Menkes Moms

This weekend, I have the awesome opportunity to travel to NYC with some fellow Menkes Moms (MMs).  These ladies and I have become very close over the last few years, and it’s all (well mostly) due to Menkes.

Besides the killer plans we’ve got in store, I wanted to share a little about this fabulous bunch.


That beauty on the far left is our fearless leader…and that should not be taken as a cliche’.  Jamie Eckman is the president of The Menkes Foundation.  She’s fearless. And she’s badass.  Jamie’s been spreading love, hope and awareness about this horrible disease since the passing of her beloved son Wesley, whom she calls her soulmate.

Jamie and her husband Drew started the foundation that has done so much for so many boys and their families.  I found Jamie through their website when Ben was about two.  Until then we avoided Menkes on the Internet like the plague.  But when Ben was stable, I started searching and found this beautiful lady and her foundation.  Dave and I hosted four golf tournaments to raise money for their foundation.  And over the years we have become very close.  It just so happens that Jamie and Drew live in Maryland too.

Next to Jamie in the picture is Heidi Berlin.  Now this you’re not going to believe.  So get ready.  Heidi and I were friends BEFORE Menkes.  Before kids.  Before marriage.  Before I even knew Dave…I knew Heidi…who married Dan…who went to high school with Dave.  Did you get all that?  My Dave knew her Dan from high school, and I knew her Dan’s friends in college.  So I knew Heidi.  Keeping up?  After post-college days of parties and football games, we each got married and had blonde haired, blue-eyed handsome devils-of-sons (one month apart, I might add).

Ben and Adam were buds

If you know my story, you know that we were warned about a Menkes diagnosis when Ben was three days old.  It wasn’t until Heidi’s Adam was one year (and one day) old when Menkes began to rule their world.  Heidi and I were in close contact after that and I’m so thankful for her friendship.  Heidi, like Jamie, lost her precious Adam in January of 2014 at almost six and a half years old. All of us could learn a LOT from Heidi.  She likes to say, when she gets the dreaded, “You’re so strong!” that “LOVE is Strong.”  I love that.  And I love Heidi.  Heidi and Dan also live in Maryland.

The last lady I’m so thankful to know in that first picture above is Allison Delano.  Allison does NOT live in Maryland.  🙂  She lives in Atlanta with her husband Bryan and their two kids: John and Reese.  John, as you probably guessed, has Menkes, as well.  Apparently (and I’m fuzzy on the details), Allison did a fair amount of stalking of Ben and us during their early days of Menkes.  I’m so very thankful for Facebook as it brought Allison (and many other MMs to me).  Allison is HILARIOUS and sweet and such a good friend to have for such terrible reasons.  All of us Menkes Moms are so thankful for each other, but we really wish we’d never met because that would mean we would never have had to look for others suffering like us.

During a summer visit of these three fabulous ladies and I, we decided we needed a girl’s trip to laugh and love and live in honor of boys.  We decided November, Menkes Awareness Month, would be the perfect time to visit New York City.  The details came together quite quickly and all-of-sudden, the trip is here!  And I can’t wait to share our plans with you!

This Friday, the other two MD gals and I will take the train to meet Mrs. ATL in NYC.  Our first item on the agenda (after some lunch and cocktails, of course) is to see The Tonight Show and laugh with Mr. Jimmy Fallon, himself!!!  We are SO EXCITED!!  Next up after that is to be a part of the Today Show crowd and spread a little Menkes LOVE! Hopefully you’ll be able to see us, if you care to, in our Menkes Blue and Copper shirts and signs!  We’re also going to do a little shopping, a little eating and drinking, and a LOT of laughing.  Probably a fair amount of tears, too, as we come together to share a bond that is so special and unique and full of emotion.

So set your DVRs, people: Four Menkes Moms Take On NEW YORK CITY!  This weekend.  Brought to you by NBC and The Menkes Foundation.  😉 Hehe.

Copper Love

In case you hadn’t heard, November is Menkes Awareness Month. Copper Luck and Hope has been overly focused on Kelsey Ann, as her challenges have been ruling our family for her two and-a-half-years. November also happens to be Epilepsy Awareness Month (coinkinkydink). September (when Ben, Dave and I were born) is Hydrocephalus Awareness Month. And May (when Kelsey was born) is Stroke Awareness Month. Since her ailments are represented throughout the year, we’ve managed to pay homage without even trying! Go us!

Okay back to Ben. At this point “Ben’s Story” is old news. But in case you haven’t heard, here you go. It’s a good one full of drama and intrigue and a little bit of miracle, so it’s worth rereading. 😉

His written story is a bit outdated as I started this blog and neglected the updates to that first chapter. So I thought I’d spread awareness by discussing his current struggles and accomplishments. Let’s start with the good, shall we?

Ben is in all regular education classes in the second grade. Math is his stronger subject and the rumor is he scored 100% on his latest math assessment. He also managed a 97% on his science test on insects! Ben has many buddies in school, and since he’s been there since he was just 3 years old, he is well known and liked by many.

Ben is also a Cub Scout. He loves all the adventures scouting provides. He just recently learned to ride a bike! Balance, endurance and coordination are among the areas he has challenges in, so this is a big feat for him! Even with training wheels.

Ben loves animals, toys of every kind and has an incredible imagination that I hope he never loses.

Just like his family, he’s a great eater, never stops talking and is affectionate and very sweet.  “He’s always smiling” is a usual compliment/comment we hear. And it’s true. He takes great joy out of life!  Which is a characteristic many strive for…and which we definitely take for granted but are still so thankful for…especially after his sister came along and wasn’t so perpetually happy.

Ben’s latest struggles center around being 8! He’s stubborn, insistent, and has been driving us bonkers for two months!  He’s waivering between wanting to be so independent (as any 8 year old would be) but being so inherently needy because of his challenges from Menkes.  That’s right.  You read it right.  His biggest struggles have little to do with his disease.

For awhile now, I’ve really struggled with where we fit in.  We don’t “fit” with all our friends (GOD BLESS THEM) and their kids who are typically developing kids.  We don’t really “fit” in with the Menkes crowd either.  There are a few (4!?) kids who are his age, with his level of “success” (with the copper treatment he received).  But all of them live elsewhere and individually, like Ben, have their own hurdles to jump.

So we do our own thing.  It’s always been our way.  Learn Menkes from Ben…not from others.  It’s been the same with Kelsey.  I’m not a mom who researches everything and becomes an expert in what ails my children.  Because, quite frankly, a lot of that scares me.  So, I lean on my optimist of a husband, my miracle of a son, and our “village” who raise me up and give us what we need.  And, as I age and grow, I’m learning to trust the plan that has been given to me.  That what we have is right and will work out.  Whether I worry and research myself silly or not.  I doubt it, and despair upon it, about every other day, but that’s the gist…and what I strive for.

But I digress.  Ben’s “struggles.”  I hesitate to share his deep down, real Menkes struggles now as he is in school.  And parents of his buddies read this.  And we’re at the age where people notice, realize, and wonder what’s up with him.  And the bullies are close.  I don’t want to make anything worse than it will already be.  I only want to help and foster an understanding of what he’s going through, by writing this blog.  And maybe, spread awareness, so that others may read this…tell someone…and heal or learn from it.  And through all that, I heal…and can march on.

Ben still struggles with bladder complications as a result of the excess copper he had in his system from participating in the study at NIH for his first three years.  We are AMAZED at where he is as compared to 2 years ago, but it’s still a daily battle.  I’ll leave it at that.

He fatigues very easily as compared to typical eight year olds.  He doesn’t sleep soundly and tires from what comes easily to all of you reading this.  As the developmental pediatrician nailed immediately, when we saw him 7 years ago, Ben’s biggest battle in life will be fatigue.  His endurance for everything is lower, which makes daily tasks harder.  Reading, writing, dressing, bathing, walking, running, learning, eating, sleeping…it’s all harder.

But despite all the odds…he’s doing it.  Hell (pardon my French); he’s KILLING it.  Everything he is doing, he is re-writing the textbooks on Menkes.  And he wasn’t supposed to.  If you look at his genetic deletion.  If you look closely (doctors tell us), he SHOULDN’T be a success story.  But he is.  He’s a miracle.  Watch out world.  Here comes Ben.