At A Loss for Words

I opened up my laptop today to start writing. I haven’t in quite a while, so I wanted to get words to a page of everything God has been laying on my heart these last few weeks. I was looking at all of the ideas I have quickly jotted down in the last couple of months, to see if there was something I could stem from. At the end of November, I started this blog “At A Loss for Words.” Ironically, when I opened the document, nothing appeared but the blank screen.

In true transparency, I have sat here staring at the blank, white screen for a few minutes, completely unsure of where to even begin. The events happening around me, in the world, to my family and in my mind, have me feeling like the empty piece of paper on my computer screen... totally blank with no thoughts gathered. I have no words to express my feelings, no words to communicate my heart and no words to pray. This long, hard life has left me at a loss for words, for what seems like the millionth time.

At the end of October 2021, we received news that we were going to have to travel for our oldest daughter’s (Aria’s) medical care…again. This time, instead of a bone marrow transplant, she would take part in a CAR-T trial. Her cells were collected the second week of November, and by the end of that month, we found ourselves waiting for the call to return to the hospital far away from our home. Then, her own, engineered cells would be replaced back into her small body and we would remain close to the hospital for 6 weeks.

During the waiting, our family was filled with anxieties. Not only did we have to realign and pack up our lives, we were unsure if we were going to be home for the holiday season, all while battling the fears of cancer relapse.

The time came for us to make the trip to Philadelphia, but nothing could have prepared us for what these last few weeks have brought upon our family.

The first week was full of chemotherapy, and visits into the city every day for meetings with doctors. Then, the day of actually receiving her new cells arrived.

The morning of “T-Cell Day” went smoothly, we returned back to our temporary home and went on with the day. That evening, the nightmare began. We rushed back to the hospital, knowing full well that we had no idea when our family of five would all be together again. Three weeks later, we were still wondering and waiting.

Aria progressively got worse as her body began to fight. She had a fever over 104 degrees for almost a week. Next, her blood pressure took a huge hit. Then, suddenly, our sweet girl began to breathe heavily. Scared, afraid, and moments before being put on a ventilator Aria lost her sight and with tears in her eyes, and a quiver in her voice said to my husband, “Daddy, I can not see.”

Aria remained on the ventilator for a long and grueling 4 days. When she had her breathing tube removed, we expected everything to go back to normal... but it didn’t. She had to remain on respiratory assistance and still had inflammation in her head.

Before Cytokine Release Syndrome and shock, our fun and smart five year old was a true “chatty Cathy.” This was not the case, and I found myself talking to a child who couldn’t respond back to me. Her beautiful eyes would glaze over as she looked at me. As the days went on, her mind improved, however, the doctors warned us that many children with inflammation in the brain sometimes struggle to find the words to say. There have been too many times I can see in Aria’s eyes that she is at a loss for words.

The difficult days of fighting back tears and reassuring my screaming child, have left me at a loss for words. There are times that I can’t even believe that the events of the day actually happened, that we endured what we have, and that we do not know if a light at the end of the tunnel exists. Despite our good news of remission, we don’t know what the future holds. Every single night and many moments in between I find myself saying exactly what Aria said to her Daddy, to my Heavenly Father. “Jesus, I can not see.”

During these months of trial, I have found myself beginning a prayer, and having no words to finish it. Many times it consists of: “Hey God, it’s me again, and I have no idea what to say but please help me see.”

Life can leave us feeling blind. It is scary. Terrible things happen…even to good people. You may not find yourself faced with childhood cancer, but I know that you are facing another giant. The turmoil in the world that causes unrest, sickness, immorality, disappointments, regrets, and heartbreak can leave us feeling blind. I am certain that you too have found yourself in prayer, unable to see what good God might create from the disasters in life; at a total loss for words.

I do not have the answers for these difficult times, or how my family has persevered through the first seven weeks of 2022. As we move forward, I reflect back on everything the Lord has taught me and here I share it with you (and remind myself too).

• Say His Name. Some days all I could do was start a prayer. There were no words to finish the prayer, so I would start it knowing that God already knew exactly what I needed. It was a great reminder to me of refocusing on who was with me, who was in control, and who would help me through whatever was to come.

“In my distress I called to the LORD; I cried to my God for help. From his temple he heard my voice; my cry came before him, into his ears.” Psalm 18:6

• Welcome Jesus Into Your Space. If you are like me, you may find yourself stuck in a situation or place you don’t want to be in. Maybe you too have spent weeks in the hospital, maybe you find yourself in a job you don’t like, maybe your marriage has failed and now your home is filled with dismay, maybe your longing for companionship but are still living alone, or maybe you're living alone because you lost someone so special to you. Wherever you find yourself, no matter how bad the situation may be, invite Jesus there. There were many days we would pray that the Holy Spirit would fill Aria's hospital room. This provided peace, and an overwhelming feeling that only Jesus filled our lives. Don’t hesitate to give it a try.

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God’s will.” Romans 8:26-27

• Sing! My car rides to and from the hospital were some of the most eye opening experiences I had during the weeks Aria was inpatient. There are amazing songs of hope, love and comfort found on Christian radio. When you do not know what to pray, the lyrics can carry you through. You do not have to even open your mouth, listening is just as helpful and can fill your heart.

“But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble.” Psalm 59:16

• Show Yourself Grace. Throughout the Bible, we are shown how gracious Jesus can be to us, and how we should show others grace. Yet, we often forget to show that grace to ourselves. Give yourself grace! Be kind to yourself. God’s response to you is always grace and kindness.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. “2 Corinthians 12:9

• Live in Silent Prayer. It is okay to not finish a prayer. The comfort of not ending a prayer can leave you feeling and remembering that Jesus is with you. Start your morning with talking to Jesus, and don’t let it stop. Talk to Him all day long…about anything! For me, this was such a comfort. Many times I would start my day with “Dear Jesus, help my family today…” and that was it. I would continue throughout the day and when something came I would add it to my prayer, like talking to a friend. Jesus never leaves you, and sometimes living each today in an unfinished prayer is what you need to get through the difficult moments of life.

“Rejoice in hope, be patient in tribulation, be constant in prayer.” Romans 12:12

My friend, whatever you are enduring, you are not alone. Jesus will turn your inability to see what is happening, by transforming your blank word document. And, while I am still waiting on my answer (and you might be waiting too), peace has filled me. Give it a try, I know it will work for you too. All you have to do is cry out, welcome Him, and spend silent time with the one who knows your lost words.