Is it bedtime yet?

I have been waiting for bedtime since 2:00 this afternoon and I still have 7 hours to go.  UGH!  I am writing this on Saturday afternoon and am so over my weekend I wish it was Monday.  I know I have said it before but weekends are treacherous for me.  No schedule, no routine, a house full of bored kids and no where Tiara will go except Target which is super crowded on the weekends.

The weekend started on Friday afternoon when I picked up Trin from school.  She was having a friend come home with her for a play date and luckily at the last minute her friend decided to go home and change first before coming to our house.  I say luckily because as soon as Trin got in the car and we started to drive out of the school lot, Tiara grabbed for my arm and sunk in her fingernails.  Next she grabbed my head and started kicking the dashboard.  I immediately pulled over but I think people noticed something was wrong because she had kicked on both the front and back wind shield wipers, the hazard lights were activated and she was kicking the dash so hard, I was expecting the air bags to deploy any minute.  I imagine my car pulled to the side with every device activated and my head in the passenger side seat may have looked a little odd.

Trinity was able to get Lou on the phone and he started to sing her favorite Rod Stewart song which stopped her abuse for a few minutes and enabled me to drive home without her attacking.  Once we pulled in the drive way he hung up and got back to his customer.  I was really worried about having a friend over at this point.  Should I cancel or would it be ok? 

I decided to stick with the plan but knew I wouldn’t leave Tiara’s side for a second while the little girl was in our home.  Once the friend arrived they went straight to Trinity’s room to play so everything was fine until pick up.  While I was talking to the Mom at the door, waiting for her daughter to pack up her things, Tiara started pulling on my neck.  I was trying to hold her off nicely but when I started to lose, I had to excuse myself as she pulled me to the ground.  The Mom has a disabled sister so she has some understanding of our situation so she wasn’t totally horrified, thank goodness.  Hopefully the child didn’t think much of the fact that I waved good-bye and thanked her for coming while straddling Tiara and holding her down.

By this time, it was almost dinner and Tiara was still acting up.  She started attacking me and following me around the house so much I felt like a caged animal.  I had no where to go and I knew Lou wouldn’t be home for hours.  At one point Tabitha couldn’t take her hurting me anymore and she intervened.  She worked on disciplining Tiara for at least 20 minutes until Tiara submitted and Tabitha felt safe leaving me, so she could go out with her friends.  At some point during the night I received a text from our real estate agent asking if he could do a showing on Saturday at 10am?  Ohhh, I said yes even though I knew it would make my Saturday even worse.  I have to keep trying to sell the house even though it is super overwhelming get it ready to show. 

I finally fell dead asleep by 9:30 before Lou even got home from work.

By 5am on Saturday morning I was awake and in bed worrying about finishing my Dad’s books.  When I worked for my Dad in his law office 20 years ago, I started entering his business account into Quicken.  As a result he decided only I could do this job and I have been doing it ever since.  My Dad is very sweet and generous with me, so I do this job even though I dread it every year.  I usually put it off for months at a time and then do a few months at once.  Well, I hadn’t started 2013 yet and I promised myself I would get it done this weekend before it was Halloween, Thanksgiving and you get the point.  Since I couldn’t sleep I decided to get up and start working.  I was done by 8am and that is when I received confirmation that yes we were having a showing in 2 hours.

Oh I have to get this house cleaned and now!  Of course Lou was leaving for work and my mother in law was out of town, so I begged Tiara’s caretaker to come an hour early so I could clean the house.  Tiara was still in a horrible mood and started the morning by kicking the oven, the fridge and my jaw as I changed her diaper.  Let’s just say Saturday was the same as Friday, a nightmarish type of day.  My hands are aching from holding her off of me, my arms are bruised and sore and right now I am hiding in the living room  listening to her talk to herself in the family room.  I am hoping that if I stay out of sight she will leave me alone for a bit but here she comes.  Be back later…..

So when Lou finally got home on Saturday night he tried to take over Tiara for me and within minutes he was screaming, she was in time out, and the whole house was stressed.  He just looked at me and said “I can’t take it and I just walked in.  How did you make it through whole day with her? “

me:  “I don’t know, I just did it.”

We skipped the bath, and the breathing treatment because neither of us could get her to do either without enduring abuse.  Sometimes it just isn’t worth it.

And so after she went to bed we talked about why she continues to be this way and is there something else we could be doing?  I don’t think there is any other options.  I have spoken with her neurologist, her neuro-psychiatrist and her caseworker with the past few weeks.  Lou was really pondering ” what is the lesson we are missing?  There must be a lesson in this and we just aren’t getting it.”

I am of a different thought.  I don’t believe there is a lesson in everything.  God does not plan for children to die of cancer, be abused, neglected or have brain disorders that cause them to have seizures and be violent.  He isn’t teaching a lesson in letting those children suffer and I don’t believe he is trying to teach our family a lesson in allowing Tiara to physically hurt us.  Sometimes things just happen in life through a series of events of which we have no control over because he has granted man the gift of free will.

I imagine it like this.  If Tiara would have been born 100 years ago before all of these anti-epileptic medicines were invented she would have died early in life.  Through the power of God and science man has developed medicines that saved her life BUT she still endures pain and suffering.  Through that same process man probably caused this illness to exist because of changes made to the environment.  Dirty air, dirty water, chemicals in the soil, who knows but I am sure they will learn some day what is at the root of this condition.   So until man figures out how to cure Tuberous Sclerosis, seizures, autism and mental retardation God will be by our side, but I don’t believe he can undo what we as humans have created except when he chooses to perform a miracle.  And in his power, he has bestowed several miracle on Tiara in her lifetime, for which are am eternally grateful.

 

Tomorrow I am hosting the health activist twitter chat on @wegohealth and I will be talking about behaviors in Tuberous Sclerosis.  Clearly I am not an expert but I have some serious experience on the topic, so if you are interested in joining the chat it will be from 3-4 pm Eastern Time @wegohealth on Twitter.  (noon our time)

 

xoxo tiffani

My sponsor and greatest supporter