February 13, 2003

If I wrote this 19 years ago today, this is what I would have written...

The last couple of weeks have been difficult. Isaac had his second heart surgery, and, thankfully, he didn’t have to have open-heart surgery. The surgery went well, and he had to recover for a couple of days in the regular ICU, which was a wide-open room with other ICU patients (I saw some scary things there).

Once Isaac was moved back to the NICU, it seemed as if he was doing better. But things quickly changed once he developed a blood infection. We were given hope before his surgery that we might be able to take Isaac home in March, but now his body is starting to shut down, and that hope has shattered into a million pieces. Septic shock has attacked his already weak body. I can see that the fighting strength he once had is now gone.

When the phone rang late last night, I knew in my heart what was coming. By the way, I hate when the phone rings now. I always suspect someone is calling to give me bad news about Isaac. After answering the phone, a nurse told us to come back to the hospital because Isaac was doing much worse than earlier that day when we visited him. I asked my dad and stepmom to stay overnight with Michael, Kyle, and Emma so Frank and I could head back to the hospital. The tears wouldn't stop falling as we made the trek back to Seattle, and I called my sister, asking her to meet us there.

We parked the car and made our way into the bright-lighted hospital, down the elevator, through the doors of the NICU, and into Isaac’s room, just like we had done every day since he was transferred to Children’s Hospital when he was two weeks old. As we walked into his room, I noticed the window behind his crib and remembered that it was nighttime. The room had a somber feel because there was only a single light on in his room. I could feel the darkness of dread filling my heart as I gazed upon my very sick baby.

It was quiet in the room other than the noise from the machines keeping Isaac alive. It felt like the machines were mocking me, reminding me of the day the doctor told me that Isaac had a 0% chance of survival when I was 19 weeks pregnant. But what the doctors told me then didn't end up being accurate. Isaac did live, surprising everyone. He is my little miracle, who has fought so hard to survive a rare disease. However, right now, at this moment, I am having a hard time understanding why God would bring Isaac through so many obstacles, except for this one. Why did God allow Isaac to get an infection after surgery? Didn't the doctors tell me a few weeks ago that we would bring him home!? My faith challenged me to continue hoping for healing, but my discernment told me something else. Healing for Isaac will look different this time.

After a few hours of praying for another miracle while feeling the intensity of the ache in my empty arms while in Isaac's room, I started to feel incredibly tired from the weight of it all. Frank suggested I try to get some sleep upstairs in a room designated for parents, which we had slept in before a few times. I took his advice, left Isaac’s room, grabbed a key to a parent's room, and quickly fell asleep on the bed. I was exhausted.

The phone rang by the bed an hour or two later, startling me awake. I felt groggy but immediately got out of bed because Frank said I needed to come back to Isaac’s room because we had a decision to make. Isaac continued to worsen. Once I was back in Isaac’s room, the doctor told us that his blood pressure was so low he could go into cardiac arrest at any moment. His kidneys completely stopped working and his other organs were failing. His pic line fell out because of all the swelling due to congestive heart failure, and it couldn’t be reinserted to give him needed meds. The only thing keeping him alive was a machine that helped him breathe. Isaac didn’t look good either. He wouldn’t even open his eyes and look at me. His body was dying right before my eyes.

It was time for a decision about removing life support from Isaac. The doctors had already asked us to make this decision a couple of times in the past week. We had said no before, but this time was different - there was a finality to it. I know my faith is in God and not in machines anyway, but I still felt agony over the decision. How can a parent decide something like this? How can they ask a mother to take away the thing keeping her son alive? The doctor left the room, and Frank and I held one another. After a bit, Frank told me I was the one who needed to decide because he knew I would be the one to carry the burden of it forever. But I didn’t want to make the decision! I wanted someone else to. However, the question in my heart was, “do you want Isaac to spend his last moments of life on earth laying in a plastic, medical crib, or do you want him to spend his last moments in your arms, Joy?”

The agony I felt was suffocating, so much so that I left the room and ran to the bathroom, trying to find my breath and be alone for a few minutes. Not caring that I was in a hospital bathroom, I dropped to my knees on the cold, concrete floor, crying out to God. I've never felt such anguish before, and I demanded that God answer a prayer for me so that I knew what the right decision was. I wanted to make sure whatever decision I made, I would not have regrets. God knew me, and He knew what was coming. He knew what would get my attention, and I demanded an answer from Him from a place of utter desperation and surrender. For whatever reason, a lost baby blanket came to mind in that difficult moment while I sobbed on a bathroom floor. And it was there I prayed very specifically, “God, if I am supposed to remove life support from my son, then You must return the lost blanket to me.”

You see, a few weeks ago, before Isaac’s surgery, a blanket that my stepmom made for Isaac went missing at the hospital. The blanket was one from home that we kept at the hospital. The nurses told me that it likely went through the hospital laundry, but it never showed up in the blanket closets. Every day, I looked for that blanket, but I never found it. I thought it was lost forever and had just shared with Frank a day or two ago that it made me sad knowing the blanket was gone because it was the one I wanted Isaac to be buried with. I knew his death was coming, and the blanket was important. And now, in this desperate moment, I wanted God to give me that blanket.

I got up off the bathroom floor, washed my face off, and walked back to the NICU. After going through the main doors, I cautiously walked over to the first blanket closet and opened it up. I scanned all the blankets and felt relief. The lost blanket wasn’t there! I went to the second closet and opened its doors. I started scanning from the top shelf and as I made my way down, I saw the missing blanket right at my eye level. “No! I can’t do it, God!” But I kept staring at that blanket as I processed what just happened. The blanket wasn’t folded like all the other hospital blankets, and it appeared as if it had just been tossed in the closet. Whoa. That was the quickest answer to a prayer I have ever gotten from God! And now I knew what I had to do…

I walked into Isaac’s room, blanket in hand, and told Frank what I just experienced. And even though I didn’t want to decide to remove life support, I knew it was the right thing, for both Isaac and me. Frank told the nurse of our decision, and then we were told what to expect. I stood in a daze signing DNR paperwork, which felt unreal to sign my name on a piece of paper stating that it was okay for the doctors not to intervene to save my son once the machines were off. As the dawn of the morning filtered light through the room window, one of the nurses asked us if we wanted music playing, probably so the silence didn’t feel so uncomfortable after hearing the whirring of the ventilator for so long. I asked her to play worship music by Michael W. Smith since his music always helps me draw close to God. Then nurses placed Isaac in my arms, removed all the tubes, and turned off the machines.

Finally, I got to hold my son again, and my empty arms felt full for the first time in weeks. What a sweet and heartbreaking moment! As I looked over Isaac memorizing every part of him, I realized one of the things I feared most wasn’t happening. Isaac didn’t struggle to breathe. His eyes weren’t staring at me wondering why his mother didn't try to save him. There was no struggle. He never even opened his eyes. He simply laid in my arms like a peaceful baby snuggled up with his mother. I relished his skin next to mine, all while feeling the tangible Presence of God in the room. I have never felt God so closely as I did at this moment. After holding Isaac a couple of minutes, I passed him over to Frank so he could say goodbye to our son. And it was there, in his daddy’s arms, where Isaac left his earthly life to his eternal life in the Father’s arms.

After a few minutes, the nurses left us alone to process through our grief. Frank and I held Isaac for a long time as we cried over the loss of our little boy. We then did some normal things like bathe him and dress him ourselves for the first and last time. Some friends visited and took final photographs for us. Our pastor came, sat in the rocking chair and held him. So many moments of this morning will be forever etched on my heart.

Frank left the hospital earlier than I did so he could be home for our older kids. I couldn’t walk away from Isaac just yet. I stayed and waited for my mom and stepdad to arrive from Eastern WA so they could say their goodbyes. I managed to get some food in me and even tried to sleep again. I’d been up all night except for the little sleep I got in the middle of the night. I felt numb as I fell to sleep back in my parent room; however, it was interrupted with horrible, frightening nightmares that woke me up in a panic. I called a friend who talked and prayed with me to help me find some peace. Once I was calm, I went back to Isaac’s room where I sat staring at him, wondering what life without him was going to be like. And then, suddenly, I had no desire to be in the room with him anymore. I knew he wasn’t really there.

When my mom and stepdad came and had their last moments with Isaac, I was finally ready to leave. I had just spent the last ten weeks of my life in the hospital, and now it was time to go. It was time to start my journey as a grieving mother. It was time to let go and face an unbearable heartache. It was time to stare grief in the eyes, struggle through its reality, and fight hard so it didn’t overcome me. It was time to walk away with confidence, knowing that one day I will see my son again. And when I do see him, Isaac will tell me that he knew from the very beginning of his life just how much his mother loved him.