Joubert Syndrome has brought us in contact with people all over the world. For most of us, the only thing we have in common is the molar tooth sign on the MRI that gave our child the dreaded diagnosis. Other than that, there would be nothing else that would have our lives cross. Mike and I belong to a Facebook group of JS parents around the globe who share their children's latest milestones as well as their concerns, and more often than we'd like, who mourn with each other over the loss of some of these beautiful, precious family members affected by this ugly condition.
This group of people is the most loving and supportive group I've been associated with outside of family and church. But several times, I've contemplated removing myself from the list because I would often be so burdened by what other families were going through, that I would struggle with anxiety and sadness even if Marcus was doing well. But I'm thankful for remaining in this network of parents even if my activity level is minimal. It's an incredible high to watch videos of the preschooler just learning to crawl, or to see a young man participate in the Special Olympics, or to read a Facebook status saying their child's medication dosage has been lowered after a kidney transplant. And what a privilege it is to pray for the parent and her child who had to spend Christmas in the ER or worry with the mother who is anxious about her son's latest labwork, and plead to God for the nonverbal child who won't stop writhing in some unknown pain.
A few days ago, a family in Louisville, Kentucky was featured in the NY Times. The father, a high school physics teacher, makes a daily impact on his students not only with his incredible teaching style, but also his sincere love for them. This father, Jeffrey, has a son named Adam who has Joubert Syndrome. After watching the video of their family and seeing Mr. Wright care for his son, I couldn't stop crying for about an hour. Many thoughts fought for my attention at once. Top three: I'm so thankful for Marcus. This family is beautiful. I'm honored that they could represent our small group of ailing, sad, yet triumphant people.
But the chord that struck the strongest in my heart was that the world gets to see the weight that our hearts carry. Marcus does not suffer at all like Adam. He has come such a long way from his self-injurious behavior that plagued him in his younger years. He is able to talk and play and even walk now. But for me and Mike, a good portion of our trials is watching and praying for others who really are faced with the daily hell of seeing their loved ones suffer so profoundly by the same rare condition my son carries in his genes.
So now, many more beyond our quaint little group get to peak in and see what Joubert Syndrome is all about. And really, the Wright family show us the beauty in what most of the world would look upon with pity and fear. Jeffrey's undying love for Adam and Adam's equally fierce love for him is so evident, even through the helmet, the wheelchair, the sign language, and the perfectly intelligent and able young man trapped inside his uncontrollably jerking body.
If you are reading this, please watch the video. You will be amazed and astounded that such a beautiful family exists. I'm honored that they could represent a little group my name belongs to. I'm honored to know so many like them.
Friday, December 28, 2012
Wednesday, November 21, 2012
Forget-Me-Nots
The turkey is brining in the fridge and the kids are all washed up and in their PJs watching Charlie Brown Thanksgiving with fresh ice cream mustaches on their faces. Audrey checked the clock every 5 minutes until 8 o'clock and now, she and Marcus have been cracking up at the same silly parts, just as they do every year. I don't ever want to buy these episodes on DVD because the fun of catching them on TV for every holiday season is something even I look forward to.
I'll leave a more profound list of thanksgivings for another time. For now, I've got a few family forget-me-nots that make me smile and make me thankful for even the small and quirky things.
1. When Audrey sings in the shower, her original songs always sound like a collaboration between Rihanna and Lady Gaga. She'll take three words and create a melody that is loudly repetitive and annoyingly catchy.
2. Derek's graduated from "_______-sauce" and has added quite a bit to his vocabulary recently. Fruits and vegetables and the ABC song are his new obsessions. When meeting new people or when he wants to join in on a conversation, he might list off different letters of the alphabet or "banana, apple, melon, yellow pepper, or green one."
3. The ABC song being a major preoccupation lately, that's all Derek wants us to sing for him. Apparently, the lyrics are always on his mind. Yesterday, I gave him a yogurt stick and he was so excited, he exclaimed, "NOW I KNOW MY! NOW I KNOW MY!". It would have been easier to just say, "YAY", but this was obviously a more appropriate interpretation of his emotions at the time.
4. After talking to other mom friends, there's apparently an OCD phase of development for 2-3 year old boys. One friend told me her son had to hold a spatula wherever he went for a year and a half. When he got into trouble, his parents would say, "Son, you need to obey or we're gonna take your spatula away!" Another friend told me her son MUST hide random knick knacks in his family members' worn socks and even sleep holding these stinky socks stuffed with coins and marbles and such. This news has comforted me and now I don't think it's weird that all Derek wants to do all day is hold armfuls of fruits or vegetables. I bought a yellow bell pepper the other day just for Derek to hold and then I found it in the toy bin at the end of the day.
5. Marcus has been wiping his mouth after I kiss him lately. I finally asked him why and he said it's because my lips are too big. Now, he makes me pinch my lips together really tight so that the least amount of lip surface area touches his. Sad.
6. Audrey shares the same lip volume as I do. Mike told me that when he kisses her, he feels like he's kissing another woman.
I'll leave a more profound list of thanksgivings for another time. For now, I've got a few family forget-me-nots that make me smile and make me thankful for even the small and quirky things.
1. When Audrey sings in the shower, her original songs always sound like a collaboration between Rihanna and Lady Gaga. She'll take three words and create a melody that is loudly repetitive and annoyingly catchy.
2. Derek's graduated from "_______-sauce" and has added quite a bit to his vocabulary recently. Fruits and vegetables and the ABC song are his new obsessions. When meeting new people or when he wants to join in on a conversation, he might list off different letters of the alphabet or "banana, apple, melon, yellow pepper, or green one."
3. The ABC song being a major preoccupation lately, that's all Derek wants us to sing for him. Apparently, the lyrics are always on his mind. Yesterday, I gave him a yogurt stick and he was so excited, he exclaimed, "NOW I KNOW MY! NOW I KNOW MY!". It would have been easier to just say, "YAY", but this was obviously a more appropriate interpretation of his emotions at the time.
4. After talking to other mom friends, there's apparently an OCD phase of development for 2-3 year old boys. One friend told me her son had to hold a spatula wherever he went for a year and a half. When he got into trouble, his parents would say, "Son, you need to obey or we're gonna take your spatula away!" Another friend told me her son MUST hide random knick knacks in his family members' worn socks and even sleep holding these stinky socks stuffed with coins and marbles and such. This news has comforted me and now I don't think it's weird that all Derek wants to do all day is hold armfuls of fruits or vegetables. I bought a yellow bell pepper the other day just for Derek to hold and then I found it in the toy bin at the end of the day.
5. Marcus has been wiping his mouth after I kiss him lately. I finally asked him why and he said it's because my lips are too big. Now, he makes me pinch my lips together really tight so that the least amount of lip surface area touches his. Sad.
6. Audrey shares the same lip volume as I do. Mike told me that when he kisses her, he feels like he's kissing another woman.
Monday, November 19, 2012
The Past Month Or So
It's amazing how differently things look when you look back on them. Although I remember feeling a bit more stressed than usual since the beginning of September, it's nice to look back at pictures and think "You know, it wasn't that bad. In fact, things turned out okay and it was actually fun." All that to say...the Lord sustained us as usual. He is our constant and despite my ups and downs, He never changes. For that, I am so grateful.
As I look back on all the gifts from above, here's a Big Fat What We've Been Up To Lately:
Getting to know Derek better during our mornings alone.
So far, I've learned that he is Top Model material
And that he must always have a beverage on hand, just like Daddy and Auj, the reigning king and queen of thirst.
Getting some fresh air during Audrey's soccer practices.
Seeing Marcus grow so much as a kindergartner.
We had parent conferences recently and were so happy to hear that the kids have been a blessing to their teachers. Academically, they are doing well, but we were so thankful to hear that they are both doing well socially too. I might have cried a little when we heard that Marcus has an "entourage" at school who he has snack with and plays games with. There are a few kids in particular who have an affinity for him and this just makes our hearts overflow with thanks to the Lord.
The kids are liking school and LOVE their teachers, but we might have ditched school one day just to be together.
We did lots of soccer game watching.
Correction: I did a lot of babysitting, breaking up fights, and shoving the boys with treats so as to avoid tantrums on the sidelines.
Then came the fall harvesting. Now, I think the only reason Mike's mom comes over is to stock up on her persimmons. J/K. Kind of.
We did some bridal showering for Miriam, Mike's sister, who is getting married next month! Woohoo!
Derek turned 2 and we had an impromptu little birthday celebration for him at home.
This year's Halloween was probably the most fun ever.
I'm not sure if it was because the kids were older or because I was reliving my childhood through them, but I remember thinking, "This is REALLY fun. I hope my kids remember this."
But perhaps the only person that had more fun than me was CA Grandma. Was she doing a rain dance in the middle of the pumpkin patch with her favorite grandchild? Yup. Uh huh.
Trick or Treating in our neighborhood was the highlight for me.
As soon as we got Derek to stop screaming in unbridled excitement, we headed out and collected our loot while falling more in love with our little community.
Note to self: always buy glow sticks for the after-party. They were a huge hit.
After Halloween, we did a little nature exploring.
And again with some friends.
Derek's been bonding with Cousin Norah.
And hopefully bonding with his Mama too.
And finally, we've been re-acquanting ourselves with our backyard after the late September heat finally bowed out and the crisp fall weather set in.
Thanksgiving is this week, which is the perfect frame in which to set these snapshots of the past month or two.
Every good gift and every perfect gift is from above, coming down from the Father of Lights with whom there is no variation or shadow due to change.
James1:17
As I look back on all the gifts from above, here's a Big Fat What We've Been Up To Lately:
Getting to know Derek better during our mornings alone.
So far, I've learned that he is Top Model material
And that he must always have a beverage on hand, just like Daddy and Auj, the reigning king and queen of thirst.
Getting some fresh air during Audrey's soccer practices.
Seeing Marcus grow so much as a kindergartner.
We had parent conferences recently and were so happy to hear that the kids have been a blessing to their teachers. Academically, they are doing well, but we were so thankful to hear that they are both doing well socially too. I might have cried a little when we heard that Marcus has an "entourage" at school who he has snack with and plays games with. There are a few kids in particular who have an affinity for him and this just makes our hearts overflow with thanks to the Lord.
The kids are liking school and LOVE their teachers, but we might have ditched school one day just to be together.
We did lots of soccer game watching.
Correction: I did a lot of babysitting, breaking up fights, and shoving the boys with treats so as to avoid tantrums on the sidelines.
Then came the fall harvesting. Now, I think the only reason Mike's mom comes over is to stock up on her persimmons. J/K. Kind of.
We did some bridal showering for Miriam, Mike's sister, who is getting married next month! Woohoo!
Derek turned 2 and we had an impromptu little birthday celebration for him at home.
This year's Halloween was probably the most fun ever.
I'm not sure if it was because the kids were older or because I was reliving my childhood through them, but I remember thinking, "This is REALLY fun. I hope my kids remember this."
But perhaps the only person that had more fun than me was CA Grandma. Was she doing a rain dance in the middle of the pumpkin patch with her favorite grandchild? Yup. Uh huh.
Trick or Treating in our neighborhood was the highlight for me.
As soon as we got Derek to stop screaming in unbridled excitement, we headed out and collected our loot while falling more in love with our little community.
Note to self: always buy glow sticks for the after-party. They were a huge hit.
After Halloween, we did a little nature exploring.
And again with some friends.
Derek's been bonding with Cousin Norah.
And hopefully bonding with his Mama too.
And finally, we've been re-acquanting ourselves with our backyard after the late September heat finally bowed out and the crisp fall weather set in.
Thanksgiving is this week, which is the perfect frame in which to set these snapshots of the past month or two.
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