In the last few months I’ve heard things like, “I could never do what you do.”, “What makes him want to spend time with them?” and, “Why is she sacrificing that?”. All in reference to spending time with people with special needs and caring for those with disabilities. Most were said with good intentions. But when we elevate one person, we lesson the other. These statements lessen the lives of those with disabilities.
I’m going to let you in on a little known fact … WE’VE GOT IT ALL BACKWARDS!
They are the ones blessing us! If you want to see the glory of God (John 9:3), spend time with someone who has a disability. If you want to see joy in it’s purest form, spend time with people who have special needs. If you want to feel unconditional love, get out of a me-centered world and start caring for someone who depends on others to live. There is where the true blessing awaits.
The people who are spending time with my son and others during school and their spring breaks, offering friendship because they want to, they make my heart burst with thankfulness for their love and kindness. But you know what? These people aren’t kind to people with special needs because of their disabilities. They are kind to everyone. Those I know closely are just allowing Christ to work in their lives. And if you are a parent and this was your child with needs, yes, you could do this. Won’t and can’t are two different things.
Here’s my second little known fact … People with special needs are PEOPLE and they know what is being said about them.
Think about how it feels to hear someone say, “why would she sacrifice”, “what makes him want to do that”, “I couldn’t do that”? I’m here to tell you it hurts. It hurts BIG TIME. It’s the kind of hurt that keeps a momma awake at night thinking about it. What about the things I haven’t heard? I have a son who can’t tell me what hurtful things people have said to him. I rely on kind people that surround my son and stand up for his rights. The same rights you and I have.
We’ve got it all backwards. It isn’t about what we are doing for those with special needs. It’s all about what they are doing for us. Go spend time with someone with special needs. Get to know the person behind what you initially see. It takes time. Sometimes there is pain and sleepless nights. But isn’t that true of any relationship? Yes, you will be helping them. But I guarantee you will be the one that comes away changed.
Bible Verse I’m Loving Today:
Song I’m Loving Today:
“Hey, Mom, remember that time you fell & grabbed that guy’s butt to break your fall?!” my son said to me. Ummm, yes. Every second of every day. It didn’t help that the guy was wearing American flag pajama pants. I practically see those pants in my sleep. I’ve said it before, I have trouble letting go of some thoughts. Also, I fall a lot. So add my lack of grace to my over-thinking of things … yes, I remember.
Evan thinks about things a lot. He loves certain things like his bags, Apples to Apples cards and now plastic cups. He thinks about them all of the time. Even in the middle of the night he will call out asking where is his baseball bag. Or lately I can hear him knocking cups together like he’s just checking that they are still there. After a knock or two he’s okay and he goes back to sleep. He doesn’t leave the house without a favorite bag full of his favorite cards and favorite cups. Leaving the house is one of the most difficult, lengthy processes. Getting him to focus on just one bag and not every single one of his cards and cups can be overwhelming. If you wonder why we are always late, this is usually it. It has become a habit for us to get ‘the bag’ before we leave. Evan doesn’t often let us forget it but we have learned the hard way to think one step ahead. Bring the bag now or go back and get the bag later.
I get after Evan sometimes about his obsessions. I want him to stop obsessing so much and just once be able to forget about the bag, the cards, the cups. What will he start thinking about next? What will be the next obsession? It can be so overwhelming to have to add these things to the day to day routine. Life would be so much easier if I didn’t have to remember to bring the bag full of stuff and could just leave it behind. It’s heavy. Really heavy. Sometimes everything spills out. Sometimes it happens in private and sometimes it’s in public. Sometimes people look at us like we are crazy for carrying these cumbersome and useless things around. But try explaining that to Evan.
So I started thinking about Evan’s obsessions and realized they aren’t so different from my obsessions. My obsessions are just more socially acceptable. I am better at hiding my obsessions. But like Evan I keep adding to my obsessions. There is always the next thing I’m thinking about, worrying about. It’s heavy. Sometimes my worries and obsessions spill out. Sometimes in private. Sometimes in public. Sometimes others look at me like I’m crazy for carrying these worries on my heart. But try explaining that to me when I’m in the middle of it all. Life would be so much easier if I left my bag full of worries behind.
Jesus tells us in Luke 12 not to worry. He’s got this. We don’t need to worry about our life, food, body, or clothes. He’s got it all covered. I can stop the worry and remembering already! Now when Evan needs his bag of goodies I’m trying to remember I am not much different. I’m carrying my own heavy bag along too. We both have something we should be leaving in God’s hands.
Bible Verse I’m Loving Today:
Who of you by worrying can add a single hour to your life?
We say with so many things, “I wish I knew then what I know now”. But this … the love, the joy, the change in our lives that our Evan has brought us through disability … I wish I would have known that on the days after his birth like I know it now.
Birthdays often bring reflection. So as his birthday approached this year I was reflecting on those first days after Evan’s birth. I was remembering all of the things a doctor told us he would never do. Some, yes, he won’t be able to achieve. Others, she had no basis on the day after he was born, to make those assumptions. She had no need to place those burdens on our hearts. It’s a common story from many special needs parents in the NICU (neonatal intensive care unit). We were in a hospital known as a baby factory, not one known for special needs deliveries. Those memories of listening to her words while sitting on the sleeper sofa that I would later spend the night on are ingrained deeply into my soul all these years later.
I would love to meet with this doctor and hospital staff now and give them some insight into the heart of the newly hurting parents. It wasn’t the birth I was expecting and I know my hormones were off the charts to say the least. Believe me, I would first love to apologize to those lovely, patient nurses who bore my wrath. But I would also love to tell the NICU staff, yes, facts are important. Heck, I am a the Google, WebMD, NIH Queen! I want every single detail of those facts. If you don’t give it to me I WILL find it! But what I really don’t need someone else’s opinion on what my child may or may not be able to do decades from that point. The enormity of those words may weigh on us for a lifetime so it’s okay to tell us “I don’t know“.
What I needed to hear was our child would still bring us immense joy and pride. It may be different than we expected. But it could actually be even better than we expected. I wish I had known then that each of Evan’s birthdays would bring me more and more gut-busting pride and thankfulness that God has allowed me on the inside to see Him doing big things in Evan’s life and the lives of the people Evan challenges and changes.
This year Evan has told everyone, EVERYONE, “It’s my birthday!” But he has no idea that I am happier than he is that it’s his birthday …
Bible Verse I’m Loving Today:
For you make me glad by your deeds, Lord;
I sing for joy at what your hands have done.
Song I’m Loving Today:
Natalie Merchant: Wonder