Don’t Lose Hope: A Letter to Special Needs Parents

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Dear Special Needs Parent,

This unexpected life is weird, wonderful, wild and ugly, isn’t it? I think we, of all people, are the ones who can rightly say, “It’s complicated.” Hang in there. You are brave, even when you don’t feel brave.

The best advice ever given me is what I offer you: Don’t ever give up hope.

It might not look great right now. In fact, things might look pretty bleak. You might not imagine how you’ll ever be lighthearted again. Your life is so intense, you can’t think about anything but big, heavy issues. Things you never used to think about. Things your friends never have to think about. Things you wish you didn’t have to think about, but you must. It’s not an option. It’s your life.

You may wonder how in the world you went from such a blessedly normal existence to this slightly bizarre life, where suddenly you understand medical terms without the benefit of a medical degree. At times, your existence seems surreal. You never thought life could be so different than what you expected.

You may have lost friends. Oh, not all at once. But little by little, the friendships fell by the wayside. Some you can trace back to relocation, some…you just lost. Maybe you saw their compassion turn to impatience, or maybe they couldn’t handle your pain. But some friends have faithfully stayed by your side. And new friends have joined you in your journey. These are the true friends.

And pain…pain is now part of your life, whether you like it or not. It’s like an unwelcome member of the family, speaking up at inconvenient times. Sometimes your pain is quietly managed in the private places and cover of night. But other times, your pain overwhelms, shouting for recognition in the sunshine of day. Pain is that ever-present thorn in your side that must be addressed. When it is, pain can be reasonable. When shoved aside, pain becomes a monster waiting to pounce, grown beyond proportion.

Why? you ask. Why me?

There are no easy answers to why. But take heart, friend. The best news is this: God is on your side. When you wonder if there is anything good left in this world, the answer is YES. Yes! Look in the mirror. You are God’s creation. Your child is God’s creation. You are the reason Jesus came to the earth to bridge the gap sin left between God and man. Because of Jesus, we have hope for our future. We have hope for our children. We have hope for our happiness. We have hope for our world. Jesus loves children, and He loves you. Even when we think our children suffer unimaginably, He never leaves them. He is faithful. We have hope through Him that we will never be alone. We will always be loved. Our struggle here on earth will not be in vain but for a purpose. His purpose.

Don’t lose hope, friend. You have Jesus.

–Teresa

Viewing God Through Circumstantial Lenses

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When Kristen was first diagnosed, I wondered why. Why, God?

Then my Why, God turned to Did you cause this, God, or did you simply allow it? Cause or Allow?

It was important to me, because it shaped who God was for me. I was swimming in a pool of disillusion. My circumstances were reshaping who I’d always thought God was. I was redefining God in terms of my new life i.e., my life as a special needs parent. A person who suddenly, undeservedly walks a very bumpy road. I was caught up in my circumstances, and I viewed God through the lenses of those circumstances.

Now, years later, I realize I wasn’t being fair. I was angry and wanted to lash out at the One who controlled things, because I felt so out of control.

I asked the wrong questions. If God had answered audibly, maybe He would’ve said, “Cause, allow…both are irrelevant.”

There is a Bible passage where God, in the form of a sword-wielding man, speaks to Joshua and tells him, pretty much, his question is irrelevant. When I read Joshua 5:13-15, along with Lysa TerKeurst’s commentary, it made me remember my own irrelevant questions:

13 Now when Joshua was near Jericho, he looked up and saw a man standing in front of him with a drawn sword in his hand. Joshua went up to him and asked, “Are you for us or for our enemies?”

14 “Neither,” he replied, “but as commander of the army of the Lord I have now come.” Then Joshua fell facedown to the ground in reverence, and asked him, “What message does my Lord have for his servant?”

15 The commander of the Lord’s army replied, “Take off your sandals, for the place where you are standing is holy.” And Joshua did so.

As Joshua was looking at the fortified city of Jericho, we might be seeing his courage falter a bit. The Lord tells him, “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” (Joshua 1:9) Despite this, seeing reality up close is another thing.

Suddenly a man with a sword appears before him, and Joshua jumps to the defense: Declare yourself! Are you for us or against us?

It was the wrong question. The angel of the Lord was neither for him or against him. He had a different purpose altogether.

He was there to remind Joshua to focus not on the circumstances, but focus on the Holy God who controlled all things, even the Promised Land Joshua stood on.

When I was faced with challenges beyond my ability, I looked at my circumstances instead of my God. I ended up angry, disillusioned, and fearful.

Then God reminded me where I could find Him: I felt compelled to open my Bible and flip through the pages. My soul was raw. I needed hope.

I found my hope, in verses I’d not read before. Passages from Isaiah, from Luke, from Psalms. By the time I finished reading, my soul felt refreshed. I didn’t find my answers, yet I was more than satisfied.

When we look at God through the lenses of our circumstances, we won’t see Him clearly. We will ask unfair, irrelevant questions. We won’t find answers.

When we look at God with no lenses, no filters of expectations, we will see Him for who He is. He is God. Whether or not we find our Why matters less the more we know Him.