What I've Learned from HLHS

If you are familiar with our family, you know that we have three handsome boys with a cute freckled face red head stuck in the middle who happens to have half a heart (HLHS.) I don't say "only" half a heart because I believe God has given him everything he needs for right now and that is enough.

CHD (Congenital Heart Defect) awareness week is just around the corner and I thought I would share some things I have learned on this HLHS journey.


1. Scars are Beautiful
Scars, those that are seen on the outside as well as those that are hidden on the inside are beautiful reminders of what God has brought us through. I cannot count the times I've traced that long scar down Daylen's chest and cried tears filled with gratitude. If we have the right perspective, scars can be memorials of God's faithfulness.

2. Diagnosis is not Identity
Will our son always be known as the kid living with half a heart? Maybe, and that's ok because it's a part of the testimony God has given him, but it's not who he is. This heart defect does not define or limit him in any way that really matters. Do I still watch him closely as he's playing ball to make sure his breathing is ok and he's not pushing himself too much? Of course and I probably always will, but he plays ball and that fact alone is amazing!

3. Healing takes Time and it's not always pretty
Daylen's chest was left open for a couple of days after his first open heart surgery due to all the swelling. David and I have literally watched our child's heart beating inside of his chest. It was difficult and painful to look at, but in order to heal properly it was necessary. Healing, whether physical or spiritual often takes time, but God's word assures us that "The Lord heals the brokenhearted and binds their wounds." Any kind of binding takes time, so in faith we wait patiently on the Lord knowing He is the One who heals our hearts whether it be physical or spiritual.

4. Letting Go is Super Hard but often Necessary
It was painful to let Daylen go back with his surgeon each time.  We were led to a waiting room where we would impatiently sit on the edge of our seats. Every surgery was difficult, but his third and last open heart was the toughest. You see, Daylen was only 8 days old for his first open heart, 6 months old for his second, and 2.5 years old for his third. At 2.5 years old, Daylen was walking, talking, and calling us all by name. The nurse who was about to sedate him looked at our tears and said "I'm sure you are used to this since it's the third time around." I just looked at her speechless, but then Daylen's cardiologist spoke up for us by saying "but that doesn't mean it gets any easier, actually I imagine it's even harder." He was so right, we held our little boy and prayed over him asking God to protect him while the surgeon and nurses waited nearby, then once again we handed him over for his chest to be opened one more time. Whatever the situation, letting go is never easy, it takes courage but it's often necessary. Recently, Daylen was determined to swing across the monkey bars at the park. He said "Mama, the hardest and scariest part is letting go of one bar to grab onto the next." I would say that life is the same, it takes courage to let go of whatever we are clinging onto (our comfort, past, what we think is best) and reach out, clinging to Jesus and everything He has for us.

5. I'm Not Strong Enough and That's Ok
During Daylen's last hospital stay he would ask David to play a song over and over. The song is "Strong Enough" by Matthew West. He heard it on the radio all the time and loved singing along. The lyrics would pierce my heart every time reminding me that I'm not strong enough and that's ok because in my weakness, His strength is made perfect. He is my strength! Leaning on our own strength is absolutely tiring, but falling into His strength is where we discover peace and rest. There is beauty and freedom in complete surrender. Below is the video to this beautiful song.

6. To Not Worry and Stress but to Pray and Trust
Imagine bringing your two month old home after doctors have told you that he can't cry too much because all the oxygenated blood will flood his lungs and leave the rest of his body blue. They also told us if he were to get a common cold it could be fatal. Imagine laying your baby down for his nap when you hear a "pop" and he begins to scream, and you realize somehow his feeding tube had popped out! He was so fragile the first 6 months of his life and I quickly learned that I must trust Jesus with ALL of my heart in ALL circumstances. Worry, stress, and fear of the unknown only left me miserable. I knew I had to take every fear and worry to Him because it was too much for me to carry. We can certainly cast our care on Him for He cares for us. He is always faithful to supply everything we need for every moment.

7. To Live Moment by Moment and Appreciate Today
Life is sacred and precious, we are not promised tomorrow. Daylen's life has taught me to appreciate each moment, each heartbeat, each new morning. I've learned to slow down, to laugh and be silly, to make eye to eye contact while listening to loved ones, and to simply enjoy today. You can never hug your children or tell them "I love you" too much. I have learned to stop being so consumed with the future, and to live in today, the right now.

8. Jesus is enough!
I have learned that Jesus is everything I need Him to be, my Comforter, my Refuge and Hiding place, my Redeemer, my Healer, my Peace, my Strength, my Joy, and much much more. This earthly life is super short in comparison to eternity and through Daylen's journey, He has taught me to "keep my mind set on heavenly things and not on earthly things." He is able to bring good out of our worst tragedies. Through joy and sorrow, Jesus will always be enough.