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.

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4 Responses to “Some Days are Feels”

  1. Heather Roberts April 25, 2017 at 10:30 pm #

    Yep a well placed smile or better yet laugh does wonders.

  2. ainsobriety April 26, 2017 at 1:25 pm #

    My almost 12 year old daughter recently had a hearing test. The experience was similar. After a while I could see she just got tired of the questions.
    She looks older (like a 16 year old boy, which is her goal…seriously) and I could tell the audiologist was getting annoyed…and then she sighed and said -I forgot she’s only 11. Let’s take a break.

    Kids are kids.

    As an aside, Cleo is a medical puzzle. As a baby she had everything…swallowing disorders, physical developmental delays…we saw so many specialists and were in the hospital with aspiration pneumonia over and over. I always felt like I was talking about her and defending myself…then she turned 3 and became completely average.

    Recently small and strange problems have cropped up and we are on specialist number 3. Repeating her history from years ago is extremely tiring and hard. It’s hard to be the mom. Big hug.

    Anne

    • mylifewiththree April 26, 2017 at 1:32 pm #

      Oh, hugs, Anne. (On a side note if she wants to look like a 16 year old boy-let her:) Hope the specialists work for you soon, love and you get some rest from that.

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