My Hope Is Built On Nothing Less

I have no other way to introduce this introduction other than praising God for his goodness. Since we had revealed the news about Cillian’s diagnosis we had countless individuals reach out offering their support. We are grateful.

Wednesday was filled with grief, but Thursday Sam and I got down to business, wrote a list of everything that needed to be done and split up the work. At the beginning of this we prayed for strength and direction on what to say and do. Our first task was to figure out where we wanted to get our second opinion and seek treatment. On the drive home on Wednesday though, we both felt like it was Boston Children’s given their expertise on these types of surgeries. What’s funny is every connection we spoke to, both medical and non-medical, said to go to Boston. “Lord if you want us to go there make it happen.”

That Thursday morning my neurologist said he spoke with a pediatric cardiologist at Johns Hopkins who had a connection with one of the physicians on the HLHS team in Boston and would reach out to connect. Friday at 8am I received a call from the center to coordinate a transfer of care. God is good. After hearing about the severity of Cillian’s condition however, they wanted a second opinion. Sometimes certain abnormalities make the surgery not viable, in which case we would provide comfort care until he passes. Boston Children’s, being so advanced in this area, has the technology powerful enough to detect these abnormalities.

The reality of what she said didn’t hit me until later when I received the medical records of the interpretation of Cillian’s scans, which said he had HLHS but also a slew of other abnormalities of the heart. The report also said they didn’t have the imaging to rule out other abnormalities so there could be more. For the first time I was slammed with the possible reality of giving birth to my baby only to watch him pass. My heart shattered into a million pieces. As Sam and I talked about a game plan if that were the case, I kept thinking “I am not strong enough for this, I’m not ready to let him go, I love him too much. I’m strong, and can put up a fight, but I am not strong enough to surrender this.”

The weeping in that moment was deep. But I remembered the hymn that Sam and I chose to define our commitment to Christ and to each other. We agreed that in every high and low in life, we would sing this song together:

My hope is built on nothing less, then Jesus blood and righteousness

I dare not trust the sweetest frame, but wholly lean on Jesus name

When darkness veils his lovely face I rest on His unchanging grace

In every high and stormy gale, my anchor holds within the veil

His oath, His covenant, His blood supports me in the ‘whelming flood

When all around my soul gives way, He then is ALL my hope and stay

When he shall come with trumpet sound, oh may I then in Him be found

Dressed in His righteousness alone, faultless stand before the throne

On Christ the solid rock I stand, all other ground is sinking sand

All other ground is sinking sand

We sang these words during our marriage ceremony not knowing what was to come, and today just 5 months later we lean into them more than ever. Right now, we pray fiercely, and I welcome you to pray with us as well, that the Lord being the ultimate healer and great physician would make Cillian’s heart viable for surgery. But through these words I am reminded that our hope lies beyond the grave, through the truth and knowledge that even if we have to watch our sweet Cillian pass away, we will see him again. This news of salvation that only Christs brings is the only thing keeping me together. I write these words at 8am with tears running down my cheek and a heart that is so tender and raw. God doesn’t promise us a problem free life, but He does provide the ultimate strength and peace through them. As the pain of what is possibly to come speaks, I sing these words louder. And in between those moments of grief, you’ll find me humming those sweet words that seem to be my lighthouse in one of the darkest storms I have experienced yet in my life.

For now, we wait until Monday and pray earnestly that the Lord will reach down and make Cillian’s heart viable.

God Bless,

The Bish Family