A Hopeful Halloween

I love holidays.  I love dressing up.  I love candy.  I love Halloween!

And I’m pretty excited about this one.

I won’t bore you with all the pictures from year-to-year, but we’ll go back a couple years for kicks.  On Kelsey’s first Halloween, she had just had her fourth brain surgery.  So I decided that a hat or wig would be perfect for Halloween…she was a Cabbage Patch Kid.  I was obsessed with these dolls for a good part of my childhood.  So it was perfect that I had my very own baby “doll” now.  Oh sure I had Ben, but the girl…I had to do it!

I mean, could you die?

Ben was equally adorable that year dressed as an astronaut.


Last year Kelsey had just started wearing new glasses and her mood was rocky at best, so this is what most of the Halloween looked like…

Ben, Kelsey and their cousin Penguin

As for this Halloween, Ben has been through a couple costumes but landed on an adorable, um, I mean terrifying ninja.  As a teacher in another life, all of my 3rd and 4th grade boys were always dressed from head-to-toe in black.  They called themselves Darth Vader, the guy from Scream, and ninjas but to me they all looked the same.  Well…we’ve arrived.  Ben is dressed all in black, but as sad as it may make him, he’s not the least bit scary.

Kelsey is dressing as Minnie Mouse.  Her current obsession is Elmo, as described in my last post.  It would make sense to dress her as Elmo but that would mean as much to her as dressing her as Minnie.  Absolutely nothing.  If Ben dressed as Elmo, that would be a different story, and Kelsey probably would have loved that, but I knew that would never happen.

Ben was Mickey Mouse when he was two, so we decided at two-and-a-half, Kelsey had to be Minnie.


I can’t stand the cuteness!!!

Now, the kids are as adorable as ever this year, but that’s not why I’m excited.  I’m excited because I’m hoping Kelsey may be able to actually trick-or-treat!  She has been speeding around the house using her gait-trainer and it is so exciting to see!!

When Ben dressed as Mickey, he too, was just learning to walk but he was able to trick-or-treat by just holding Daddy’s hand.  After about four houses, we were all done and that was perfect.  Now that we have Kelsey, I can’t help but compare the kids.  Ben has this MAJOR, horrible disease and he was walking before Kelsey.  He was talking before her too.  And that in itself is so scary.

On one hand, I often think that if he can do all he does, than anyone can!  His sister’s disease(s) is (are) much more common and not fatal.  Neither of their afflictions have cures but they do have treatments.  But by comparison, she’s behind (her brother and her peers) in so many ways.  Now.  She has a whole lotta reasons to be behind.  She was having seizures, that for a large chunk of 2015, were untreated.  She had four brain surgeries and an eye surgery.  She’s had a lot more traumas to overcome.  Ben had a lot riding against him from the start, but luckily no seizures, surgeries, or otherwise. But still…

Onto happy thoughts.  A month ago, I would not have believed this was a possibility!  But all-of-a-sudden…something clicked!  We still have a long way to go, but the fact that she WANTS to walk and is moving is so exciting!!  She is so proud of herself!  Walking makes her happy!

So stay tuned…I’ll let you know how it goes.

Have a Happy and Hopeful Halloween!!!


P.S. If you want to read about our scariest Halloween EVER, check out Ben’s Story.

New Therapy

…trying again after computer problems yesterday…

We have added a new type of therapy to our repertoire.  Elmo therapy.  🙂

IMG_9309Elmo therapy was a favorite of ours with Ben when he was little too.  It helped him with the dreaded Tummy Time.  ry%3D480

ry%3D400But it took Kelsey much longer than Ben to love Elmo and TV, in general.  But I can say for sure, without fear of jinxing it…Kelsey loves TV!  Woohoo!!  Now the Pediatrician and Better Mom Police might look down upon our celebration of TV, but I’d tell them to switch places with us for the last 18 months and see if they wouldn’t be thrilled to see the furry monster in full rotation!

Recently Kelsey also started to enjoy using her “gait trainer” aka her walker in the picture above.  One day her physical therapist was over and fiddling with it to slow it down, as Kelsey is currently Speed Racer with it which creates incredible poor-form in her walking gait.  I put Elmo on to help distract her while her PT was working and lo and behold, Elmo therapy was born.  Kelsey will stand for long periods of time, with her gait trainer, while Elmo is entertaining her.  Not only does this help her walking development (if she’s actually moving) but it also helps with her weight bearing practice…which is great.  Since the therapy has started we’ve seen her become more fond of her gait trainer and more fond of walking in any way…be it holding hands, the walker or a push-toy.

Now she has a LONG way to go.  Watching her walk is a bit painful the way her feet are turned in.  But it’s progress. And I’m quite thankful for Elmo for all he does, both in therapy and out…be it while cooking dinner, grocery shopping or after a long day at the pumpkin patch.  And while I do feel a bit guilty for all the TV consumption lately…I’m not stopping the contentment train anytime soon.  So sue me…


No more Gym Guilt

Today I had a great time at a Zumba at the gym. I don’t make it often since Kelsey has some type therapy most mornings, but since PT wasn’t until 11 today, I decided we could fit it in. She’s been doing great at the church nursery so I thought she’d be okay for an hour at the Kid’s Club.

We haven’t had the best luck at the Kid’s Club in the past. Since Kelsey was about 6 months I’ve tried taking her to the gym like I did when Ben was little.  The last four or five times while in a group class, I’d hear my dreaded name called over the loud speaker to report to the Kids Club. Aka “your kid is causing problems…come fix it.” Now some of these calls were during some really difficult periods where Kelsey would pretty much whine from sun up to sun down. But I was still bothered to be interrupted–sometimes twice in an hour class–to come get her because she was whining/unhappy.

At the beginning of the summer, I took both kids to the club. And I was called out, again, during a class to come get Kelsey because she was unhappy. While it doesn’t surprise me that she’s unhappy and irritating the caregivers (Been there! Done that! Everyday!), it does surprise me that they have no problem calling me out to tell me. Because it seems like every time I drop her off, some other kiddo is balling their eyes out for their Mommy too! Right?! I mean isn’t it pretty universal that many kids don’t love being left at a drop-off nursery such as this? But as a teacher and a mom, you figure it out, right? Pick them up, try some different toys, and if it doesn’t make the kid happy, well…listen to them whine for 30 more minutes and then send them on their merry way when their mom comes to get them.  And, if you’re a good teacher and an even better mom, you don’t always have to tell the parents how awful the kid was.  Gosh, I would sure be in trouble if I told the truth about all the cherubs I taught!  No one’s hurt?  No one needs to know!

Well, not my gym, apparently.  So that last time I went to the gym, ah hem, at the beginning of the summer, I told the staff that this was Kelsey.  This is how she is.  They’ve been told about her medical problems.  And that her behavior suffers because of all these diagnoses.  The one staff member seemed to understand that I just needed an hour to work out, and if they could just deal with Kelsey for that time, I’d be grateful for the break.

Today, that same staff member and the manager of the Kid’s Club who has worked there since Ben was little, were there to happily greet me.  They didn’t address or approach Kelsey, but that was okay.  Like any other day, another child was tantruming because he was in time-out for throwing toys.  The staff boasted about how happy they were to find a way to solve this other child’s “problem.”  Their solution was to sit with their back to the child while he screamed quite loudly in time-out.  Great!  Sounded good to me.  Didn’t bother me one bit.  They were handling a child.  Good stuff.  I signed Kelsey in, put her down (whine free, I might add) at a familiar toy, said good-bye and told the staff I’d be back at 10:30 (an hour later) after my class.

Throughout the class, I was nervously looking at the door and listening for a gym announcement or staff member who was looking for me to rescue them from my child…but it didn’t come!  I was thrilled!  I was already plotting the next class I could come to…on Monday, maybe?  After the class, I grabbed my phone and texted Dave that it had been a success!  A full gym class without a complaint about Kelsey.  Annnd then, sure enough, at 10:32 maybe, as I was walking to the Kid’s Club, I heard it, “Kim Larrick please report to the Kid’s Club!”  Seriously!?!?! Grrrrrrrr….

So I went down to collect Kelsey and to hear the report.  Did she throw toys like that other boy?  Did she hurt someone?  Did she poop (another reason a parent will be called on the PA)?  Did she bite like she has been known to do every now and then?  With my armor up, my heart hurting and my head hanging, I asked what she had done this time. “Oh nothing.  She’s just done.”  I shared with them that I had been so excited to tell my husband that I actually hadn’t gotten the call, when sure enough, mid text to him after class, I was summoned.  I told them that we wouldn’t be coming anymore since it never seems to work out and that Kelsey was so difficult to manage.  They said, “Oh, well, we let you finish your class but now she’s done.”

Seriously?!?  You couldn’t wait 5 minutes for me to grab my keys, a drink of water and a class schedule before notifying me that my two year old was ready to leave?  I didn’t even go to the bathroom because I didn’t want to ruin a good thing!

I don’t get it.  There was no real explanation of why she was so bad that I needed to be called (again!).  Just that she was “really tired and was done.” Oh and that she was trying to get out of the gate when another child got to leave and she didn’t like it when the manager tried to stop her from getting out.  Ah, ha.  Ok.  Yeah, still don’t understand.

Boo.  Feeling sad for myself and for her.  Everywhere I go people boast about Ben and his happiness, sweetness and love-ability.  Even at the beginning of Zumba, the instructor couldn’t remember my name but knew my son’s name from 4 years ago.  Amazing.  But with Sweet Kelsey (that only a select few know), we were asked to leave (early) over and over again.  So we did.  I went upstairs, signed a termination of membership, and left the gym for good.  It’s just not worth the struggle and having to hear from someone else that we come in contact with that she’s difficult and hard to handle.  I already know that.  That’s why I go to the gym…for a little mental break.

On the bright side, I will no longer have the I-Haven’t-Been-to-the-Gym-Guilt!  I’ve got 99 problems and you ain’t one of them!