Archive | April, 2017

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.


When She Thinks I’m Not Watching

17 Apr

A fenced-in backyard is my version of heaven when it comes to our outside time.  We used to have a long, thin backyard that faced my neighbor’s driveway.  Without a fence.  Or any feeling of privacy.  And safety?  Forget about it as I had to watch my girl like a hawk.  She loves to explore and swing and thought nothing of walking through the yards to get to someone else’s swingset.  Our front yard had a sidewalk, but it was directly connected to a busy street.  That she had started walking down a few times when I was out walking solo.  She can sneak out a door as silent as an ant.  As much as I love the outdoors I hated outside time.  I couldn’t relax in my own yard.  

At nine most parents can let their child play solo in a yard and not be worried.  When you have a child with a cognitive disability you cannot.  While I think she understands much more than she leads on, she’s also incredibly stubborn and headstrong.  (I have no idea where she could have inherited those traits, by the way.  It certainly could NOT be from me.)

So when it came to the house replacement a fence and a quiet yard was priority.  If we didn’t have it already we made a pact to budget for one put in immediately.  Luckily the house we fell in love with had a huge yard with a privacy fence.

It is amazing.  Either one of my daughters can go outside and swing or build sand castles any time they want.  They now realize they can go even if I don’t want to. I can sit in my indoor screened porch and read.  Without needing to keep an eye on their every move.  We wrapped bungee cords around the gates so it is still easy enough to open the gate, but will slow her down if she tried to wander off. 

So she puts on her outdoor shoes and goes outside to swing daily.  If her sister is with they sometimes play together.  Often they swing in tandem, each facing opposite directions on the swings they decided were there own.  Unless there’s a moment like this where my sassy one chooses both.

Or I’ll see my youngest sitting smack dab in the middle of the sandbox.  And when her sister protests it’s by throwing a shovelful of sand at her head.  Bear in mind, while Mom ducked in the house to use the restroom I walked out and caught her sister dumping a pail of the same sand over her head.  Fair is square.  In reality I am reminding them this is not behavior that is okay.  Internally I have the giggles, because I love that they retaliate secretly and evenly.

However, the sassy one has discovered Mom and Dad periodically go inside when they are outside.  What she doesn’t realize is that we are STILL watching.  Within thirty seconds of being left alone outside my spunky girl will be over in the area where our previous house owners had an above ground pool surrounded by landscaping rocks.  Apparently, she believes these rocks need to be in front of our shed as she plops herself on the ground and starts throwing them one by one towards the shed.  If she’s the first one out the door she aims for the rocks, but quickly does a ninety degree turn to the swingset  when she hears the screen door open and knows she’s no longer alone.  She knows she isn’t supposed to.  But the instant she thinks we don’t see her… to the rocks she goes!