My son Josiah was born on January 5th, 2001. We were so excited when he was born. He was beautiful and it was a wonderful time, but later that night I noticed that he would choke and spit up when I nursed him. The next morning the doctor came in and explained to us that not only was Josiah’s birth weight low, but his head was small.  Josiah had an MRI done and the neurologist told us he might have lissencephaly which is when the brain is smooth, and does not have the usual folds and grooves. 

When Josiah was six months old, we went to a conference for kids with lissencephaly. We met the leading researcher at that time who looked at Josiah’s MRI and told us he wouldn't be able to see, walk, talk, sit, or rollover, and that he probably wouldn't live to two years old.  It was really bad news. But we later realized God was using Josiah to show He has the final say about what we can and cannot do. 

Josiah learned to sit up and roll over. He took his first step when he was 23 months. He walked a little differently, with a wide gait, but he did walk. He was very thin and had seizures. He had a lot of difficulty with feeding and after eight months had to have a feeding tube put in. Josiah developed mentally to about three years old, but he stayed there. He didn't go on, so he was always a baby and always needed care.

I was very upset with God for allowing us to have a child with all these special needs that probably wouldn't even live very long.  Josiah needed 24/7 care and for the first few months and we didn't have any help. We had to be with him constantly: monitoring his feeding, watching for seizures, making sure he wasn't choking. He got sick a lot. It wasn't uncommon for us to go to the emergency room once a month and to the doctors every week or more. Josiah couldn't regulate his body temperature, so if it was warm, he got too hot. 

The constant monitoring was overwhelming. It was so hard. I would cry, but I got no comfort distancing myself from God because He's the true source of comfort. I got to the point where I had a choice: I could continue the way I was, or I could get comfort, which meant turning back to Him even though I didn't understand. It was still rough but turning to God really helped.  It became more doable when I turned to our Heavenly Father again, as opposed to when I purposely distanced myself.

Josiah loved going  to church. It was the highlight of his week. He loved to worship God and he loved all the people there. He connected with everybody. He did high fives with the men and he would do a kind of hand game with the women. But he touched everyone, and everybody responded. They would give him hugs, they would talk to him. He always made people laugh. 

He listened to the talk very intently to the point where he would mimic the speakers’ hand gestures. He really paid attention and loved the whole process. If I helped him out of the car then turned to get his stuff, he would already be running to the front door. That's how excited he was. He didn't know anything about difference, so he had unconditional love with no filters.  He didn't know this person was quiet or that person looked different. He was loving to everybody. 

He was happy most of the time and he trusted in us completely.  If he was unhappy or frustrated, that only lasted for a little while and he'd go back to being happy. He had a lot of tests all through his life and some of them were very painful, but the minute the test was over, he would hug the person that just caused him pain. He was extremely forgiving and didn't hold grudges.

Josiah lived until he was 17 which was amazing because they didn’t think he’d make it two years old. The last day when he was dying, he couldn't see or move anymore. He couldn't talk, but he could still laugh. I remember my daughter was with him in his bed and I came up and she said, “mom, do you want to switch?” And I said, “okay.” And I said, “Josiah, mommy's coming.” And he had this huge smile on his face that I'll never forget.

That evening we knew it was close to the end because his breathing was very slow. A big group of young people came over and sang hymns. We could feel God's presence with us, and that reminded me how much He loved Josiah. We didn't tell the young people while they were singing, but when they left we realized Josiah had died in his sleep.  I can’t tell you the pain.  I held his body and wailed. It was like my heart was pierced. 

My message to other parents who have experienced loss is that the only true source of comfort is our heavenly father. When you're feeling distant or angry with him, I believe it's okay to go to Him with that. There are Psalms in the Bible in which David's questioning “God, I don't get it. Here I am doing your will and I'm running for my life.”  God put that in the Bible to let us know we can be honest with him that way. What helped me most was when others simply listened and were present.  When you lose someone, people are afraid to make you upset so they don't mention your child, but that is the total opposite of what I need. I need to talk about him, and know that people haven't forgotten him. Talking about him really helps. 

Josiah was an amazing person, and I'm so glad that God gave him to us.  It was such a blessing to be with somebody who was totally trusting and loving and forgiving with no judgment. That's where we should be, and he had it. He wasn't working at it. That was him. People who didn’t know better would look at him and say, “Oh, that poor child.” But he wasn’t a poor child. He was rich in spirit, and he was content. He enjoyed his life and he enjoyed people and he loved God.

To listen to the full interview with Audrey and Helen please check out our A Little Faith podcasts.