Our HLHS Journey: Mourning & Celebration

Today, last week and at least every month since I entered the heart community I have mourned over the passing of a complete stranger's baby. I have never met any of these babies and yet every single one of them who was called to our Lord way too soon has had such a profound impact on me. Today it was sweet Addison, last week Mia and two years ago, the very first child I mourned, was Travis, even before Jasiu was born. I still remember most of their names and their faces and pray for them and their heartbroken parents each night and then thank God for today and pray for more days with both of my children. I can not imagine the pain of those parents who had to say good bye to their children, to turn off the life support, to plan a funeral. I mourn along with those parents and can't help but to think that it could very easily be me mourning my own child and I fight to hold back the tears. Today is Pregnancy and Infant Loss Awareness Day and wanted to do my duty and spread awareness so that we all cherish every moment.

Two years ago on October 16th as I was celebrating the end of yet another busy season at work, we were told the most devastating news of our lives, like so many parents we were so lost and all I could remember were terms like half a heart, termination, quality of life, open heart surgeries... I can't believe it was already two years... We were so heartbroken ourselves because we didn't know what was ahead of us. I think the unknown scares everyone, yet before all of this I never really paid much attention to it and until you have some sort of encounter with a real possibility of danger/ or a "close call" than you don't really know the other side... and just like that in a matter of minutes without any warning we were thrown over the fence.. to the "other side". At that point the reality that I could possibly lose my child hit us very hard and it was such an awakenkng that this "hart community" actually exists and that there is so much pain and joy out there for these babies and families. Had I known what was before us and how our life is now the last year and a half would have been so much different, but we don't and can't know. The cliche that "we don't know what tomorrow holds" becomes much scarier with a medically fragile child. Knowing that a simple flu, ear infection, or anything really, can lead to heart complications and turn into a downward spiral really fast is the scariest thing on this whole journey thus far. Just because we are sailing through at the moment doesn't mean that it is guaranteed that is how we will go through the next set of events and though we live a pretty "normal" life that awful mourning thought is always in the back of my head... always lurking.. because my reality is that we have much higher chances. Hayden went in for a relatively simple G-tube procedure and suffered massive complications and passed away, Mia was on her Make-a-Wish trip in FL and got sick and passed away, Travis never recovered from the Glenn, Brooklyn passed away in her sleep. it's just so devastating yet we must put on a brave face every day and seize the day. Live our lives and hope and hang on to the hope that we will have a long and healthy life together.

However, today I also CELEBRATE. I am celebrating the milestones that Jasiu has made and the battles that he has won and the good things that his journey, our journey has taught me and the doors it has opened up for our family. Because not just our days but everyone's days, weeks, years are unknown, Jasiu has taught me to really cherish life and bring light to the fact that we need to live in the NOW. He has made such progress and he makes me so proud that he's such a fighter he makes me want to not give up when things get tough . Yes, I still lose my temper sometimes and complain about the little things that go wrong but overall I try not to let those things distract me away from the big picture and that is to thank God for each and every day. John and Emily bring such joy to our lives and I can't imagine it any other way.

The video below shows how much we have to be thankful for each and every day. Just the regular boy that we have so full of life. (Emily was napping so pardon her grogginess and our messy house)

Another thing we celebrated last week was an award I received from my work. I was nominated and won the Working Mother of the Year at the company I work for. This was the first year they were doing this and I'm humbled and honored to be even nominated by my coworkers. It was a pleasant surprise. I was nominated in the "Inspirational" category and that is directly related to our journey with Jasiu and HLHS. Once we found out about his heart, I had to create a plan with my firm for my leave and if it was going to be 8 weeks, 12 weeks, 6 months... or forever, all depending on how Jasiu would be doing. Me being a planner and my area of public accounting being fairly cyclical and client service oriented not having a plan could result in inadequate client service. My firm was so understanding and so supportive and respectful of my feelings and fears that they worked with me closely to make sure things were taken care of while I was away and had a back up plan. I really like my job and worked hard to develop my career but my family always comes first even if I had to sacrifice my career. But I was really lucky when Jasiu did so well as to allow me to go back to work and have my husband, my mom, mother in law and sisters help with taking care of John and Emily. But working, even though it is a reduced work schedule, and the numerous appointments and the stress of all that came along with HLHS was very difficult at times but somehow I managed. To me I was just doing what I felt I needed to make sure my family was taken care of, John and Emily got all the care that they needed and my work got completed and clients served well. My co-workers found that as inspirational, I call it just surviving and trying my hardest to strive at home and work and somehow balance it all even if I felt I was sinking at times. Besides the honor of being named the Working Mother of the year at the firm, our story will also be featured along the other Working Mothers of the Year as chosen by their top 100 Best Companies for women. This story will be featured in the Working Mother magazine December/January issue and I am beyond thrilled to be spreading the word on HLHS and CHD's. You can find the story by clicking here.

Additionally I got to bring a guest and be honored along side the fellow Working Mothers of the Year at a WM Magazine Gala dinner in New York City. Naturally I wanted my husband to join me in celebrating and we even got to bring along Emily. We both felt that John was too little to make the trip or sit through a 3 hour fancy dinner so he stayed home with grandma. It was a little bittersweet because this was an honor I received was because of him but it allowed us to have three days one on one with Emily, who during this journey often took the back seat to the spotlight that Jasiu received. Well in NYC, she was the star of mommy's show. Here are a few pictures of our celebration.