weinecke with The Troys.

I have certainly learned a lot from this experience. I’ve learned that mankind is still inherently good and kind and is capable of extending beyond themselves to help others. I truly believe that and have not lost hope in humanity. I have also learnt the importance of leaving a legacy for Mila, one of strength in the face of adversity, of always giving to others in need, and the power of community and love. I hope one day when she grows up she’ll look back at this event and know that she was its inspiration, and the blessing that allowed others like her to be blessed by it as well. I hope she remembers that her mom went out into the world and found something that was beautiful amidst all the darkness and turned it into a Beautiful Benefit for all.
Pink Bow Benefit 2014-6971
Mila and mommy : )
To see more exciting pictures from the event please visit https://www.facebook.com/maya.deertroy/media_set?set=a.10152590956590169.1073741839.743330168&type=1
logo-side

From Bubble to Benefit.

Last Sunday my family took yet another leap of faith and attended church for the first time since Mila’s birth ten months ago. Due to her still fairly frail immune system, we have customarily been advised by her doctors to keep her away from large crowds and away from sick people in the short term. This we have adhered to religiously save for a few public excursions here and there. With Mila’s health steadily improving, we felt compelled to go to church last Sunday to benefit from the word of the Lord, offer up our thanksgiving and praise and to most importantly, plant our seeds of blessings by paying our tithes. After all, the Lord has been so good to us thus far, how could we not step out to honor and praise Him in His own house? Surely he would protect Mila there too! We had a good time. Many people crowded around her wanting to see this little miracle for the first time who they had spent so many hours on their knees praying and fasting for. It was good to be back in the house of the Lord!
IMG_4839
IMG_4830
Family photos after church with Mila’s paternal grandmother (Pastor Vivian Troy)

It’s funny, but it’s by virtue of living in this pseudo bubble since Mila’s birth that the whole inspiration behind putting on the Pink Bow Benefit was spawned. It was a desire birthed out of Mila’s fragile state, our isolation, the constant state of being vigilant and careful about her health, which led me to the decision to put on an event to help uplift and motivate others facing a similar situation or simply just living in some sort of bubble in their own lives for various reasons. It’s pretty ironic, but sometimes it’s when you’re faced with hardship you most feel like reaching out and helping others. In some way it’s like therapy, it helps to heal you. The Pink Bow Benefit 2014 is not some narcissistic effort to implore sympathy regarding our situation or for publicity, but rather how I have chosen to allow my bubble to hopefully touch and benefit the lives of others. There is a message I want to convey, that courage is choosing LIFE even in difficult situations and that we can always turn around our situations for good. Not just our own good but also for that of others. This is a part of my process to work through and out of my challenging times. The event is meant to benefit everyone, whether you have a child with a chronic illness or not. This will make you appreciate life and your loved ones even more!

So as the event approaches, I encourage everyone to emerge from the bubble of your own individual lives. Just for an evening, leave your own cares, worries and priorities behind and come out to the event to fellowship and appreciate our loved ones, LIFE and community. Let’s all benefit from the beauty and inspiration that will be shared through the testimony of the lives of the brave little superheroes living with Congenital Heart Defects. Remember community and networks help in the process of healing, so we are looking forward to your support in this venture. In the words of the great Bob Marley: – “One love, one HEART, let’s get together and feel alright!” That’s the mantra of the Pink Bow Benefit 2014 as we put our hearts and hands together in this wonderful celebration of family, community and love. On Saturday August 9, 2014 let’s leave our bubbles to benefit a life! See the Pink Bow Benefit 2014 tab in our menu options to learn more and buy tickets. See you there!

Pink Bow Benefit 2014 promotional video.

poster-final
logo-side

The Waiting Room.

Waiting-Room
The Waiting Room.

I remember it like it was yesterday…sitting in the ICU waiting room after Mila’s second open heart surgery, awaiting her surgeon to come speak to us about how the whole ordeal went. Let me back up a little however, and provide some context. It was Mila’s big day, the day I had dreaded and anticipated simultaneously because of the prospect of her heart repair being one step closer to completion. After handing her off at 6am for the seven hour procedure, my husband and I purposefully chose to not sit in the waiting room while she was in surgery, but instead to go offsite by the pier and try to calm our frayed nerves. We would receive pages every hour updating us on the progress of her surgery. I remember when we got the final page advising us to meet the surgeon in the waiting room in a half hour. We immediately jumped in the car and went to the hospital to hear the details of what had transpired.

I was a nervous wreck, but after a day of heavy meditation, prayer and fasting I was relying on the Lord to guide me through the tough upcoming conversation. There we were in the waiting room that place where prayers are answered, dreams are shattered and souls are lost, by the mere words that come out of the surgeon’s mouth about families’ loved ones. There were families browsing in and out, trying to find some mindless distraction that would take their minds off the gruesome fact that their loved one, their baby was in surgery possibly fighting for his or her little life. Some people slept, others drank countless cups of coffee so as not to sleep. I just sat and stared; at the door, waiting with bated breath for final news about my baby girl’s outcome.

My husband, in-laws and I sat waiting for a half hour, which turned into an hour, then two hours, then three hours! By that time I had withdrawn to a fuzzy cloud that was my mind, my mouth was mercilessly dry and I could barely think straight. What could be taking this surgeon so long to come brief us about the procedure I thought? Had something gone terribly wrong? I was mentally and physically spent. I just sat and stared, took a sequence of shallow breaths and just kept on desperately waiting, praying, hoping. After what seemed liked forever, my husband then declared he was tired of waiting and proceeded to call the ICU to get an update. It was weird; I almost subconsciously wanted to keep waiting so I wouldn’t have to proactively confront any potential bad news. Ignorance wasn’t quite bliss in this case, but it made me able to cling desperately unto hope that everything was still ok with my baby. When he received no answer on the other end, he jumped up and decided to go physically check in the ICU for news about our Mila.

I was so thankful for his strength and courage in that moment, because I was all out of both by this time. After about ten minutes he came prancing into the waiting room with a look of perplexed joy on his face. Mila had been recovering nicely in the ICU all along! The surgeon had come to the waiting room a little too early, hadn’t seen us and left, thinking we would just check in at the ICU in the end! I had an outer body experience. I couldn’t believe that we had wasted three hours sitting in the waiting room, thinking of all kinds of less than favorable outcomes, when my baby girl had been safe and in recovery the entire time! We quickly rushed to her bedside where her surgeon gave us the good news about how successful her procedure had gone. I just broke down in tears, tears of joy. The day had culminated just as I had prayed and patiently waited for.
IMG_9957
Getting the update on Mila’s surgery.

Looking back, I remember that helpless feeling I had of just sitting in that room waiting, of not feeling as if I had the power to affect the outcome of my situation, of not having the courage to stop passively waiting and proactively step out and confront my situation. This made me wonder, how many of us are in a ‘waiting room’ in our lives? Waiting on our jobs to recognize our value, on our relationships to get better, on our finances to correct themselves, or on that convenient time to go get our health checked? Is it that we get a false sense of comfort in ‘not knowing’ or in just being in a holding pattern so we don’t have to face the unknown?

Since Mila has been born I have been in a ‘waiting room’. I’ve been waiting to start eating right, to get back on a proper workout regimen, to get back to work, to travel and the list goes on. Now nine months later, in hindsight I recognize that in some part this has been self induced. Maybe I myself have felt it easier to sit and wait and see if things will miraculously return to some semblance of normal. Now in the wake of my daughter’s increasing health stability, as I slowly take steps to regain pieces of my life, I reaffirm that waiting is not living. I’ve got to get out there, confront my fears, my challenges and overcome them. I’ve got to take back the reigns of my life’s direction and keep moving forward. That’s living, that’s life! Time passed can be never regained so let’s not waste it ‘waiting’, but instead spend it – ‘living’. Good news, great opportunities may be out there but we’ll never know, never experience them until we leave the ‘waiting room.’

IMG_0022
We didn’t wait to celebrate Dad’s birthday. We did it right by Mila’s bedside in the hospital room.

logo-side

Mother’s Day Memoir.

IMG_20140522_013247[1]
Enjoying the beach with Mila.

Mother’s Day has always been one that I have looked forward to. It’s customarily a day on which I plan a getaway to a different place each year for my mom and grandma, where we can all share a new experience; and I always truly enjoy our day spent together. I love being on the other side of the fence as the daughter and grand-daughter delighting them and making their day unforgettable. This would be my routine every year, yet never once did it occur to me in all those years that one day, I too would be a mom that someone would in turn celebrate.

My very first Mother’s Day was a bit surreal as I was still pregnant with my daughter Mila, and had already received the news about her heart condition. At that time my mind was reeling with the thought that my baby had a life threatening illness and I somehow didn’t fully feel as if I truly deserved the title ‘Mother’ as I really hadn’t ‘done anything’ yet. It’s funny looking back at it, because now I see what a privilege and a journey it is to conceive, to carry a child to term and to deliver safely. I was already a mom then but just hadn’t fully embraced it yet.

This year Mother’s Day virtually crept up on me. In between caring for Mila, attending doctor’s appointments, hospital visits, surgeries, therapy and the whole gamut of things I deal with on a daily basis for her care, I just never thought about it or realized it was near until it was literally upon me. My family went to the beach and we had the most laid back, intimate, fun Mother’s Day I could ask for. It wasn’t extraordinary or filled with bells and whistles; instead it was filled with quiet walks on the beach, homemade meals, quaint dinners out, taking family photos and most importantly making timeless memories with our little miracle Mila. I really felt like a mom being celebrated and it felt great!
IMG_20140524_095210[1]
Mila enjoying the sun, sand and sea.

It’s ironic how as the mother of a child with a heart condition I had subconsciously ladled on so many other labels to my plate: germaphobe, nurse, cheerleader, advocate, warrior, heroine and heart mom; yet the one I had probably least focused on was that of ‘Mother’. All this time I have inherently been a mom loving and caring for my child, but I’m not sure if I’ve ever really embraced being just that without the weight of all the other labels I carry. I now understand how as mothers we wear so many other hats that we sometimes forget to celebrate and honour being just ‘mom’.

I can honestly say that this Mother’s Day, for the first time since giving birth to my daughter I made a conscious decision to drop all the other labels that come with being a ‘heart mom’ and simply languish in the blessing of just being ‘Mila’s mom’. The transformation was almost effortless. It felt great to just get up, have my husband make me a delicious homemade breakfast, cuddle with our baby girl and receive the treats and appreciation from our loved ones for being just ‘mom’. On Mother’s Day, I truly embraced being a mother period. No peripheral labels, expectations or pressure. I simply held my little girl tightly in my arms, felt the sun on my skin, my breath, felt my heart beating in my chest and knew that I was alive and that I had purpose! I recanted to myself that being just ‘mom’ was enough, I was enough! With that in mind I walked gently but assertively into my first Mother’s Day and into the unrelenting, beautiful journey of Motherhood.
IMG_20140524_100856[1]
Family photo.
logo-side

HLHS All Grown Up – Interview with Meagan Broucek (Pt 2)

10255697_843822582311098_1316986394_n
Meagan Broucek

As the parent of a child with a Congenital Heart Defect, I constantly wonder what the future holds for my eight month old daughter Mila, diagnosed with Hypoplastic Left Heart Syndrome (HLHS). I not only wonder about her future health, but also about her quality of life way into adulthood. It was therefore my absolute pleasure to have encountered our interviewee Meagan Broucek, who has been kind enough to share her story.

Meagan is a beautiful and vibrant 24 year old originally from Saline, Michigan who is currently living and thriving with HLHS. She is one of three children and holds a Bachelors Degree in Psychology from Trine University in Indiana. Meagan is currently a photographer who owns her own business – Meagan B. Photograpgy https://www.facebook.com/MeaganBPhoto. See part two of her very candid Pink Bow Diaries interview below, which demonstrates that despite the bumps she’s encountered in her life’s path to date, she has prevailed, triumphed and is now living her life happily on her own terms!

What’s your social life like and what do you do for fun, living with HLHS?
I am very social now that I am a young adult. I try to meet new people and like talking to different people. I love photography, so I will go out and just take photos. I played softball for the longest time, and love just walking or running on the beach. I can do anything like a person who doesn’t have HLHS, but I need to know my limits on how much my body can take.

What are your long-term goals?
I want to work with children; I would love to become a speaker about HLHS for parents and children who have HLHS. I am unsure if that dream will come true but why not try! I want to become a Child Life Specialist in a hospital and help children with distraction therapy for when they need to get shots and things of that nature. I believe working with children is my calling in life.

What inspires you and gives you the courage to bare your scar?
It took a lot of time, but I somehow just became confident with my scar. It happened for me after high school, I was in college and away from everyone that made fun of me or hurt me in someway. I could finally be myself, with my scar. I was embracing what I was blessed with. I have this scar to show that I survived; I made it though three heart surgeries. I am here for a reason and I know that now.

♥ How has living with HLHS affected your career and your ability to find love?
It has affected my career because I changed my thoughts about it for years until I worked at a hospital for my internship. I knew I was meant to work in a hospital and helping people. To find love? Was difficult, since I was so shy during school. I didn’t date all through high school, and then I graduated and became the real me. I met an amazing guy in 2012 and we have been dating since. He says he doesn’t even notice my scar, and doesn’t make a difference. He loves me for who I am.

♥ Describe your current health and fitness regimen.
I walk on the beach almost daily; I walk about two miles. It’s great and refreshing to be outside. I also do cardio and know my limits on what I can do, so if I am getting too tired I will slow down or stop.

How do you view yourself outside of HLHS? Does your heart condition define you?
No, my HLHS doesn’t define me in anyway. I was born this way and it will always be a part of me. I view myself as a confident, outgoing, amazing person and will always strive to be that.

Do you fear HLHS or embrace it and why?
I embrace it; it’s me and wouldn’t want to be any other way. My HLHS and everyone who has ever made fun of me or like my scar has made me who I am today. I don’t ever want that to change. I also fear it for when I have a child. I am fearful that I might pass it on and will have to deal with the worry that my parents dealt with.

How do people generally respond to your heart condition?
Everyone is different. I have had people be rude, or nice. There have also been people I’ve wanted to punch because I was so upset with what they have said. It’s crazy that some people can be so rude to someone who is so different. If someone asks “Are you sick? What’s wrong with your voice? I tend to either answer “nothing is wrong” or I tell them I have HLHS.

In your own words, please give my daughter Mila the best piece of advice for facing life with HLHS.
I would tell her that she needs to embrace her scar, embrace why she is here and why God made her this way. Mila, you were put on this earth to do something amazing, so embrace your life and make it your life. Live the way you want to!

logo-side

HLHS All Grown Up – Interview with Meagan Broucek (Pt 1)

10261826_843822588977764_1290458754_n
Meagan Broucek

As the parent of a child with a Congenital Heart Defect, I constantly wonder what the future holds for my eight month old daughter Mila, diagnosed with Hypoplastic Left Heart Syndrome (HLHS). I not only wonder about her future health, but also about her quality of life way into adulthood. It was therefore my absolute pleasure to have encountered our interviewee Meagan Broucek, who has been kind enough to share her story.

Meagan is a beautiful and vibrant 24 year old originally from Saline, Michigan who is currently living and thriving with HLHS. She is one of three children and holds a Bachelors Degree in Psychology from Trine University in Indiana. Meagan is currently a photographer who owns her own business – Meagan B. Photograpgy https://www.facebook.com/MeaganBPhoto. See part one of two of her very candid Pink Bow Diaries interview below, which demonstrates that despite the bumps she’s encountered in her life’s path to date, she has prevailed, triumphed and is now living her life happily on her own terms!

1. When did you first become aware of your HLHS diagnosis and how did you handle it?

I first became aware after my Mother and I attended an event for children with congenital heart problems when I was 5 years old (1995). All these parents were coming up to me and my mother and asking her all these questions and wanting to see my scar. I think that is when I started to become ashamed of my scar because so many people wanted to see it. I then became very shy about it, and scared what people would think of me. When I had my surgeries, they put tubes down my throat, which hit my vocal cords, so my voice sounds like I’m sick all the time. So that added to me being shy. I handled it by not making a lot of friends and keeping to myself.

2. Describe how your heart condition has affected your relationships: the dynamics in your family and external relationships.

I was most comfortable with my family, since my older sister and parents were at the hospital when it all happened and know every detail. My parents worried about me all the time until middle school. They wanted to make sure I wasn’t pushing myself too hard. My older and younger sisters are great, my older sister was the first one to hold me after I was born, and also she named me. My younger sister didn’t know I had HLHS until she was a little older. I knew I was different because I couldn’t play as rough as them and I couldn’t play all the cool sports like my sisters did.
I did play softball for 12 years and soccer for 6. I wanted to try lacrosse and basketball, but they were too much for my heart. I only had a few friends growing up and I am still really good friends with them. I only told a few people about my HLHS because I was so worried about what people would think. Yes, people judge and make fun, and that is what made me so shy and made me not want to tell a lot of people. Since I was so shy through school, I didn’t have many relationships. I did date and meet some nice people, but then I met a really great guy who understands that I have HLHS and loves me for who I am.

3. Describe the main differences between living with HLHS as a small child, teenager and now as a young adult.

Child: As a child I didn’t fully understand what was going on with me. I can’t really explain how I felt back then because I don’t really remember it all. I only remember stories I was told and photos I have seen.
Teenager: When I was a teenager, I played softball, had friends that I trusted, and was doing very well in school. I was in a lot of groups and met a lot of people, but I still didn’t tell many people about my HLHS.
Young Adult: Now that I am an adult and have my own life, everything is different. I am living with the guy of my dreams, have a full time job, my own photography business and my scar is just part me. If people ask, I just tell them what happened, I don’t try to hide it anymore. It took time, but I grew into my scar and realized it was who I am, not what defined me.

4. What have been the main challenges about living with HLHS in your experience?

Honestly, other people. There are people in this world who don’t care about others and say whatever is on their mind and it can hurt people. There were times I went home and cried because of what people have said to me, or how they acted because I was different. People can be cruel and curious. While in school, almost everyday I was asked “What’s wrong with your voice,” “Why do you sound weird?” and “you had heart surgery and lived?”
I got used to it, but it was the most annoying thing at the same time. In middle school and high school I was made fun of for being so different and having a “weird” voice. I also was usually asked “are you sick?” or people would mimic my voice, which was just rude. I always questioned how people were so mean to people who were different than them. I thought about it, and realized, people just want to know the unknown and make fun of what is different.

5. What are some of the positives about living with HLHS in your experience?

There are many positives! You have an amazing story to tell others if they want to hear it. You are different and can really show others how amazing you really are. This one is funny, but as a child I used it to get out of things I didn’t want to do. For example, I didn’t want to go to school one day and I told my mom “I don’t feel good, my heart hurts” which was what I said when I had some slight chest pain. My mother let me stay home and watch movies all day, it was great! You have a pretty badass scar to show people. Having HLHS has been a love hate relationship with myself, but now that I am older, I love it and I just want to help others like me.

6. How has HLHS impacted your spirituality and your general outlook on life?

HLHS has changed the way I look at things in life. I try to see the good in everyone and everything, even if they are different than me. I don’t judge others, because I don’t want people to judge me. Having HLHS has made me want to help others more and more. Helping people just makes me happy and puts a huge smile on my face. I also don’t question others about their scars, if they want to share it, then they will. I don’t want to force people to talk about something they don’t want to.

7. Describe what your social life is like and what you do for fun, living with HLHS.

I am very social now that I am a young adult. I try to meet new people and like talking to different people. I love photography, so I will go out and just take photos. I played softball for the longest time, and love just walking or running on the beach. I can do anything like a person who doesn’t have HLHS, but I need to know my limits on how much my body can take.

8. What advice would you give to parents with infants and small children who have HLHS?
• Be patient
• Don’t worry too much
• Research everything: your doctor, the surgeon and about HLHS
• Trust your gut
• Talk to older people living with HLHS
• Let your child live their life!

10255697_843822582311098_1316986394_n
Please visit Meagan’s page at https://www.facebook.com/MeaganB11 to follow her story.
logo-side

G Force

IMG_9929
Silent prayer over Mila before handing her over for the bi-directional Glenn surgery.

By definition, ‘G force’ is the gravity pull on the body when it accelerates and changes direction. Imagine being on a roller coaster after it has peaked, plummeted and then begins to rapidly climb again. You know that really heavy, downward tugging feeling on your body in that moment when it begins to climb; which pushes you back into your seat, makes your face tight and your heart race uncontrollably? That’s G Force! My daughter Mila’s recent bout of surgery made me think about this phenomenon both literally and figuratively. Just three weeks ago, she underwent her second open heart surgery, in a procedure called the ‘bi-directional Glenn’ (Glenn). This operation was a HUGE milestone in more ways than one. It happened to be the very critical second stage of her heart repair process and had been greatly anticipated from the moment her first surgery was completed.

There were many critical milestones to be met and a lot of pressure leading up to this operation. From target weight requirements to be met to constant growth monitoring; all these considerations made the journey a high tension one. It’s as if the Glenn had become a presence of its own, always hovering, watching, luring, daring, beckoning us to make it to its gates without failure or incidence. In some ways I think I grew to subconsciously glorify it, by putting a lot of hope in and anxiously awaiting the promised changes it would herald for Mila’s future heart health. You can therefore imagine the relief and joy I felt when she successfully met her pre-surgery goals, made it through the critical ‘inter-stage period’ between surgeries and was now ready for the G force in our lives that had become the bi-directional Glenn surgery. After a rocky climb, it was with much relief and anticipation, that I finally felt as if I had reached the peak of my figurative roller coaster ride.

A day prior to surgery however, we found out that the procedure had to be delayed because Mila had some anatomical complications. The prognosis was not the best. I remember sitting on the hospital bed with her cradled in my arms, listening to the surgeon outline her challenges as if I were underwater. Here came the roller coaster ride again! I felt the G forces pulling me down in exponential proportions. My heart raced and fell to my feet, my head spun, my body felt weak as if it would fall to the floor in sheer horror and disbelief; yet I just sat there in absolute numbness and confusion. I was saying to myself, how could this be? I had done everything I was instructed to: I kept her in a bubble, worked on getting her to the required weight, kept on top of her monitoring and doctor’s visits. I thought I had this under control?!

That wasn’t the time for pitiful, empty questions however. While I awaited her surgery to be rescheduled, I decided to accelerate my attitude of gratitude, my faith, and spirit of thanksgiving to the Almighty. I kept on praying, believing, petitioning for God’s mercy, favor and grace for my baby. A month later, with time rapidly elapsing outside the recommended surgery timeline, the surgeon decided to go ahead with the procedure, making it very clear that with her complications, the bi-directional Glenn was a best case, hypothetical scenario. The day of surgery was one riddled with a constant stream of G Forces for me. It was one where every second, of every minute, of every hour, I had to fight against that gravitational pull, trying to immerse me in doubt, depression, distress and worry. I had to shift spiritual gear, accelerate and stand rigid in my faith to combat them. That day was even more so, one filled with consecutive, small acts of bravery on my part. I had my mind made up, I was going to finish this roller coaster ride well!

After the seven hour procedure we met with the surgeon and he told us that he had been able to perform the Glenn after all and that albeit challenging, it had been a huge success! He pointed out that Mila had done better than anyone had anticipated! I immediately bursted into tears, held my hands towards the heavens and blurted “thank you Jesus” for what seemed to be hundreds of times. I was so overcome with wonder, awe and gratitude; that God had showed up for my family and granted us the very desire of our hearts. This Glenn that had seemed so unattainable, such a formidable force, was the very thing He had granted us for our faithfulness. He had heard our prayers and had rewarded us for not allowing this challenge to be a hindrance or limitation, but rather to be our leverage, to accelerate us higher and closer to Him. It then dawned on me that I had to stop glorifying her illness and instead, recognize it as a light affliction leading me to greater tasks of faith.

In that moment I had the biggest epiphany, that God had been in the G Force the entire time! The delay in Mila’s surgery had been God’s purpose and Divine timing. This had afforded the surgeons more time to come up with a more robust surgical plan, which subsequently placed her in a better position than she was a month prior. God also used that time to allow me to accelerate in faith even when the pressures, the tension and anxiety of the Glenn weighed heavily on my shoulders. There are G forces that are meant to create stress on your mind and body in the scientific sense but there is the ultimate G force called God, who comes armed with Grace and Glory to be our beacon of light in our dark places. We all face our own afflictions in this life that seek to weigh us down, burden us and drag us into a dark abyss; but in order to accelerate and rise above them, just trust and believe that GOD IS IN THE G FORCE! My roller coaster ride is cruising into the dock, and I do believe I have finished well, by God’s Grace. Hail to the ‘G’!
IMG_9934
6 a.m. family pic before Mila’s Glenn.

logo-side

Antisocial with Social Media

untitled

My approach to Social Media: Facebook, Twitter, Blogs, Tumblr you name it, has always been somewhat of a guarded one. It often seemed to me that by the time you have mastered one application, it then gets upgraded and there are three new ‘happening’ ones that suddenly become the rage. I just could never keep up, and so, kept my relationship with it limited and intimate; with a constant watch over the number of people on my friends list or in my network. I’ve always found it a great way to stay connected with family and friends near and far, and I actually share pieces of my life via this medium. It is a way to share my life’s adventures, places I’ve been, things I’ve experienced and to share in others’ experiences by the same token.

That would all change when my daughter Mila was diagnosed with a rare heart condition – HLHS. The decision to share or ‘come out’ with your child’s illness to people outside of family and close friends can be somewhat of a difficult one. It is something you hold so close to your heart you can’t make up your mind who you want to share it with or when. From the point of diagnosis to Mila’s first open heart surgery, I never said a word publicly on Social Media about my circumstance. I didn’t know how to, and so I went from being a Social Media socialite to a virtual recluse. Suddenly I wasn’t so sure if ‘the face’ I always had on Facebook: happy, go lucky, adventurer, lover of life, was still the one remaining in the midst of my life changing experience. I felt as if what was left was a mere shadow of that girl, now ridden with the dark reality of my daughter’s illness. It made me think, was this ‘the face’ I now wanted to share with the virtual community that always ‘liked’ my pictures and posts and shared in my once carefree life? Would they get this challenge? Would they welcome this ‘face’ without judgment, pity or reproach? It was something I had to think about for a long time.

I remember having a conversation once with a fellow heart mom at the hospital, who had chosen to share her journey on Facebook. She shared with me the overwhelming support she had received, and how it had actually gotten her through some very dark times. That provoked my thought process and I began to question the real reason I hadn’t chosen to share my journey on Social Media, the way I had shared all the fun, glowing, socially acceptable experiences. Was it my daughter’s illness that was antisocial or was it me, when it came to the less than glowing situations in my life? It then begged the question what ‘face’ am I really putting out there on Facebook, on Social Media? I then began to think of all the things people post on Social Media, the ‘faces’ they create, depicting only what they want people to see; albeit how remote it may be from their life’s reality. Does Social Media truly reflect all of our lives’ experiences good and bad; or do we simply create a front that represents only the parts of our lives that we deem to be enviable and socially acceptable? I then mused, if I carried on in this anti-social silence would I be true to myself and to my circumstance, or would I be like many others who only present the ‘face’ I wanted others to see? The answer was no.

I then decided to no longer ‘dress rehearse’ the social acceptance of my predicament, to no longer give so much attention to how I thought people would view it. The thought of my daughter’s illness was akin to that of having a wound. A wound needs air and nurturing care in order to heal and so I had to talk about it. I needed to carefully do what was necessary to help myself feel better. In that vein, I ‘came out’ with my new ‘face’. The one that knew happiness and pain, joy and suffering, fear and freedom, trials and triumphs. The one that had acquired a few more stress lines, bags under the eyes from sleepless nights and the one that bore the wisdom of a mother, born out of one of life’s most profound learning and growing experiences. So I shared my story on Social Media, I started this blog and spoke of my journey on Facebook.

To my surprise Social Media opened up and received me in a way that was unimaginable. Suddenly I realized that there was this global village ready to offer overwhelming support to me in my time of need. Why was I ever antisocial with it I wondered? The true nature of how sociable it could be was now manifesting itself before my very eyes. The flood of prayers, encouragement, pictures, kind sentiments and words of wisdom touched me to my very core. It was great to know that I could come clean, bare my heart and still be ‘liked’. Ironically, Social Media became my ‘breathing space’. The place where I could go and write, bare my feelings and receive support, prayers, upliftment and encouragement. I was overwhelmed by the level of compassion I was afforded in this breathing space, that space where people viewed me without judgment, criticism, or the need to control. That space where everyone believed I was capable of resolving my difficulties and challenges, and chose to STAND with and by me in that awareness. I guess the moral of the story is to always be true to who you are and your circumstance. I now know that owning my story and loving myself through the process is the bravest thing I’ll ever do! Thank you Social Media!

pizap.com10.78451825259253381396908133445

*Visit the album Pink Bow Army at facebook.com/pinkbowdiaries for more support pics!*
logo-side

Life is combat – Dad’s ‘Dogfight’

nose
A warm welcome to my husband’s guest blog post below, offering a Dad’s perspective on this journey. Taj Troy is currently serving active duty, as an F-16 fighter pilot in the US Air Force.

*”Dogfighting is both an art and a science.” I’m not talking about an illegal back ally pitbull fight, but rather aerial combat. “To be successful at this, a fighter pilot must understand geometry, physics and aerodynamics. The application of this collective knowledge takes place in a dynamic, fluid and unforgiving environment. In one on one air combat, creativity, ingenuity and confidence identify the victorious; hesitation and uncertainty define the defeated.” The objective is to kill and survive in the aerial combat arena. If you’ve ever seen the movie Top Gun, you’ve witnessed the best Hollywood replication of a ‘dogfight’.
2564_1118169028490_6687623_n

As Mila’s dad, life for the past sixteen months has been like a ‘dogfight’! As a fighter pilot, life’s experiences in principle are extremely similar to those of my profession. I remember a time when just hours prior to her surgery I looked into my eight day old daughter’s eyes and I imagined seeing her first steps, her training wheels coming off, her first flight with dad, the father/daughter dance and a smile invitingly crept unto my face. The moment was then suddenly extinguished at the fleeting thought that my daughter could possibly not survive surgery, and I could be making funeral arrangements instead. It was an awful feeling that cut like a dull yet sharp knife being repeatedly raked across my chest. At that moment Mila physically possessed more heart than I did. As a father, husband, provider, protector I was helpless. As a man I’m supposed to shield my family from the troubles of this world. I would endure a thousand surgeries just so Mila could avoid her three. Helpless with nothing more than air in my lungs and warm blood in my veins all I could do was pray. I would soon learn that this seemingly ghastly ordeal would usher a rebirth of my faith. (ref Proverbs 3:5).

As fighter pilots we go to win 10 out of 10 times, decisively. When strapped into my jet I have the power to single handedly protect thousands of people at once. Looking at Mila lying in the ICU with seemingly more wires, hoses and monitors than flesh, was painful. My faith was truly tested. I had no control of this situation. I have known and served God all my life. I always prayed, worshiped and attended church but it wasn’t until Mila, that I discovered a relationship like no other with Christ. Why did I neglect to give the very God I worshiped relationship until now? It wasn’t just me anymore, but my vulnerable and defenseless child and my wife, which God had now charged me to provide for and protect. God wanted me to surrender not just this situation but all situations to him. I had to let go of the fears, doubts and inhibitions. With this revelation, I felt emboldened like a mad bull, a battleship looking for a fight! “I have God on my side, what?!” I no longer imagined “what if” pertaining to Mila. In God’s infinite wisdom I prayed for my child’s strength to endure surgery and my strength to endure His will.

Four weeks into our ten week hospital stay God shared something special with me. In the Holy Bible the common theme amongst the many chapters and verses is adversity that is overcome with overwhelming triumph. The Bible speaks of many significant men and women, however there is no mention of the many that were asked to build the Ark but failed in the face of adversity. Only Noah saw it through when the message was delivered and didn’t quit. There were many sick and stripped Christians but only Job remained faithful in spite of his plight, with uncompromising faith. There were many men who God asked but all lacked the faith to lead, but Moses. To put it simply, many men and women auditioned to be in God’s cast (The Bible) but only a few were selected per their free will of faith. I knew then I was being observed by God for greatness with this trial. I can’t quit, give up or lose faith. I want my family to make the final cut and be listed as a member of God’s all star cast. The Bible is a living document and is no different today than it was a thousand years ago. In my desire to live in God’s perfect will for my life, I make myself accountable to him. Yes, I’m accountable to Maya and Mila as a husband and father, but more importantly I’m accountable to Christ. My fear in disappointing God is sturdy (ref Psalm 111:10) and He’s counting on me to see the mission to the end not abort it in fear.

Jesus is my F-16 fighter armed to the teeth, with 2000 lbs of laser guided bunker buster bombs and heat seeking missiles. God is now my most lethal weapon on this mission and with this intrepid conviction I am not limited, I am not hesitant and my faith will make me victorious in battle. I thank God everyday for Mila with her physically under developed heart. God thought proudly of Maya and I to give her to us. He knew it would be difficult but he put us together for this very trial. We were made for this moment! To the average person that would sound crazy, loony, and downright asinine, but seeing God’s glory is really a matter of closing your eyes. I will conquer the enemy’s plan to rob and destroy, I will not walk away from this battle limping, I will be victorious in this ‘dogfight’ for my daughter! I wouldn’t trade this little half heart princess for the world. I’m truly excited about her life and the people she’ll inspire, especially me. Her story is already one of triumph and not failure! (ref 1 Peter 4:12)
Mila-110

*Air Force Tactics Techniques and Procedures (AFTTP) 3-3.F-16
logo-side

For Better or for Worse

wpid-IMG_119229587301289.jpeg
It was on a balmy day by the seaside, with the wind blowing in my hair and looking into my husband’s eyes that I said this wedding vow with zeal and sincerity; thinking in my heady euphoria that surely we would never have any ‘worse’ moments in our future, that we couldn’t work out. This is a vow many people say readily when they get married, without giving much thought to exactly how bad things could actually get, and how they would cope and deal with them as a couple. Having a child with a chronic illness has impacted every aspect of my human existence, with my marriage being non-exempt. It has never been more apparent to me, how important it is to be equally yoked with your spouse, before now. My daughter Mila’s journey with Hypoplast Left Heart Syndrome (HLHS), albeit a challenge, has ironically also been a rewarding one thus far for my husband and I. How is this possible you may think? What good could ever amount from this and what lessons could it ever teach?

♥PATIENCE
Never before have we ever had to exercise as much patience, not only with the HLHS process and our baby, but especially with each other, before now! When you have a child that’s ill there are many decisions to be made, processes to be adhered to, long nights and weary days to endure and it’s very easy to snap at the person closest to you; your spouse. What I have had to realize is that not only do we need to love and be patient with ourselves throughout the process of trials and triumphs, but we also need to love and be patient with our spouse, throughout it too.

♥TRUST
We have really had to trust each other throughout this whole experience. As a single person I mastered the art of relying on and trusting myself to deal with the challenges of life; but during my marriage it took an actual paradigm shift for me to realize that I could also rely on and trust my husband with my welfare and that of my daughter’s as well. On this sojourn there are many hard conversations to have and decisions to be made for her welfare, which we have had to trust each other with. I have even learned to sometimes relinquish control and trust my husband to make the tough calls as directed by his convictions and Christ. Ultimately, we have to trust each other to ‘show up’ and just say “I can’t fix the problem or the pain, but know that I’m here with you and we’re going to conquer this together, by God’s grace.”

♥VULNERABILITY
I’ve always viewed vulnerability as being weak, needy and dependent; and if you asked me today what vulnerability is, I would say “dealing with Mila’s HLHS.” It is an experience that leaves you terrified and liberated all in the same moment. My husband and I have had many meaningful exchanges where we’ve bared our souls and been our most vulnerable with each other, in order to deal with this condition. There are moments when I confess to him that I’m feeling brave and scared simultaneously. I have found that in my marriage, vulnerability is the gatepost to spiritual awakening and to greater intimacy, openness and honesty. There was once an occasion when we both went out to dinner and began talking about Mila’s welfare. That was a hard conversation where we delved into our greatest fears regarding her. I remember us both tearing up and being so vulnerable and truthful about our innermost thoughts in that moment. We talked about and we talked through those emotions, and we left that dinner feeling closer, more courageous and more inspired than ever.

♥PRACTICING JOY AND GRATITUDE
If it’s one thing I have learnt from my husband’s very lighthearted nature, is that I have to cultivate joy each day of my life by simply being grateful for each moment of my life. He has an adept nature of seeing the lighter side of everything. True story: while Mila was still confined to the ICU after her first open heart surgery, my husband decided to buy her a toy wrestling championship belt. I thought he was crazy! How could he find mirth in the middle of our very serious situation I thought? I was perfectly comfortable sulking in the dark abyss of the painful steps of her recovery. He took that belt and placed it at the top of her hospital bed, singing “Here comes the Champ!” from the movie Rocky. He would enter the ICU in the ensuing days singing that line and he would look at her and say: “Mila, you’re a Champ, you’ve beaten open heart surgery!” I eventually had to lighten up, join in the song and laugh at his gimmick. I was reminded that I needed to be grateful that she had survived the surgery and was recovering well. I then realized that even if I didn’t plant my own seed of joy, I could certainly cultivate the one my husband had planted and benefit from the happiness in those simple, but profound moments.

♥FAITH
We have grown and stood together in our individual and joint walks of faith. Coincidentally, vulnerability somehow does that to you; it births faith. There are days when we laugh together, cry together and every day we pray together. We both have God as our moral barometer, source of life, shield and protector. We are fortified on this journey together, because we are equally yoked in Christ. Through it all we never lose “us” and we never lose our faith.

You see, whether you’re married or not, you may be seeking a way to combat your own dark abyss. Hopefully you see some merit in my revelations or you may need to cultivate your own. Life can often make us feel alone in our suffering, but in reality there is no experience out there that someone hasn’t already been through. So whether you have a spouse, a close friend, a family member, or even a mere stranger who relates; just know that you are never truly alone. Mila’s HLHS has rocked my marriage, but my husband and I are emerging closer and stronger from it. I now know that sometimes it is out of things getting worse that they can actually become even better!
wpid-20130901_210535_Peter.jpg
logo-side