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Some Days are Feels

25 Apr

I woke up early today for a medical appointment for my kiddo I knew I dreaded.  As we have been transferring medical care to new providers in our new(ish) house we are revisiting all of their diagnoses.  So every doctor visit requires me to go through a shortened draft of nearly ten years of medical care for my middle daughter and remembering when symptoms started.  It is emotionally and physically draining.  I have to mentally revisit some of my worst memories every time I have to explain her NICU stay, hospital stays, her brother’s diagnosis, surgeries, while I am not only being evaluated as a mother but I am evaluating this new provider.  So today was specialist number five (?) visit of the year where we saw the ENT and confirmed our kiddo needs a tonsillectomy.

We have known this for years.  Her old ENT wanted to wait until she was about nine (and almost ten now) that visit was coming up.  But, no parent wants to prepare for surgery no matter how big or small it is.

She also had an audiology exam as her hearing is monitored with Trisomy 21.  She’s had a small loss, not really symptomatic as I believe she chooses when she wants to listen to us instead of not being able to hear us.  Because it’s her and she has this attitude of “if I don’t want to I won’t” halfway into her hearing exam she chose not to participate.  In all fairness, they examined her by having her repeat instructions and play a game with the student audiologist.  She is nine.  There’s only so many times you can enter an item into Elmo upon command.  The audiologist asked me the dreaded question? “Would it help if you went in the room and helped encourage her?”  Here is where I was stuck.  First, if my girl doesn’t want to do something, there is nothing that will get her to move.  Not the promise of potato chips (her favorite food), not even asking her bear to help.  Nothing.  You could move a mountain next to her and she would sit cross legged on the carpet staring at you with this face.


I had her sister with me as well.  A girl who does not like strangers, who takes the dog to another level of the house if none of us are there so she isn’t left alone.  The girl who I had to sleep next to for the first three years of her life or she would wake up screaming.  The option to bring her in there was futile.  She would be kind enough to help her sister and there would no longer be any listening to the headphones as they would either have a grand time entering toys in Elmo or start throwing them at each other in anger while the student ducked.  Leaving her in the room alone with the audiologist wasn’t an option as I know she would sob hysterically as she couldn’t come with.  So…we left it incomplete and I can reschedule for another time when her siblings are in school and my girl only has me (and I only have one kid to think about).

So I came home from that impending appointment frustrated from the five thousand questions her curious sister asked me as I was driving in downtown Madison (Why is that man not wearing his bike helmet?  Can we get a milkshake? Can we go to Target and get a toy, we were good during the appointment?  Why do we need to go back to school now, why can’t we stay home?  Why is that orange cone there?”  Not to mention my anxiety ridden brain is considering every stage of doom that could happen from a tonsillectomy.  (Logically I understand it’s really okay.  But tell my emotions that).

Then the mail truck came and I got a preordered book from my favorite author.  It made me smile.  And when I turned my phone on to play some music and possibly get some freelancing done one of my favorite songs came on.  And I texted some lovely people who listened to my craziness and assured me, I’m really not crazy, I’m a mom.  We tend to overreact at times.  I might push that to the limits, but I get over it.

And I wrote and was able to accept a phone call from my son’s previous medical supply company and tell them where to go in a polite manner.  They took three months stringing me along for my son’s continuous glucose meter authorization not bothering to tell me what was needed until it was too late to get that information.  When they finally explained what I needed today (what I already knew from reaching out to his doctor’s office and the insurance company) and suggested I call my insurance company to request special circumstances I was able to say “I did.  And you may cancel that order and any future orders as we are now working with another company based on their recommendations.” It was a satisfactory middle finger to my cellphone and left me smiling when I hung up.


So while, I may not always have this balancing thing figured out.  While I may still have my anxiety patterns I also have learned to enjoy the good along with the scary.  My dog and I sat outside and stared at the flowers in my back yard for awhile.  My kids are safe at home, we have food and shelter.  We have medical care.  We have fresh water.  And I have my family.  My husband who after a long day of work is willing to take a walk around the neighborhood with me, my son who will occasionally hug me goodnight, and my girls who climb in my lap all the time for hugs and kisses.  I am freaking blessed.  Not to mention I have this amazing group of followers who share their thoughts and feels with me sometimes too.  I am grateful for all of you as well.  If I can make you feel less alone, then I have done my job.

My curvy girl 

30 Mar

Today I took my daughter to the 5/12 doctor visits we have scheduled within a three month time span.  She went straight to the scale and pulled off her shoes, backed right up to check her height and picked up the crummy hospital gown and shorts and put them on, though she refused to let me tie them.  That resulted in giggles as she walked across the room and her drawers went straight to the floor.

But I also love this expression as she waited for this specialist to see her.  Even Lotso slumps over like “again?  Really?” 

Having a kiddo with Down Syndrome means you often have some medical issues to go with it.  We have seen cardiology, orthopedics, endocrinology, audiology, ENT, opthomology, geneticists and many, many visits to her pediatrician, not to mention horrendous labs and X-rays.

But recently we moved.  Well, six months ago, but we didn’t get established with this medical facility until 2017.  Once she met her new pediatrician we got the list of referrals.  

New clinic means new specialists.  And it means that I tell her story to a new doctor every time.  Sound like fun?  Not unless you’re having a giggling session with the sweet girl who patiently waits to say “hi!” to another doctor.

Today was her scoliosis specialist.  Back when she was five she was diagnosed with a mild-moderate curvature.  And we ended up with…the back brace.  She hated it.  She cried.  She pulled it off.  We duct taped the Velcro straps to keep her from removing it.  We put zippered footie pajamas on backwards over it to keep her from slinking out of it.  Finally, thankfully she outgrew it.  And her dad and I weighed the pros and cons.  We decided it wasn’t worth the torture it put us through (they are NOT designed for a non-potty trained child).  


I felt guilt.  Every day,  hoping that that choice was the right one.  Knowing she was comfortable and playing contentedly made it so much better.  But I still felt guilt.  Because I’m not a medical professional.  And what if my choice was hurting her more.

So today, after a long discussion where my husband and I agreed still we didn’t want to put her through that when she can’t understand WHY we’d put her in that, I braced myself for a new doctor.  I was ready to plead and ask for any other solution.

So, to my relief, this provider said “no.”  He said even if she was a newly diagnosed patient he still wouldn’t.  And I could have cried.  And I laughed saying “Good, because I was prepared to argue against it.”  And we both smiled as he said he’d rarely dispute a mom’s theory.  

So we are still watching it.  We will still do X-rays and see them again soon.  Until then we will continue to meet and explain our girl’s story for the thousandth time.  But…I have providers that work with me, listen to me and have giggling episodes with my kids.  For that, and a million other things, I’m grateful.

Relax…

29 Mar


The sun basking me with warm rays of sunshine, the waves crash gently on shore, my toes buried in the white sand and my pockets full of seashells.

If I try really hard I can see it. If I try harder I can hear it.  A few birds cawing, in the distance the pier crowd squealing.  

Bliss.

If I brush back my hair I can feel is stiff with salt, a gritty texture stuck in curls that my normally straight hair feels.  I could feel the sand stuck on my skin, shining with an almost glittery texture that smells faintly of coconut.  In one hand is a cup cool and sweating to the touch, I rest it on the blanket under me and turn the next page of my paperback in my left.

Alas, I did not vacation on spring break unlike quite a few of my Facebook consorts, but somehow I always manage to convince my friends to take photos or videos of the ocean for me to feed my soul.

I’m a beach girl at heart.  One who ironically lives nowhere near the ocean and will not step foot into any lake that isn’t clear so I can avoid the slithering feel of seagrass or fish touching my legs.  I shudder at the memory of that thought.

Telling a person with anxiety to relax just doesn’t work.  It’s not a switch I can flick and suddenly stop pondering what my children’s next medical specialist might say or something else not worthy of wasting my time thinking of. 

Thankfully I have tools:

1.  I walk.  It’s better without my dog yanking on my arm or him pulling tight because even though he’s 8 years old he acts like a puppy in the excitement department.  However, if I walk without him I then feel bad contributing to his separation anxiety and I feel so awful when I hear the sharp cry of him being stuck alone.  

2. I write.  Sometimes it’s just being able to type notes or story plots or blog post pieces in my phone.  Sometimes it’s a letter thanking someone.  On a good day I might actually be able to concentrate to work on a novel.  

3.  I listen.  Usually spa music will relax me.  I can close my eyes and hear the trickling water of a fountain or picture those ocean waves splashing at my feet.  Sometimes I fall back to a white noise app and listen to rain on a tarp.  That reminds me of camping as a child and listening to the rain fall on the canvas of my parents’ pop up camper.  

4. Sometimes I need touch to relax.  I love textures, especially soft feels and if you’ve never tried a weighted blanket try it.  I wanted to keep pieces of my children’s baby clothes to feel the memories, but not locked away in a plastic tote.  I wanted a quilt.  And bless my mother, she willingly took on that job for me when I asked and completed this amazing quilt that completely wraps me in love.  


Even though we didn’t put weights in it, there is filling and the fabrics are heavy, so it does feel as heavy as a weighted blanket.  It hugs me, I can fidget with buttons, fleece, ribbons, lace, flannel, denim.  And it smells slightly like my parent’s wood burning stove.  I can see my mom in her chair with a pillow under her left arm, a cup of coffee on the table next to her as she pins together these pieces, some of them pieces of clothes she had given my kids as gifts.

So when my brain craves the ocean I know I need to pull out my tools.  I need to turn on the meditation music, wrap a quilt around me and just breathe.  My brain tells me way too often that I need to do everything right.  When I know logically I never can.  And it’s really okay not to be perfect.  Not perfect is beautiful.  The sea knows this and reminds me.

 

Balancing Life

21 Mar

 When my youngest is at gymnastics I sit on a cold metal folding chair and I watch her on the balance beam.  I can see the determination in her face and see her arms out as she wobbles a bit, then catches herself a step in and refocuses.  Now and then she slips.  But most of the time, she catches herself off-balance and continues on.  Her teacher follows a step behind when she is on the high beam, allowing her to find her own strength and balance, but there in case she were to freeze or fall.  

I balance all the time.  I wobble more than she does when I walk.  I haven’t worn heels since I fell in them and cracked my elbow.  I’m still not sure why it’s called the funny bone.  I balance in my running shoes now.  Between keeping my house clean and spending my much-needed free time exercising and writing.  Staying in to watch another episode of Caillou with a five year old on my lap or going to a Yelp Event with a friend.  Going out on a date with my husband, or catching up on the sleep I miss throughout the week.  Between researching more services we need and just going to Culver’s and eating ice cream.

Some days I balance better than others.  Some days I can smile, I can laugh, I can make those phone calls and doctor appointments easily.  Some days all I can picture is a potential hospital visit for a child and my “fight or flight” response kicks in.  I freeze.  I stare at the neon Post It list of “stuff” I need to accomplish and push my chair away from my desk.  I find my blue running shoes and go pound the path with the steady rythym of my steps. Or I put in headphones and go hunting for my favorite feel-good songs and crumple into the feels of those songs.  Or I open the pages of a book and immerse myself in someone else’s life for awhile.  I feel the clinking of my bracelets reminding me of everything.


But then I refocus and I make those phone calls, I schedule visits with specialists, I ask for help and spend six hours in my van to steal a night away with my husband where I can dress up and feel like the fifteen year old girl he asked out years ago.  I can wear a fiery red dress and heels and feel my legs ache from the hill I walked a few hours before.  I can fill my tub with hot water and turn on the jets, closing my eyes for a few minutes just listening to the pounding of the water.  

I might not be graceful always on my walk.  I might sometimes close my own eyes and repeat the Serenity Prayer or look at my bracelets for inspiration.  I might text someone close to me for just a single boost.  But I continue.  And I make it.  I wobble, I catch myself.  I feel my family and friends a step behind, ready to hold their arms up if I need them.  

But just like she does I continue.  Because that’s what I do.  I breathe.  And repeat.

Love Yourself First

14 Feb

Today is Valentine’s Day.  An expensive Hallmark holiday that requires significant others buying trivial gifts of flowers or jewelry, kids exchanging sugar and cartoon character greetings, and then you have the people who are single who are doing their best to just get through the day.

Why do we make ourselves crazy crafting the perfect gift, posting flowers (I’m so guilty of this by the way too, but flowers from my husband are few and far between.  We laughed that the last time he gave me Gerber daisies was when we found out I was pregnant with the youngest.  Thankfully, this was NOT a celebratory gift).

The most important person to love.

Is YOU.

We spend our lives trying to please others, comparing ourselves on social media and looking at our own lives thinking it’s not enough, we should do more.

Now that I agree with. Do more.  Do more self-love and self-care.  I challenge each and every single one of you to do one thing a day for you.  Not for your family, not for your coworkers or your boss, or your parents, for your partner, just for you.

It’s called self-care.  And self-care is a vital tool for creating inner peace and happiness.  For years I chased happiness too, thinking that others would make me happy, that I needed to compete with the PTO moms out there that seem to have every single thing perfect in their lives.  I sometimes feel like the only mom who forgets their kid’s shoes for school or runs out of pull-ups because I haven’t made it to the store.  Or who makes toast for breakfast because I just don’t have the energy to do something better before coffee.

But I’m learning this self-love thing. Yesterday I bought new shoes for myself to wear as the average of twenty flights of stairs a day had my feet sore and swollen by the end of the day.  So I bought new ones to support my feet better.  And slip-on, because who wants to re-lace shoes during the day?  I felt incredibly guilty spending more on my shoes than I spent on shoes and clothes for my daughters.  But my health and well-being is also important.

I went for a walk even though I didn’t want to, because exercise makes me feel good.

I added a few chocolate chips to my steel cut oats with flaxseed that I’m trying to learn to love.  Because I don’t love the oatmeal yet, but I do love chocolate.  Instead of a bag, a few works too.


Self-care for me is taking time to read my book for Book Club.  Writing this blog as well as my “work” pieces.  And remembering to write purely for fun.

So today, on this holiday of love, remember who you should love the most.  Yourself.  Give yourself a gift.  Take time for you.

Things that Make me Go “Hmmm”

13 Feb

Living with others, whether it’s a roommate, your parents, your children or spouse there are always odd little quirks about the other person or people you don’t understand.  I’m sure I have a few, considering I blew through a few roommates in the college dorms I probably had more than a few.

But in this house with my kids, husband and pets there are plenty of things I question on a daily basis.

1.  When she claims most socks hurt, but she’s worn a hole through the favorite pair and somehow the hole doesn’t hurt…

2.  How Elsa’s castle was somehow taken over by a bear and the cast of Inside Out… I call it the Bear in the High Castle.

3.  Why doesn’t dirty laundry make it in front of the washer when the washer is literally on the other side of the door that is usually open…


4.  Speaking of laundry, how are there levels of dirtiness?  And if it’s on the floor doesn’t that increase the level?


5. Why do we need to use Mom’s chapstick or lip gloss when this is your collection…


6.  When do you officially have enough beads to wear?


7.  Why is it so challenging to change the toilet paper roll?  (Guess which bathroom I don’t use)…


8.  Because I’m not innocent in this oddness thing, why do we need three pairs of shoes that are essentially the same?


(That one I can defend by saying the black pair is a quick and neutral running errands shoe, the turquoise are great for the first 30 minutes and then they get too tight, and the pair on my feet are my indoor supportive slippers. And they’re Sketchers.  They are comfortable.)

We wouldn’t be who we are without our quirks. And differences are what make us beautiful.  So I might scratch my head and wonder why when I see any of these things, but it works somehow.

The Secret to Happiness 

25 Jan

is simple.


Actually in winter that is the secret.  Yesterday our sidewalks were clear and so were the roads.  My dog and I set out on an adventure through town to refill the Little Free Library.  I rummaged through our home library, sifted out some books (trust me, we aren’t lacking in this house) and filled my bag.  If you’re lucky you get the free bookmark and note of kindness I stuffed in one.  

Then we came home and I wrote in the recliner.  And he napped on the couch.  With the fireplace on.  Because, well, because we have one.  And it makes us this cozy.  


I needed to do errands, but I chose the fireplace and my laptop. And my peace and quiet lasted longer.  It meant sacrificing a solo Target run.  

Was the Target run with the Caroline’s Cart full of a 65 pound 9 year old and her bear diving after chips, soda and Inside Out underwear worth it?  (I skipped the soda, but the others made it in the cart).  It was worth it.  Even when the five year old kicked me because she was angry she didn’t get to ride in the cart (again, sorry, but there’s maybe 3 double kid semi carts-they are always in use).  Still worth it when we did the self checkout because there was one poor cashier during shift change with 6 carts waiting ahead of us.  Still worth it when the youngest told me it was “so embarrassing” to wait for Mommy to scan our cart full of juice, Pull Ups, and the other necessities that somehow got placed in the cart.  

Definitely worth it.  

Today was a snow day, so I’m even more thankful I took that time to do only what I wanted in quiet.  As many inches of snow had my youngest asking at 7 am in her Anna voice “Do you wanna build a snowman?”  (No, coffee).

“Do you wanna build a snowman?” (No, I’m washing your sister’s bedding).

“Do you wanna build a snowman?” (No, I’m still trying to find that pair of pants you borrowed at school the other day.)

“Do you wanna build a snowman?” (Sighs.  Maybe it will be fun.) 

“Yes, let’s go build a snowman.”

So even though I hate winter.   Hate snow.  And hate cold, we went outside.  I bundled up in my warmest pants, hat and running gloves (thinking clearly I am not a winter outdoors woman), and fake Uggs because I have no idea where my real winter boots are in the house even though we’ve lived here for 3 months.

We built a snowman.  And laughed.  And searched the ground for rocks.  Discovered we only have baby carrots.  We hugged and took silly selfies.  

I didn’t want to.  But happiness is unexpected sometimes.  It’s found when you give to others.  In a book.  In the memory of building a snowman.  In the much needed and messy hot chocolate afterwards.  

But now that my toes, hands and especially my butt is cold I’m going to sit in front of the fireplace.  And look, the dog added to my happiness too;) 


I got extra kisses by the fireplace.  Happiness really is a warm butt.  And books.  And snowmen.  Especially snowmen.