Living by Faith

Tonight is the eve of World Down Syndrome Day, and it is the first year I have ever actually known of its existence. I now tally this up to ignorance and a general “head in the sand” experience I have had to anyone who is vastly different than me in the past. Leading up to this day has been a mix of emotions for me. I have enjoyed seeing the new community I have been thrust into, celebrated so beautifully. I have heard countless stories of many family’s experiences, and how children and adults with Down syndrome are thriving as they navigate this crazy life. But I have also experienced a heaviness. A heaviness of uncertainty.

Today, on the eve, I have even reached the point of tears, flat out not wanting my family to have to deal with all of the medical issues that my son, Ben, who has Down syndrome, is currently experiencing. Yesterday we had an appointment with his cardiologist confirming that there was not any improvement to his lung pressures making it necessary that his heart surgery be preformed sooner rather than later. He will be starting new medication with some scary potential side effects. All of this to say, I am trying my best not to be worried, but it creeps in like an ugly virus threatening to consume all of my thoughts.

So today was a day to let it in, to cry, and to try to put some of those feelings behind me. A wise and dear new friend told me today, when I let her know that I was not having a great day, “We are allowed to have these [hard, sad] feelings, but we can’t stay in that place.” It got me thinking, what does it look like to feel emotions, but not to stay in them. I believe it looks like 2 Corinthians 5:7.

For we walk by faith, not by sight.

My emotions of fear are rooted firmly in not knowing the outcomes. Whether the outcomes I fear are Ben’s surgery in a few weeks, concern for his social experience in school in a few years, or wondering about his independence as an adult, all of it is unknown.

The next steps I can take into a vast sea of unknown outcomes are steps of faith. The way I move beyond the waves of fear that threaten to swallow me is to let go and say, “I don’t know, but I will keep walking.” I will keep waking up and snuggling the lovely little boy entrusted to my care. I will not allow my fears to be what drives me and my decisions, but to allow faith to carry those burdens of concern.

In second Corinthians 5, Paul is addressing the members of the church, warning them about the evil that seeks to devour them and encouraging them to lean into their faith:

6 Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. 7 Cast all your anxiety on him because he cares for you.

8 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lionlooking for someone to devour. 9 Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen.

Reading these reminders have empowered me to not allow what is difficult to consume me. The world suffers. Whether it is the loss of a loved one, loss of security in a job or a home, pain in either mental or physical ailments, or in unexpected news like my family has recently experienced, the enemy seeks to use all of these things to cause a person to lose hope. Even when I do not know what lies ahead, living by faith, I am combating the lies that the enemy tells me.

The enemy tells me I am not enough for Ben.

But Yahweh in me, is enough. (2 Corinthians 13:5)

The enemy tells me that I should fear the worst for Ben’s medical care.

But Yahweh holds Ben in His hands and His plan for Ben’s life is already set. (Job 42:2)

The enemy tells me that I am alone.

But Yahweh holds me close. (Romans 5:8)

These truths chase away the darkness in my heart and mind. They allow me to breathe in and rest when fear should overcome me. They allow me to rejoice in this new holiday I will celebrate for the first time tomorrow, even when I cried over that same Down syndrome today.

May living by faith continue to make me infinitely stronger than living by my sight.

Happy 3/21 World Down Syndrome Day, to you. Wear your crazy socks tomorrow and celebrate this corner of the world that you may know nothing about.