another one of those days….

I have been writing this blog for one month now.  When I started posting last month,  I had no idea my journey with Tiara was heading for this direction.  I sensed her agitation was increasing, I saw more daily seizures, I felt the increased pinching and hair  pulling but I was hopeful that our lives would not be returning to that dark place.  I planned on writing equally about Tiara and other topics but I now feel compelled to keep writing mostly about Tiara until this phase ends.

 

Today Tiara woke up at 2:45 am again.  The third day in a row.  I heard her asking for the Ipod  and pretended not to hear, hoping Lou would get up and get it.  He knew how tired I was from the prior 2 nights, so he got up and started the iPod routine.    Tiara doesn’t know how to change the songs herself and is super picky about her music so you have to constantly change the songs or she yells.   “MORE, MORE”  this means repeat the current song. ” NO, NO”, this means keep changing the song.  So you finally find a song she likes and start to drift off to sleep and then she starts yelling at you “MORE, MORE.”   At 3:45 am she kept yelling, “NO, NO, NO” I could hear Lou clicking the device but he couldn’t make her happy.  I finally sat up and said “What is wrong?  I don’t think it is working !”   She then saw me and tried to get out of bed, so I laid down next to her to take over control of the Ipod.  Apparently the sound was down so she couldn’t hear it.  Just as I laid down, Lou jumped up and got in the other bed.  “oh, no don’t leave me with her, I am tired, Louie.”  ” I am so sorry honey, but I have to sleep, I am dying here and I have to work in the morning.”

(side note  :  We have two beds in our room.  A king size and a twin.  Tiara will only sleep in the big bed so we trade off sleeping with her. She has seizures during the night and requires someone to turn her on her side during the seizures so she doesn’t aspirate.)

Ugh, Fine….  Tiara then started asking for water, so I went into the kitchen and I threatened her to stay in the bed, but guess what, she didn’t listen.  Next thing I know I am making her a soy cheese quesadilla with avocado at 4 am.  She gets “real bad hungry” as she describes it.

After breakfast I decided why not tackle the 10 loads of laundry I need to fold.  Tiara watched her movie and I folded.  By 6am I was really tired and knew we were off to UCLA  for a 2:30 doctors appointment so I was starting to panic.  After her meds at 8:30 she fell back asleep in the big bed and I jumped in with her.  We both slept until 10:30 and then I had to get my butt in gear.  We had to leave Newport by 12:45 with her clean, dressed, fed, and all her “stuff” packed.  We actually had to carry a huge photo album around the medical center because she loves to look at pictures.  The ride was fine, she tried to choke me several times and pulled my hair constantly but I just kept saying “gentle hands, don’t hurt mommy!”

We arrived early.  If you have never been to “clinic” at UCLA let me tell you something, you should be grateful.  There are 2 types of people in the clinic.  The sick kids who have serious ongoing medical issues or the poor kids, or kids who are sick and poor.  Either way, it sucks.  The moms of the handicap kids are more comfortable with the crazy dirty waiting room because they have been coming to places like this for longer than they want to remember.  They aren’t bothered by the screaming, the drooling or the outbursts.  They don’t even seem to notice.  We have a camaraderie between us, because we know we exist in a different universe than most people.

Tiara and I wait for 1 hour until her vital signs are taken and then we are shown to an exam room.  As we wait in the exam room for another half hour, she starts to get really agitated.  She starts doing the death hug and pulling my hair.  I try reading her books, doing the coloring, looking at the photo album, listening to the iPod, but she has been doing this for over 1 1/2 hour and she is so done.  She tries to run out of the room and then lays down in the hallway and starts trying to kick me.  Of course no one is phased since this is probably pretty common at the “clinic”.  I wait it out and when she stands up I try to direct her to the room.  Big mistake.  She grabs my hair with both hands and pulls my head down.  I try not to panic, but I have been in this situation before and it doens’t usually end well.  If I were at home, I would take her to the ground and try to hold her still but I am in a small dirty exam room and that isn’t an option.  I try to pry myself free but she just starts kicking me while holding my head down.  I had no option, I had to scream for help.  Finally after the second scream the doctor and a mother came running in and pulled her off me.  The mother was so kind and as she comforted both Tiara and I she pushed a cross into the palm of my hand.  She kept telling Tiara ” you are  beautiful, you are a beautiful child, your  mommy loves you.”  She then looked at me and said ” I know, I have a child with special needs.”  They both left and the doctor promised to return quickly.  Unfortunately, it wasn’t quick enough and the same thing happened again.  This time the mother refused to leave my side until a nurse came to be my bodyguard.  Once again the mother pushed the cross into my palm tightly but this time she said “KEEP IT.”  When the nurse arrived to watch over us the mother left.  I had seen this mother in the waiting room, hours before.  Her child was in a wheel chair, with a trachea, and looked like he wasn’t able to speak or move much.  She understands what it means to suffer, just as all true mothers do.

Whether your child is disabled, over weight, unattractive, or the most beautiful, smartest, athletic child in the world they will all endure pain, loss and sadness and as mothers we will always feel that pain with them.