Sharing the Burden

For over twelve and a half years, Dave and I have lived in fear. Real, tangible fear that our children might become irreversibly sick, immobilized, and even die before us. When Ben was 3 days old, a nurse told us he might not see his first birthday, let alone his 10th. Almost exactly 7 years ago, doctors told us our unborn daughter had brain damage and hydrocephalus.  We hadn’t even met her and I can say I have never (and doubt I will ever) been more afraid than I was on that examining table.  During their ten, combined and extensive surgeries, seizures and procedures that would follow in the years to come, the fear factor is great. Would they wake up? Would there be permanent damage from anesthesia? Would the surgery fix what it was supposed to? Will she be paralyzed forever? How long would the recovery take? Could we handle it? How would we manage their “new normal.”

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This fear was so isolating. So lonely. We have always been very open about our story because it feels better to share the burden than to manage it alone. About six months ago I was feeling so overwhelmed by our life. Ben’s surgery in 2019 turned our normal upside down. I had been handling our special life for so long that I felt like no one could really understand how it had multiplied (again) and what new challenges we were going through. How could I discuss things like screen-time and travel teams with my friends when, medically, we were handling so much? I reached a breaking point and wrote an email to my nearest and dearests to describe how I was feeling and what Ben, and we as his parents without medical training, were going through. Sharing the burden was so freeing. Not a thing changed with what we had to do each day and night but knowing that my people had a better clue as to how we were surviving was so helpful.

Not long after Ben was born, we started looking for support from other parents who could relate to our situation. Finding other families who were affected by Menkes Disease wasn’t easy, especially in 2007 without social media and a diagnosis rate of 1 in 200,000. Thankfully we found a few who I call some of my closest friends now, which I think is pretty remarkable. Once Kelsey came along, I searched for families that had experience with her many diagnoses. Finding someone like that, alone, still hasn’t happened. I’ve given up hope on finding a family who has TWO children with challenges closely related to ours. Humans and mothers crave connections and empathy. We want our children to shine but we also want them to be just like the other kids.

Since the start of the pandemic we are living through, one thing has been obvious to me. We are sharing the burden. With the whole world. Not a single person has been immune to Coronavirus or it’s impact. There is a shared misery of the stay at home orders. Schools being canceled. Trips being canceled. Life being canceled. Knowing that I can text my friends and say “I HATE THIS” and they will promptly reply with a “I KNOW! I DO TOO!” is comforting and also unfamiliar. Usually I’ll blog or text or chat over a dinner out (remember when we could do that!?!) about our family struggles and the response is “I’m sorry. I don’t know how you do it. You are so strong.” But during the pandemic, the feelings are mutual. Shared.

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Daily experience with fear has definitely given me different perspectacles when it comes processing Covid-19. During this parenting season of our life, we have decided NOT to live in fear. We HAD to face challenges like surgeries so our only choice was to listen to the experts and trust our gut. Even when our gut was ready to puke because we were so scared, we had to put one foot in front of the other and sign up for heartbreak and hardships. We made our best judgements to help our children and to live a full life. We also took the trips, played the sports, and danced the dance when it looked different from everyone else. We wanted to. We had to–despite our fear.

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Walking at the park without a mask.

After two months in quarantine, I can see how fear and judgement is creeping in when it comes to considering resuming our old life. Some friends are planning on never flying again. Some plan on flying with their spouse but not their kids. Some haven’t left the house. Others have isolated with certain friends and family and others haven’t seen a soul. Some wipe down their grocery bags. Some walk in the park with a friend in a mask and others play with neighbors everyday. Some will travel to Florida and others are scared of Ocean City.

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6 feet apart on St. Patrick’s Day

I think the best we can do is our best. We can listen to the experts and make the best decision for ourselves and our family. And even though we all have the shared experience of this pandemic, we should remember that we are all different and we all want the best for our friends, family and communities.

Happy Mother’s Day to all of you and yours. May this weekend be healing and replenishing to your spirit. And let’s be sure to show up with love and a collective compassion to everyone who is just doing their best to survive.

Love,

Kim

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A special shout-out to my Mom who takes more than her share of our burden. Happy Mother’s Day!

 

 

 

Pains and Blessings

At the end of January, I started a bad cold. It was the same cold my lovely, 5-colds-a season, daughter had. My version turned into bronchitis. It was miserable. But the real fun began when the coughing was so bad that I broke a rib! Well, I think I broke a rib. My doctor said it was more likely a pulled muscle.

Well. Whatever it was, that $h!t HURT! I couldn’t do anything. I was in so much pain. Coughing, bending, laying, sitting, sleeping…were all torture. No pain killers, not even the opioids the doctor gave me, worked. I begged Dave not to travel early, one Tuesday morning as he was suited up and was ready to head to the airport. He had to go, but promised he’d come back early.  I had to rely on neighbors, family and friends to survive until his return.

But guess what happened? Since I could no longer lift Kelsey onto the toilet, onto the bed and onto the barstool for her breakfast, SHE HAD TO DO IT HERSELF! Because of my broken rib, she became a more independent child!

I learned that Kelsey, can in fact, pull her pants up and down on her own.  Her cute tushy hangs out a good bit of the time but it’s good enough for me! She has gotten just tall enough to shimmy back onto the potty and back up again. Now, a lot of this is owed to her wonderful “close adult support” at school who demands more of her than I do, as well, but the need at home made it more of a reality. She still seems to need us to come in and talk her through the process, and has had accidents while waiting for that support, but we are getting there.

After her seizure, and resulting paralysis, a year and a half ago, she is still experiencing limited use of her left hand. Before that seizure, she could climb up and down onto the barstool where we eat most of our meals and onto her trundled daybed. But after the seizure–18 months later–she was back to being hoisted up and down because she didn’t have the second arm to do the work. That’s a lot of lifting of a 50 pound, dead weight kiddo.

Because of my immense pain, I literally could not lift her. So for meals we switched to eating at our beautiful, neglected farm table. She has a chair with a footstool at the table but that, too, was always too involved for her to get into on her own. Since I literally could not even help her get into a table-height chair–she had to do it on her own. And apparently, after many tries, she can! Hallelujah! She still can’t climb onto the barstool like she once did but she’s getting taller and soon enough I think she will be able to slide down, a la the toilet!

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Post nap while I was in the shower, she got up there all on her own!

A month and a half later, I’m still experiencing pain from the pulled muscle, broken rib or a combination of the two. I can’t lay on my back and sitting for long periods of time, especially in a comfortable, lounge-y chair is still painful. I can only sleep on my right side. It sucks but it’s much more manageable.

I tell you all of this in hopes that the social distancing we are doing to flatten the curve from Coronavirus will also yield some positive changes in our family and yours. Right now? I can’t see it. I’m pretty depressed with the thought that the kids will not go back to school for a lonnng time. Please don’t mistake this post for a Pollyanna view on things. I am NOT happy. The kids are NOT happy. I don’t want to teach them, nor do I want to have a picnic at the stream on a Thursday afternoon in March. I don’t want to watch a virtual trip to the zoo or even bake cookies.  I don’t want to take my almost-seven year old–who doesn’t understand why she doesn’t have school and can’t go out to lunch at The Greene Turtle– on an hour ride in the car, because even at her age it calms her like an infant.

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But, maybe it will become more manageable. Maybe our kids will learn to do something they couldn’t do before (No, Karen, I’m not talking about changing a tire or learning Spanish). I’m sure there will be silver linings and ways to look on the bright-side.

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Cute Ben who cooked up this cheese platter and invited me onto the porch to enjoy the warm weather.

This morning I decided I needed to go back to listing three things I’m grateful for before getting up. Just like Oprah taught me. Gratitude always sets your mind in the right direction. Today I’m grateful that no members of my family are essential employees that have to go to work. I’m also grateful that today is Saturday and Dave can be on Kelsey duty. And finally I’m grateful that we have a spacious house with many rooms, corners and outside spaces to get away from my beloveds when they’re driving me freaking insane.  🙂

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Solitude I can get-behind

What are you grateful for during this weird time? More importantly, what’s driving you out of your mind? What are you pissed about? I find I feel better when I know others are suffering along with me!!

I know…we can do hard things…it could be much, much worse…blah blah blah. Some times a good gripe session is also very healing.

Good luck today, friends.

Love,

Kim

Hallmark, Take Me Away.

We have been watching a lot of Hallmark Channel lately.  A lot. We have. That’s right Dave loves Hallmark Christmas Movies as much as I do. In fact, it was he who coined the phrase I used as the title for this post one special night at dinner when it felt anything but idyllic.

Hallmark has nailed the formula. Pretty people, festive scenery and one-of-three story lines that always end up with a happy ending. Even when someone is “struggling,” they manage to make the challenge, well, something right out of Hallmark. The foster child is running a coat drive for the less fortunate like him. The parentless adult child (every single movie, right?) has siblings who like to have snowball fights with cocoa afterwards instead of real life where resentment is harbored and eye-rolls are the norm. You know what I mean, right?

I’d imagine if Hallmark did a movie on my family, we’d show up on the drama-version on Movies and Mysteries channel instead of the happier Holiday Romances. More strife and more challenges but still beautiful. Stressful but Successful, as I always say, right?

Lately I do feel like the movie reel is rolling on our life. Kelsey is struggling. She’s been sick for a month, having trouble in school and going through changes with some of the main-stays in her life.  We changed churches and we changed physical therapists…twice!  She loves school but is finding the frustrations and challenges harder to deal with than in the past. She’s been refusing to work, hitting her teachers (and family!) and throwing things. From what we can tell, her inabilities are catching up with her heart. She wants to do what her peers do but she can’t. Her teachers seem to be having trouble finding what makes her tick more than in the past.

Her inability to focus on tasks, her incessant chatter and her impulsivity has led us to explore the world of ADHD. That’s right. Another diagnosis. Turns out ADHD and epilepsy are closely linked.  Oh yeah, and Cerebral Palsy and ADHD are also often seen in conjunction with one another. Throw in a stroke and you’ve got yourself an atypical brain for sure.

So, in addition to Topamax for her seizures and amoxicillin for her sinus infection, Kelsey started on a stimulant to manage the ADHD symptoms she’s exhibiting. Oh and those symptoms are what we’ve been experiencing for 6 years. The ones that make me pull my hair out over the summer and the ones that turned that same hair super-grey years prior. We have always seen these symptoms. It’s just that this school year is the first where other adults seemed to highlight her short-comings instead of chalking it up to her initial diagnoses.  And for that, I’m grateful. In fact for others to see what we’ve been trying to explain her whole life is validating. But it doesn’t make it easier.

We will see where all this goes with new medications and new experiences, but in the meantime we all really use a little Christmas right now.

Luckily Ben puts us back in the Hallmark category.  He’s happy as a clam in middle school, praise Jesus! He’s winning character awards for helping others and ending himself up on the honor roll for his hard work.  We also managed to fit in some pretty spectacular festive fun this week with wreath making, holiday concerts and small-town shopping and parades.

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Our annual dinner of spaghetti and pizza in our town’s main street Italian restaurant before the annual Santa parade was last night. Kelsey was still fighting the cold, was overwhelmed by the crowds, by the chilly temps and by the noise. Dave didn’t even get to see the first group walk by because he was heading back to the car to calm Kelsey down. It was anything but what you’d see in the Hallmark version. Other kids (including my own) were jumping up and down, catching thrown candy canes and waving to their friends and neighbors in town. But Kelsey was crying and heading to the car in her most adorable festive frock. My instincts were to immediately feel sad. To look at everyone else with jealousy and resentment. To think “woe is me.” But, in true Hallmark form, I picked myself up and thought about ways to make it better next year. And then Dave and I came home, put the kids to bed and turned on Christmas in Evergreen on, you guessed it, the Hallmark Channel. We laughed at the blissful preposterousness of it all and toasted in front of the fire and Christmas tree.  Hallmark, take me away…

Merry Christmas, friends! May your season be full of health and happiness.

Love,

Kim

“He who has health has hope; he who has hope has everything.” -Thomas Carlyle

 

This is 41.

Today is my birthday and I thought a good time to reflect on my year.  It sucked.  Honestly I can say, without a doubt, that my 41st year was the worst year of my life.  Let me recap.  My daughter had a seizure a week after my 40th birthday that caused paralysis of her left side that lasted for six months.  She has still not fully recovered and I’m not sure she ever will. The doctors are stumped…what’s new?

Then my son needed to have a 12 hour surgery to fully reconstruct his internal organs.  That surgery took six weeks to recover from and a lasting, life altering situation that he deals with multiple times a day and night.

After that, just as he was learning his new normal, my daughter had a seizure on her 6th birthday that set us back again with development.  That was crushing and I’m still pissed because birthdays are precious to me, and if it can happen on a birthday it can happen any time and the possibility of a seizure has us worried on the reg.

Soon after her birthday, summer came and it was a lot of care-taking which definitely takes years off my life, but was virtually catastrophe-free. BUT, Kelsey did have surgery to remove hardware from a surgery the year before.  So more anesthesia, immobility and wound care.  Oh and they left a staple in her back which required removal post-hospitalization.  But that’s all catastrophe-free for us and “no big deal” when it comes to our rap sheet.

I could write a book.  But would this year of my life be one chapter or five? Who knows.

As I look ahead, I see healthy kids (KNOCK ON WOOD) who are doing well in school.  They have off today and tomorrow (lucky me!) and we will spend the day shopping and dining with friends and family.  It also happens to be my husband’s birthday and we were lucky enough to get away for the weekend to celebrate.

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I can also look back and recognize that even through all those trials this past year there were also so many things to be grateful for.  And that’s life isn’t it? If we don’t know this at 41 than we may never figure it out.  Life is about every up and down along the way and how we choose to focus on it makes the days we experience full of gratitude or dismay.

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So Happy Monday, happy birthday to me and my love, and in honor of Rosh Hashanah, “Leshana tovah tikatevee v’tichatemee,” which means, ‘may you be written and sealed for a good year.’  I love it.

Xo,

Kim

 

 

 

Summer Manifesto

I have mixed feelings about summer every year.  Being a stay-at-home mom of two special kiddos, summer means non-stop entertainment, nursing and care-taking.  At school, Kelsey alone has about 10 people taking care of her.  Someone to help her learn, someone different to help her play outside, another person to help her eat her lunch…go to the bathroom, communicate, draw and have fun.  Ben has some extra teachers too. But in the summer, that’s me.  Moi. Their one-and-only.  I’m a schedule girl.  I like routines.  So the freedom of time in the summer makes me a little twitchy.  For that reason, I have written our Summer Manifesto to help us survive and enjoy these oh-so-precious moments.

  1. Slow down.  We typically do a lot of rushing.  Rushing to get ready. To leave. To come home. Hurry up! Let’s gooo! This summer, we will try and stop to smell the roses.  We will take our time.  The days are long! This is not an aphorism.  In the summer this is TRUTH.  There is no point in rushing.
  2. Clean up.  In regards to not rushing, we will clean up after ourselves. Yes the children are making memories but they’re also giving me a migraine!!  I don’t like messes! There I said it! Disorder makes me feel out-of-control and I don’t like it.  So with all the time we are savoring, we will clean up before we leave the house. I’ll make Ben grab the fifty things he brings into the car when we return home to put away.  I’ll make Kelsey clean up her own mess before making a new one because this is something she CAN do, but it’s usually just easier to do it myself, so I do it…or ignore it for days as my anxiety quickly rises.
  3. Learn to deal with messes.  #2 above sounds ideal.  But I know it ain’t going to happen.
  4. We will be productive and active in the morning and sloths in the afternoon.  Period.
  5. We will have screen time and that’s ok. I’m raising kids in 2019! Let me live my life! And if you’re better than me at limiting it to an hour a day, that’s amazing.  I’m better at stopping a seizure and catheterizing kids.  You do you and I’ll do me.
  6. I will take off from work in July and August. Ha!  I know I just started my business, Kim Larrick Concierge, in June but what can I say? I’m the boss and I make the rules.  My regular summer hustle is too much to handle…I can’t have the side-hustle too. Contact me to set up September consultations! ;-))))
  7. Let the summer school work go.  In case you hadn’t heard, Kelsey is repeating kindergarten.  After the number of seizures, hospital visits, paralysis and prematurity, we decided to have her repeat kindergarten.  Therefore she is ahead of the game and I won’t worry about facts and sight words and the rest.  Ben will have tutoring and that will be enough to fight the summer slump.  I’m taking it off my plate of guilt!
  8. Appreciate the health.  It’s really easy for me to get caught up in how hard our life is.  But helping Kelsey in and out of the pool 18 times in an hour because she’s healthy and strong is much easier than stopping those seizures and being in the hospital.  And I will try to focus on how Ben is healthy and free from constant infections instead of all the hardships he has to tackle on a daily basis to stay healthy.
  9. Play.  I don’t like to play.  Uno is fun once a week but other than that, no thanks. But I know the kids want it from me.  And I do feel “productive” when I play with them and I like feeling productive so I will try to play with them once a day.  LOL! I’m a mess.
  10. RELAX.  As you can tell, I’m uptight.  Type A.  A Perfectionist.  I’ll try and fight all that and relax with my kids because I can already feel Ben growing up and maturing, and I know I’ll miss these precious summers when I felt crazy and stressed. I may have a full plate, but my heart and hands are full of love and happiness.
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Last Summer’s Fun!

 

I hope everyone enjoys their summer too!

Love,

Kim

Kim Larrick Concierge

Ladies and Gentlemen! I’d like to announce my newest venture!  As you may know, Retail Therapy has always been one of my favorite ways to cope with this challenging life I lead. It’s a healing activity for me, albeit a tough one on our bank account.  So, I’m going to put my talents to a more useful purpose and shop FOR YOU!

Do you hate shopping?  The lines, going to multiple stores, picking through racks!?

Are you short on time and shopping is at the bottom of your list?

Do you love parties but hate planning and finding supplies for them?

Do you want to spruce up your space but don’t know where to start?

Do you need the perfect outfit for an event?

Do you need help looking put-together for work or social events?

Well, I’m your girl!

For $20 per hour, I will help you plan and shop for your home, your party and your closet.  Attention to details, organization and creativity are all things that I excel at.  

HOME-I will come to your house, look at your space, discuss what you like and dislike, and make a plan for helping you to find the perfect pieces to make your home feel warm and inviting, and look wonderful.  I’ll go on the hunt for the pieces and come back to help you decorate.

PARTY- It’s all in the details and themes are my jam!  I help you plan, shop for supplies, and organize the timeline and party prep.  I can make your Pinterest Party Dreams a reality!

CLOSET-I’ll help you assess and organize what you have, get rid of what you don’t need and find the right items and accessories to make you feel confident about what to wear each day!

Contact me today and we will get started! I can’t wait to help you!

Love,

Kim

kim.larrick@gmail.com

443.996.4689

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