Compulsive hoarding is a mental disorder that is just beginning to be understood. As a hoarder, I have acquired things over the years with a specific purpose in mind at the time of the acquisition, used some of those items for their intended purposes, forgotten the goal for different objects, but now that I find that they have outlived their purpose in my life I am struggling to rid myself of those same things.

You can read the start of my journey here.

Friday, January 6, 2012

If you think a black eye is good, how about head to toe bruises?

Things were tough for Scooter her first few years of life. She was considered medically fragile and ended up hospitalized with pneumonia or asthma, if we even dared to take her out in public. She was so ill so often that I would have constant nightmares of bringing her home from the hospital in a body bag. It was horrific. If it were not for her strong desire to live, I don't think she'd have survived her many close calls with death. 


She was willing to fight to stay, and fight she did.


Scooter's indomitable spirit was crucial to her survival and development. If she hadn't had the fight in her that she did, she'd have never learned to sit. Granted, it didn't happen until she was 4, but it happened! And walking? The doctors felt it was out of the question, but they didn't know her like we did. We knew in our hearts that she was going to walk someday. She took her first ever steps 2 weeks before her 6th birthday, and she never looked back. We gave away her wheelchair when she was 7. 


Her strength and determination helped her beat the odds time and time again. 


Scooter's frustration over not being able to sit up, not being able to eat solids until she was 5, and the constant illness, combined with her lack of ability to communicate was very apparent. She often lashed out. She would reach over when she was angry and pull someone's hair as hard as she could, relieving the victim of a small handful of hair each and time.


She hits herself in the head when she's angry. When she is upset and smacks herself, you can hear a gut-wrenching thud from the other room. It's a horrible sound. For years, she's had not only a bruised lump on the back of her right wrist but on her forehead above her right eye, as well. When she was little she had bangs to help cover the ugly bump. Mostly, it was so other kids wouldn't gawk at her, but the issue of someone reporting us to CPS for something she did to herself definitely played a role in her having bangs. 


But these aren't the only examples of Scooter's temper problems and our concern that we'd be reported to Child Protective Services. 


Because Scooter couldn't sit up until she was 4, she was in the crib until we felt it was safe for her to be in her own bed, but it frustrated her to be so immobile. When she wasn't in the crib, she got around pretty darned well. She did what we called "the backstroke" across the floor to get anywhere she wanted in the house. Lying on her back, she would raise her elbows above her shoulders, firmly plant them on the floor and pull her body with her head cocked, looking over her head at her destination. As a result, she had no hair on the back of her head at all except the occasional stubble where some of her hair was trying to grow back.


Her crib was the only place we felt she was safe, if we couldn't be right there watching her. So if it was time for Hopper's bath, or if we had to use the restroom, Scooter was in the crib. We felt we had no choice. Her safety was of utmost importance.


For several months, maybe a year, she hated being in the crib, if anyone else was awake. She would let us know of her displeasure by retaliating. At times she would take her diaper off and smear it around, (thus, another reason for the 20 bottles of rubbing alcohol), but other times she resorted to hurting herself. She would put her arms and legs through the spindles of the crib and beat them until they were bruised. 


If she was angry that we put her in the crib, so we could shower, the length of her legs and arms were absolutely black and blue by the time we toweled off. It was terrifying. If we left the house, we had to keep her in long sleeved shirts and long pants even when it was 100° outside. Anybody seeing a child in a wheelchair, who couldn't even sit up, with the bruises that Scooter sported would have assumed she was the victim of child abuse.


We told the doctors what she did, and they believed us. But still. Would that be enough? We went as far as videotaping some of her tantrums for our own protection. We were terrified of somebody seeing her bruises and reporting us to CPS. I have no doubt that an investigation would have been launched, and if it hadn't been, I would have really questioned the integrity of the local CPS unit.


Scooter was hospitalized a few months before her 4th birthday due to another bout of asthma and pneumonia. While she was hospitalized, the doctors ordered a PH probe study to test how often she was experiencing acid reflux. The results were not good. It didn't matter what position she was in, whether she had just eaten, or whether she was sleeping or awake. She was experiencing heartburn over 80% of the time. 


She needed surgery to correct it. The doctors didn't want her going home without having the surgery. So once the pneumonia was cleared up and the asthma was under control, they booked the OR. She had a fundoplication. It's a surgery to wrap her stomach around her esophagus and give her a sphincter of sorts to replace the esophageal sphincter she was born without.


Normally, I stayed overnight with the kids when they're in the hospital, or we take turns, but this time I was sick. We didn't want Scooter to catch whatever ailed me, so Hubster spent his nights at the hospital this time . By the 6th night or so he was exhausted from the nurses constantly coming in through the night to give her meds or breathing treatments and then putting in a full day at work. He needed to get some sleep, so he stayed home that last night. She was to have surgery in the morning. 


I was still getting over my illness and didn't want to compromise her recovery, so for the first time ever, Scooter was alone at the hospital overnight. It was the only time she ever has been, or ever will be, alone overnight while hospitalized. She desperately needs one of us to be there with her. The hospital is a big scary place for a kid to be alone.


When we got to the hospital a few hours before the surgery, the next morning, three nurses came running down the hall to meet us. We didn't know what was going on, and we were a bit startled. What was wrong? How serious was it?


MrsHubster! MrHubster! Wedon'tknowwhathappened! We'resosorry! Wedidn'ttouchher! Wedidn'tdoit! Wecameintotheroomandshelookedlikethis! She'scoveredinbruisesfromheadtotoe!!


We walked into her room to see that Scooter was indeed covered in bruises. These were the same type of bruises that we covered up during the summer for fear that CPS would take our daughters away from us. And the bruises were deeper and uglier than any that she'd had to date.


The hospital had two types of metal cribs they used. Some cribs had round rods. Others had rectangular spindles. The rectangular spindles were about 1" by .5", and although they were not sharp enough to cut anyone, they were definitely sharper than the rods. Scooter's crib happened to have the rectangular spindles this time. 


She glared at us when we came in. She was mad. She'd gotten so upset that neither of us stayed the night that she put her arms and legs through the spindles and flailed. It had to have hurt. The bruises were so deep, and they were such a dark black. They lasted for what seemed like forever but in reality was just a few weeks.


It absolutely broke our hearts. We felt horribly guilty that it happened, because we weren't there with her. It was our fault. On the other hand, we were also completely relieved. The nurses were relieved, too. They knew we had no intention of suing them. 


It hadn't even crossed our minds.


For the first time in months, we felt like we could breathe. 


We knew that this incident would be recorded at the hospital. It would be recorded in the file at her pediatricians'. And it would be kept in those records until she was at least 18 years old. This incident would keep CPS at bay, should we ever be reported. We finally had proof we didn't cause the bruises on her arms and legs. The relief we felt was immeasurable.


Between Hopper's black eyes and Scooter's black and blue marks, we had a constant cloud of fear under which we lived for years. The anxiety from that came rushing back to us when we first learned we needed to get guardianship of the girls a few years ago. It just kicked into high gear the last few months as we began this journey. 


After the chat with the court visitor the other day, the relief was once again palpable. 


We have nothing to fear. 


And in a few weeks when we go to court, it will be official. 


And we will be able to breathe deeply once again.

3 comments:

  1. how uppsetting and frightening! Poor darling! and poor you ! I hope she has a different way to comunicate her frustration now

    ReplyDelete
  2. Someday... in your spare time, you need to write your whole story. From beginning to present.
    Fascinating.

    I can't imagine having to go through all the things you've had to deal with, and certainly am not making light of it by calling it fascinating, but it really is an amazing story.

    And it might help some people going through similar things.

    And I know in my case it has contributed to my understanding and compassion for children with special needs and the special people who care for them.

    Thank you for sharing so freely.

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  3. I sit here reflecting on what I have just read.
    Thanks for inviting us into your world; a world unlike most of our own.
    I worked with Special Needs kids, first as a teachers aide and then as Activity Director. Fourty boys on one floor, fourty girls on another and some of them are still with me in memory.:0)
    Some children were so involved that they couldn't swat a fly. Frankie ( God love him ) was around twelve and I would pick his long, lanky body up and dance ( his legs dangling )around the floor with him. Spins and dips and and me singing.THAT SMILE and LAUGH , THAT EAR TO EAR SMILE on his face as we danced.
    THAT SAD FACE and tears when I would bring him back to the residence haunts me still. He could not speak a word, but his face spoke volumes.
    My dogs kissing him all over, the haircuts and tub bath followed by a fake powder puff dusting down,
    All the while laughing,laughing,laughing. :0)
    Eight hours later I could walk away, but they will remain in my heart forever.
    God love all our children.
    Just writing this gave me both pleasure and pain.
    THX for the memories Frankie.
    (((hugs)))Pat

    ReplyDelete

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