My Gifts from Disability 

It hurts a little, maybe more than a little, when I see new parents saddened by the news their new bundle of joy has a disability. When new parents find this news before their baby is born and they send out the ‘bad news’ — it breaks me a little. Maybe I would have done the same had I known of our journey before our guy was born. The wisdom from time and experience in our special needs driven life has given that 20/20 hindsight. This Christmas, I’m seeing more clearly now my gifts from disability.

Man, do I remember walking out of the hospital after delivering my guy … without him. Walking out of the NICU and leaving him behind can feel like yesterday; it’s a pain I never expected. The last thing I was thinking about was the gifts to come. I relied on my own strength, or what little was left in me, and I wish someone had told me this:

"When troubles seem near, God is nearer, and He's ready to help. So why run and hide? No fear, no pacing, no biting fingernails. When the earth spins out of control, we are sure and fearless." (Psalm 46:1-2)

Years later, I wish I could write one of those letters to my younger self. If not to myself, to those new parents just now experiencing that new diagnosis of special needs. Yeah, your own dreams just got rearranged. But, God dreams so much bigger. Right now I’m listening to that very man/boy play with his brother in a way that back then I would have never dreamed possible. The gift of laughter is in our house. The gift of joy is here after a season of hard days. These little giggles are more than a mom could ask for right now.

"But let all who take refuge in you rejoice; let them shout for joy forever. May you shelter them, and may those who love your name boast about you. For you, Lord, bless the righteous one; you surround him with favor like a shield." ( Psalms 5:11-12)

I’ve been told I’m a bit of a worrier. Relax? I’m sorry, I don’t understand? Sure, I can give it to God … and then take it back again. What about you, new parents, are you worrying right now? For years (and years) one of the things I worried about was where my boy would live when he reached the age when he would need to move from our home. I researched and visited and laid awake at night stewing over the options. One day, it suddenly seemed he was already home, right where he needed to be. Now, I can’t imagine him living anywhere but here. Why did I waste so much of my days, so many nights, worrying about a plan he had all along? I finally have the gift of peace knowing God has a plan for us. All I have to do is rest in it. (Remind me I wrote this when I start worrying about something, deal?)

"... even at night when my thoughts trouble me. I always let the Lord guide me. Because he is at my right hand, I will not be shaken ... in your presence in abundant joy; at your right hand are eternal pleasures" (Psalms 16:7-8;11)

Evan loves prizes for any and all of his achievements. We may have created a monster. Like eating a cookie. Since being sick this past year he doesn’t eat much at all. Eating a cookie is a huge achievement. I, on the other hand, do not need much convincing to eat cookies. But Evan, he gets gifts. And just for eating that cookie he wanted a prize. Evan is excited for the smallest of gifts. Just a small token of his achievement is all he wanted. Evan has the gift of contentment. We are blessed with his happiness in the little things.

"Those who walk in the fields to sow, casting their seeds in tears, will one day tread those same long rows, amazed by what's appeared. Those who weep as they walk and plant with sighs will return singing with joy, when they bring home the harvest." (Psalms 126)

Evan loves all things Christmas; the music, the decorations, the lights, and duh, the gifts! He brings an extra excitement to the holiday and reminds us that Christmas brings us a hope, a joy. His contagious joy is a gift. Christ’s presence is new again at Christmas. It’s tangible. Evan reminds us (all day) of the gift of Jesus. This Christmas I am re-remembering: “For behold, I bring you good news of great JOY which shall be to all people!”

I’m not gonna tell you there won’t be hard days within disability. But, what the younger me didn’t know was there would be so many gifts hidden among those days. The difficult days would bring a gift of drawing me closer to God, and this simple life would be so much sweeter than anything I could have dreamed. So, new parents, send out those announcements of joy, not disappointment and fear. You just received a gift.

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A Special Needs City on a Hill

There’s a post going around Facebook; it’s the “Have You Ever …” version for special needs parents. It’s a mixed list of “Have you ever … Diffused a Meltdown or had to <insert whatever> for your child.” I reposted it because I thought there was a little community in it. Some, “Hey, you aren’t alone!” Most people responded by saying they had done all but three, maybe two. We’ve done them all. All nineteen on the list we have experienced to some extent. My husband said, “WE WIN! What’s our prize?!” Special needs and all that comes with it gives us community, the ‘I get it’ with each other. But ‘have you ever’ considered just maybe we are not only our own little community but a special needs city, a Special Needs City on a Hill?

I posted this list after a night of sickness in our house. Sickness from our guy who has special needs and an ongoing disease that’s causing side effects of daily sickness. All day, every day. One of our other children has had that run of the mill stomach virus that just won’t leave. Just when we, and he, thought it was gone, nope. He took a flying run down the hallway to get to the bathroom and almost made it there. Almost. And then there is the dog. Yes, the dog. Even she is now in on the fun. Aging doggies who leave piles of ick? Makes you want to run right over and visit us, right? Bring your hazmat suit.

There is community in our special needs world that others may not ever understand. We go to bed nights whooped with the thoughts that others, even those closest to us, have absolutely no idea what goes on in between these walls. We rarely venture out of them because who wants clean up on aisle five?

We aren’t pretty when we go out. It takes planning. Do you have the medical bag, extra IV fluids, things for those emergency bathroom moments? Extra everything, actually. Just getting in and out of the car takes planning, more than one person to help, making sure all the tubes and cords aren’t caught on anything. It’s an orchestrated event. After all this planning, my introverted self would stay home nine times out of ten if given the choice. Community is hard. This little light of mine? Hide my light under a bushel, please.

But what happens when we do go out? What happens when we leave the comfort zone of our little world? What about the community of people who aren’t on the list of “Have you Evers?” What are we, and they, missing when we don’t shove ourselves out there? We’ve been called to be a city on a hill, a light that cannot be hidden. I don’t know about you, but when we go out, there is no hiding us. We are ob-vi-ous.

I will tell anyone and everyone, “I’m fine.” Even when everyone and the dog is puking their guts up. Maybe what the community needs to know is we aren’t fine. We are struggling over here. We have done every single thing on the “Have You Ever?” list and we need you to come to us. We can’t go anywhere. Please come here. And just know it isn’t pretty. Hold a puke bucket. Get messy with us.

Matthew 5:14-16 is the verse about being a city on a hill, a light that brightens the whole house. I love how The Voice’s version goes on to say, ” so men and women … may see creation at its fullest, may see your devotion to me, and may turn and praise your Father in Heaven because of it.”

Maybe we go there. Maybe they come here. Either way, we are a City. We have a special needs community with each other already. We know what each other is going through. We get it. I see you on that “Have You Ever?” list. But do they? I’m becoming okay with being different. (Finally, it’s only been how many years?) We’ve been made different, a Special Needs City, and we shine bright. Shine so others may see creation at its fullest. Shine so others may see our devotion to our Father in Heaven. Shine so others may turn and give praise to Him because of it.

Don’t worry, we will make sure the stomach virus is well gone before we come your way, World.

Is God Still Good When The News Isn’t?


I read someone else’s good news with a little bit of sting in my heart. All of the responses were filled with joy. (As they should have been.) More than a few read, “God is so good.” Yeah, God is good when the news is good. But what about when the news isn’t all we had hoped it would be? Is God still good when the news isn’t?

I hope people aren’t thinking God isn’t as good here because things are hard these days? I don’t have as many “God is so good!” comments coming my way. I get more prayer emojis on my end. But the truth is, I’m not living in a world where I think God is only good when the good things happen. Just because we haven’t been able to ring that final bell resounding the end of our difficult journey doesn’t mean God suddenly went bad. Actually, I believe something quite different.

Even thought our journey has been pain filled, it’s dang hard if I’m honest, I still get to see more of God’s goodness than you might imagine.

When I read Psalm 31:19 it tells me to take refuge in him and I will find his goodness. I don’t know about you, but I seek refuge in God in the hard times much more often than the good. During those good days I’m rolling along, windows down, without much need for refuge. But those rocky days? Duck and cover. God’s refuge, here I come. Psalm 31 says, “How great is your goodness … for those who take refuge in you.” I’ll find God’s goodness during the rough stuff way more often than the easy days, right?

God’s goodness doesn’t change according to our circumstances. Remember, that thing about him being an unchanging God? Just because I am wavering and scared and anxious in this fire does not mean God is feeling the same. He is where my refuge is found. Shadrach, Meshach, and Abednego found God’s goodness in their fire, didn’t they? (Daniel 3:8-30) They sought refuge in God in that furnace. And that’s exactly where they found his goodness. Not before they got in it, God didn’t save them from their troubles before they were tied up and thrown into that fire. But, right in the middle of that fire is where the goodness showed up. “…there is no other god who is able to deliver like this.” (vs.29)

My news isn’t the resounding congratulations I would have planned for this ending. There was no bell ringing announcing our finish line like we expected. But, that’s okay. I’m not much on public ugly crying anyway. Which is exactly how that scene would have played out for me. I can find my refuge in God. It feels good there. In his presence is where my hope and his goodness is found (credit: Francesca Battistelli). He knows our plan. What’s that Proverb again about me planning and God establishing? (Proverbs 16:9) I’m resting in this plan. God’s goodness is here.

Favorite song today:

This is Bigger Than Me

There are days I don’t know what to pray. This whole thing is so much bigger, scarier, than I ever could have imagined. I don’t even know which way I want it go. This is bigger than me.

I’ve always had a pretty good handle on medical terms. And special needs was something we finally felt comfortable in. Nothing we dealt with was too emergent. I had time to research, ask, or Google!, to my heart’s content. But this is bigger.

I’m in deep now. Things are coming at me fast. Critical care isn’t my wheelhouse. I’m a thinker. I mull things over. (Yeah, yeah, maybe I tend to Dwell.)I don’t have a trigger-finger when it comes to making big decisions. (My mouth got the trigger-finger, not my brain.) But intensive care is … intense.

I’m in a place where I can’t rely on me anymore. I can’t even completely rely on the intelligent people God has placed around me. Oh, believe me, big important people think they know all the stuff going in. But, my guy has proven them wrong time and again these days. This is so much bigger than them.

When I see the smartest of the smart come through my son’s room and admit, “I don’t know,” It’s humbling. So big.

Where do we turn when even the best of the best, the highest paid, the people everyone else looks towards say, “I don’t know.”?

I keep hearing the Chris Tomlin song in my head, “Our God is greater, Our God is stronger, Our God is Healer, God you are higher than any other…” It’s like the Holy Spirit is reminding me this is bigger than me, but it is NOT bigger than my God.

God has given us a book, his Word, and it is filled with reminders of how He moves in big ways. I’ve lived long enough to not expect God to use fireworks in every moment of our lives. (Don’t think I’m not asking for the really big show here.) But these big stories are a reminder to me of who God is, of how big he is.

He is a God who can hold back seas, shut the mouths of lions, turn people to stone, rip temple veils from the hereafter, and who I trust to save my soul. Why wouldn’t he be big enough to handle what is going on in the here and now of my life? Of my boy’s life?

Right now, this is big. There are medical terms of which I understand about every third word, nights on end of being awake, and watching my guy hurt a hurt like I’ve never seen before. But I am trusting, hanging on to hope, my God is bigger than all of it.

I’m going back to the Bible stories of my youth to remember God holds us. He hasn’t forgotten us.

  • Psalm 105:4 (CSB) “Seek the Lord and his strength; seek his face always.”
  • Deuteronomy 31:8 (VOICE) “And he will be leading you. He’ll be with you, and he’ll never fail you or abandon you. So don’t be afraid!”
  • Matthew 10:29-30 (CSB) “Aren’t two sparrows sold for a penny? Yet, none of them falls to the ground without your Father’s consent. But even the hairs on your head have all been counted.”

Give It Away: Even in Special Needs and Sickness

It was never mine to begin with. This life I live was never all mine. I gave it to Christ a long time ago. I told him to use me, use my kids, my life, use whatever he needed. I’ve prayed prayers asking God to use me in bigger ways than inside the walls of my house. And, remember the song I sang asking for the Holy Spirit to lead me where my trust is without those same borders? Well, here I am. Living a new life, new borders, new people who I would have never encountered in my old way of living. I guess I forgot to add the criteria to my prayers of no sickness, no pain, no hardship. But then, this life was never mine to make demands upon to begin with, was it? Giving God control even in special needs, even in sickness; I didn’t know he was going to ask me to give it all away. (Next time maybe I’ll ask how God can best use me in the shoe department of Nordstrom?)

An old childhood friend visited us at the hospital. Old friends can be the best, can’t they? They know all the stuff. The good, the bad, the ugly. If they still show up when the going gets tough, that’s a friend. But, a friend who shares Jesus with you? Keep those. This friend shared his devotion on St. Macarius the Great of Egypt. I’ve never been familiar with the saints and this story drew me in. The story of Macarius was that he found thieves taking all he had and loading it all on their camel. But, Macarius didn’t do what most of us would do in this situation; fight for our stuff. He did the very opposite. He helped them load all of his possessions on the camel. He even went back in and gave them something they missed. Then pushed the camel away himself. In the end, the camel wouldn’t leave Macarius until all of what was stolen from him was taken off and given back to him. The thieves left empty-handed.

Give it away. I’ve heard that before. But not like this. When the thief comes? Keep on giving?

This disease that’s now in control here; it’s taken my son. This disease has not just taken my boy, but it has taken so much more than we ever expected. It’s stolen our time for anything, our family cohesiveness, church attendance, ability to parent without many opinions. The thing that hurts so much is it has yanked the joy right out from under me. The laughter is gone. Truth is, I just don’t care what else this disease takes anymore. It can have it. Just give me back my boy.

But I’m not sure my current dumping is the way Jesus intended us to give it all away when he was approached by the rich man. His way is something more willing. When the rich man asked what he needed to give up to get into Heaven Jesus said to love your neighbor as yourself and sell everything. Then follow him. Follow Jesus. (Matthew 19:16-26)

Give it away. And somehow I don’t think Jesus was talking about just the stuff. What else have I been holding on to? My way of life? My comfort? My routine? That routine has been King for a long time here. Routine just got dethroned.

There’s another story in Genesis (Gen.22) about a man having to give up his son. It’s a dark story that we parents don’t like to look too long upon. Ask me anything, God. But, please don’t ask me to give up my babies, whatever their age. What I try to see in that story, more than the near death scene, is God providing. God providing a way in the darkness. He asks a father to give it all up, only to show him he had the answer waiting at the end of the story all along.

I guess this disease can have my stuff, my old way of living, all I’ve ever known. Even that blasted routine. You can take it or I may even start helping you load it on your camel, Disease. I’m starting to figure out that God just might have a bigger plan waiting at the end of this road than I can see from my point of view.

Song that’s getting me through: