Embracing Isaac

 

To every thing there is a season,

and a time to every purpose under the heaven:

A time to be born, and a time to die;

A time to plant, and a time to pluck up that which is planted;

A time to kill, and a time to heal;

A time to break down, and a time to build up;

A time to weep, and a time to laugh;

A time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together;

A time to embrace,

and a time to refrain from embracing. . . .

 

                                    -- Ecclesiastes 3:1-5

 

 

 

            There's a little boy named Isaac who is really tugging at a lot of people's heartstrings right now. He is in pain and very ill. Yet he remains a cheerful, happy, outgoing little second-grader who wins over everyone he meets.

 

            Isaac Barchus (BARK us) is the son of our lifelong family friends. He is one of only eight children in the world with CANDLE Syndrome - Chronic Atypical Neutraphilic Dermatosis with Lipodystropy and Elevated Temperatures. It's an autoinflammatory disease, and yes, you read that right - there are children, but no adults, with CANDLE Syndrome. That's ominous. Even more, Isaac appears to be the one whose condition is the most severe in the world.

 

I believe that, if it had not been for a groundswell of love from his family, friends, school, neighborhood and the entire community, embracing his cause and insisting on helping him and his family, it is likely that Isaac wouldn't still be with us today.

 

So I'm going to ask you to embrace him, too.

 

His school, Sunset Hills, which is also his father's alma mater, and also mine, is selling wristbands in his favorite color, with his favorite word - BRAVE - for $5:

 

 

A boyhood friend of Isaac's dad, another Sunset Hills alum,

who lives in Minnesota, posted this on Facebook.

 

 

People have given him all kinds of accessories for his favorite sport, football. He has met and charmed all kinds of players, inspiring all those little-boy fantasies despite his grave condition:

 

 

He remains a big fan of Ndamukong Suh . . . no matter what!

 

 

His classmates gave him a sendoff party when he had to go away to the National Institutes of Health in Washington, D.C., for several weeks of treatment:

 

 

Balloon launch . . . sending Isaac's favorite color skyward.

 

 

He hates missing school. But his little buddies keep him in the loop through the wonders of Skype:

 

 

Isaac didn't feel left out of Halloween fun.

 

 

His church community put on a big fund-raiser for him that also raised up an incredible 500 new registrations on area bone-marrow transplant lists. That is probably the next step for Isaac, and they think they've found a perfect match:

 

 

There've been pumpkin pickers for Isaac:

 

 

 

Candied apples for Isaac:

 

 

 

Friends of his father, Steve, and mother, Kathë, have put on spaghetti feeds and dropped off meals and gas cards for the family. Tennis friends have run errands. A beloved grandmother is handling all the thank-you notes. People they don't even know have stepped forward with donations. A local banker is routing donations.

 

 A childhood friend called to offer two empty bedrooms in his house in Washington, D.C., for Isaac and Kathë to live in, free, while they were at the National Institutes of Health for treatment and Steve was home with the other three Barchus boys.

 

The family's friends have been there to listen to them, encourage them, serve them any way they can, and whenever possible, make them laugh:

 

 

 

            People have sent encouragement on Isaac's Facebook page:

 

https://www.facebook.com/#!/pages/Isaac-Barchus/166151370132661?sk=wall

 

            . . . and keep up with his medical condition on his Caring Bridge site:

 

http://caringbridge.org/visit/isaac

 

            Examples of their messages to Isaac and his family:

 

 

How you doing buddy? Heard your out of the NIH, thats good :) Hears some ideas if your bored, cause this is what i do, i sometimes read a book like diary of a wimpy kid, and i play the computer on websites like armorgames and addictinggames. I read that your labs are normal, im happy for you, thats really good! Well i thought id just say hi to you and give you some help with your boredness and such.

 

Such great news that you'll all be together for a "true" Thanksgiving!  Isaac can write a little book for Kids on "How to Win at Bingo, Bean Counting and Other Contests."

 

Mother to Mother, my heart aches for you.  I am so sorry that your baby is going through this. I pray for you both to feel God's loving arms around you, walking with you through this difficult time. I hope for sunshine and smiles today. Give Isaac a snuggle from me.

 

 

It's heartwarming to see how the community has embraced Isaac, with all of their love and caring:

 

 

The good thing about hugs for a sick child

is that the child can't see the concern on your face.

 

It has been a roller-coaster in every way, a huge financial crisis, and a spiritual challenge beyond any of the trials most of us will ever face.

 

You have to imagine that his parents are wondering, "Why us, Lord? Why Isaac?" But the Barchus family is incredibly strong, spiritually.

 

Steve points to the fact that Isaac is responsible for 261 new potential bone-marrow donors who registered at his fund-raiser, and shares credit for an additional 180 who registered at a related event. There's also the fact that the pharmaceutical industry has invented a drug just for Isaac that it might not ever have developed otherwise. Closer to home, as they drive through the neighborhood, everybody smiles and waves. Everybody knows Isaac. Everybody is on his team.

 

The father's conclusion is inspiring. "It may well be that his purpose isn't to be cured, but to be the cure for somebody else," Steve says.

 

"I've had a lot of people, even ministers, tell me that they wouldn't blame me if I were totally mad at God. But I say, 'No, no, it's not that way at all. He's already had a tremendously positive effect on other people's lives.'"

 

In other words, who could ask for anything more, for a son, but to influence the world for good as Isaac has? That's a statement with grace and power - spiritual maturity worth embracing.

 

So now it's a waiting game. Isaac wears a mask and can't go to school. He gets bored. He'll be home through Christmas. The hope is that the experimental new drug is working. Perhaps Isaac won't have to go back to D.C. Perhaps, one day, he'll be out playing basketball with his friends, rejoin his classroom, and go sledding and stuff.

 

Or perhaps not. It's an Advent of a different kind. Yes, Isaac believes. His whole family does. But no, they're not ready to let him go. On, they fight . . . surrounded by their embracing community. But even with all the help, it has to be tough.

 

So now, in the spirit of Christmas, I'm going to ask you to do something for Isaac, too.

 

Join the embrace.

 

First of all, would you please pray for him, and his family?

 

Second, would you please send a donation to his bank fund? Expenses are mounting. Any amount would be much appreciated. The address is below. When you do this, please email me the word "Brave" to susan@radiantbeams.org, with your street address. I won't know how much you gave, but I'll take joy in sending you a blue wristband, like the one all Isaac's friends are wearing this Christmas season.

 

Old friends like me are even posting pictures of our wrists wearing the blue band as our profile photo on Facebook, to try to spread the word. It would be great if you would do that, too, once you get your wristband, and share this story and the address to the bank fund with everyone you know.

 

Send checks to:

 

Isaac Barchus Fund

Equitable Bank

10855 W. Dodge Road, Suite 110

Omaha, NE 68154

 

 

Thank you. Merry Christmas! And remember: every embrace for a holy purpose comes back to you double. When you give of yourself to someone who needs it, you're embraced back, bigtime, by the Arms of the Lord. †