Tag Archives: illness

Life With Trisomy 18

Last night I was thinking about what life would be life if Lillian didn’t have Trisomy 18. I thought back to her diagnosis and how devastated I was that she was going to be sick. I was scared about how our lives would change to accommodate for her needs, and even more scared of the thought of living life without her. I knew that one or the other would be how things played out. It’s been over 2 years since I became the mother of a medically delicate child. So last night when I was thinking about where we would be now if Lillian was “normal” I just couldn’t imagine life any other way.

So many times I feel like having a disability is looked at as a bad thing. We live in a society where different things are assumed to be bad. Being the mom of a medically delicate child has opened my eyes to so much. I, too, once thought that being differently abled or being the mom of a differently abled child would be absolutely awful. Life shook me around and showed me that is not. It’s hard. But it’s also crazy beautiful and wonderful and worth it. Life with Lillian has opened my eyes to an entirely different world—a better world.

The truth is, Trisomy 18 has shaped Lillian, and me for that matter. Lillian IS NOT Trisomy 18, but she does HAVE it. And it does make her who she is. She wouldn’t be the same without that extra chromosome. She is perfectly imperfect and I wouldn’t have her any other way. Would I take away the sickness? Sure. Would I take away the short lifespan? In a heartbeat. But would I change anything else about her? No. Having a child with different abilities is one of the best things that has ever happened to me. She has taught me so much about so many things. I could go on all day about it! She is THE sweetest, happiest child I’ve ever met. And I honestly don’t think she would have the same personality if she didn’t have Trisomy 18.

There are many many days that I say I “hate” Trisomy 18. And what I’ve realized is that it’s not Trisomy 18 that I hate. It’s death. And we are all going to die. So I choose her. I choose happiness. I choose positivity. And I choose to live despite the inevitable.

**If you are interested in learning more about Trisomy 18 or following Lillian’s journey, please check out her Facebook Page here https://www.facebook.com/trisomy18princess

 

Written By: Alivia Kraft

A Bunny Makes A Great Listener

As I am feeding fluids to my daughter’s new bunny with an eyedropper, I am abruptly reminded of my daughter’s first years where I had roughly the same fight each day. This bunny means so much to us and I tell him this. He needs to stick around.

There is no accurate way to describe the heavy, sick feeling of desperation and terror that accompanies having an infant who cannot breathe, who cannot nurse or easily drink. This bunny forces me to remember just how much I hate that feeling. “I can’t lose this one” should not be a mantra for your life yet it was mine for a very, very long time.

This little bunny reminds me of the painful past we both survived.

This little bunny reminds of all we do as Moms.

How we beat ourselves up, turn ourselves inside out, drag ourselves to work and back, power through a stomping child’s tantrums, emergency room visits and the landfill of toys that is your house.

This bunny reminds me of what I have done.

With complete certainty, I knew my daughter was meant for me. She was my Rory Gilmore. It was going to be rainbows and puppy dogs forever. We would hold hands and skip off into the sunset.

So why can’t we get out of our own way? Why can’t we just enjoy each other each day?

Sucked down in the muck of trudging to work (and school), the sadness of leaving them only to have your hopes dashed at the end of the day when, excited and happy to see your child, you get a possessed Linda Blair instead.

Why can’t I handle her moods better and create a warm-happy-daydream evening for us every day?

I dream of long vacations where there are no time constraints, no looming job over my head, no homework, no chores, no mess. When we do get a vacation every few years, it is bliss and flies by in a blink. So how do I create a vacation kind of bond with my child? How do I feed that tethered link of love and connection every day?

The answer I have is to listen.

Listen with my nose in my phone? Nope. I must listen with my whole being. Listening with all of my heart and my eyes wide open is like directing a beam of light shining down on her that says,
“I care. I give a crap. I want to know what you do, how you think, what you dream about.”

Obvious, right?

My challenge, see how long you can listen to your child without putting away groceries and turning away, without putting away clothes, cleaning up a mess. Just stop. Maybe it is not always feasible but the times you can, do it. Make it a habit. Research suggests it takes 21 days to form a habit so try for 21 days to take moments of the day to stop everything and listen.

I know. I am the only one that keeps us on a schedule too and in the morning I often say,
“You can tell me in the car.” ”You can tell me after we get home.”

Sometimes she just needs me to stop and I feel I have forgotten this.

This little bunny is part of my elaborate plan for everyday is a vacation, when you are doing what you love with the people you want to be with. This means mom-daughter bonding moments in the care and cuddling of bunnies and road trips to rabbit shows. We joined 4H, which means among other things, visits to farms, joining a rabbit club, holding and posing animals. “I recommend 4H for every child. There are limitless opportunities to grow and learn with 4H. Real world opportunities for kids to master their future. And for us, 4H is the vacation in everyday life that we get to repeat every week.

A lot rides on this little bunny. My daughter now has a little furry person of her own to worry about, to care for, love and cuddle. Who will hopefully drink.

Thank you little bunny. Good talk.

Bernae

Life Ain’t Always Beautiful

 

 

I’m the baby of five children with eleven years separating me from the youngest of my siblings.  You can rest assured that I’ve been asked at least fifty-eleven times if I was a mistake.  The short answer is no.  Have you ever known me to stop with the short answer?  Okay, so you know that this time is no different and you know that I have a story to tell.

My grandfather, my Mom’s dad, was an electrician, and they moved around quite a bit.  When they lived in Kentucky though, they lived about a block and a half away from where my dad grew up.  My mom and my dad went to the same school during those years and walked the same sidewalks and my dad thought my mom was the most beautiful thing he had ever seen.  I wish I had a dollar for every time I made my mom tell me this story.  She was so very shy.  She knew that Dad had a crush on her and so she would see him coming and she would cross the street to the opposite sidewalk to try to avoid running into him.  Lord knows that every socially awkward statement that has ever come out of my mouth was the exact reason my mother opted to go with avoidance.  I regret nothing.  I wish.

By high school, my mother was living in Michigan and my dad was in a military boarding school.  Their lives had moved in totally different directions.  Mom graduated from high school and got married.    Mom had four children in a very short period of time.  Which is why when I say she was always the most patient person alive, I can speak with confidence.  Dad joined the Army, got married and when the Vietnam War began he found himself in Japan.

Then the unthinkable happened.  My mother’s first husband was tragically killed in a motorcycle accident.  My mother was a widow and my siblings had lost their father.  I can’t imagine what that time was like for my mother but she ended up packing up her four young children and moving back to Kentucky.  Around the same time, my dad was newly divorced and also making his way back to Kentucky…

So this is NOT where I’m going to pretend that their marriage was magical or perfect or even hard in the way that every marriage is hard because I don’t think that would be accurate or fair.  I think it was pretty difficult.  But I also think that my mom really, really, really, loved my dad, (and I know she still does), and I know that my dad really, really, really, loves my mom and always has.

Dad is in the hospital.  It’s becoming the norm lately.  I guess that’s how it is when you have stage four cancer.  I have sat with him through appointment after appointment and over and over I have heard doctors ask him what he wants.  What his expectations are.  What his concerns are.  What questions he has.  Over and over I have heard  his answers begin with, “My wife has Alzheimer’s…”

Tonight was no different.  The cardiologist asked him if he wanted them to try to resuscitate him if he coded and Dad began with his usual, “My wife has Alzheimer’s.”  Then he continued with the same responses I have heard him give every single doctor since he was first diagnosed.

My wife has Alzheimer’s.  She’s in Calvert City.  I just want to be able to drive there to see her.  I don’t want to be too sick to do that.  I just want to be able to see her as long as I can.  She looks forward to seeing me.  She has the biggest smile when I walk in.”

Their marriage wasn’t perfect, but maybe love doesn’t have to be.

Life ain’t always beautiful, but it’s a beautiful life.

<3 LA

You can see more of LA at https://sweeterinthesouth.blog/

Halfway To 90 and Still Going Strong

My next birthday will fall upon Wednesday of next week. I will be halfway to the age of 90.

Let me take a breath to take this all in, insert heavy pregnant pause here. This drove my mind today. Try as I might, the numbers weren’t posting because my brain was sitting in Las Vegas. At a very posh hotel, baking in the sun, drinking a pina colada. This was how I celebrated 40.

What could I say at 40? I pontificated while sunbathing by the pool. Trying to feel adult and put together a respectful lesson to deliver on the return  to KY. Have I found the key to success? Did I have it all? Was I ever going to go back to college? Chase my career of working in law? Too heavy a subject for that day. I did keep asking myself: what is 40? Until I came home. And for the next 60 days, it was the same question. My much anticipated aha moment came in August.

Literally, overnight, a rash erupted on my lower arm. The biopsy returned with sjogren’s syndrome and Systemic Lupus Erythematosus. I sat in shocked silence. This was the answer to my fatigue, to the butterfly rash on my face, the reason why my eyes are dry. Yes! I have the reason. Great! Flip that onto the not so great. I have two autoimmune disorders that are incurable. Chronic for the rest of my days.

This was the awakening that I was having for 40. It was time to chuck the small mindedness of everyday life. It was the kick in the backside to learn to enjoy my time on Mother Earth. It was time to live my life out loud and to do as I please. It was time to step forward and “do me”.

Five years later, I still wake up with the same credo. It hasn’t failed me yet. Don’t wait for the diagnosis to get your attention. Step up everyday and “do you”. It’s the best feeling in the world!

Striving for exceptional-Tristen Ahlsey

Warrior Moms-I am With You.

Warrior Moms, I am With You.

 This is my introduction.

I did not sleep when my daughter was an infant. I held her as I sat upright on a couch while she slept. I held her so she could breathe. I wore eye shadow as war paint so my employer couldn’t see the dark circles, to keep my job.

I breast fed every 4 hours and pumped milk in between so she’d have enough.
I fought doctors, begging them to trust my instincts and listen, screaming I may be a new mom but I know my child. She had sinus infections before a literal sinus, lung collapse, recurring pneumonia and sleep apnea until her emergency surgery (with pneumonia) at 10 months old.

At the age of 3 she was diagnosed with an immune disorder which meant sinus infections 11 months of the year until she was 7. I battled and battered my body, moved us three times, tarred the driveway, and found a way.

It is worth it. You can do this.

My first dog (& co-parent) was diagnosed with cancer three days before Christmas. I sold my jewelry for her medicine, cooked special meals to starve the cancer and lost her (my heart) after an 11-month battle.

I dragged clothing to 10 years of consignment sales and shopped garage sales for toys and clothes. I changed jobs three times and haven’t had a date or break in almost 11 years.

I am with you, warrior moms, who have chronically ill children, work full-time, have a full plate, and have no spare time for you. You can do this.

My daughter just had her ballet recital. I watched her smile. Pause, breathe… arms out… jump and soar.

And I watched her bow.

It is worth it. You can do this.

For better or worse, it’s me.

Bernae

Influenza Or Something Else….

There has been A LOT of discussion, warnings, and talks about this winter’s spout with Influenza. Unfortunately, I have seen many deaths on the news, attributed to the influenza and that scares the BEEJEZUZ! outta me, I cannot even imagine.

I was sick last week and ended up having sinus infection and started a round of antibiotics, something which I don’t really like to do until absolutely necessary, it was necessary. Sunday-Tuesday morning we brought in a blizzard, and I was down again with a fever, chills, headache, etc on Monday night. I was fairly paranoid most of Monday night and through the night and then remembered an article I had shared on Facebook to help distinguish the difference between the Flu or the common cold. We don’t like to bum rush the Dr.’s for every little sniffle, ache, pain….but that flu is SERIOUS. My children go to public school and many of the public schools around us have been shut down for a few days, cancelled sporting events, and so on.

I am going to post the article, I found it a great personal help as to what was going on with me. My son is home sick today and I will watch over him the next few hours to see if he becomes worse in a fast way. My brother tested positive for Influenza yesterday, he said it came on so fast he couldn’t believe it, within an hour he went from running errands to needing to go lay down NOW!

Use the article as a reference, look for the red flags but don’t question your gut feeling!

How many days till Spring?!?

Love to All-Kim

 

Being Blind With Anger

I have been angry, upset, disappointed, confused and so much more the last few weeks. I haven’t blogged as of lately, and my last few blog posts have been a lot of complaining! That is generally NOT me! Days and days of just being miserable and bitchy…and then BLAM! It all happened so quickly, in 8 days to be exact, my husband’s best friend, who also happens to be his brother, went to the Emergency room with an excruciating stomachache and thought maybe he was having gallstones or something to that degree. Instead-he found out he is suffering from a very rare form of lymphoma. Although, I guess he doesn’t know this yet. It just depends on what he can hear us talking about  while he’s under sedation. We saw him Friday, sat at the hospital & visited with him a better part of the day-he was to go in Saturday morning for a quick procedure and he hasn’t been awake since. Medically induced-but holy it went downhill fast! We have received very little good news since then and most of the news we have received has been horrible. I guess what can go wrong has gone wrong. My husband has spent the last few days holding together his family(brothers, sister, sister-in-laws, nephews) and I have spent the last few days trying to hold him together, he’s exhausted and I am exhausted for him. He has lost a sister, his mother and his father all within the last 3-5 years. He is scared and he is PISSED off! He is ever so angry. It’s one of those things where I cannot love him enough to love it away. I feel helpless, he feels helpless.

We’ve had this discussion quite a bit over the last few days about why children, good people, kind people, loving people suffer such tragedies like this! His brother happens to be one of the best people I know-he and my husband are cut from the EXACT same cloth. We question why him?-why do crappy, mean, sinister, cold-hearted people get a “Free” pass?  Why can’t these diseases be the hell on earth that THEY deserve…not my brother in law!

I know-there is a bigger plan, a lesson to be learned from all of this-and I am not to question it. And I truly try not to, but it is rather difficult. I hope this lesson-plan is a BIG meaningful one.

What I have seen and what I do know is that there are so many beautiful people in this world! I often begin to lose Faith in humanity and the lack of respect and kindness. But it never, ever ceases to amaze me the words, prayers, gestures, and love that is felt in times like these. And maybe that is the lesson, to remind people how to be compassionate and kind to one another. Not to sweat the small stuff and to be angry over those things.

Please say prayers for my brother in law and our family.

Love to All-Kim