The hardest day

I don't know why I've been compelled to share my story, but here it is. Just to warn you, this is all raw and disorganized. But, it's my story.

I've been reading Elizabeth Elliot's book Keep a quiet heart and there was an article that just struck my heart. It was about a woman who was born with no legs. Even though her parents did everything they could to make her childhood rich, when they were asked "What was the most difficult time of your life?" They said, "The day Susan was born and it still is." Wow. It was so freeing for me to read this.

What was our hardest day like? There was so much excitement built up for the arrival of Josiah. He was a surprise baby, but we all couldn't wait to meet him. When the moment finally arrived all I heard was silence. A long silence. I didn't understand why it was so quiet. Edison saw his face, but he didn't say anything to me. He went to go take a picture of him while they were cleaning him up and he came back with this face that I will never forget. He pointed to his mask, but I didn't understand. He was pointing to his mouth. Neither of us had ever seen a baby with a cleft lip and palate, so he was at a loss for words. When the nurse handed him Josiah he just held him with this look on his face. When I saw Josiah I thought he was in a lot of pain, so I said, "Poor baby. Poor baby" over and over again. Thoughts of "What did I do wrong? and What didn't I do?" came flooding into my mind and heart. Edison left to be with him in the NICU where they examined him. My doctor knew this and she tried to reassure me that everything was going to be OK. She tried to talk to me about surgeries and how they were going to fix him. "You won't be able to tell," is what she said. I started having a major neck and shoulder spasm. I was freaking out. The anesthiologist massaged my upper shoulder and gave me some morphine. The pain eventually went away, but I had trouble breathing for the next hour or so.

We are forever changed. From that day on we have been on this crazy ride and we're not getting off. We took him to get a mold done on his mouth and he coded. Our time at Children's Hospital has made a huge mark on my heart. I will never forget the image of 10-12 nurses, doctors, security people racing as fast as they could down the hall towards Josiah's room. A man kept asking me, "What happened? What do you know happened?" over and over again. I didn't know anything. It was so scary. At that point I thought we had lost him. We ran after him to the ER and when I was finally alone with him I sobbed so hard and told him, "I'm so sorry" over and over again. I will never forget the nurse who came over to me and gave me tissues. She put her arm on my shoulders and said, "Mommy, you're doing a good job. You're doing the best you can. You brought him to all of his appointments. etc." What a sweet soul! Of course I didn't stop beating myself over my head, but that helped. One thing that I kept thinking was "God, how could you take him away from us after we had fallen in love with him?" To be honest it took awhile to get over the cleft lip and palate. His sweet presence just kept pushing his way into our hearts. It was like he was saying, "Ta da! I'm here. Don't you think I'm pretty great?" And we did.

The day that he was admitted in the PICU Edison and I went into the Parent's Lounge and just lost it. I mean we completely LOST IT. My heart hurts to think about that moment. There was this woman sitting at the table next to us. Her name was Blanca. She said, "This is your first day here, but I've been here for four months." Her baby needed a heart transplant and they didn't think that she was going to live long enough to receive it. Another healthy baby needed to die for her baby to live. Even with the heart transplant she was only going to live at the most 18 years. She had another six year old at home, but she spent her days with her baby at the hospital as much as she could. It changes your life. It puts everything into a different place. You no longer care about the little things. You just want your baby to LIVE! This is what we've been given. Josiah is alive! He has been saved.

There were two instances when I thought, "Lord, just take me now." I really wanted to die. I thought this burden is too great for me to bear. I couldn't imagine how I was going to go on. I kept thinking about Ali and Sammie at home and how I was going to take care of them on top of him being in the hospital. It was really hard, but God provided. Everyone surrounded us with so much love. I can never thank them enough for how they cared for our family.

The dreams we had for him have changed. We had to let those dreams die and build new ones. My friend Shannon told me about this email that said having a baby with special needs is like preparing for a trip to Hawaii, but landing in Australia. Australia is great, too. But it's not what you expected. Now I dream of him eating well so that he can make it through his surgeries. I dream of him doing everything that your average boy can do. Run, jump, laugh, shout, etc. Will he be able to speak? He didn't pass his hearing test, but I think he can hear. But, what will life be like for us if we have a child who is deaf or hard of hearing? Should I learn sign language now?

Have you ever been in a place where you just couldn't pray? My heart hurt so much when I thought about asking God to rescue him from those two surgeries that I was afraid to even ask. I could always pray for other people and their children's needs. But when it came to my own baby I wanted it so bad that I couldn't get the words out. What if God wasn't going to let him go home without the surgeries? It was a long time before I was able to cry out to Him for this. When I did, I didn't just ask him, I shouted with all that I had. You know what? He heard me. He saved Josiah from two major surgeries. It was a miracle.

Here is a picture of our little miracle.