I believe that God has the utmost control of my life and the events of this world. I also believe that He gives us a choice to let Him completely be in control of our lives, or to try and hang on to the things we think we can control. He teaches me lessons sometimes daily about letting Him lead. Things always work out better when I have faith in His control instead of my own.
I have been blessed in the last few weeks to witness first hand some of the miracles that can happen when we just trust and let Him drive. About a month ago I was called to go to the hospital for 3 different cases in one week. I was actually at the hospital 4 times that week. This is very unusual to be called that often, since months had went by since my last call. It wasn't easy. It is very emotionally draining to go back there. God always provides the strength to get through, but it does take a toll. However this time 2 of the stories had happy endings! That is not normal for what I am doing. It was such a special blessing and lesson for me. Their stories are so inspiring I wanted to share them with you.
First up Jacob. I met Jacob and his parents when I was at the hospital to take pictures of another patient, Autumn, who I will talk more about in a second. When I met Jacob he was 2 months old, had already been through heart surgery, and was back in the hospital. He wasn't doing well. The coordinator at the hospital asked me to go and see them. She said things didn't look good for Jacob. When I got to the room, I met his parents and grandparents. They were very shaken up, upset and worried for their baby. I knew by the looks on their faces what they were feeling. I have felt those feelings before. They didn't want to do pictures that day, but I told them I would come back anytime to do them. That was Saturday. Then I got a text from Jacob's mom on Tuesday or Wednesday asking if I could come back to do his pictures because he was going home the next day!! I was shocked. I didn't know what had happened. She told me Jacob had drastically improved and they were sending him home. This was nothing short of a miracle. It was so amazing and refreshing to go and take pictures of him, knowing he was going home. He was mad and didn't like being messed with, and it was awesome!
Then there's Autumn. I met Autumn after the coordinator called me and asked for me to meet with the parents. I don't usually get a lot of details about the patient until I get there. I never really know what I am getting into. This case was the same. All I knew was that Autumn was 2, had been in the hospital for some time and that the doctors had recommended the parents withdrawal care. I spoke Autumn's mom on the phone and then I went just to meet with her. We talked about her options and pictures that she wanted to take. We discussed options of taking pictures before or after Autumn passed. Her mother shared her story with me. I will share the details of the story that Diane wrote for this post later, but here's what I gathered from my time with her. Autumn had some medical issues when she was born and had surgery. She had since been mostly ok, with a few issues here and there; but she was a mostly healthy normal 2 year old. Then she got a virus which had done so much damage to her lungs the doctors said it was irreversible. She was not conscious, and had maxed out the things they could do for life support. Her mom shared that the doctors continued to say that things would not change for Autumn, they recommended that her parents withdraw care. However her parents had so much faith in God, they were not ready to give up on Autumn yet. They continued to push the doctors to try new things and they never lost hope. I have to be completely candid about my feelings the day I went to take pictures of Autumn. It was hard, but it the midst of so much pain her parents had been through, we had a good time. We enjoyed taking pictures of things they do normally with her. They read her books, fixed her hair and did handprints with her. The best part was when her mother held her. This was not an easy task because she was connected to many different wires and tubes and monitors. The nurses we so accommodating and helpful. They insisted we could do it and that she could hold her baby girl. This sweet mama had not actually held her baby in months. It was an extremely emotional moment for all of us. I am so blessed I was there to capture it.
After I left I had so many emotions and feelings. I was so grateful to be there and capture such special moments. But there was a part of me that wondered if not withdrawing support was the right decision. I wondered if Autumn was suffering longer than she needed to. Don't get me wrong, I believe in miracles and believe God can do anything; and I prayed for Autumn fervently. But in that situation with the doctors saying over and over that it was impossible for her to get better, it seemed so black and white. It hurts me to even admit that I was that small minded and faith less.
I continued to check on Autumn and stay in contact with Diana. I stopped by a couple times when I was at the hospital visiting other patients. Her mother told me how Autumn seemed to be improving, but the doctors insisted it wasn't anything definite and the outcome was the same.
Then 2 weeks ago I got this email from Diane.
"Just wanted to give you an update on Autumn because it's been a while and I don't want to leave you hanging. Autumn is still hanging in there, and the current hope is that they will consider her for a trach. It's unclear whether she's actually doing better than when you came, but she has been able to tolerate lower settings than they thought without continual decline. They'll be discussing her this week and evaluating whether she's stable enough to go through the trach operation. So while she is still immensely critical and something could happen at any time, hope is not lost.
Regardless of whether we'll be calling you back here, we're really glad to have done "happy photos" with you. Thanks again for doing that and we look forward to seeing them whenever they're ready!"
My heart leaped when I read the sentence HOPE IS NOT LOST! I love it. Then last week her mom updated me with this message.
"I am so happy to also tell you that Autumn is doing well!! She got her trach last week and has been doing great with it. She's still got a couple weeks at the hospital I think, but they hope to eventually send her home! Stop by if you're at the hospital between now and then!"
How good is our God?! How wrong are we when we doubt Him? We so often want to be in control of our life, but is it better when we are in control? If Autumn's parents had taken control for themselves they would have listened to the doctors and taken her off support. They could have said this is something we can control, we will end her suffering if the doctors say she won't get better. I don't know that faced with the same decision I would have been able to have that same faith. I admire their strength and ability to fight against all odds for their daughter. I am so grateful that God is in control of our lives. Not doctors or nurses or parents. Just God. All we have to do is trust Him enough to completely let go. Easier said than done right? I pray for the ability to do so, and I have to remind myself daily. I will never forget Autumn and how she inspired me.
Here's some more details from Autumns' mom. I asked her to write down the details to make sure I didn't get any of it wrong.
"Autumn came into the hospital for a routine heart cath, and we expected to be discharged the very next day. That night, she suddenly started crashing and wound up on ECMO. The next day we learned she had a really bad virus. 3 weeks later, she finally came off ECMO and we expected the worst of the virus to be behind us. But over the following 2 weeks, she started looking worse, not better, and her trend made it seem like she was in her final days. In what looked like possibly final hours, the doctor put her on her belly, even though that was already tried without any real success. But she responded shockingly positively this time around, and we had renewed hope. However, she then plateaued again and starting declining, and we were told that any improvements were only temporary and that recovery was ultimately impossible. (This is when we called you.) After that, she continued to hang in there, stopped declining, and even looked like she might possibly be improving. So we made some progress and had renewed hope once again. After more bumps in the road and being told again that Autumn's state is of concern, the doctor that saved her life the first time came back on service and changed her vent settings. She has had a very smooth positive trajectory since then and we are looking forward to discharge! It will still be a few weeks, and we'll probably camp out in rehab for a bit before going home, but she has basically met the criteria for getting out of here!"
One thing that scares us out is knowing that somewhere in that journey, some people would have withdrawn support. But we had decided that so long as Autumn was hanging in there, so were we.
May God be glorified through Autumn's story!!!"
May God be glorified indeed.
*I need to put a small disclaimer and say that in no way am I saying not to listen to medical professionals when it comes to your children, or anyone else. They do the very best they can with all the information they have. I am so thankful for them and their commitment to caring for others. Especially the ones who work in the PICU at Kosair. They are amazing. Before I began this photography journey and have now spent so much time there, I wondered how they did it. I wondered how they could get through each day, when they lose so many children. Now I see, when you have miracles like Autumn and Jacob, that is what keeps you going. The ones who you get to see go home, and the ones who beat all the odds. I have spent many hours there watching them, talking to them, working with them. These session take a long time, and there is a lot of waiting. I am all the more thankful for them now. I hope that they see the glory of God shine bright through children like these stories.
Autumn
Jacob
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