Turn Your Eyes - Our Trip to Boston Children's

Sam and I packed our things Saturday to head out for our early morning flight to Boston. As you can imagine, we didn’t get much sleep those two nights in waiting. Both of us had been running on auto pilot with the endless list of logistics we needed to figure out between insurance, school, record transfers, work, travel coordination, and setting up appointments. One of the hardest moments during that trip up was sitting down and writing out the list of questions we had for the doctor with both options: hospice care or surgery. We saw kids dance around the airport, mothers with infants strapped to them just there for the ride, and big happy families going on vacation. The world through our eyes suddenly looked different. Would we have that with Cillian? What is our life going to look like? We were truly in the dark. But with our hands clasped together, we knew we weren’t doing it alone.

As you know, song has been my friend as of late. Among them, Breath of Heaven and One Who Saves have been of great comfort. But even in singing those I was still overwhelmed by the grief of the situation. “Lord, give me a song to strengthen and renew, to be my light in what is to come.” Then a song I haven’t sung in over ten years came to mind. It goes like this:

Oh soul, are you weary and troubled? No light in the darkness you see?

There’s light for a look at the Savior, and life more abundant and free.

His word shall not fail you, He promised. Believe Him and all will be well.

Then go to a world that is dying, His perfect salvation to tell.

Turn your eyes upon Jesus, look full in His wonderful face!

And the things of this earth will grow strangely dim, in the light of his glory and grace.

This song is written by a woman named Helen Lemmel. She was an evangelical singer and writer that traveled the world preaching the good news about Jesus. She contracted a disease that took her eyesight and almost her life. Her husband died very shortly after her recovery. Alone and lost in the dark, she remembered her favorite picture drawn by a woman named Lilias Trotter. It’s a picture of a cold and bleak wooded winter. In the corner of the picture is single daffodil whose radiance and color fills the whole page. It’s facing the sun and full of life and light. In her memory of that picture she wrote those words. She remarked that in her darkest moment this picture reminded her to turn her spiritual eyes to Jesus to be her strength. I sang these words to myself over and over in every moment I felt like collapsing. I didn’t have the strength, but these words reminded me of the Savior I leaned on who did, and that was enough to pull me out of the darkness even if moments later I found myself there again.

We arrived to the hospital at 6am on Monday morning. They first took an ultrasound to get anatomy measurements then we went to the echocardiogram shortly after. In between appointments Sam and I hummed Turn Your Eyes, prayed, and Sam was faithful in making me laugh to remember the joy we have with each other. Shortly after the echo the doctor wanted to pull us in to a counseling room with a social worker, nurse practitioner, and himself. “So we are confirming what Cleveland Clinic found out, it is HLHS with almost no left ventricle. The good news is that as of right now there are no defects that would rule him out of surgery.” My heart lifted and I smiled for what felt like the first time. Shortly after he went into the list of risks associated with this condition. They include:

• 10% chance of developing an additional defect between now and when I give birth that would rule him out of surgery

• 70% success rate of the first surgery, 30% chance he will not make it through

• 90% success rate of the second and third surgeries

• After 20 years old the mortality rate increases to more than 50%

• Significant risk for neurocognitive deficits and other permanent disability, though many have this surgery and have none whatsoever. It just depends on how successful the first surgery goes

• Expect to be living in the NICU and CICU for at least a year

• The outcome of how normal Cillian will be depends on the complications that arise between now and when I give birth, and complications that arise during the first surgery.

“You are walking into a lot of unknowns and a lot of risks. Many pregnancies are like preparing for a 5k. You are prepping for a 2-3 year long-distance marathon filled with anxiety and grief, but Boston is here to support you in that journey. Despite this significant risk, we want you to know there is hope on the other side. Many children have these operations and a bright, physically active, otherwise normal kids.” We truly felt like Boston’s would truly be the best place to give Cillian the support he needed that would give him a chance at this normal life. They had such a comprehensive program that included breastfeeding and neurocognitive specialists, advanced cardiac intensive unit care (CICU) nursing staff, a social worker to help provide resources for Sam and I when we move, and the top pediatric cardio thoracic surgeons in the world operating on little Cillian’s heart.

Sam and I walked in praying for a chance to fight for his life. As of right now we were given just that. So, we are adjusting our plans to move to Boston in the first week of January. In the meantime, we ask you join us in daily prayers for Cillian to not develop any defects, for me to carry to term, and for Sam and I to get all the planning done in time for the move. I want to take the time to thank everyone who has reached out via text, phone call, Face Book messenger, and Instagram. I know I haven’t responded to most, but Sam and I have read those messages together which have supported us in some of our darkest times.

I’ll leave you with the quote that Lillias Trotter put with that picture she drew, which inspired the one song that has been my strength:

“Take the very hardest thing in your life – the place of difficulty, outward or inward, and expect God to triumph gloriously in that very spot. Just there He can bring your soul into blossom.”

God bless,

The Bish Family