Ever feel like your faith is just hanging by a thread, you are holding on for dear life, escaping by the skin of your teeth? Do you know what I have come to think during those times? At least I have a thread and I haven’t let go of it! I know that doesn’t sound like much, but that thread has got me through the tough times and I’m grateful for it!“I am nothing but skin and bones; I have escaped only by the skin of my teeth”
- Job 19:20
“No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.”
- 1 Corinthians 10:13
“Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.” – Hebrews 12:3
Sometimes the thread comes in the form of a scripture that I keep close to my heart all day, all week, all month long. Sometimes it comes in the form of a conversation in which someone points me again to my faith in God. Sometimes it comes in the form of a reminder of God’s power working around me in years past. Sometimes it is simply in the form of a hug from someone I love, but either way, God always provides a thread.
My faith has taken some hits over the last few years. We all go through them. You may feel my “hits” are nothing compared to yours, and that may be so, but to me they are hits all the same. Sometimes I’ve felt, “Why God? Why are you making me learn the lessons all over again? Haven’t I learned them well enough?” I told a friend recently that I was tired of always feeling as if I were paving the way and alone in what I go through. Yes, I was feeling sorry for myself – and tired, discouraged, fearful and anxious – and even if it wasn’t true, I was feeling it.
Twenty-three years ago when I was six months pregnant, I found out through an ultrasound that my first son would be born with a severe heart defect and with Down syndrome. I remember driving with my husband to the hospital before the ultrasound and we joked about how smart our child would be. Then we received the crushing news. I already had a step-nephew with Down syndrome and did not think it highly probable we would have a child with special needs, but as He often does, God decided to go against the odds.
We were leading a young church at the time – an awesome, but young church. We didn’t know what we were doing, but decided to trust God had a plan. Romans 8:28 became my theme verse. At six 
months of age, our son had open-heart surgery and all went well. I did have fearful thoughts like, “He’s cute now but what about when he’s 25? Will people think he’s cute then?” and, of course, the constant guilt-ridden thoughts of “Am I doing enough?” but Barrett continued to grow and develop as a typical boy with Down syndrome. He took his time to learn to walk, eat, talk and potty train (boy, I think that took about 12 years!) but most of that we expected, not easy but expected. What I didn’t expect was that our son would develop mental health issues these last few years. Just when I thought there would be smoother sailing ahead, we were thrown for a loop. Now, I like roller coasters as much as the next guy, but the older I get, the less I like those unforeseen loops!
It began with Barrett pacing uncontrollably. Then I noticed a few times tears running down his cheeks for no apparent reason. Then he asked me what “suffering” meant - and my heart just broke hearing that question. We talked about Jesus’ suffering and how He could relate. I was grateful to share that with him. But then later that day, the next week, and times since, it’s as if we never had that conversation. Barrett’s agitation continued to get worse. The pacing, the teeth grinding, the anxious ticks, the thrashing in bed at night grew worse and worse. Barrett was diagnosed with depression, anxiety disorder and intermittent explosive disorder - and those explosions have been scary at times.
Barrett had always been high functioning but he began to regress where even one-step directions could be difficult for him. He started to obsess with certain subjects and would ask me the same questions over and over. We had always thought he would be able work after finishing school, live on his own, and be able to do so much for himself. Now we aren’t so sure. It’s as if I lost the child I had before and he was becoming a different person.
Why couldn’t I have had a “normal” child with Down syndrome (as if that is a possibility!)? He has only had a couple of scary episodes but they have been scary enough that I have wondered how long he can live with us. During those times I’ve had horrible thoughts, too – thoughts I hate to confess – like how much easier things would have been if Barrett hadn’t survived his heart surgery long ago. I’ve even had thoughts of how I hated my life – and I felt incredibly guilty about that since God has blessed me in so many ways! I’ve felt like a horrible mother – I love my son so how can I have such awful thoughts?
It’s painful to see your child suffer. I’m not sure if there is really anything worse than seeing someone you love suffer. That pain can lead me down a scary path. At times like these I feel I have nowhere to go but to God. No one has answers for me or for Barrett, but at least I know God understands and has a plan. That is always the thread I hold on to. I know His ways are not my ways and His thoughts are not my thoughts (Isaiah 55:8-9) and that I can trust His plan is better than any I could come up with. I’m determined to not play the fool, to not be wise in my own eyes (Proverbs 26:1-12) but to trust in His plan. It’s not easy. I often feel sorry for myself. I often feel lonely and even jealous. I often wish I were doing more for God (at least that would bring some encouragement). I just never thought I’d be at this place at this point in my life. Can you relate?
I’ve realized through the years that courage is not the absence of fear, discouragement or anxiety, but it is holding on to faith during those times. I think that is why God gives us our own “stones of remembrance” (Joshua 4:4-7). When I was pregnant with Barrett, a woman I was studying the Bible with told me that if I truly had faith I would just pray for a miracle, claim the miracle, then Barrett would be born without Down syndrome. I told her that I believed it took more faith to pray for God’s will to be done and that was what I was praying for. She continued to study the Bible and became a Christian - and I like to think that seeing my faith helped her a bit!
Another woman came up to me at church and told me she had never believed in God but once she learned about Barrett and all we went through, she decided that if I could still believe there was a God, then maybe there was something to Him. She also went on to become a Christian.
Those two stories are some of my “stones of remembrance.” Even if just for those two women, God used Barrett in a great way. I know He will continue to do so. I have no idea what that will look like or what may come from all this recent turmoil, but I can be confident God will work it for the good. Barrett has brought tons of joy to our life, lots of laughter and fun amidst the tears. Anyone who knows him knows he loves to laugh! Having Barrett has also taught us a lot about God and our faith, and we wouldn’t let go of that thread for anything.
“The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds. We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.” – 2 Corinthians 10:4-5
