So based on our own experiences during the short 4 years along our journey, here some ways you can be an encouragement to families like ours. I'm going to try my best to avoid "do not's", and stick to "do's".
If you are a stranger:
1. Make eye-contact and smile
It's always hurtful to receive stares, but almost as hurtful to be ignored. It's always encouraging when others see Marcus walking in his walker and smile.
Say Hi! We passed by a new neighbor on the sidewalk recently and he asked if he could touch Marcus on the shoulder and talk with him. It wasn't creepy at all! In fact, it warmed my heart. One day at the pool, a mom and her son came over and they wanted to give Marcus a cookie and say hello. That was so sweet and made me feel like we were welcome in our community.
If you see a child acting out, screaming, awfully sick, or just having a bad day, his or her parents are probably not feeling too hot either. I'm sure they would appreciate you opening a door, holding a bag of groceries, or picking up the apples that their son just angrily threw on the floor.
4. Ask politely
I don't want to hide my child's diagnosis from strangers, but it's not always appropriate for me to divulge the information the moment we meet. I don't say, "Hi! This is my daughter, Audrey. She sweats like a wrestler and has a fear of wedgies and oatmeal." Nor do I say, "Hi! This is my son, Derek. He eats furniture and likes to grab himself." Likewise, it wouldn't be appropriate to say, "Hi! This is Marcus. He has cerebellar vermis hypoplasia, retinitis pigmentosa, hypotonia, ocular motor apraxia, speech delay, sensory processing difficulty and an overall diagnosis of Joubert Syndrome."
You probably should avoid, "Dude, what's wrong with your son?" But I appreciate when new acquaintances ask about Marcus because it shows an interest in him and in our family, and gives me the opportunity to share about how wonderful he is.
5. Answer your children's questions with grace
When other kids see Marcus, they often look at him with a curious eye and ask their parents why he's using his walker. And that is totally natural. In fact, if I was a kid, I'd want to know too. Sometimes I hear parents shushing their kids or replying with "uh, uh, uh." But I have eavesdropped on some parents who have responded with grace, helping their children to see that Marcus is indeed special, but is just like any other kid who happens to need a little help getting from one place to the next.
If you are a family member or friend:
Sometimes parents of children with needs go through very trying times and they just need to talk out their feelings without feeling judged. Give them a listening ear. You'll never be able to solve their problems, but just listening to their hearts will bring comfort.
7. Cry with them
Unless you are on your own special journey, you probably won't ever be able to fully understand their heartache. But seek to understand, try to put your heart where theirs is, and take on their burden as much as you can. This will bless them.
8. Rejoice with them
Often, it's the littlest things that bring great encouragement and hope. Celebrate the smallest of milestones with them because it's a big deal in their world.
9. Let them grieve for a long long time
Everyone responds to trials differently. Don't ever put a timeline on their mourning, or judge them for crying too much or not crying enough. (Woops! That was a "dont"!) It's hard enough dealing with their heartache, let alone feeling like they should be grieving the "right" way. If you do have a concern, pray for them for a long long time and encourage them with humility and love.
10. Let them know you're praying
I can't tell you how many notes, emails, and letters we've gotten from people who've told us they'd been praying for Marcus and our family. There have also been people who've come up to us just to let us know that they've been on their knees on our behalf. This has been precious gold to us!
11. Initiate practical ways to help (meals, giftcards, babysitting, etc.)
During dark times, it's very difficult to ask for help. Not necessarily because of pride, but because there is no energy to even wave a white flag. Here are some ways our awesome family and friends have come to our aid even without us asking:
- Setting up meals for us on days we had big doctor appointments (especially when Marcus was first diagnosed)
- Calling to ask "Hey, can we babysit for you guys this Friday night?"
- Inviting our family over for a meal, or just dropping off a meal out of the blue
- Showering us with giftcards
- Secretly gathering money to send us to a conference to meet other Joubert Syndrome families!! (crazy!!!)
- Housing us and feeding us to comfort us after hearing very difficult news
- Offering to take Audrey out and give her a good time, knowing that siblings can often feel neglected
- Sacrificially watching our kids for several days at a time, even during a season when Marcus was agitated, extremely fussy, and not sleeping well.
- Volunteering to be Marcus' one-on-one aide to help him at church, sacrificing their own Sundays... and some of these volunteers have never even met him before!
12. Include them
I love that Marcus doesn't even walk, but was asked by our church to participate in their sports league. I love that Marcus doesn't speak like other kids his age, but was asked to recite a verse at VBS. I love that he was able to be a ring bearer at our friend's wedding, even if meant walking down the aisle in his gait trainer, with Daddy steering it for him from behind.
13. Encourage your children to be friendly, but don't (woops!) beat yourself up if they're not
Your children will learn from your example in how to relate with kids who are different. If you are warm, considerate, kind, and inclusive, they will learn from you. But if your children happen to say something insensitive, unkind, or do something flat out mean, it doesn't mean you're a failure. We all, including our children, have sinful hearts that are still in the process of being molded to our Lord's. Just talk with them, pray with them, and teach them that loving the Lord means loving the "least of these".
Also, don't (woops!) force your children to be friends with the children with needs. Nobody wants a begrudging friend. On the flip side, everybody wants friends who genuinely want their friendship. So encourage them to befriend the "different" kids, but also pray that the Lord will work in their hearts to do so with sincerity. And if that happens, this will be a HUGE blessing. Believe me on this one!
Before having Marcus, I regret that I was entirely insensitive to people going through their journey of suffering. I grew up saying cruel things about people who were different, being coldly insensitive to people who were undergoing trials, and selfishly withholding love from those who probably needed support. Now I'm on the other side, and God has been so gracious. He's allowed us to be blessed by others when I've done nothing to deserve it.
This post is very much a way for me to thank all you who've come along side us. Even the smallest gestures have been a means of grace and God has used you to surround us with His love.