Tag Archives: HLHS

Before The Wound – The Cure

Brighton

Before the infliction of the wound, the Holy One, Blessed is He provides the remedy” Megillah 13b

“The Lamb was slain before the foundation of the world” Revelation 13:8

Today is a big day. It’s April 1st – The Fool’s Day. Today my wife and I celebrate our 9th wedding anniversary. This day fit our personalities (maybe mine a bit more she’ll say) as the perfect date for us to marry on. As the old song goes I guess we “fooled around and fell in love”. For her and to God I’m thankful and happy. We have a wonderful family, great friends, a beautiful home and good jobs. We have been living a blessed life and on most days we actually stop down for a few minutes to acknowledge our blessings as a family. For us this usually happens once the day is starting to wind down around 9pm or so and we gather in our living room or one of the kids rooms and we thank God for All Things, the good, the bad, the crazy, the funny, but mostly just for letting us fulfill another one of our days that are numbered without us knowing according to His grace. Today is a big day.

Now I will fill you in on the details of why this is such an important day beyond the fact of my Wedding Anniversary or the epic jokes and tricks that I look so-forward to playing on people every April 1st. I will begin this story on New Year’s Eve 2014 which also happens to be my daughter Braylee’s birthday. As such, we were busy prepping to have a slumber party for her and some adult friends over for games that night. At some point during the day, I took a few minutes to reflect on 2014 and the milestones that had happened. We had finished building our first home by the end of Spring, found out that we were pregnant with our 4th child by the end of Summer and Elizabeth starting home-schooling our kids at the beginning of Fall. A thought and a silent prayer came to me during this moment and I said to myself “Lord, please use me for your will and purposes in 2015 and may I be obedient to that calling. Amen.”. Within 5 minutes I was caught back up in the busyness that is our days and this life.

A few days later, it was January 5th. We had rung in the New Year, like all others with a renewed hope and great expectations for what could be in store for us in 2015. We had been referred to a fetal cardiologist at Baylor in Dallas and were told not to worry and that this would probably just be a routine extra check-up as we were in a very low risk pregnancy category. Within the first few minutes of the visit, we were stunned with the news we received. Our baby boy (we didn’t have a name picked out yet) had only developed half a heart. Our worst fears were confirmed when we were told that his condition which is Hypo-plastic Left Heart Syndrome or HLHS for short was one of, if not the very worst Congenial Heart conditions that a baby could have. We were told frankly that his life expectancy would not be long and quality of what time he did have could be in question in comparison to our other “normal” children. There is no medical “fix” for HLHS and ultimately he will need to have a heart transplant at some future date in life, sooner or later. In the mean time, the only medical option we have is a series of 3 open-heart surgeries that re-wire the heart in a way that these kids can function up to a certain level for an uncertain time. Only God knows! This was a punch to the gut. It hurt and everything became a little blurry while sitting in the doctor’s office. My brain was flooded with so many thoughts at once that for a brief moment I couldn’t think about anything at all. Thankfully in short order the first Scripture verse that came to my mind was Romans 8:28 Now we know that all things work together for good for those who love God, who are called according to His purpose.”. I was still in shock and didn’t understand how or why this could happen, but I was confident in this fact; somehow, someway, God has meant this for good and we will find out someday in this world or the world to come.

“Good theology helps God’s people grieve the unthinkable with grace and confidence. #perplexednotcrushed” Matt Chandler

We finally fell asleep once we got home that night and on the next day we determined that it was time this baby had a name. We knew that we wanted a strong “B” name and had been consulting many options and meanings and we ended up settling on Brighton. Brighton in Hebrew means “the one who is loved”. Beyond Appropriate! We had been suggested Abraham as a middle name and liked it since Abraham is known as the “father of faith” and was heavily tested by God through his son Isaac. In my family, we have 2 middle names so we went with a family name that also has a special meaning; Immanuel “God is with us”. So the day after we received the news and had confirmed a name, we felt there was a reason that we couldn’t decide on one before we got his diagnosis. It was just meant to be. Brighton Abraham Immanuel Bond. His name will forever be a testimony.

Do you believe in Miracles? We do! Whether large or small is a matter of subjection, but we objectively have faith in the miracles of the Bible and those that have occurred personally in our lives. Both Christianity and Judaism are faith traditions built upon the very foundations of historical miracles. We immediately begin petitioning God and asking that it be His will to provide a miraculous healing for Brighton’s heart. But, most importantly we asked God to grant us strength to be obedient to his will for us and Brighton. For the past 2 months we have been on countless appointments and visited multiple hospitals seeking knowledge and answers about Brighton’s condition. We have met some amazing people through this journey, people who undoubtedly we were supposed to meet and form relationships. We have had the privilege of hearing amazing stories and testimonies that have greatly strengthened us and provided comfort to our situation. A light in the darkness. God is faithful and true to provide a miracle, it just might look different from what we have in mind.

“Miracles are not in contradiction to nature. They are only in contradiction with what we know of nature.” St. Augustine

Brighton decided to break forth into this world on Friday, March 27th at 3:20 in the morning taking deep breaths and crying out with strong lungs. He weighed 7.8 lbs and was 21.3 inches long. It was a very fast and relatively easy delivery (easy that is for me to say). Brighton was born with HLHS. Since he came into this world, he has been doing great and has been in very stable condition at Children’s Medical Center in Dallas awaiting his first surgery. Today is a big today. Brighton has his first major open-heart surgery today called the Norwood procedure. Update as of 7:30 pm: Brighton’s surgery was successful and he is now in recovery! Praise God!!! This is nowhere near the end though. There are many other things that have happened over the past 3 months that I would like to share, but my time is short for today. Our lives will forever be changed and this is only the beginning of a very long journey. We are both grateful and thankful that God is faithful to walk with us on this journey. This or something like it is the very reason for our faith and how it is made true. As the quotes at the beginning of this post speak to, before the fall when the whole universe was fractured and sick due to sin, God had already provided the cure through Yeshua (Jesus) the Messiah. Before Brighton or any other child in this hospital got sick, God provided the cure. He is the answer! He is risen! Our hope is in Him through His Resurrection! Come Quickly!!!

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name