October 25th, 2012 - the guilt
Support is so important when living through a situation like we did. We were sent food by friends and family, encouraged with kind words, and offered prayers for Matilda that kept her alive. People always meant well. But, what people said did not always make me feel happy.
On this day, I expressed over Facebook that the doctors had given up hope that the treatment for Matilda's presumed diagnosis of neonatal hemochromatosis would work. We were in the waiting game. I needed kind words and I got a fair number. But, I also felt the frustrations and disappointments that people genuinely had over the situation. And, before I knew it, I was the one supporting everyone else. Trying to convince people that our doctors were qualified. That Matilda was in good hands. That her liver really was that far gone. If people could have seen Matilda, then they would have known. She was sick, really sick.
It was reported that some NH survivors recovered after months of treatment. They had originally told us that we could see results within 2 weeks to 2 months. We were still in that range and the liver is a remarkably plastic organ, but, like the doctors, we were preparing as if the treatment wouldn't work. We received words of encouragement and support - urging us to not give up, to fight for Matilda, to fight for ourselves. But, all I felt in response was guilt. Guilt that I had given up on her liver. Guilt that I did not believe it could recover. I believed Matilda's doctors. They were there with us. We had no family. No friends. But, we had doctors and nurses who had seen this before. My trust was with them.
I also received emails and voicemails pleading us to move Matilda to a new hospital. Somewhere else could surely do something different. I was sent medical journal studies of this group doing that. And, others who found success in whatever. It was all said in kindness and love. In support and encouragement. But, all it did was pile up on my shoulders and inflate my guilt.
I was Matilda's mother. Why was I not doing anything?
But, the thing is, I was. I was trusting in the people who knew and loved Matilda firsthand. I am by no means suggesting that people keep their comments to themselves. One of the true gifts that I learned from this was that saying something really does make a difference in a person's day. It did for me, on most days, anyway. The people who commented often during this cloudy time in my life will always hold such a special place in my heart. Their kindness will not be forgotten. Even if sometimes what they said caused me guilt. It was all part of the process.
