Kelsey had surgery on both hips/legs on Monday.  Her recovery is going quite well.  Here is the update I shared on Facebook.

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Things tend to happen all at once for our family.  We are a week away from moving into our new house (knock on wood) and eleven days away from Kelsey’s double hip surgery.  If you’re good with word problems, that’s a four day period to move, unpack, settle, and briefly enjoy our dream home before heading to our 5 day stint in the hospital for a surgery that will likely change everything.  It’s all got this organized/everything in it’s place/must put everything in hotel drawers immediately upon arrival-even if it’s for a one night stay-girl a bit frazzled.

This spacing was not our desire or intention at all.  In late November, the surgery was scheduled for 1/22/18.  This seemed reasonable because at that point we thought we’d be moving in by the first of the year and would have a good three weeks to make the transition. Always looking on the bright side, we thought “how lucky for us that we will move into our accessible home in time for the desperate need of a ramp, bedrooms on the main floor and an open concept for Kelsey’s wheelchair that she will come home with.”  Stick with me but this is still something to be so grateful for.

At one point the estimated move in date was Halloween…then it was Christmas…then the first of the year…and here we are still at 4729 Buffalo Road on January 11.  If you’ve built a house before, you know that a move in date is a suggestion more than a fact.  One that has required us to dig through a storage container for packed winter coats, Christmas decorations and humidifiers because we had packed them in anticipation of not needing them until we were settled in our new house.  Note to those packing for an upcoming move:  Never pack all seasonally necessary items until you have the moving company booked.

Anyway, surgery never seems to fall at a good time for us.  Or anyone I’m sure.  There’s never really a good time to cut one’s body open.  Especially one’s child.  After years of staying home with Ben when he was a baby, I went back to teaching when he was four years old.  I wasn’t even finished the first quarter of the school year, and he was all-of-a-sudden going to have major surgery.  Navigating sub plans, parent conferences, a week in the hospital, and a week of recovery with your baby is not desirable.  But, we did it.  My principal was super supportive, Ben healed much faster than we anticipated, and the surgery worked.

Then, it was time to add Kelsey to the mix.  Even though Kelsey was born five weeks early, we had an inkling that I’d need to deliver earlier than planned after finding out she had suffered from a stroke and hydrocephalus during an MRI in my last trimester.  I should note that this was the very next school year…my poor coworkers!  This mom has no business working.

See the beginning of Kelsey’s story to jog your memory.  On 5/10/13 I delivered our adorable pink baby!  So here I was healing from a c-section with Kelsey in the NICU, and-not 24 hours later-Ben broke his leg during a trampoline accident.  Only we didn’t know (b/c urgent care missed it) that it was broken! <<Side note:  It would be four months before Ben was casted (booted after a subsequent stress fracture in his foot) and completely healed.>>

So I was healing in a hospital bed, Ben was a lot of pain and immobile at home with his grandparents, and Kelsey was in the NICU awaiting her first brain surgery.  This was one of the most challenging times for me as a mother, but as I’m sharing my side of things, I’m forced to realize that maybe it’s Dave who should be telling this story.  Holy Moly that’s a lot for one dude to handle.  All three of his loves in pain and living apart.  He’s a keeper.

Now fast forward and here we are.  Moving is stressful for any family at any time but it’s also much more exciting surgery-side-helping than parent conferences or a child with an undiagnosed, broken leg. The part that makes us sad is that we’ve been building this house for over a year.  We broke ground in April but we had been designing it long before that.  And as soon as we move in we will be have to do something we really, really, really don’t want to do–including leaving our beautiful house.

But, this too shall pass.  And hopefully it will all be easier than we are building it up to be.  It will be a long recovery period, and I’m thankful that a good bit of that will include returning to and recovering in our new home.  Continuing my Pollyanna outlook, I’m glad this is all happening in winter.  If there’s a time to be inside healing from surgery it’s when everyone else is stuck inside too.  The NICU/Broken Leg Saga was TOUGH for so many reasons, but also because it was during the summer. We missed out on a lot of fun during that time and it didn’t help our moods.

As I know you will, please send your mojo, prayers and superstitious rituals our way.  For Kelsey especially, that she comes through the surgery and the recovery with flying colors, little pain and her sweet little spirit still in tact.

For Ben that he doesn’t worry too much about his beloved sister or family, and that the transition of the new house and absent parents don’t do permanent damage.

For Dave who carries all of this plus the financial burden of it all and a career with new and demanding roles. As for me, if all of the above happens and we all stay healthy (PLEASEPLEASEPLEASE) and the weather cooperates and we are in the house this time next week then I might not have a nervous breakdown.  I don’t think that’s too much to ask for, right?!

Thanks y’all.

Love,

Kim

 

Home and Happiness

Our life is never boring.  2017 was truly one of our best years yet but also not unlike years’ past. Stressful but successful.

We got to build our dream house which will be accessible for the kids’ needs (in a modern farmhouse style with shiplap and barn doors and reclaimed beams, oh my!) and that will be done just as the year closes out. Hopefully we will move the first week of January, despite not having a buyer for our current home!  (Knocking on reclaimed wood!)

Another notable happening was Ben turning a thriving TEN…a feat we were told may never happen.

Kelsey made great strides as well and went from not talking in 2016 to never being quiet in 2017.  She has learned so much and mended our broken hearts with more joy than we could have imagined, just two years ago.

We took trips, made memories with family and new and old friends alike, and enjoyed a period of relative calmness in our “special” lives.

Horrifying Happenings

But the end of 2017 also finished with some difficulties that I haven’t written about yet.  As the holidays approach, I wanted to tell you, my dear readers, friends and family what’s been happening and what it means for us in 2018.  We are anxiously awaiting gathering for festive celebrations but before they happen, I wanted to share more about the elephant in our room.  I know the questions will come up and quite frankly, I plan on focusing on the joy of Christmas not what lies ahead in 2018.  You’ve been warned.  😉 XO

On September 7, on the third day of school, Kelsey had a tonic-clonic seizure that required an emergency call, ambulance ride and two hospital visits.  Then, on November 26, just like in September, I went to wake Kelsey up and found her seizing in bed again.

Before that time in September, Kelsey’s form of epilepsy, which I wrote about here, had been controlled by a very low dose of Topamax.  She never had another spasm like we had seen when she was first diagnosed in 2015, and it seemed like she had a mild form of epilepsy that was easily controlled by that low dose.  In fact, we had just been to her neurologist a couple days before that seizure in September and after an EEG, it was decided to keep her on that low dose as it was controlling some “irritation,” but not full seizures, in the brain.  But, the seizures came like they never did before.

So.  The new seizures.  THEY.  ARE.  AWFUL.  Both times I have found Kelsey in her bed convulsing.  Her arms are stretched out in front of her, her eyes aren’t focused, she snorting and has labored breathing.  She is unresponsive.  She is stiff as a board.  It’s exactly as you would imagine a terrifying seizure to be.  Just like on TV.

After the September incident, her Topamax dose was doubled and we were given Diazepam to give to her if this type of seizure happened again.  We sent the medication to school, I have one in my purse, and there’s one in her closet.  Just in case.  We were prepared but honestly, naively, I didn’t think it would happen again.  (You’d think I’d have learned a thing or two with these kids).  But it did happen.  And it was just as bad as the first time.  Actually it may have been worse because we gave her the Diazepam but it didn’t work.  After we gave the medicine, the seizures continued…at home…in the ambulance even after the EMT gave another dose…and even a little while in the hospital.  It was probably over an hour from start to finish, as far as we are aware.  An hour long seizure, people.

It has never really been proven why she’s having the seizures but both times she has had a fever and it’s assumed that the spike in fever causes her already delicate brain to seize.  She goes to bed healthy and in the morning is seizing with a fever.  The last one developed into a virus which turned into a sinus infection that she is still being treated for at this point.

After the November episode, Kelsey was admitted to Hopkins for overnight monitoring.  Because Kelsey has epilepsy and hydrocephalus, tests are done to make sure that the shunt she has to control her hydrocephalus isn’t infected or malfunctioning which could cause the fever.  To investigate this, a “shunt series” is run which involves an C-T Scan and an X-ray to see both in her brain and her stomach.  Her shunt tubing runs from her head to her belly.  Both visits to the hospital showed that her shunt was functioning perfectly well.  In fact, she isn’t really using her shunt. She’s moving all fluid through her brain like those without hydrocephalus.  She just so happens to still have the hardware in her brain (they won’t remove it unless they have to).

Hips and Hospital

Well, just as we were getting settled in for an unplanned overnight at the hospital, one of the pediatricians came in to tell me (of course Dave had just headed home) that after further evaluation of the X-rays that were taken, they noticed that Kelsey’s hip had dislocated!  Insanity.  Well, long story short the rigid movements of her body during the prolonged seizure caused her hip that was already slightly rotated out of it’s place (hence her walker), to dislocate completely.  But, after a 4:55 AM subsequent X-ray they could tell it had, apparently, rotated back into it’s place.  Good grief! And Praise the Lord.  I guess since her hip was already rotated out and her muscles around it are lax, she didn’t feel any pain from the dislocation which is why we didn’t really notice anything.

So.  We went home the next day with another increase in Topamax and a billion more grey hairs.  And also with instructions to visit her orthopedist in a week’s time.

We have been seeing Dr. Ranjit Varghese, the medical director at the Ortho-Cerebral Palsy Program at Kennedy Krieger for a couple of years now.  He was the “third opinion” we sought out for Kelsey’s issues.  An opinion we looked for to confirm or deny the fact that she would, one-day, have to have major hip surgery.  For years, Kelsey’s hips have been slowly rotating out of their socket or subluxated.  A couple weeks before the last tonic-clonic seizure, Dr. Varghese reassured me that we had time…that while her hips had moved since her last visit, they were still okay.  Surgery was not something we needed to worry about yet.  It would probably not happen until she grew more and was about 7 or 8 years old.

But, that last seizure changed things in more ways than one.  The new plan is that on January 22, Kelsey will have major hip surgery on both hips and legs.  If you want to look into it more (Mom!), she will have a combination of a femoral osteotomy and pelvic osteotomy with a side helping of tendon lengthening.  At least that is as far as I can translate what our doctor told us with what I’ve found through Mama Google.  Bottom line is this…

• Kelsey will have invasive surgery that will have us as residents at Hotel Hopkins for about a week.  The goal of the surgery is to prevent her hip from fully dislocating which could be catastrophic (the doc’s words not mine).  Hopefully it will allow her to walk better as well.
• She will be casted from the waist down in some form which will require an immobilization wedge to keep her still for six weeks at home. 
• She will leave the hospital with a wheelchair for mobility.  Good thing we built that accessible home for her, huh?
• Here’s been the kicker for me in hearing the news:  After the six weeks at home, she will head to Kennedy Krieger’s Inpatient Rehabilitation Hospital where she will receive therapy for six hours a day, six days a week.  She will have to stay overnight there for the therapy for 3-4 weeks, baring all goes well. 😦  The goal will to get her moving with her walker as she is now, but with straighter legs.
• When we return home, she will resume regular physical therapy but increased to 3 times a week.
• The whole process should last about 6 months.

It has taken us a couple weeks to fully process the news.  In fact, we are still processing it, as you can imagine.  Oddly enough the logistics and home upheaval are what I’m dreading the most, not the surgery itself.  And there are a lot of unknowns about pain, healing, bathing, toileting, moving, and living during all of this.

Kelsey won’t get to go to school for a big chunk of the winter and spring.  And she LOVES school.  Three weeks after moving into the home we’ve been planning, building and dreaming about for over a year, our life will be turned upside down…no time to refinish furniture or organize my office like I was planning. That month in rehab will mean a month of the four of us sleeping under different roofs.  Dinners apart.  Morning rushes apart.  Holidays and school breaks apart. Kelsey will be in the hospital over spring break and Easter weekend. She can leave for a couple hours to have her ham and deviled eggs, but that’s about it.

We have spoken to a representative at KKI and have planned a tour.  I’ve done some research and You-Tubing (watch another 4 year old’s journey here) which have helped.  And through focusing on what I’ve learned about surviving and loving our life, I’ve tried to focus on any sliver of silver linings I can.

Obviously, the fact that her hip didn’t dislocate permanently, and that the surgery will keep it from happening while helping her walk better is a silver lining, but I’ve found more too. Our new house will be ready just in time to move, set up, and have everything on one floor with ramp access when she comes home.  We have a hospital that people travel all over the world to get to for this same surgery in our backyard.  Some families would be separated much more than us, but we are close enough to see each other almost everyday and to be able to make it to Mom-Mom’s for our Easter dinner.

A big silver lining is that I don’t work outside the home and can be a full-time care-giver for my girl without worrying about taking time off, writing sub plans or not meeting my responsibilities.  She is my job and I have time for this.

After research on what rehab will look like, I can see how maybe, in Kelsey’s warped sense of what fun is, she might actually like some of the therapy she’ll endure…like one of her biggest joys, “the pool!”  Apparently KKI’s aquatic therapy is state of the art!

As I research the surgery, talk, write and pray about it, I feel better.  But it’s definitely work to focus on joy during such a scary future.  We are so not-normal.  I’ve definitely found acceptance with the path my sweet family is on, but this is what I dreaded most when we were told about Kelsey’s hydrocephalus and stroke before she was born.  Deformity. Wheelchairs. Surgery.  Hospitals.  Most of 2017 gave us a break from drama, trauma and feeling abnormal.  Yeah Kelsey uses a walker and is delayed.  Yes, Ben’s future is unknown and he has to work twice as hard to do half as well as his peers, but we’ve got this.  We know how to handle this beautiful, atypical life.  This surgery, however, has snapped me back into our reality and made me once-again grieve the dream of healthy children. But one look at these beauties and I’m okay again.  We are so different.  We are so blessed.

So there it is.  Our roller coaster.  Major, invasive surgery and a dream home to come home to.  So stressful, but equally successful.

Merry Christmas and Happy New Year! May you find light and joy all year long, despite any darkness that falls your way.

Love,

Kim

 

 

 

Yesterday I had the pleasure of speaking to my MOPS friends about Joy.  MOPS stands for Mothers of Pre-Schoolers, if you didn’t already know.  I was invited to join this group two years ago and I am so very glad I did. It definitely led me on a journey to joy.

But let me back up…

MOPS recommends a topic each month for your group to focus on and this month it was “Choosing Joy.”  It was suggested that I was a great person to speak about this topic because of how fabulous my life is! Eh-hem, I mean how joy-ish I am despite how hard my life is.  Having spoke about our family four other times in the last couple years to different groups, I felt up to the task.  Of course, as the date was looming, I felt like a fraud.  “Who am I to speak about joy?  I take depression medication, eat and drink my feelings and spend a number of hours a week hiding in the confines of my bedroom under my covers. This is silly!”

But as I was kind of dreading the speech one day in the depths of grocery shopping hell (I hate it), I realized I was cheerfully humming Christmas tunes, saying hello to the cart guy who NEVER speaks back or even smiles, and enthusiastically saying “Sorry! Excuse me!” to people who were in my way. And this was after only a couple of really tough days in our life in a row.  It occurred to me that despite all we deal with, I truly do seek out joy and crave happiness…even in the grocery store.

Even this blog itself, I think, is usually joyful.  I share hardships, sure, but I usually use my perspectacles to find the silver linings in all our situations.  I wrote a post titled “Why I don’t hate stomach bugs,” for goodness sake.

Here’s my list about my Journey to Joy…

1. Grieve the dream.  The dream of having a healthy, neurotypical (new word for normal) child. I had to do this twice before moving to joy.  I still have to do it on the daily, but my focus on that old dream has changed significantly.  Thankfully.
2. Marry an optimist.  I’m a realist.  He’s an optimist.  I think we are meeting each other in the middle after all we’ve been through together but his general optimism definitely helps me on tough days.
3. Therapy and medication.  Can’t reccommend both enough. “Jesus loves me this I know, because he gave me Lexapro.”–Glennon Doyle, Momestery
4. Humor.  Even in the depths of 45 minute seizure induced hospital stays, The Optimist and I laugh.  We laugh at the situation and the people helping us.  If you can’t laugh, you’ll cry…
5. Acceptance.  I knew that I would not be able to help raise my sweet children the best I could until I accepted their disabilities.  This was tough.  The next couple items on my list led to my acceptance.
6. Asking for help.  Certainly from friends and family during times of stress but it’s also more than that.  If you’ve been following our story for awhile, you’ll remember that there there were some very dark months leading up to Kelsey’s epilepsy diagnosis.  Days were hard and I couldn’t find out how to help my cranky, developmentally stagnant daughter to thrive.  I couldn’t figure out how to make her smile, even.  And I was taking the ownership and responsibility of fixing her.  Don’t we all as mothers?  Well I was so low that I finally learned to release some of that power.  I prayed for the helpers.  I prayed that God would send me the helpers to save us from the hard times we were experiencing.  I had nothing left to ask for, so I just kept praying “Help me.  Send me the helpers.”  And He did.
7. Spiritual Evolution. We had just joined our church around this same time as Kelsey’s tough period.  At the time, I didn’t consider myself truly religious or spiritual.  I just liked the routine of services and the community ties the church offered and the hour break I got each week when Kelsey was in the nursery and Ben was in Sunday School.  That was until someone from church had to come to my house to pick something up.  She came and I mentioned it was Kelsey’s nap time.  This angel of a human who came over asked me why I wasn’t a member of MOPS and that I needed to come to their meeting the following week.  So I did! I’m so glad I did.  Not only did I meet some fun, new friends and get another break from Kelsey (there’s childcare at MOPS!), but I also started on a new journey.  The next year the friends I made in this group asked me to come with them on a women’s retreat.  I was hesitant but the results were life changing.  I had found a new “therapist.”  A new way to look at life.  A new way to find peace.  I learned to hand my troubles over to God. During this retreat I also found the acceptance I was looking for.
8. My best friend, Grace.  Many of you may be reading this now and saying, “Hmph! I’m her best friend!  I’ve never heard of this Grace chick!!” You’re right.  I don’t have a friend named Grace but I’m trying to make her one.  I learned this from my therapist.  I realized that I truly am my own worst enemy.  That I tend to beat myself up for the stupidest things.  Things I would tell my friends to “Relax!” about. So in many situations, I try to have grace for myself when I can.  I’m still working on this one.
9. Good habits–Exercising, reading, napping, cooking, and writing!  Presenting yesterday was therapy.  This blog is therapeutic.
10. Bad habits–Shopping, food and wine! I tend to do these way more than the good habits but they still really help.  😉
11. Words, verses and quotes. 
12. Books and their authors who are so much more than writers.  I’ve recently discovered podcasts and I’m particularly in love with Jen Hatmaker’s “For the Love” show.

During our biggest trials, people often comment how “strong” we are.  It takes a lot of love and a whole lot of all of the above.  May you and yours have a joyful Christmas season.  Thanks for reading.

Xo,

Kim

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.

 

 

Ben joined Swim Team at our country club this summer.  This is never something we considered because of Ben’s endurance, but after talking to a friend at the pool on Memorial Day, we decided it might work.  The team is great!  Cheerful and kind coaches, fun team spirit, pep rallies, uniforms, and secret cheers.  From the first practice, Ben has jumped right in!  He works harder, psychically, than he ever has and comes out of the pool grinning ear-to-ear and saying “Whew!! That was a great workout!”

Last Saturday, after daily practice for two weeks, it was time for time trials.  For guppies like me, that means each swimmer (who is willing and able) swims the length of the pool in any or all of the strokes.  Not knowing what the heck he was doing (with no help from his parents but encouragement), a coach asked Ben if he was ready to give a lap a try during his age level’s turn at the Freestyle.  He said he would after the coach offered to get in with him to help him across.

Well, it was kind of, um, embarrassing.  All the other nine year olds finished across in a timely manner.  But Ben froze.  I should explain that this was A) The first time he has ever been in a deep end of any pool despite swim lessons his whole life and B) The first time a “lap” had ever entered his vocabulary even after 10 days of practice with the team. These were definitely uncharted waters.

So he got in, swam about 10 strokes and stopped, with two thirds of the pool still left to swim.  The coach was so encouraging and helpful but all eyes at the pool were silently on him and he seemed to forget everything he had learned.  Dave and I froze too.  We were glued to our lounge chairs and didn’t know what the heck to do!  My heart wanted to scoop him out and run to the car to “protect” him.  I finally got up and walked to the lifeguard chair and hid behind it, holding my breath for him.  And then…the head coach started cheering.  “Ben! Ben! Ben!”  And then the crowd started cheering.  They cheered him all the way to the end.  And he finished with the help of his coach.

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​So here he was, this swimming miracle who was forced into the deep end with an audience of many to do the “impossible.”  His whole life wrapped up in 5 minutes.  A challenge, an audience, and lots of help and encouragement along the way to the finish.  Yeah, he finished slower than his peers.  Yeah he was less coordinated and more exhausted than his peers, but he did it.

When he got out, he was cold, shaken and tearful.  I met him with a towel and my own tears and we talked about his feelings.  He said he was embarrassed.  As a 38 year old, with a lifetime case of self-consciousness, I felt for him.  Big time.  And selfishly, for myself too.  We haven’t made many friends at our club (despite being members for 3 years) and not having our tribe with us while all eyes were on him, was unnerving.  I tried my hardest to shut my brain up and to focus on Ben and his feelings.

Thankfully, his tears quickly stopped (so mine did too) and we made our way to Dave.  By the time we got there, Ben was smiling again, watching the video Dave took and then saying he wished they would put the video on the (non-existent) jumbotron so everyone could watch it all again. What!!?? Was he crazy!? I was ready to pack up, leave and never come back.  And he wanted to stay, cheer on his teammates and watch his performance all over again with the crowd!  Unbelievable!

Needless to say, I continue to learn so much from both of my brilliant children.  Ben’s resilience, self-confidence, positivity and composure is almost more impressive than all that he is overcoming in his life.  On a daily basis, still, I’m wondering what someone thinks of my outfit, my hairstyle, my kids’ cute clothes, my writing ;), my personality, and my “image.”  And here’s a kid that’s so different than the norm who thinks everything is awesome about himself and doesn’t care if others are looking, judging or admiring.  He wants to be liked.  He wants to be admired.  And he wants to be valuable.  But he’s so self assured that if the opposite is true, he just keeps swimming.

We can all learn a lot from Ben.  I’m so thankful God gave him to me and so aware of all I’m supposed to learn from him.  Including how to rock a swim cap, goggles and swim shirt with pride!

I apologize for my absence…

Kelsey is set to have her sixth surgery tomorrow. She is having corrective eye surgery to fix her wandering, right eye. If you’ve been with me for awhile, you’ll recall that she’s had this before. When Kelsey was just shy of a year old, she had surgery to correct the inward turn of her eyes.

Well, as we were warned, the surgery didn’t “stick.”  Over the last four years, she went from crossing inward, to perfectly straight, to a wandering right eye.

We’re not sure what specifically caused the initial strabismus, or turning inward, but it probably relates to four brain surgeries (including one infection) in her first five months.  And the human brain is very smart.  Especially the young brain.  When her eye wasn’t aligned properly, she shut it off as to not see double.  The right eye became “lazy.”

Since then we have seen a developmental optician and two new ophthalmologists. We landed on one we love at The Johns Hopkins Wilmer Eye Institute.  The first thing the new doctor did was to fix the prescription in Kelsey’s glasses.  Her left eye is slightly near sighted and her right eye is VERY nearsighted…to the point of being barely able to see.  To help to strengthen ol’ Righty, we have been patching our hearts out and making those glasses stay on her cute little face all the time.

Kelsey can now say “glasses” and “patch” and has her favorite colors and patterns (Green! Hearts!).  In her recent Enlightenment Season (joyful! silly! smart! a chatterbox!), she has tolerated the glasses and allows us to keep the patch on her for four hours a day, as the doctor ordered.

 

Our hard work has paid off, slightly, and Righty is getting stronger.  When patched, Kelsey clearly uses the right eye to play, walk, watch TV across the room, etc.  Now that she will keep the patch and glasses on (something she wouldn’t do when she was one), there’s a better chance that her brain and properly aligned eyes will help her to use the right eye more.  So, surgery was suggested.

Surgery is not something we are particularly scared of.  We are even used to surgery on our kids. In the last nine and a half years, our children have had six surgeries.  Six encounters with anesthesia and its effects wearing off.  Six mornings and afternoons of not being able to eat or drink for an infant and four year old.  Six experiences of waiting for a surgery time, getting it postponed, waiting longer, and having to keep a child happy in a hospital during that time. Six times hearing all the possible, negative scenarios if something goes wrong during surgery (“…or even death”).  Even with all that, we are pros.  “Get in there, fix the problem, and let us go back home!”

Surgery didn’t scare us as much as not fixing the problem the surgery was intended to fix in the first place.  Refluxing urine into the kidneys, water on the brain, infections in the brain…yes, please get in there and fix those as soon as possible!!  No surgery never scared us.  Until now.

You see the last time Kelsey had this surgery, she went in as our happy, easy, laid back baby and came out an entirely different child.

Seriously.  It was like night and day.  And the grouchy, hard-to-please, stuck in (lack of) development phase stuck around way too long for our liking.  It wasn’t until she was diagnosed and “cured” of her seizures (over 18 months later) that our Kelsey came back to us.  Now, no doctor has ever acknowledged the fact that something happened during that surgery to have caused the change.  Some admit anesthesia could have had a lasting effect, or that sight distortion was now upsetting her, but no one has really listened to us (and definitely not agreed) about this concern regarding the surgery.  The surgeon who will operate on her tomorrow listened the most, and for that we are thankful.  I’m not sure it will make a difference, but everyone knows that parents know their children best, and we knew a different child before the last eye muscle correction.  That’s all there is to it.

So this week I’ve been more anxious about surgery than I ever have before.  I’ve been praying for steady doctors and attentive nurses.  For an awesome anesthesiologist who uses caution and makes careful decisions.  I pray that we walk in and out of one of the best hospitals in the world with the same, joyous adorable little girl who is lighting up our life with laughter and smiles.  Happy and healthy…happy and healthy…happy and healthy.  I pray we have an early appointment and that the waiting is limited.  And of course, I pray that the surgery works and that the recovery is quick.  That this is the next step to helping Kelsey see the world with both of her beautiful, blue eyes. Amen.

And in true Larrick fashion, not only do we have a surgery planned for tomorrow but we’re also due to FINALLY break ground on our new house.  Annnd the next day (bearing all goes well with Kelsey), we will gather to remember and celebrate the life of my beloved uncle who passed away at the beginning of the month.  So if you wouldn’t mind sending some prayers, happy thoughts and well wishes our way, we could certainly use them in the next couple of days.

Thanks, friends.  Xo.

This past weekend we went to the Great Wolf Lodge in the Poconos in Pennsylvania and we had a BLAST!  It’s a huge resort with an indoor water park, bowling alley, miniature golf course, restaurants and more! We chose that location over the one in Virginia because it was more centrally located to our friends in NJ who went with us.  I thought I’d write about our trip for some friends who are planning a visit soon and asked about our experience.  Or if you’re like me and want to live vicariously through vacations other people take, or like my friend Christina who needs every possible detail of her friends’ travels, read on!  A disclaimer, though, I received no incentives or discounts to write this post (although I wouldn’t mind one in the future!). These are all my opinions and based solely on the trip with my special family.

Rooms

When we arrived, we realized our room was at the very end of a very long hallway. We knew immediately this wouldn’t work.  Ben is a Menkes Rockstar, but we knew after hitting the water park hard, not to mention all the other fun we had in store, he would have trouble walking the long distance.  I went back to the front desk to request a room closer to the elevator. The staff was so nice and accommodating (the whole trip, actually!) and moved us pretty quickly.  There was still a significant amount of walking but nothing more than a normal hotel.

The rooms were decorated in a log cabin feel.  I love touches like that.  Some of the wallpaper and pictures were dated (yes, I notice these things), but it was all pretty well done.  The beds had nice log (?) headboards and were extremely comfortable.  I think they were Beautyrest mattresses.  Another point to note is about the pillows.  I usually HATE hotel pillows.  I’m also very picky about pillows even at other people’s houses and condo rentals so I always bring my own, but these were great and even better was there were a lot of them.  The rumor mill said the rooms were hot and I’d have to agree with this.  More so it was hard to regulate the temperature.  Next to the vent where the pull-out couch was, was cold.  The main sleeping area was warm.  We had heard about this and tend to run hot, so I brought a small fan and we were fine.

We had initially booked a KidCamp Suite but when it was too far from the elevator we were downgraded to a Family Fireplace Suite.  While Ben was excited to see the “Log Cabin in a Hotel Room” that he had heard about on TV commercials, I actually think this worked out better for us.

There were two queen beds instead of one and a pull-out couch in a semi-separate area.  For detail’s sake we had a nice balcony that overlooked the outdoor pool, fire pits, splashground and ropes course.  Our fireplace worked but we only used it to dry the kids’ bathing suits. 

The first night Dave had a bed, Ben and I shared a bed, and Kelsey was squeezed into her Pack-n-Play in the area sectioned off by a half-wall.  I worried that Kelsey would climb out of the PnP because we haven’t used it since the summer and she is way too big and tall for it but we’re still good.  I’ll ride that train as long as I can! 

Normally we look for way more separation on a vacation but I hoped that everyone would be tired enough to sleep virtually all in one room.  A first for us!

The second night Ben took the pull-out, Dave and I each had a bed and we squeezed Kelsey into the bathroom because she tends to sleep later than Ben, the up-at-6:13 AM-every-morning-of-his-life waker.

PMy friend Kare said her room that was similar without the fireplace had a smaller bathroom, in case you’re thinking of putting your toddler in the bathroom like us!  Both our kids have slept in bathrooms, walk-in closets and offices on vacations.  Whatever it takes when it comes to sleep! We all slept well after the people above us stopped raging in their bowling-alley-of-a-room.  So, mental note, when booking a hotel room in the future, ask for the top floor near the elevator.  Check.

Kelsey is still small and a stroller is her main mode of transportation at a place like this but Ben is getting bigger.  We are in the market for something between walking and a wheelchair but haven’t found it yet.  In the meantime I need to remember to make special requests when booking a room.

Water Park

Next up! The main reason one would travel to GWL.  The Water Park!  I had trouble picturing how this was set up inside a hotel.  If you look online, it details each section of the park but it’s hard to imagine it altogether, if you ask me.  The park is on the bottom floor of the hotel.  It’s about the size of a football field, I’d imagine, but don’t quote me on that.  The toddler pool, wave pool, lazy river, climbing and splashing structures, hot tubs (that I was bummed I never had a chance to try) and water slides are all located in this one, gigantic space.  We heard it was freezing but it wasn’t.  At 9 AM on Saturday morning it was a bit chillier than at 6 PM the night before but nothing that bothered a 3 or 38 year old.  The space was clean and well-kept, in my opinion.  While the lobby area and elevators were crowded, the pool never seemed to be overly crowded.

 

We had a blast!  Kelsey loved the toddler pool and the wave pool the best.  I absolutely love to see Kelsey in the water.  In the pool she is no different than any other kiddo.  Her Cerebral Palsy disappears in the water and because of the balance the water provides, she was even able to take a couple unassisted steps.  The slide was tricky because of the whole getting out of the water, up the steps, and then down the slide.  We, of course, had to carry her up the steps and then meet her at the bottom of the slide (unless we went down with her).  Luckily the set up was great so that one of us “caught” her at the bottom of the slide and then hoisted her up to the other who took her up the steps and put her on the slide.  We had our friends who helped us with the heavy labor to make it bearable, but Kelsey could have gone much longer if she could do the walking and climbing herself.  Still, all things considered, it was awesome.

Life jackets of all (kid) sizes are available, first come first serve, as well as Puddle Jumpers, that we love.  We brought our own but wouldn’t next time since they have them there.

Ben’s favorite parts were the slides and wave pool.  When I saw the wave pool I didn’t think he’d be able to handle it.  I was a bit right but he loved it!  It certainly knocked him around as his balance and strength isn’t typical but once he stopped laughing and kept his mouth shut (and stopped swallowing water), he was okay and didn’t want to get out even past complete exhaustion.  The steps up to the tall, windy, awesome slides were a lot for him but I think they were harder for the adult carrying the two-person tube.  The first trip down the slide was a little terrifying since Ben couldn’t hold on and sit in the tube properly because of his tone and strength so I had to grab onto him for dear life.  Once we were finished, though, the second trip was no big deal because I knew what to expect.  I’m so happy he was able to enjoy the water park to the fullest.  

He did get a splinter though…?!?  Only our family would get a splinter at a water park.  So I do recommend wearing water shoes for that reason and the fact that there’s a ton of walking (running) in wet feet and climbing up wet stairs.

I was VERY impressed with the lifeguards.  They were of typical lifeguard age but they were ON IT!  They were actively watching and engaged and pacing to keep tabs on everyone.  I am always disappointed by lifeguards at our pool and on vacation at the beach but these people were good.  And even more so, they were friendly and and very happy to help.  Especially when Ben got a splinter.

My favorite story was when Ben and I were swimming in the wave pool.  The waves only last for about 5 minutes before you get a much needed break.  Those waves are relentless! Anyway, this was about our fourth hour in the water park when I said to Ben that this was OUR kind of place.  I said, “It’s all in one spot…..It’s inside…….We don’t need sunscreen…..We aren’t hot…..” And then Ben finished my sentence and said, “We can shop…..”  HA!  I’ve created a monster!  And a witty one at that. Except he wasn’t kidding.  It is one of his favorite parts of vacations.  Mine too.

Shopping

Even though there are many better reasons to go to GWL than shopping, that seemed like the perfect segue to explain what you can buy while at the resort.  There is a gift shop on the main level with T-shirts, cups, and toys galore.  They also have some lovely home decor, clothing and accessories.  I may or may not have bought a pretty pair of pants for the spring.

Near the water park is also a store with personalized gifts, a swimwear shop, and two kids’ gift shops.  Ben made out like a bandit, as usual.

Restaurants

If you’re like us, you may be wondering about food and adult beverages when braving a water park with fifty-jillion kids.  They have a full bar and a separate snack bar with burgers, chicken fingers, salads and beer inside the water park.  We brought snacks and drinks for the kids 😉 too.  We also brought waters, snacks galore and muffins for breakfast to the room too which worked out great. There is a large mini-fridge (oximoron!) that fit a lot.

Outside the water park is another quick-service type restaurant with pizza and sandwiches.  I heard the pizza was good but we only had burgers and sandwiches which were just average.  Luckily each time we had food at the resort, we were starving and were ready to eat anything so it all tasted fine.

There’s a Starbucks next to the gift shop on the main floor that is very crowded all morning…but equally worth it.  On that main floor is also the large, main restaurant which has a buffet for breakfast and regular menu for lunch.  I’m not sure what their dinner service is because we ate at the snack bar in the water park the first night and went off-site for dinner the second night.  There’s also a bar in this restaurant for after-hours, etc.

Dry Activities

The dry activities were the biggest surprise to me.  There was so much to do and we didn’t get it all done.  There’s an indoor mini-golf course, a bowling alley, a 3D virtual roller coaster experience, and in the kid’s gift shop is a build-a-wolf (like Build a Bear) creation station!

There are also lots of activities for the kids including character appearances (all the GWL characters which are pretty cute), story time in PJs, dance parties and more.  There’s also an adult spa and a kid spa!  We didn’t get a chance to do any of these.  Good excuse to go back soon!

The most popular “dry” activity is MagiQuest which is a electronic scavenger hunt of sorts that you use a magic wand to unlock clues.  So cool.  Ben only was able to finish half of this but our friends’ girls (4-12 years old) loved it.

You may ask what we were doing the whole time besides swimming.  Ben and Dave were in the arcade!  Ben is an arcade junkie.  He would rather play arcade games than ride rides, swim, bowl, etc.  It has a whole lot to do with the prizes.  🙂 Dave commented that it was “the best arcade he’s ever been to.”  Everything was accessible (short enough for Ben to see) and everything WORKED!  How many times have you wasted money just to get a broken arcade game?  So many for us.  The claw machine is still a waste though.  Geez!!

We didn’t nearly experience enough of GWL but we loved it!  We were there from 5:30pm Friday until 11am on Sunday.  The cool thing is that on the day of your arrival, you can use all the attractions (water included) starting at 1pm.  Then on the day you check out, you can stay until close!!!  That’s 9pm.  How nice is that?

When we go again, I think we will do dry activities until we can get in our room (4pm) and then hit the water park.  We didn’t get there as early as I would have liked, now knowing what we know.

I imagine it seems that based on my glowing review, you’d think we went to Disney World or on a cruise to the carribean, but it was so nice because we could do everything!  Sure we had to help Ben and Kelsey more than the typical kid but not more than we typically have to help them.  Vacations are always fun but it often means a lot more work for us than during our daily lives because of all the unexpected roadblocks, height limits, and energy needed.

But on this trip parents had fun.

The kids had fun.

And everyone was exhausted.

Have you been to Great Wolf Lodge?  What am I forgetting?  What is your favorite part?  If you haven’t been and you have kids, you must go.  It’s pricey but you get so much for your money.