End of week 1

Wow what a week.

My science professor sent me flying into a panic attack. I'm so unsure of how I'm going to handle that class. My weekend will be filled with trying to get the assignments done for that class.

My humanities class ... let's just not go there.

My algebra class, that I need so badly. I've got the nicest most gentle teacher in the world ... and I needed so badly to be there. But I went to my science class on Thursday morning and was coughing so badly & disrupting the class to the point the professor deemed it necessary to make some political statement about non smokers rights to not be disrupted by second hand smoke as well as smokers hack. (um .. I don't smoke, it's not smokers hack ...I'm SICK!!!)

OK, so I went back home to rest between the two classes, collapsed into bed, called the doc to say,"It's been a week, I took all 5 antibiotics and now I'm getting worse ... they said come in at 4:30). I could have gone to class ...except, I fell asleep and my husband told my son to let me sleep.
Got to the doctors and ... I had 102 fever. WHOOPS!

So ... more levaquin ..at 750 Mg's this time. A nasal spray with her thinking maybe it's coming from sinus'? Vera mist ... I've got bad sinus reactions to nasal sprays ...they make my nose bleed. 1 day on the 750 and already noticed a difference. So ... hopefully this time it's going to get it.

My Developmental Psych class is great. I love the teacher. She has a passion for people, a passion for the subject of psychology and a passion for teaching. That combination makes for a great class. We have a wide variety of ages from teenagers to older than myself ... and everywhere in between. Men and women ... boys and girls .. no large groups of anything no large groups of races or class ... very wide subset of the community at large of our city. It will make for a GREAT psychology class!
We have a woman, my age, from India in there, a young woman from Mexico and a man about 30 from Australia(raised in those countries, living here now) we have several races raised here in the US) every hair color and eye color imaginable. Very few native Oklahomans ... and the only thing we all had in common was there were only 3 majors that were represented ... psychology, nursing and education!

Wednesday I have a paper due that is going to be quite interesting to write. It's about where I was 10 years ago and how I've changed in three areas. Emotionally, physically, and Socially.
Well ... OK ... That's going to be quite the paper because it is exactly those changes and where I was 10 years ago, with my parenting ...that has caused me to decide to go back to school. The services, or lack there of ... available to me. The fatigue and desperation of dealing with the issues facing my children and the lack of respite care.
The feeling of being alone in the world as a family of kids with Tourette's and OCD and at the time what we thought was autism ...and it being treated as my child's disability that somehow had nothing to do with us ..when in fact ... if a child has a disability ..the entire family is affect.

When a family member is disabled ... the entire family is affected. For doctor's, therapists and other health care members to think otherwise ...they are fooling themselves. My children and husband are deeply effected by my having myasthenia gravis and lupus. I am deeply effected by my husbands post polio, Restrictive airway disease and scoliosis/kyphosis and the complications ... My husband and I are effected in many ways by the OCD and tourette's that our children deal with on a daily basis ...and trust me ... the brothers have to deal with ... in ways that cannot be described ..their siblings OCD and Tourette's and often it collides like a tornado with their own OCD issue and it takes a very wise, and gentle hand to help them to overcome the differences in their disorders that come head to head with each other.

A person with a chronic illness, is not simply an island to themselves, they are a member of a family and it ripples out and effects the other members and changes the fabric of the life of the other person helping to form the very character of who that person turns into ...for good or for bad.

My children could not have helped but be effected by my 27 hospitalizations and 15 surgeries, by my husbands 7 hospitalizations. They could not help but be effected by their own hospitalizations ... Samuel's 5 and Benjamin's 7 ... Benjamin's most serious being meningitis at the age of 7. With the most serious of all of these being Don's 45 day stay last year when he almost died. We are, a family, not a group of individuals ...

Yet, 10 years ago, when I would take one of my sons, or myself to the doctor, the only thing dealt with was the problem at hand. Nothing else taken into consideration ..and I had all these other balls in the air ... and I felt like I was going to tip over at any minute ... and I had no idea if I was going to crash or the world was going to implode ...what was worse ...was I wasn't even sure if anyone was aware that there was even this sick person named Peggikaye trying to keep 4 sick people balancing ...and if they did crash ..would anyone even know to pick up the pieces.

I would take Benjamin for an evaluation and they would say "he's autistic we need to do OT 2 times a week, speech therapy 1 time a week and PT 1 time a week". He needs to have Cognitive Behavioral therapy and send us to a behavioral psychologist who would catch on rather quickly that I worked well with my son. Psychologist after psychologist worked with us two or three appointments, gave us tools to work at home and sent us on our way. We did 40 hours a week of ABA in our home and we used the public school system ...
We did everything we knew to do. We went to Autism support meetings we took him to pediatric nurologist, and pediatric gastroenterologists. We took him to pediatric pulmonologists and pediatric orothopedists ... all in an attempt to get this little body ... no single part of any of it seemed to work right ... trying to get it pulled into a functioning ...something resembling ... functionable.

In the meantime ...we had another child who was also emerging with tics and obsessions and compulsions ...who also had an immune deficiency requiring his own fair share of appointments and pulmonologist appointments.

Many times Benjamin's tics collided with Samuel's OCD ...and at that time you would thing that we were in Nagasaki Japan ... a nuclear war would have been quieter.
Yet ... no therapist , no doctor ..no psychologist seemed to be able to deal witht hat issue because they were Samuel's doctor or they were Benjamin's doctor or therapist ...

And I ... was imploding and exploding and my heart was shattering and I had no idea what I was doing ....

I'd go to these doctors and therapists and be told ...for what is wrong these kids are in remarkable shape! What are you doing?
I'd look at them and want to pull their eyes out. "I'm FAILING!"

I had no idea that I was in fact succeeding because I was caught up in the middle of the battle

No one was there for us as a FAMILY. They were MY doctor.
They were Samuel's doctor
They were Benjamin's doctor.
They were Don's doctor.

No one was able to deal with the fall out of the issues that effected us all ... I was doing everything and I thought I was failing at everything. I had nothing to see into the future. No one told me that these diseases effect the family, it's a family issue.

When I get my degree, and I go into practice ...and young mother brings her ticcing child to me and says ..."why is he moving his head like this and blinking?"
And I help her to understand that it's a misfiring of a brain signal called a tic, and it can be managed ...with medications ...and it's ok, because it's just a disorder called Tourette's ... and he's normal for a kid with Tourette's.
But that it's not just her child that's been effected, but she has as well, and her husband and her other children ...
and that she's not alone ...
and that there is a light at the end of the tunnel ...


And one day the child will be 18, going to college and she'll be looking back to when he was 7 and going "WOW! look at what a great kid I have!" And the time of diagnosis and learning to cope will have been a time of enjoying her child ... not a time of fear and exhaustion ... and fear of failure and fear of loosing one of those balls in the air!

If I can do that for just one person, just one mom, just one child, one family. I will consider this time worth it.