Recently, we’ve started having Kelsey walk with her walker while out-and-about more.  She’s been regularly using it to walk into all therapies, church, at friends and family’s houses, and every day at school.  Typically, though, to go into a restaurant or grocery store we will just carry her until we reach whatever high-chair or shopping cart we need.  But in addition to Kelsey requesting her walker more often, we’ve also gotten braver, ourselves.

Honestly, when she uses her walker, it’s like the red carpet is laid out for her.  Let me paint the picture.  Her walker is bright blue with a white basket on the back to store her treasures.  She’s all smiles (still not taking that for granted!) and “good mornings!” even if it’s dinnertime.  She’s a steamroller.  No open-toed shoes around Kelsey Ann when she’s on a mission, people!  Watch out!  With her glasses and AFOs (you can read about them here) as accessories–with-or-without her new, cute, fringe boots–she’s a sight for sore eyes.  So stinkin’ cute.

Luckily all the cuteness is what my brain usually allows my heart to feel.  Especially when we are in familiar territory with people who see her weekly.  It’s just Kelsey.  That’s who she is.

But when new people see Kelsey, I then see her through their eyes.  Everyone treats her like the doll she is, but the pity and subsequent reactions that people make, remind me that she’s different.  It’s a crazy feeling to have on a Tuesday night out-to-dinner.  I can hear 70-something women thinking, “Oh dear.  What a shame. That cute family with such a load.” Or 40-somethings who are still raising their kids who move chairs, hold doors 2 minutes too early, and try to move mountains so we don’t have to suffer one second while exiting Glory Days.  Or hostesses who take their voice to an even higher-than-normal-talking-to-children-octave to fawn over her (well, she is worthy of the fawning).  Or adorable two year-olds who want to take her walker for a spin but are reprimanded by their parents “Don’t play with that! It’s not a toy!”  **My advice–let them play with it.  It makes her less-different if her friends can try it out. 😉

And I can picture you, lovely readers, thinking “I wouldn’t think that!” Yes you would.  And that’s okay.  I do it too.  I have a daughter with multiple disabilities (and a son, for that matter) and I pity others.  Yesterday a grown woman was walking into Old Navy with two elbow crutches and a slow, labored gait and I pitied her. It’s human nature.  I’m sure that woman is more than used to the feelings she imagines from others and is WAY over it.  Respect.  But still, we want people to be okay.  We don’t want to think that anyone, especially this cute four year old, has difficulties–which she does.

But.  We are getting braver.  We are getting used to the trumpets being sounded when we arrive with Kelsey and her walker in toe now.  The looks and comments and over-niceties are fine.  She’s happy.  She doesn’t know a damn bit of difference.  She thinks everyone gets treated as sweetly as she does.  And, I love you for feeling sympathy for Kelsey and for us.  I love you for wanting to hold every door ahead of us for the rest of time to take one, small thing off our plate.   And I’ll happily let you hold those doors.

It does make me aware that we are different when other people show they notice.  It makes me think about the path she didn’t get as a typical child.  It makes me think about the surgery she will likely have to correct her hips.  It makes me think about whether she will have bullies and a wedding and a her own children.  All while trying to order a cheeseburger for dinner.

The good attention does help to lessen the blow of the downhill spiral of my Mom Brain.  Two years ago I never would have dreamed Kelsey would be where she is now.  She will be ok.

Ben, at ten, is still a star when he enters public establishments.  I’ll lean on the fact that  Kelsey will follow in his footsteps. Until then, we will continue to use the walker in new situations.  She is so happy to explore and lead the show.  Like any four year old is.  Any reaction that causes a brief discomfort for me is totally worth it if Kelsey feels able to participate in life.

One added bonus of all this…I can start worrying less about what I look like or if I’m having a good hair day or not.  No one is looking at me when my kids are at my side.  I’m an afterthought. A publicist with the celebrities. And that’s just fine.

Today is one I won’t forget.  I’m pretty sure it’s a day Ben will tell his wife and kids about one day too.  It was that good!

It starts about four years ago when Ben started kindergarten and met an amazing group of boys who would continue to be his buddies each year.  We got to know and love the families and have been so grateful for their friendships. One family, in particular, has been paired up with us each year, in the same class.  They also happen to be very involved in the local football team (the coach/president of the program).  That family came to Ben’s 10th birthday party and came up with a plan.  A plan to have Ben participate in the Winfield Cavaliers homecoming football game today.

Ben was an honorary member and was given his own jersey and gear to play.

He was a team captain and participated in the coin toss.

I think his favorite part was drinking out of the water bottles on the sidelines.

He ran a touchdown with the crowd cheering him the whole way.

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He was loved and cheered and high-fived by his best friends and new friends too…and brothers and moms and dads and uncles there to support their favorite player.

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…and he posed for pictures with cheerleaders (maybe that was his favorite part?)

He even was awarded the game ball.

He got all this because he’s Ben.  He’s a team player and a star.  He may not run as fast or catch as well, but man–he’s got the heart of a winner. And he’s got more fans than he knows what to do with.

One of my biggest fears for my kids is acceptance by their peers.  I’m pretty sure we’ve solidified and grew some friendships today and filled our bucket with acceptance and love.

I have visions of future high school games, watching our favorite players that we’ve known since Mrs. Zumbrun’s kindergarten class.  The Larrick family will be on the sidelines in the months and years to come to cheer on this great group of players, friends and families.  Go Cavs!

Besides making my beloved’s day, I’m so grateful for all the love and support from our fabulous Winfield community.  We are where we are meant to be and it’s an incredible feeling to be this kiddo’s mom.

#suckitmenkes

A year ago (Facebook tells me so), Kelsey was eating lunch and she spontaneously used her PODD to tell me she loved me and to request a hug.  At about the moment I was immersed in my phone and remembering this small (HUGE) accomplishment, current-day Kelsey was saying, out-loud, “Mooommmm, where are you!!????? I want chicken nuggets!”  While beckoning me like a tween, (Mom!? What happened to Mommy?!), she was putting together an alphabet puzzle whilest labeling all letters correctly, producing their sounds and a giving a corresponding word to go with the letter (H. Ha-Ha-Horse!).  Show off!  A year ago I wouldn’t have believed you.  Letters? Sounds? Typical four year old understanding? Not possible. And yes, like some of you I say, FOUR?  Ben was not as adept as his little sis at this whole reading thing at four.  Not even close.

Sure, I shouldn’t compare kids but who doesn’t?  Up until now, despite his life-threatening, incurable disease, Ben has won in the development race.  He was talking before her, walking before her, and potty trained before her.  When Kelsey was diagnosed before she was born (Darkest. Day. Ever), I worried that the baby we had prayed for to take care of Ben would now be taken care of BY Ben.  But now…I’m not so sure.  For the first season of her short life (are you hearing that word ‘season’ everywhere like I am??), I think they both may just be okay. 

I haven’t written in awhile…and so much has happened that I want to share with you; both good (Ben’s 10th birthday!) and bad (Kelsey’s grand mal seizure), but for now I felt called to write for another reason.

When I started this blog, it really was all for me.  I needed a place to illustrate what was going on with our unique family.  I wrote for therapeutic reasons. I wrote to detail what Menkes meant, what it was like to shop for cute shoes that fit over an AFO, and what it felt like to be in the hospital with your child who was having brain surgery.  And I wrote to explain it to everyone from my cousin to my neighbor all at once.  Repeating hard things isn’t easy.

After reading a few of my posts, people said “you’ll help so many other parents like you,” but that’s not why I wrote.  I was the one who needed help.  But lately I’ve been thinking a lot about that mom who has so much on her plate.  The mom who is drowning in fear and the unknown and lack of control.  The mom who doesn’t see the tough situation she’s in changing any time soon.  I want to put it out into the interwebs that there is hope. I so needed to see this post two years ago.  Things were so dark, so sad, so scary and I couldn’t picture where we are now.  I was losing hope.  Things change, the human body and spirit is a powerful thing.  Despite a stroke, hydrocephalus, strabismus, hip dysplasia, and epilepsy, we have a HAPPY, smart, sassy little girl.  Despite having a rare condition with little knowledge of what the future holds, Ben continues to shine and show Menkes Disease who’s boss.

Everything will be okay.  Hang in there.  It will get better**.  It might not be like everyone else (or my story) and it probably won’t be the dream you once had, but it will be okay.

**If you’re that mom, and you need some advice on how to get “there,” email me: kim.larrick@gmail.com.  In the meantime get yourself some therapy, Pinot Grigio and a whole lotta Jesus.  Yep.  I’m that girl now.