The other night my son and I were working on his thank you’s for his birthday parties. I’d fill out the card for him since there was limited space and then give them to him, tell him who they were for and he’d sign the card. When we got to his uncle Jason’s I told him this one is for uncle Jason. “What did he get me?” I told him he sent Johnny a card last month when he actually had his birthday. “Oh, which uncle was he again?” So I told him he was in the wheel chair. “Oh yea! I remember him. Mom why is he in a wheel chair? Why doesn’t he say anything other than hi? Is he crazy?” HOLY CRAP! I had a feeling these questions where coming sooner than later. And for some unknown reason my mind decided to go on vacation at that moment. AHHH I drew a total blank, I was like a deer in headlights all I did was sit there and say “um, well” then sat there for a minute longer trying to collect my thoughts and process all the questions he just asked. THIS SHOULD BE EASY FOR ME! But at that very moment it wasn’t. I wasn’t prepared for it. So I started with the easiest question. “No, he’s not crazy he has a disability.” Ha! Nailed it “what’s a disability?” Bah I thought I nailed it then he has to side swipe me again. COME ON JEN YOU CAN DO THIS!
I should probably give you a little background on Uncle Jason. He is my twin, he was diagnosed with multiple disabilities when we were younger, I think around 3. He has cerebral palsy, mental retardation, and is developmentally delayed. So he struggles with walking, hence the wheel chair, he has seizures, and he needs to have 24 hour care because he has the mentality of a 3 year old. It’s all I’ve ever known and haven’t really ever had to go in-depth about him to people. All I’d have to say is he has seizures and can’t walk well and that was usually the extent of it. So now I have this little inquisitive mind that isn’t totally developed or understands some “big” people words and there was no dodging this because he just sat there looking at me waiting for an answer. Ok let’s go to the next easy question. Why is he in a wheel chair? So I thought of the best way of explaining that, “Jason is in a wheel chair because he can’t walk very well. His muscles aren’t strong enough to hold him up really well. He also gets a little nervous if he can’t feel where something is when he walks so he will try to sit down.” Ok two questions down two more to go. What’s a disability? I couldn’t figure out how to explain it and just when I was about to look up how to explain a disability to a child my brain returned from vacation and I came up with “Johnny, you have a learning disability because you had a difficult time learning how to talk. When you have a difficult time with certain things all the time sometimes they will say you have a disability.” I couldn’t tell if that clicked or if that totally went over his head. “Well why does he only say hi? my sister says more than him.” I didn’t even really have to think about it since my brain had returned. “Because God made him different, because God makes everyone different, Jason is just a little more different.” He had the biggest smile on his face “so he’s special!?” Exactly! phew.
Now why that had to be so difficult I don’t know. I was a little blindsided by it and figured I was prepared for it. Apparently I wasn’t. The older he gets the harder the questions are going to get and are getting, it’s just a matter of finding the right words to explain or answer those questions. I’m also starting to learn that sometimes finding the right words isn’t easy. He’s still so young and doesn’t understand every word I throw at him. So every once in a while I find myself having to do what I used to have to do when I was talking to a client while working at the clinic. If you start talking medical to someone who doesn’t have a clue you totally lose them. They write the words down to look them up later, they ask you what that means, so after having to explain medical terms to people multiple times you learn to “dumb” it down, per say. Make it into simple terms so you don’t lose people. my husband has discovered when he talks “car” to me he has to explain things completely different or it is WAY over my head. These instances shouldn’t be any different really. But when he asks those questions that you’re not prepared for and he asks so many in a row it tends to throw me off my game. I’ve tried to mentally prepare myself for those questions that I know he is going to ask. He’s already asked me questions that I’ve had to make up on the fly. The one day he walked in on my husband and I watching Orange is the new Black and someone was having sex and I seriously couldn’t turn it off fast enough. “What are they doing?” I hear this little voice say. AHHH! why is it when you want to turn the tv off normally it does it no problem, but when you want to turn it off like right now it doesn’t? “What are you doing down here your supposed to be asleep?” was my response as my husband is walking him to the kitchen. “What were those people doing dad?” He was not going to drop this. “That is what adults do to make babies.” where the words I heard come out of my husbands mouth. Our son must not have totally believed him because he asked me if it was true. I reassured him that yep, that’s what adults do to make a baby. “so they wrestle?” “YES!” my husband looks at me like really? WHAT?! I gave him a look back like, man just go with it. Then he dropped it and went back to bed.
Reba put out a song in 1999 titled What Do You Say, and the chorus truly hits the nail on the head. “So what do you say in a moment like this, when you can’t find the words to tell it like it is? Just bite your tongue and let your heart lead the way.” I feel like that’s the only way to handle a lot of the questions he’s going to throw at us. I want to be as honest I can with out terrifying him or confusing him, but have to find away to make it age appropriate. Sometimes I’ve noticed if I stop trying to figure out how to explain it to a point where he’ll understand and just listen for a minute to my heart God pipes up at just the right time with the perfect answer for me to give him. I may not always have the right answers for him and I may not even have an answer for him, but I am determined to find one for him. And if I continue to look to the Lord for help with those difficult questions I think we will be ok. The right words are there, you just have to find them.