He Is Here, He Is Real!

Brent Ethan Dunlap

One of the helpful and enjoyable things about Brent's pregnancy, especially after his diagnosis, was seeing it through the eyes of our 3 year old, Bryce.  We got to the point where we were able to see Brent almost weekly through the ultrasounds he was having done.  Bryce went to many of the appointments with us, and prior to seeing his brother on the computer screen, he used to ask us all the time "Is he real?"  From his 3 year old perspective, he heard us talking about his brother, but couldn't see him, so in his mind he wondered if his brother was real.  During the same ultrasound where we were waiting to figure out exactly what Brent's heart condition was, Bryce saw a 3D image of his brother for the first time.  I asked him "What do you think of your brother on the big screen?"  Bryce's reply was simple, but one that I'll never forget - he simply said "He's real" and smiled.  That's the moment he realized he was having a real little brother, because he never asked us after that if his brother was real.

One of the things that happens when you find out your child has a life threatening condition is that your mind can sometimes run wild with all kinds of "what if" scenarios, many of which you never want to consider or think about.  You wonder and worry about the future, and until they are born, you don't have your little one to wrap your arms around or their smiling face to help ground you in the moment.

The future is still uncertain and difficult to ponder at times, but we have a new source of inspiration and strength now.  I've felt his tiny little hands grasp my finger, and it reminds me that he needs me to be strong.  I've kissed his soft cheeks and looks into his beautiful brown eyes as he sees the world around him for the first time, and it reminds me that there is hope and wonder and love in our future, no matter how uncertain it is.  I've heard his sweet cry, and it reminds me that though there will be difficult days full of tears ahead, I've been so, so, so blessed to have the privilege of being the one who will comfort him and wipe those tears away.

My little man is here!  He is my warrior, my hero, my inspiration, my hope, and my strength.  He is all these things, because he is real!

A Surprise Shower and A New Normal

Dave, Grace, and Bryce

This past week my team at work surprised my wife and I with a baby shower for Brent.  It's actually the third (and last!) baby shower my coworkers have done over the years for my wife and I at my workplace, the first occurring all the way back in 1999 just prior to the birth of our only daughter, Brooke.  Each baby shower has been memorable and blessed us differently and for different reasons. This particular shower helped by giving us a moment to pause and celebrate the impending arrival of our son - something that should occur naturally and normally in a pregnancy.  But this time around is different, and I'm actually grateful for it because it's creating a new reality, a life changing "new normal", that we are adjusting to more and more each day.

There is a scene in one of my favorite movies, The Matrix, where Morpheus says to Neo "I imagine that right now you're feeling a bit like Alice, tumbling down the rabbit hole".  (I've included the clip from YouTube at the end of this post)  It's a nice analogy for the way the past few months have felt since Brent's diagnosis with the whirlwind of OBGYN visits, Perinatologist visits, Cardiologist visits, Surgeon visits, hospital tours, endless hours reading and researching about his condition, and so on.  In the clip, Morpheus goes on to give Neo a choice - take the red pill and "see how deep the rabbit hold goes" or take the blue pill and essentially go back to his old life.  Well, we wouldn't have much of a movie if he took the blue pill :P

For us, our "red pill" was when we learned our baby had a rare, complex heart defect which would require multiple open heart surgeries and a lifetime of treatment, and even with that, the doctors did not know what his long term prognosis would be.  Of course we did not choose this for our son, but it had the same effect as the pill in the movie- it opened our eyes to a new world - one that was always around us, but we never noticed.  Our son's diagnosis caused us to see that congenital heart defects (CHDs) are the number one birth defect, impacting approximately 1% of all births, yet is grossly underfunded.  It helped us learn that twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet pediatric cancer research funding is five times higher than CHD funding.

At the same time, Brent's diagnosis has introduced us to a community of families and supporters that we would likely have never met otherwise.  Heart families and heart warriors (the name we give to our heart kids!) are some of the strongest, caring, and supportive people you will ever meet.  His diagnosis has given us perspective and patience we didn't have before.  Think of a time you saw a news story or something happened that made you hug your kids a little tighter, or spend a little more time with them randomly in the moment.  Now imagine something happening to you that gave you that feeling, that perspective permanently for the rest of your life...

Even though we don't have the option of choosing the blue pill like Neo did in the movie, I can't say that I would even if I could.  That would be taking us back to a life without our son.  And although we don't know how deep the rabbit hole goes or what exactly or new reality will eventually end up looking like, the baby shower reminded us that Brent's life and our new normal our things worth taking time out to celebrate.

The Matrix - The Red or Blue Pill?

Our First Fundraisers

David, Grace, and Agnes

Yesterday was a very blessed day.  The weather was very comfortable and cool on Friday and we had a large turnout for our garage sale/fundraiser and sold many items.  The second day of the garage sale we didn’t have as large a turnout, but we had people who donated to Brent’s surgeries, which really touched our hearts!  Some people in our neighborhood saw the sign and just walked up and gave us a donation, which is a testament to the generous people in Wylie.  We were able to raise around $500 the first day and $200 the second day, and we are still planning on selling more items to raise even more money for the unexpected cost of Brent’s life-saving surgeries.  Dave’s sister, Tosha, is also holding a dinner/Bingo fundraiser at the Olive Garden in Florida, and we are thankful for her taking the initiative to do this on our behalf.  I am so blessed to have such a wonderful sister-in-law.  I am also blessed with my other wonderful sister-in-law, Agnes, who helped me organize and run our garage sale, and I also could not have done this without donations from our church friends: Kristin, Jeanette, Jennifer, and Agnes’s coworkers from the Olive Garden in Plano.  There is an old proverb that says "Many hands make light work".  This weekend was definitely evidence of how the generosity and kindness of many - coming together in many different ways - can help lighten the burden of those in need, and we will certainly be paying it forward.

During our garage sale, we met some people with sweet special needs children, and one of our neighbors also told us of another heart family that lived in the neighborhood.  We were able to meet them and were encouraged by the story of their daughter who actually just had the Glenn open heart surgery done and is doing well.  It is amazing who God brings into our lives, especially at this time of need because when we first found out about our baby’s diagnosis, we felt very much alone.  We didn’t feel that many people we told understood the gravity of having such a complex heart defect.  We didn’t know ourselves (until our son’s diagnosis) that congenital heart defects (CHD) kill twice as many children as all forms of childhood cancers combined.  Without these life-saving surgeries, most babies with a single working heart ventricle will not live.  Not too many years ago, parents of children born with this condition were simply offered "comfort care".  So, it is comforting to talk with someone who understands the gravity of the situation and who can relate to our journey.

We hope with our son’s diagnosis that we can also help to spread awareness of congenital heart defects.  When we first started this process, I could not help but think, “Why us?  Why does my family and my child have to go through this?”  But then I would turn it around and ask, “Why not us?” and see that we have a lot to be thankful for.  This is our special journey that we are on - one that only my husband and I and our children will experience together.  I use the word "special" alot-it's in the title of Brent's blog.  The word "special" to me is a term of endearment-something that is precious.  Despite the hardship, God cares for us, and we are special.  My son is special.  I was thinking of a verse to go with how we think of Brent and his condition, and Psalm 139:14 came to mind.  “I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.”  God made each of us special - special hearts and all!

Grace