I came home feeling empty. The kids and I had just been at a birthday party and I was glad to be home. The party was full of lovely people and fun activities to participate in, but because of Salem’s differences I had spent most of the party in a separate room with him, away from the festivities so he would be less overwhelmed. I hardly saw Eden and Ezra as they were having a great time, fully enjoying all that the party had to offer. “I felt like an outcast,” I explained to Nick when we caught up on each other’s’ days later that evening.
Salem has completely rocked my world. Because of his genetic differences, he perceives and experiences life differently from the rest of us. I love him in a way I have never had to love before and at the same time, my heart is broken every day because of his struggles. Currently, he is going through the process of getting diagnosed for autism. Salem’s frustration with not being understood continues to grow and the stress he experiences because of perceiving things differently often results in yelling, hitting, ripping, and more. Just two days ago, he was kicking Ezra because he didn’t know how to handle his anger and when I removed him from kicking, he began biting down hard on his own fingers.
Agonizing over this trial I was excited to find that the latest episode of the Homeschool Made Simple podcast had an interview with Sandy Hay, the associate director for Wheaton College’s Center for Faith and Disability. The center’s goal is to equip and provide resources to communities so they can fully embrace all people regardless of disability in educational, worship, and organizational life. It was such a hopeful podcast of how people with disabilities are also a part of the body of Christ and we will only function at our best if they are included in it. The podcast ended with Sandy explaining the parable of the great banquet from Luke 14:15-24. A master sent his servant out to invite people to the banquet. After everyone turned down their invitations for various reasons, the master had his servant invite the “poor and crippled and blind and lame.” People with disabilities were the guests who filled the seats.
I pondered the idea that the body of Christ would only function at its best if people with disabilities are fully included in it. “That must mean that in the plan God has for me, I will function at my best because of Salem being in my life,” I thought to myself.
Later on, I was reading 1 Corinthians 13:4-8, the famous love chapter. I was particularly focused on verse 4 where it says that love “does not envy.” In the Message Bible that verse is translated as, “love does not want what it does not have.” That struck me to my core when I read it. I have spent hours of my time wishing I had more in life and how I can’t because of Salem. Thoughts of how much more difficult and isolated my life is. Thoughts about dreams that I have had to let die. Thinking about that was such a painful process and made me realize how selfish I am. I thought a long, long time about this and I finally came to this conclusion: the losses I have had in Salem have made me the best version of myself so far. Through the painful process of laying my life down in order for him to thrive, the sinful things in my heart that I unfortunately have quite a lot of (pride, selfishness, jealousy, etc.) have slowly died out. The only way this has happened is because in my pain and loss and seeing how sinful I am, I have needed, desperately needed more and more of God. And as I have cried out to Him and sought Him out, I have received Him. It’s the only way I have survived.
Recently I read The Jesus I Never Knew by Philip Yancey. Yancey writes about Mary, the mother of Jesus, and how Jesus becoming her child made her an outcast. I thought about how Jesus entering Mary’s life isolated her as people shunned her for getting pregnant before marriage. I wondered if she felt jealous of her cousin Elizabeth whose pregnancy was a miracle that brought joy and wonder to all around her while Mary’s miracle brought fear and shame.
A church member recommended that we try and get Salem into the B.E. Smith Family Center close by our house to receive services there. We took his advice and were able to get a tour of the facility. It was the most amazing facility I had ever been to. Not only was there occupational, physical, and speech therapy, there was music and water therapy, an autism classroom, a preschool, an outdoor playground, an indoor gym, and much more. The building was designed and decorated in a way that was beautiful and inspiring. Even better was that they had a scholarship program for families to help ease the financial burden of all the medical costs. For a family of our income, we would only have to pay $35 a month for all of the services that Salem could have there. Right now, with our current insurance, we pay a $50 copay for one therapy session. To get Salem into this facility would be a dream. And of course, with all that this place has to offer we were told that there was a 2-year wait list.
When we got back into the car after the tour, I looked at Nick and said, “Well, the only thing we can do is pray.” We turned to our kids in the back seats and prayed together. We prayed at home, during our evening worships, and sometimes Ezra would pop into my room before heading to bed just to tell me, “don’t forget to pray that Salem gets into that facility, Mommy.” Three weeks later I was in the middle of cooking dinner when my phone started to ring. “Hello,” I said casually, not thinking much about who was calling me. “Hi!” a woman said excitedly, “Could I please speak to the parents of Salem Snell?” “Yes, I am his mother,” I said assuming that it was his doctor’s office or something associated with that. The woman proceeded to tell me that it was the B.E. Smith Family Center and that they had gotten Salem a spot in occupational, physical, and speech therapy, and that he could have his assessment in three weeks! I struggled with tears throughout the rest of that phone call.
That day, some of the self-sufficiency and self-righteousness that I struggle with died and my faith grew. Perhaps I don’t need to fear feeling like an outcast with the challenges that Salem brings into my life. Just as Mary would consider herself privileged to be the mother of Jesus despite the immense responsibility and hardships she would face because of it, I consider myself privileged to be Salem’s mother because having him in my life causes me to run to God and receive him. Maybe if you take a close look at the losses and struggles you are facing or have faced in the past you can see how God uses them to give you more of Him. Being Salem’s mom gives me more Jesus. And more Jesus is the greatest privilege we can all have no matter our situation in life. - Deanne Snell