Our Ebenezer

Sam and I spent the last day of 2022 reflecting on the year. We entered 2022 with such anticipation of what was to come. We were recently engaged, planning our wedding, and looking forward to our summer in Boston and settling down in Cleveland afterwards to start our new life together. When we found out we were pregnant that summer we were both a bit shocked. While we had to adjust some of our plans our life remained largely uninterrupted. We would still stay in Cleveland once I deliver in Spring of 2023, finish out school and graduate, then move to Boston over the summer before I start my job. The plan made perfect.

The funny thing about plans is we make them, then God laughs. Once we found out the diagnosis we suddenly had less than two months to arrange a major move. This was while I was in the thick of my semester and about to start finals, while Sam was continuing to work overtime to accrue PTO, and while the medical monitoring increased to 2-3 appointments a week due to the diagnosis. But God was with us and with the help of so many people and organizations, we were able to complete everything we needed to (I even did really well on my finals) and we were able make the move.

Sam and I decided not to buy each other gifts this year to save money for the next 12 months ahead filled with unknown expenses, but we agreed to stick to a tradition we started Christmas of 2021. At the time we were one month engaged and had to save money for the wedding, so again we decided not to exchange gifts. But at the very least we decided to buy ourselves matching PJ’s. It was simple and something every family did, but for us the meaning was special. Every year moving forward we promised to buy matching PJ’s for each other and our growing family as a reminder that every gift on top of that purchase was a blessing. It was a reminder to us of how much God has provided for us and our family. There would be years of bounty and years of drought. But that simple tradition stood as a reminder to us of how no matter what, God’s provision for us in our lives is ever-present.

So, there we were, December 31st 2022, seven months pregnant with nothing but an air mattress to sleep on, our three suitcases that contained most of our life, and of course our matching PJ’s. We talked about the great things that have happened this year and what we were looking forward to in the years to come despite the current situation. We talked about the different things we were grieving at the time. We talked about our fears. We talked about our hopes and dreams for us and Cillian. Then we watched the ball drop and welcomed in the challenging year ahead.

The day before we travelled, I was having significant amounts of anxiety. I was anxious about flying seven months pregnant, the details of our move not working out (there were tons of logistics), being able to finish out school, pregnancy complications arising, and needing to face the reality of what was to come once we were settled. I was speaking to my dad over the phone about this and he gave the best advice. One of the things I love most about my dad is that in every high and low I have had over the years he has never failed to point me to the only thing that matters most in this life: my relationship with Christ. At the time he was reading in Isaiah 37. In this passage King Hezekiah was the king of Judah (modern day Israel). At the time, the country Assyria was in conflict with Judah and surrounding countries. One by one, the Assyrian army knocked off each country until Judah was the last one standing. Now the Assyrians were brutal to the ones they conquered. To this day they were remarked in history as one of the most cruel and ruthless people when it came to battle. King Hezekiah received a letter from the Assyrians that said “do you not know of what we do? And you expect your God to deliver you? Where are the rulers now in the countries we have obliterated?” King Hezekiah was instantly burdened with grief and fear. With these emotions, he went to the Temple of the Lord and laid out the letter on the alter reciting a prayer: “Lord, you alone are God over all the kingdoms of the Earth. You have made the heavens and the Earth…Open your eyes Lord and listen to these words in the letter that ridicule You. Yes, the Assyrian kings have ruined all of these people and destroyed their gods. Lord deliver us from the Assyrians so that all the kingdoms of the Earth may know that you Lord are the only God.” The Lord responded saying “The Assyrian king will not enter the city of Judah or shoot an arrow here….I will defend this city and save it for the sake of my servant.” That night, the angel of the Lord put to death 185,000 Assyrians and they withdrew in realization of the power of God.

My dad told me this story and encouraged me to write down all of my anxieties then offer them like Hezekiah did up to the Lord. So in the hotel the night before our flight, I wrote down all of our fears on a piece of paper then Sam and I prayed for everything on the list. I instantly felt the weight lighten and my confidence renewed in what we had to do. We made it to Boston and everything worked out. This alone was a miracle since there were endless amounts of logistics that we had to sort before, during, and after the move.

I have recently been spending alot of time in Samuel and came across the passage about the Ebenezer stone. In this time Israel was in deep conflict with the Philistines. Because Israel had turned their backs to God and disobeyed His orders they were losing every battle resulting in thousands of men and children dying in the process including their greatest prophet Eli, whom Samuel was being taught under. Upon Eli’s death, Samuel stepped up as their leader and commanded they settled their score with God and ask for forgiveness. The very next battle they won, and the Philistines stopped invading Israel. Samuel wanted the people of Israel to remember God’s deliverance in their time of need so he took a stone and set it up calling it the “Ebenezer” which means, “thus far the Lord has helped us.”

Now that we are settled and waiting for Cillian’s arrival it seems like every day I walk the tightrope between fear leading to pits of grief and trust in the Lord. It’s not an easy walk. Sam and I have close to 3-4 appointments every week with different specialists that will be tending to Cillian throughout his recovery including a neurodevelopment team, lactation specialists, NICU specialists, CICU specialists, cardio thoractic surgeons, high risk OBGYN’s, and pediatric cardiologists. In every appointment, we are reminded of the reality that is to come in the next few weeks.

“Cillians heart condition is severe, even though as of right now there aren’t any additional defects”

“Even though he is a good candidate for surgery, there is still a high chance of complications during surgery that could lead to permanent impairment and disability.”

“It’s not a matter of ‘if’ there is a complication it’s a matter of ‘when.’ And the type of complication it is could lead to severe impairment, shortened lifespan, or permanent disability. We will just have to wait and see how Cillian.”

“Even though we are a specialized team, there is a chance the complications may be too severe, and he could pass.”

“We want to be honest with you and say what you are walking into is nothing short of traumatic.”

All of these things have been said to us, in many cases more than once. Every time it feels like a blow to the chest. Like Peter, I keep wanting to turn my head to the waves around me. I will be honest, there are some moments it is easier to do that than to trust in the Lord. But out of experience I have learned that leads to nothing but fear that spirals into a pit of grief. In reading the passages I have previously discussed, I am reminded that the God we serve is the same God that was with Samuel and the Philistines and King Hezekiah and the Judeans. Through these stories and witnessing our own journey we know this truth: the Lord will always help us in our darkest hour, just like he did with Hezekiah and again with Samuel. My biggest fear is that after all of this, that truth will fade to a memory. So I decided to kept the piece of paper we prayed over in the hotel the night before we left for Boston. This is the beginning of our Ebenezer stone, lest we forget how we have petitioned our prayers to the Lord and how He has uniquely answered them. Lest we forget how in our darkest hours the Lord renewed our strength with the truth only He has to offer.

Upon birth, Cillian will enter his first surgery which will last anywhere from 8-10 hours. This is by far the most complex surgery out of the three and most prone to complication. Since this will likely be my last blog post until birth, I have decided to create a prayer chain now that will guide Cillian and the surgeons through the operation on that day. At the top of each hour I welcome you to pray a simple prayer blessing the hands that will be touching Cillian. It doesn’t have to be structured or planned. Many family and friends are planning to put an alarm in their phone every hour to remind them, others are just planning on praying them all at once. God hears them all  but we welcome you to join in the prayer. This will be a continuation of our Ebenezer stone. This will be our petition to the Lord of our fear in the journey ahead. The odds are against us and our little Cillian, but we serve a God that is greater than those odds and the fear associated with them. This will serve as our remembrance that “thus far, the Lord has helped us.” And indeed He has. Every time fear wants to grasp me like a vice, I remember that it was the Lord who has made us being here even possible. Because I had SMA and already placed in a high risk clinic and we were able to catch his condition early and prepare. Because I was in law school and had a month break I was able to move to Boston right in the nick of time over winter break. Because Sam had accepted a remote position just a year before the diagnosis we were able to uproot our lives and move to the top medical center that will give Cillian the best shot at life. Because of these things we know that “thus far the Lord has helped us.” This prayer chain is a continuation of us building that stone.

Hour	Prayer
1	For God to be given the glory in all things, good or bad. For us to place our trust in the Great Physician and Healer.
2	For the cardio thoracic surgeons. We pray for wisdom, focus, and discretion to pour over them. We pray for God to guide their hands as they navigate Cillian’s little heart.
3	We pray for Cillian. We pray for his strength through surgery and his “little warrior” spirit to show.
4	We pray for the nursing team that will be helping in the surgery. Guide their hands and spirit.
5	We pray for the anesthesia team. Give them focus and heightened attention on their very important task.
6	We pray for the CICU team that will be receiving Cillian. Give them a spirit of comfort for Cillian and guide their decisions post-recovery should any complication arise.
7	We pray for Sam and Brynne. We pray for their strength as they enter the long road to recovery. Renew their spirit and help them to be strong for Cillian. Help them to make the right decisions should complications arise.
8	We pray for the other teams that will be coming in for recovery. The neurodev team, lactation team, cardiac nurses, and attendings in the step-down units. Guide their hands as they lay them on Cillian.
9	We pray for Cillians strength through recovery. May he be able to eat, gain weight, recover on time, and avoid complications should it be the Lords will.
10	We thank you Lord for your protection, providence, and promise of salvation. We pray that above all of this, your name will be glorified and revealed to those who come into contact with Cillian.

We encourage you to share this prayer chain to anyone you wish. We will let everyone know when Cillian is born and when he will enter surgery. We thank everyone who has supported the three of us on this side of the journey thus far. We have tried our best to express how comforted and supported we have felt, but no amount of words can truly express our gratitude. We love each and every one of you guys, and hope that you will grow closer to God through witnessing Cillian’s journey. That is our biggest prayer through it all 

God Bless,

The Bish Family