Thursday, March 24, 2016

12 Things You CAN Say To A Special Needs Parent

Miles, 12 Months Old
Lists are so cool right now. If an article isn’t in list form, it isn’t worth reading. Therefore I’m creating my own list. A list with a twist. I have read many posts lately on “The 10 Things You Should Never Say to A Special Needs Parent/ Someone Grieving/ Someone With A Limp/ Someone with A Lazy Eye/ Someone Who Expected More On Their Tax Return/ Someone That Got A “C” On Their Spanish Test." You get the idea. These lists put us all in a precarious situation. We could all easily slip and say the forbidden cliché that our Facebook friend specifically told us not to! The nerve of those that are trying to care.
I have been in one of the above stated demographics for the past year or so and I need to point something out. If anybody puts effort into attempting to bring you words of love or wisdom, appreciate them. It’s extremely hard and brave to come up with the best things to say so let’s not shame each other for the effort. Every “Like”, message, text, cliché remark, hug, lunch, flower, tear means someone is feeling your pain. Let’s celebrate how hardships break down barriers and let us see through the nonsense. Your crappy Spanish test could actually make the world a better place.
1. It seems like God has given you a lot to handle and you are doing it beautifully.
There are times in the midst of hard things it feels like God has given you more than you can handle. That’s because He has. He wants you to lean on Him. If you feel yourself about to say “God won’t give you more than you can handle,” try substituting the above line instead.
2. If I am ever in your shoes, I hope that I maintain the joy that you do.
You feel the words bubbling over. You so badly want to say, “I could never do what you are doing.” And of course you mean this from a good place. The truth us, you could handle it and you would. We are all dealt difficult things and it looks different for everyone. If you admire the way someone deals with their circumstance, let them know!
3. Your child is so beautiful. I would love to be educated on their disability.
No need to run, avert your eyes or say, “Look at that poor child.” We are proud of our kids and want to show them off just as you do!  
4. You seem like you have a lot of love to give. You should have more children!
Sometimes when your child has a birth defect or disability, it’s natural to blame yourself. I have done this to myself a million times. It’s a horrible feeling. Once a woman in my home said to me, “I have never seen anyone look as tired as you. You definitely shouldn’t have more children. Your plate is full.” The truth is, I do want more children. I want them to be healthy but I also just love my babies no matter what. Which leads me to #5.
5. Everything is going to be ok. I promise.
I love saying this to people and I love it when they say it to me. Sometimes parents worry a lot. We worry about our current children and the ones we haven’t even had yet! Let’s keep it encouraging, capeesh?
6. Some days are really going to suck. But then most days are going to be filled with joy.
This is my favorite and was said to me by my friend Ashleigh a day after I got my son’s diagnosis. This sums up everything you should ever say to another human. Affirm their pain and then offer hope. No one appreciates it when you brush aside their suffering. Yet there is no need to dwindle. It’s there and real and we should experience it. And then we should choose joy.
7. There is nothing normal about your everyday life but there is a special meaning for your child’s life.
One of the first things my husband said to me when we knew our son would be born with a disability was, “All I wanted is a normal life.” When I shared this deep fear, we often heard, “What is normal anyway?” Well, seeing your child’s heart stop isn’t normal. Go back to the lesson on #6: Affirm then offer hope.
8. That sounds really challenging but I can see the love in your eyes.
I meet people all the time and it comes up in conversation that I have a critically ill son. “I’m so sorry,” is always response.  Hey, it’s a natural response. I say it to people constantly. But honestly I don’t want anyone to feel sad and sorry about my beautiful life.
9. The suffering of children is hard to make sense of.
Ain’t this one the truth! We don’t know why everything happens but we do know God is in charge. Sometimes bad things happen in this world for no good reason because it’s a fallen world. So let’s skip over, “Everything happens for a reason.”
10. I will be at your house at 10 am to bring you lunch/ pick up your kids/ water your plants/ feed your pet alien/ deworm your cat. I won’t take no for an answer.
This one is very important. At my darkest times, I have found myself turning to the same people over and over again for help. It’s because they were adamant. People lovingly say, “Let me know if you need anything,” but articulating your needs is difficult and embarrassing. I recently walked in to my house while my son was in the hospital and my girlfriends were filling my freezer with food, unannounced. They poured me wine and told me to shower. That’s a good friend.
11. *HUG*
There aren’t always words for everything. There is something powerful in the unspoken. A few days after I had my son, I went to church. My friend came to give me a bear hug and I burst into tears. Her hug made me feel safe. We stayed in that embrace for over 5 minutes and we both cried. I didn’t say anything and neither did she. We didn’t need to. There was pain and no words could help. Let’s all hug each other more.
12. You are a Super Mom.
Say this to every mom you know as much as possible! It gives people all sorts of warm fuzzies!
If you have word vomited the wrong thing to someone or your bestie worked hard to formulate the same words you have heard a hundred times, don’t fret! We are all trying and even if it comes out wrong, hypersensitivity just puts well-meaning loved ones on edge. Don’t discourage the conversation by setting strict rules. Is my son handicapped, disabled, impaired, developmentally behind? Yes all of them and none of them. There is no perfect word and these are just words we use to describe a circumstance, not the true human. Lighten up, hug it out, and keep talking.