Permanent

Awhile back, we received a Permanent Handicap hang tag in the mail.  And it’s been hanging here, in the mudroom–not the car–for months. Let me explain.

Not long after Ben started walking, we begrudgingly realized that a handicap tag for parking would be necessary.  As he got heavier, carrying him was not an option, and you don’t always want to get a stroller out for a six year old to go into the library.  We filled out the necessary forms and got a doctor’s note for a temporary handicap tag.  It really was a life saver.

Then Kelsey came along and the tag became more for her than for Ben.  You have to renew the tag every couple of years and we did.  But on the regular, the tag would take up it’s daily residence on my rearview mirror in the van.

We are very strict about using it only when the kids are in the car. But it gets used a lot.  At school when the drop off line of cars is around the parking lot and our exodus requires a stroller, walker and two kids who move differently than their peers. At amusement parks when walking the length of two football fields just to get into a park is not an option–not that we visit amusement parks on the reg but that’s another post.  Ha! We are deeply disappointed when we forget to bring it on trips that require flying and renting a car for vacation (we’ve done this too many times to count).  Seriously, I have shed a tear for that before. We need the tag and the right to park close–and we use it.  It’s a necessary part of our life.

The permanent version came in the mail not long after Ben’s surgery in mid-February and it’s been hanging on the mail slot since then.  It’s still there because admitting we are a permanently disabled family is tough. But we are. THEY are.  And they will likely need a close parking spot for the rest of their lives.

But when that tag came in the mail, that we didn’t apply for, it stung.  The word PERMANENT–it stung.  How did “they” know we need this? Does the MVA read my blog? Do they follow me on Instagram? Who let them onto the fact that we had another bullet point on our list of reasons we need a handicap tag?

When Ben was getting back to normal, but still very much recovering from surgery, we took both kids to their weekly speech therapy appointment.  The image of us was the epitome of what one would claim disabled.  It was laughable. And depressing.

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Womp womp

BUT, as time does heal all wounds, we are getting back to our normal with new routines in place.  Ben is KILLING it as I knew he would with his new responsibilities after his surgery.  To respect his privacy, I will keep it at that but we are super-impressed with how he’s handled such life-altering changes.

Kelsey will turn SIX tomorrow and is loving life.  She still has a tiny bit of paralysis left over in her left thumb from her seizure in October, but it doesn’t affect her too much.  She is sunshine-y and sweet and as cute as can be.  PTL (Praise the Lord, Mom)!!!

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At Kelsey’s Princess Birthday Party

Miraculously, Kelsey’s seizure had some benefits.  Because she didn’t have the left side to catch herself when she would stumble, her independent walking has become smoother and more controlled as she developed the core muscles while she tried not to fall.  Go-freaking-figure.

So the MVA thinks we are in need of a permanently disabled handicap tag.  I wouldn’t argue that one bit, but it stings a little less when life, itself, is a bit brighter and their disabilities are in the shadows.

I’ll get around to hanging the tag in the van someday, but for now remembering that everything in life is temporary, despite what the MVA thinks, is fine by me.

 

Love,

Kim

Numb

We are almost two weeks out from surgery.  Things could be better but I know they could also be much worse.  I’m really finding myself a bit numb in response to it all.  We have been preparing for such monumental surgeries and life-changes for eleven years and (luckily?) my brain has trouble feeling truly depressed about it.

Don’t get me wrong, we aren’t all Pollyanna and sunshine over here.  Far from it.  But when I think of the magnitude of what the surgery accomplished and where it leaves Ben, not only in the short-term but for life–I would predict (knowing myself better than anyone) that I’d be moping around, crying a lot and complaining a ton.  But I’m not.  And I think it’s because I’m numb.  Well that and Lexapro.  And Pinot.  And daily naps.  And ALL the food.

I feel the magnitude.  I see it.  I nurse it.  I worry about it.  But it’s not collapsing me like some of our other news, surgeries and diagnoses have done in the past.  Numb.  This seems like a ridiculous comparison but I’m currently reading the Tattooist of Auschwitz by Heather Morris (2018).  The main character talks about becoming numb to some of the atrocities that he witnesses in the time he is in the concentration camp.  I’M IN NO WAY RELATING MY LIFE TO A CONCENTRATION CAMP PEOPLE–just the numbness to Ben and Kelsey’s relentless struggles.  It could also be described as acceptance, which is something I struggled with for awhile but have achieved, I suppose.  I tried to cry and let it out on Sunday when I learned Dave had to go back to work the next day…the nerve! (love ya babe and how hard you work for us!)…and that our one-on-one time at home convalescing for five weeks would begin, but I couldn’t.  Not as much as I wanted to anyway.  Numb.

All of that being said, Ben is recovering as he should be.  He has daily pain, but most of it is handled quickly with a heating pad and his medicine.  He’s sleeping a lot, but we just got word from his surgeon that backing down on the Valium he’s taking is a good idea which should help the lethargy.  He’s moving a little more each day, but he’s nervous to do so.  Apparently all of this is exactly as it should be from our surgeon’s perspective so that’s reassuring.  Ben’s appetite is nowhere near it’s normal, but it’s increasing.  He’s playing a little more too which is good to see.  It’s hard to remember to be grateful at a time like this, but it’s such a relief that there doesn’t seem to be any infections brewing or complications from the surgery either.

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Pathetic picture of reality

I do feel sadness that Ben has to deal with this. He knew why he was having surgery but at 11, there’s no way to truly understand it.  Bottom line it was to protect his kidneys.  Who cares about their kidneys at 11?  Even as an adult, unless there’s an acute problem, we adults don’t protect all our organs as much as we probably could.  So imagine being a preteen and having to endure all this crap!? He doesn’t seem to complain about it as much as I worry about it, though so that’s a relief. It’s also bittersweet.

Another thing that I constantly worry about is making Ben’s time home productive.  He is missing so much school (six weeks at least!).  I will beat myself up in the very near future that I’m not forcing him to read and practice math on the reg.  I even considered having him do a project for the Science Fair during this time at home so that he could be involved…and then I thankfully reconsidered. Ha! The county in which we live will eventually send a Home/Hospital teacher to the house for a couple of days a week to do some instruction.  I’m not sure how it will all play out, but hopefully enough will be accomplished in their time together that this can be one thing to take of my worry list. Doubtful though.  When the kids aren’t at school I am ALWAYS critiquing myself in how little I make them do educationally.  I am no Tiger mom by any stretch.  And that stresses me out.

Okay, I guess I’m not completely numb.

So, could be better. Could be worse.  Patience is not a virtue for me so I’ll try to remember to put my head down, soak in the numb, and hold on for the next month or two.  And to look forward to the next season which is hopefully less awful and more amazing.  Hell, I’d settle for mundane right now.

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Thanks, Tribe.  I couldn’t do it without you either.

Xo,

KIM

Final Update

Good evening!

The Larricks are now safely all at home, ready to hunker down for the latest winter storm. Springing from the hospital is not the end of this journey for them. Quite the opposite. It’s the beginning of a long road of healing and learning a new normal…again.

This is where I give the helm back to Kimmie. If you want regular updates, be sure to follow her on Instagram (@kimlarrick) and/or Facebook. Now, I just return to observer and supporter of this amazing family.  They handle so much with grace and love…and a heaping dose of humor (as Kels would say, “womp, womp!”).  It’s been my joy to be able to help in some small way to carry a bit of their load. Thank you all for your patience. Please join me in continuing to pray for Ben’s recovery and the whole family’s resilience. As much as they endure, they truly are a gift.

I love you, Larrick family!

Update #10

They have been approved to go home today!!!…but he’s got some big hurdles to get over before they can officially go home.  He needs to eat, poop, and move…but he has no appetite, moving hurts, and he won’t support his weight.  Let’s pray this all improves throughout the day so that they really can go home!!

Update #9

Ben’s back to a full diet, but pacing himself with smaller portions. The epidural is out and his spirits are improving. That said, they are all READY to break out of the hospital. They’d love an early release of tomorrow, but Wednesday at the latest. Let’s pray the doctors agree!!

Update #8

Not surprisingly, Ben’s had some great improvements since they allowed him water…and food!  His mood improved; his pain is well managed; the urology team is happy with his progress. They are hoping that the epidural comes out tomorrow and they remain on track to leave the hospital on Wednesday. The whole family is ready for Ben to convalesce at home. That’s everything for now.