I know I should be posting my second lesson on Hope right now. But I woke up Saturday morning with this in my head. A post Jesse and I both have tried to write many times but it was either too painful or too complex. I feel God organized it for me this weekend and I quickly copied it here. Once I started to think about it, I realized this too is a post on hope. Consider it a prequel. My reason for sharing is to give you a glimpse of our lives with the perspective of hope and the battle we fought against those without it.
As much of our story we have shared with you, there is equally as much that we haven’t. We hope to be able to share one day but for now there is still so much we must leave untold. Recently we were introduced to another family fighting for their daughter’s life with dialysis. It is gut-wrenching for us to read her updates. But one piece of her story breaks our hearts again deeply. It is the knowledge that her doctors want to fight for her life. They told her parents that as long as she is fighting, they will too.
This is not our story. Jesse and I spent a majority of Josiah’s life fighting the doctors for his life.
Our son was a fighter. We’ve heard over and over how little white male babies don’t survive 23 days. It’s amazing he even came back after being born dead. I was at the doctor just this week and one of the doctors told me, “I’m just amazed he made it so long. That doesn’t happen. What a strong little boy.” Even though Josiah was trying hard, we knew we were fighting an uphill battle. We knew because the doctors made it overly clear to us. In the name of not wanting to give us false hope, they repeatedly beat us down with their words of hopelessness.
“Josiah will die.” “Josiah will not come home with you.” “Josiah has 0% chance of surviving.” It’s as if they thought we were young and naïve. That we had no idea what was happening. I think they expected us to be reacting differently and because our reactions were met with God’s strength they assumed we had no idea what we were really facing. They felt the need to reiterate these words to us every time we spoke with them.
After telling us the most painful words any parent will ever hear about their child, they also told us the most ridiculous. “There is a good chance he will have some sort of brain damage. Is that what you want for him?” Josiah was a perfectly healthy baby. But due to the amount of time without oxygen he suffered right before he was delivered, it would be expected that he might have some kind of developmental delay. I have a new heart for parents with special needs children. To know your child was dealt a hand they did not ask for is heartbreaking. The thing is, even though the doctors thought Josiah might have suffered brain damage, they couldn’t say for sure. The neurologist couldn’t tell us Josiah had brain damage. He showed no damage on his first ultrasounds and had working brain waves. But because there was even a possibility he might have some permanent damage, some questioned the value of his life. Wow. We were being pushed to pull the plug because of a possibility. I could write a whole post on this topic alone but for now I will end with this. In the eyes of God, my son’s life had value.
Next the most ignorant thing was said, “I wouldn’t do this to my own child.” I guarantee if you were faced with your dying child in front of you, letting them go wouldn’t be so black and white. Are you kidding me? Good parents instinctively fight for their kids. When we asked one doctor why they said this, he responded, “Being in the medical field I’ve seen what the quality of life looks like for a baby in Josiah’s condition.” Basically they were telling us that they would let their child die biased on a possibility and their view of quality of life. Unreal.
Lastly the most hurtful thing was said, “If you loved him, you’d let him go.” **First I must clarify something for other bereaved families reading this. If you made the decision to “pull the plug” on your loved one I am not telling you, you were in the wrong. I believe every case is so different. But in our case we had a son fighting for his life. Who wanted to be here. Who opened his eyes when we talked and turned his head to my voice when I walked in the room. The son who held my hand in the tight grip of his fingers. He showed brain activity and was still “with us.” This is our story and may be very different from yours. If you were left with the horrific decision of letting them go, my heart goes out to you. I am so sorry. It is the absolute worst situation a parent could ever be in. In anguish I prayed for God to take the cup from me. To not make me choose the number of my son’s days. Oh my heart breaks for those in this situation!**
They tried to package “letting him go” into this beautiful gift of mercy. Mercy Killing (my words- not theirs) I won’t go in to detail of the ways they offered this to us. But I will share one way with you because it was the most painful thing anyone has ever said to me. It was a stab to my already wounded heart. I was told that one way for “letting him go” would be to hold him. Josiah was just over a week old and I had never held him. I’ve shared with you how I dreamed of the moment he would be placed on my chest. It’s what got me through 9 months of a tough pregnancy. But I never had that moment. For the first 4 days of his life we weren’t even allowed to touch him. They didn’t want to overstimulate him. My arms ACHED to hold him. It was absolute torture to not be able to do so. One day a doctor and nurse came and sat down with us. “One of your options is to hold Josiah. It will probably do him in but he would be in your arms. I’d like you to hold him today.” I almost threw up. This was one of the moments I saw Jesse angry. “All she has wanted to do since he was born is hold her son and you offer it to her as a way to kill him?!”
In the hospital we knew what it felt to be in the will of God. Its amazing God chose this situation to show himself to us. I’m so glad he did. I’ve never needed to feel his presence more than I did then. We knew God was the reason Josiah was alive and beating the odds. We saw miracles happen before our eyes. Felt his presence and that sense of peace I keep telling you about. We fell in an all-consuming love with God in the midst of the darkest time in our lives. We also fell in love with each other again. We became one spiritually. God bound us together in unity. I’ve shared before how we knew what each other was thinking without saying a word. Our thoughts were in sync. This is truly amazing to me. For example; My husband can spot a single deer in a grove of trees while driving 85 down the highway but if I was to ask him to “check out those shoes” he’d be scanning the room for minutes never knowing what shoes I was talking about. Our minds are SO opposite. But God brought us together in Him.
This is how we knew we were in the will of God. We never questioned any decisions we made. We felt God telling us to fight along side of Josiah. We also knew he was working all this for a bigger plan. That when we couldn’t see the what and the why we were to fight for Josiah even if others were in opposition. We knew the odds but we knew our big God. And he was telling us to wait on him.
They called an ethics committee on us. There were doctors who were “uncomfortable” pursuing additional treatment for Josiah as they didn’t want to prolong the inevitable any more. An ethics committee is fairly rare and is called when the staff and the family differ on treatment. But the way this was presented to us was that we would be fighting for “rights” to Josiah’s treatment. The fellow that told this to us was wrong but for days we thought we had to prepare for “custody” of his care. This is where I’m at a loss for words. I can’t even describe the additional torment this brought upon us. The night before the committee meeting our favorite nurse explained what it really was and that it in no way was a legal battle. It lightened the burden but the damage was already done to us. I previously shared with you the letter Jesse wrote in preparation for this meeting. It was a beautiful tribute to the love we have for Josiah and our faith in an almighty God. I’ve never been more proud of my husband.
It was at this meeting we met a beautiful person known as the bereavement coordinator. For the past three weeks the staff had wanted us to meet with her. “She’ll help you with the process of “letting him go.” But since they packaged the idea of meeting her with letting him go, the idea of meeting her left us sick to our stomachs. We dreaded meeting her. I now know she was one of the most beautiful people in that hospital. As we sat down at the meeting I was scared to death. I didn’t even think I could speak. But she looked at me with an understanding smile and the first thing she said was “Mom, tell me about Josiah.” I lost it. This beautiful person looked me in the eye and spoke of my son as a person. A person worth telling her about. The little blonde haired, blue eyed boy that loved when I sang to him. The peaceful little soul who was stitched into my very heart. She wanted to know about him. The meeting offered us a chance to share our faith and love for our son. The rest of the meeting went better than we expected but again, the damage was already done to us.
We were so weary from fighting the battle for Josiah’s life we still can’t believe we had to fight the battle of the doctors too. These men and women so rich in knowledge were so hardened towards life. I know they have seen more babies die than I. But I also know they have never seen their own baby die. The doctor, who we assume called the ethics meeting, tried to compare “letting Josiah go” to letting his 89 year old father go. I’m pretty sure I saw Jesse’s jaw drop out of the corner of my eye when he said this. Unbelievable. During our time in the hospital I shared with you the spiritual battle we felt swirling around us. Often times we felt Satan attacking us from all sides. We dreaded (for lack of a stronger word) walking into the NICU each day. Not because we were facing the possibility of Josiah’s death but because we didn’t want to face the doctors. We were able to stand strong because it was clear to us the Doctors didn’t have our perspective of hope. They didn’t know the anchor that held us secure and steadfast. They didn’t know our God. Doctors have such great power to do good. They equally have as much power to destroy. When a parent is facing their child’s death, they are in the most vulnerable place. We felt so alone. We expected to have compassionate doctors to walk us through the horror but instead we had a medical team adding salt to our wounds. We didn’t need the doctors to give us false hope but we needed them to give us confidence that they would fight for our son. We honestly felt that if we weren’t there for Josiah at all times, and a moment came for a life-saving decision they wouldn’t have tried to save him.
We feared this because of many examples but here is the most outstanding one. On the morning Josiah suffered a perforated bowel (extremely painful and deadly within hours) the doctors wanted it to take him. Thank God we were there. They explained the situation and how surgery could be done but they didn’t recommend it. Surgery will only prolong his life. Let this take him. Our answer was, “No. We would like to consult the surgeon.” We argued and finally they agreed to call the surgeon in. This man will never know the depth of our gratitude. He was a man with a hope perspective. Surgeons are busy and the simple fact that he was always available immediately when we needed him was orchestrated by God. He came and looked at Josiah, and without question wanted to do surgery. “My team is in the hallway and we’ll get ready to do it now.” This is when the NICU doctors floored us by asking the surgeon to leave the NICU so they could talk with us. A doctor with his arms crossed in front of his chest glared down at us and asked us not to do the surgery. He brought in a palliative care doctor to talk about choosing this to let him go. We couldn’t believe what was happening.
To us the choices were easy. We were choosing life. If God opened a door that was life-giving, we would walk through it. How could we stand by and not do a procedure that could give life? If he died in surgery we were okay with that because we knew we had given him every chance at life. We couldn’t imagine the regret of wondering, “What if we had tried surgery?” We asked them to call the surgeon back in and surgery happened immediately. We sat on the other side of the curtain so that if Josiah took a turn for the worst we would be there to hold him as he went. We did this each time he was in surgery. Talk about torture. Sitting and hearing a surgery on your son taking place. Waiting for an alarm to go off and people yelling for you to rush in. This is why we suffer from mild PTSD. The amount of intense stress we have endured is simply too overwhelming.
Immediately afterwards the surgeon walked in and told us he was glad we chose surgery. Josiah had a complete perforation and would have suffered extreme pain and died. This man was our hero. Josiah needed several surgeries and each time the doctors told us, “Good luck finding a surgeon to do this.” We’d ask and the surgeon would immediately respond with “Why wouldn’t we?” Dialysis was a constant battle as it was the only thing that would save Josiah’s life. Without all the explanation, the doctors were hesitant to try. We ended up having a conference call with the surgeon and he made it all seem so clear. In his opinion why wouldn’t they try when it was possible it would work? It is evident that God is using this doctor to give life each day. What a beautiful gift. He told us that as long as someone has brain waves he would try to save them. He would try to save them regardless of their future potential. Thank you Mr. Surgeon.
The surgeon wasn’t the only one who offered a glimmer of hope. There were a few other gems. Several residents would come to us with hushed breath and say “Fight for your son. He is still here.” Another tried to prepare us on the first day we arrived that some of the doctors would be after us to give up. This person encouraged us to fight for our son and do what we knew was right in our own hearts. That we would know what was best. Then there were the nurses that loved on our son. Our favorite unfortunately did not begin taking care of him until close to the end. But the time we had with her, she was exactly what we needed. She loved him as her own. Something we had not felt someone do. Many of the nurses lovingly cared for him. We know they did. But she “loved” him in a way that was different. She was a gift to a momma’s heart. A gift to my son.
♥
In lesson 1, I described how knowing God gave us the strength to face each battle. Our knowledge of God made our decisions easy. We knew God values every life. We knew that as long as we were in His will, He was fighting for us. He anchored our soul to him and our hope resided there. If our hope was in the doctors and their wisdom then we would have been destroyed. Hope changes things. When your hope is in the right place, it will lighten the darkest of places. If you do not have Jesus you do not know hope. The doctors did not have a Jesus that could heal at a moment’s notice, a Jesus that could raise the dead to life. This is where our world views clashed.
We have no idea why we had to fight the battle on two fronts. It was painful. It still is. But I want to share this with you. With God there is always time for a miracle. With God there is always hope. If you find yourself in a position such as ours, listen to God’s voice not the voice of those in a high position. I hurt to think of the parents not anchored to a steady rock. That their decision may have been influenced because doctors told them there might be brain damage or made them question the quality of their child’s life. Know God, know His heart, then make the best decision for your situation. We have no regrets and it has given us a freedom to grieve and heal in a healthy way. In the end the doctors were right that Josiah would not survive. But God gave us the gift of holding our son as he peacefully passed into eternity at a time ordained by Him. I’m so thankful God answered my prayers for mercy and loved us by showing us something beautiful.
May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13
* I want you to know that I have not exaggerated the situation or the conversations. Our families can vouch for this. I remember what the Doctors said nearly word for word. Their words pierced my soul. However, I do not hold bitterness towards them and would love the chance to offer them the hope residing in us. Oh what mighty things they could do if only they knew our God!
* I must also say that surgery and dialysis was done even though they did not recommend it at times. I’m so glad they did. We were told a yeast infection in the dialysis site had never been cleared before. Well God proved to them it could be. Because of our fight for Josiah’s life the doctors found a new success case that will hopefully influence their treatment of future dialysis cases.
Josiah!