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We are more than halfway through Audrey’s first season of soccer, so I thought it was about time I record how her experience has been so far.
She and her team are the Ladybugs.
The girl is totally into it.
You can’t truly capture from these pictures how much she loves running on the field.
Or how much she’s learning about the game.
But you also can’t tell from these pictures that they’ve lost all 5 games. They’ve made 2 goals the entire season, and have been scored on 27 times.
During the first full game of the season, I looked over at Audrey, worried that she was completely discouraged. But right after the 900th goal the other team scored against us, she screamed, “I. LOVE. SOCCER!” And then I wasn’t so worried.
When the Ladybugs scored their very first goal, Audrey came home and said, “That was fun! I hope we win again!” Mike and I looked at each other, silently exchanging, “You tell her. No, you tell her.” And then one of us broke the news that we didn’t win the game. In fact, we probably lost 12 to 1.
I wish you could have seen how the girls screamed and hugged each other after the 2nd goal one of our girls made a few weeks ago. The parents were also jumping out of their seats, I was a little teary-eyed, and we all thought we made it to the World Cup.
But what we lack in skill, we make up for in fun.
My little Ladybug, I love how you run and then turn to ask, “Daddy, am I really fast?” I love how your shin guards barely wrap around the soccer calves Daddy gave you. I love how you push the girls on the other team who aren’t even close to the ball, and then look at Daddy, so proud of yourself for being aggressive. I love how you gulp down your water during breaks like you are literally dying of thirst. I love how sticky every inch of your body gets after the first 30 seconds of each game. I love how you and Daddy get to spend so much time together on the field and how you giggled when he told you there was a soccer player named Hans Jorg Butt. I love the soccer legs and the soccer booty you’ve had since birth. I love you, Auj!
I normally don’t blog when I’m sad. I usually journal about it privately and wait till the joy creeps up again to blog about the sadness in hindsight. But today, for some reason, I just feel like being a little more raw before you, my family, my friends, people I know but have never met, people I don’t know at all.
The other day, Marcus and I were reading about Jesus healing the blind man. I asked him if it was easy for him to see or hard for him to see like the blind man. He said, “Hard.” Then he said, “I can’t see in the dark.” For the past 6 months to a year, Marcus has been saying more that he’s scared of the dark and that he can’t see in low light conditions. This isn’t surprising considering his Retinitis Pigmentosa. But we can’t help but wonder if it’s getting worse, or if it’s that Marcus’ speech is just emerging enough for him to express to us what he’s been seeing or not seeing all along.
In any case, it’s a rude reminder of what the doctor has told us…that Marcus’ eyes have very limited function and that he will eventually lose the vision that he has.
I’m so sad. I ache. I feel weak and burdened. My heart is weary from all that Joubert Syndrome entails and how it’s affecting all the other families we know. I wish the Lord would come right now to take us to our eternal home, where Marcus will be able to run, sing, jump, and SEE the beauty of His maker. I long for Him to come and rescue me from this perpetual burden, to take me to where He is, so I could just lay in His arms and worship and rest.
Praying the Lord will keep me convinced of this promise:
For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.
– Romans 8:38-39
My sister sent me this Charles Spurgeon devotional and I was encouraged by it:
There are many articles out there addressing what not to say and what not to do when interacting with a family who is caring for someone with special needs. And I’m sure I could add to those lists as well. Who knows? I may even write a list of my own, as we’ve had our own share of discouraging and anger-provoking encounters with people who thought they meant well. But today, I feel compelled to jot down ways we’ve felt encouraged and supported by others as we trudge through the thick, muddy and often lonely waters of special needs.
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.
Forgetting our sand toys at home and making do with what we found in the car
Feeling unsure about sand
Having fun anyway, since CA Grandma was there
Calling a sick day on the first major rainy day of the season
Not looking too sick to me
Staying inside to play on the floor
And ending the ditch day with the Trader Joe’s pumpkin bread mix that I could have eaten all by myself
Crawling into the “do not enter” zone…again
And not making eye contact due to baby guilt
Spinning Ordering us to spin the top he got from the dentist’s office for hours at a time
Having the ladies take Big Poppa on a cruise around the neighborhood
We inherited a new instrument from our church friend, Auntie Donna. I would have never imagined we’d add this one to Marcus’ growing collection of musical toys.
But now we are proud owners of a mini-accordion. I wish I could have caught on film his initial reaction to seeing it on Sunday. Just imagine gigantic toothless smile, bouncing knees, high-pitched squeal, and a desperate attempt to get rid of the half-eaten beef jerky in his hand so that he could touch the keys.
On the whole ride home from church, he talked about how much he wanted to play it when he got home. “It’s so beautiful,” he admired. And play it when he got home he did. From 2:30pm until he went to bed, he went to town on that thing, with only two 20-minute breaks for a snack and dinner. The kid was focused. His arms were probably sore.
But did he care? No. Because after his last bite of breakfast the next morning, he went at it again.
Please acknowledge that there are sound effects to these pictures. This instrument is LOUD. And not only that, since he doesn’t know how to really play it yet, it sounds like a haunted version of the Disneyland carrousel. I was on some business calls while he was playing and had to yell in order for the lady on the other line to hear me with my son’s crazy polka music bumping in the background. And I was a little scared when the drywall estimate guy came over later that day, praying that Marcus wouldn’t pick it up and decide to do a little recital for the stranger at our house. Thankfully, he didn’t and it spared me having to shout at the man so that he could hear me while Marcus was oompa-pa oompa-pa-ing in the living room.
Everyone got their turn with the new instrument. Marcus let Audrey have a few turns and even let Derek admire it from afar. He was very interested, hence the curled toes.
I thought he was gonna try to play it too.
But it turns out he just wanted to suck on the metal buckle while his brother moved the instrument back and forth.
And my favorite example of how this accordion is bringing our family together? The average man will spend his Monday evenings watching football on the couch with beer in hand. Not my husband. He spent Monday night having to play the accordion for his son.
As for me, I’m gonna go to bed now and get ready for day 4 of Oktoberfest tomorrow.
I wrote this post a few years ago truly not knowing if Marcus would ever learn to speak. Well, the Lord has yet again answered abundantly and now, at age 4, he is a jibber jabber machine. I never thought I would have to ask him to stop talking, but these days, I’ve even been requesting more “silent time” from him. And it makes me giddy.
Here are some of the latest speech highlights:
“I want to go to the deep dark woods tomorrow.”
Me: Marcus, why do your feet stink so much?
Marcus: (Toes in his nose) Smells like flowers.
His tone can sometimes be Godfather-esque.
Me: Marcus, what did you do at school today?
Marcus: I don’t know. You tell me.
Me: (Helping Marcus after going potty) Eeew, Marcus. Your poo-poo stinks.
Marcus: I want to smell it.
Me: No! That’s gross!
Marcus: I want to smell it!!
Then he makes me help him bend over the toilet to smell the yuckiness.
Me: (doing a silly Mommy dance)
Marcus: (giving me the hand) Stop. Stop dancing.
Marcus: Because I don’t like your dancing.
Me: Marcus, eat your pizza, please.
Marcus: Use your fingers and put it in my mouth.
Now that he’s learning to talk, I guess I should teach him some manners too.