Returning Home: A Child’s Memory Loss

Roaring Mouse

Returning Home: A Child’s Memory Loss

Roaring Mouse
Yes, life has been busy for me lately. My daughter now has five doctors and we are awaiting a sixth for their provider approval. I'm very fortunate. They have agreed to work as team even with one as a chiropractor/nutritionist.

Having been through the rare disorder rodeo before I quickly navigated the system, found support resources and am already working with medications to help my child -- all in 2.5 months. In that time she's already had kidney strep four times, outbursts to the point of them almost being daily and sudden sleep moments that kinda make you jump from one foot to the other. In addition she's had an EEG, a double MRI and an allergy test. The test has to be redone though as she tested false negative on it. Beyond that her old school won't be able to accommodate her in her condition so I'm working toward homeschooling her, and I'm re-arranging her diet to help encourage her healing. I am (yes again) creating a Bio/Medical resume for her (if anyone wants it I'm happy to share!), as well as creating a diary of her health and soon I'll be filling in one of the books that I originally wrote (on Amazon) for others for her.

But you know what?? Busy is the easy part!!

The hard part, the really hard part is remaining calm, keeping my smile, and having a sense of humor when she has a behavioral outburst with the occasional memory loss for good measure. Case in point: The other day she had a Penchám (nickname for outbursts). What set it off, I don't know. But I know it was starting on the way home and reared itself when we were about to go into the grocery store. "No!" she said when I told her that we couldn't get an item she wanted. "You will get it or I'm going to run-away!" In my mind, I'm already thinking, "Oh oh!  I have to get her back in the car now!" I quickly dodged her continued same word repetitive orders and downgrading insults of me and gently help her back into the car. "If you don't let me out I will open the car door while you are driving!" To myself, "Thank goodness this was designed to not allow that when I'm driving!" I wait for a break in her conversation, quickly start the car and drive before she can unlock the door for the fifth time.

I make it home, the entire time praying and wondering how long this will last and the intensity.
Now I must interject here:  My child is normally a calm, bright personality, sense of humor child.  What I am describing currently comes without warning, escalates in seconds with her screaming and/or suddenly falling into deep sleep and me just standing there...praying I can remove the "mom" part of me mentally to remain calm and address her needs.

We pull into the driveway.  She begins to run-away.  I catch her and put her hands behind her back and navigate her into the house.  Once in she starts repeating the same insults, additional orders of what I will do...and then as I restrain her again to prevent her hurting me.."Why won't you take me home to my mom and dad?"  "You are mean!  You kidnapped me!  Where's my mom and dad?" "Where's my mom and dad?"  Pause.  Honey...I'm your mom and your daddy passed away. "You are wrong.  You are lying.  Now take me home! You will take me home - now!"

About a 30 minutes later...she lays down for about two minutes and wakes up.  She looks at me and says sadly starting to cry, "I did it again - didn't I?"  Trying to collect myself, "Come here",  as I give her a hug and remind her once again, we will beat PANDAS.

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My husband was the one who gave me the nickname RoaringMouse for my size yet dogged persistence in getting his needs met and advocating for him. Recently I had two very good friends make observances on that.  One said that I've "earned the title yet again" - as he watches me handle this rodeo by myself now. Thank goodness for him as he has become my ear and shoulder and strongest cheerleader for me that I've ever seen. The other said it should be changed to Strong Lion.     Those are sweet but the title I think I want is not a title...but to be known as, "the mom who brought her little girl back home!"

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EllysGdaughter

Oh, RMouse!! I had no idea...I've been so busy that I haven't checked in for such a long while. My heart hurts for you but is so proud of the way that you know just what to do! This is such a good example that sometimes we as bystanders don't know what is really going on when we see outbursts between parent/child... so glad you were able to not have that happen in the store, it would be so confusing. My prayers are for healing and peace with wisdom as you go through each day!!