Dreams

Zach has very vivid dreams and they are usually acts of violence done to him. This morning at 4:45 am I get a tap on the head mom can you talk to me for a bit...


My understanding is that both the bipolar can cause vivid dreams as can the meds he takes to control it.

He had me check Liza to be sure we all were ok..His dream was so real he thought he was outside laying on the ground bleeding from a stab wound.
Poor kid he struggles with social skills anyway and they have to haunt his dreams ...

I poured a strong cup of coffee and listened to him spill out how he was dreaming he was walking to friends house and guy jumped out of the bushes and attacked him and then headed to the house to get me.

After he calmed down with the assurance I was here to keep things safe he went back to sleep..

It makes me think of when I was at home and would get up in the middle of the night if I was scaredc or something and mom would get up and sit with me.

There is nothing like a mothers love and her ability to fight off the unseen demons.

What started as a rough day ended on a happy note

Dr appointments

The kids pulmonlogy appointments went smoothly....
Liza's cardiologist one took awhile. She keeps having irregular EKG they don't really know why her ECHO's always look good.

The question I always ask is how much does all the chemical exposure /drug /alcohol and other toxins she was exposed to prenatally effecting her ..

I bring that up almost everytime and yesterday I was told it should have no factor but in order to find out we would have to address FAS...Basically I was told in order to address FAS I need to take it to a FAS  DR....
So I guess that is what our next plan is I am going to push the issue and get referred to a FAS Dr...

Yesterday

While at therapy with the kids I was watching and listening to the therapists chat back and forth while working with the kids.They weren't being unprofessional in any form ,but it made me think back when I worked in the nursing home and the workers would talk to each other while working with residents . Often the residents weren't able to communicate -while watching the to each other it made me think I get it now.
My kids can communicate Liza struggles but can communicate some of her thoughts. there was a boy who I will guess was autistic and non verbal and the worker was very good with him and by no means am I saying I thought they did anything wrong.. but watching them talk just made me think about the whole even if they can't respond doesn't mean they aren't hearing or understanding.

Last Spring

Today's battle

Today I get express to a few about the needs my kids have and the type of services they need to function best in the home and community,that can be a big job...I don't want to sound like crazy  mom but more advocator mom.

To end my day though which is my highlight is I get to go to support group and hang out with some other great people and new friends.

The R word

Anyone who knows me at all knows I hate the R word .. I hate jokes about the impaired ..Those people who are handicapped in anyway didn't ask for that life .. We can choose how we treat them .
I have added another R word Residential Treatment,on Friday Z's Dr said if we can't get the bipolar meds regulated ASAP he would suggest a Residential Treatment.... I know there is a purpose for them and I am not condemning them at all.. but I spent the weekend cursing the word.. the panic in my heart that day ,the tears in Z's eyes saying he didn't want to move out...The sadness in B's eyes wondering quietly if this would be the last Father's Day with us all in our house.

I so hate seeing what kids have to go through.. I'm grateful there are places and people to help them through things... but I still hate the idea there is a need for those R places..


Childhood should be simple --riding your bike,playing catch --ice cream on a hot summer day and hot chocolate on a cold winter day .. not Getting up each day and they remind themselves or we remind them to remember to count to 3 before they react... and all the behavior modification things we have learned..

Some people have told us we are saints for taking the kids... you know we just wanted a family to call ours .. someone to have those moments with.... We didn't sign up for being yelled at,hit and all the other things that have come our way...Of course they are our family and we will take care of them and when we have those moments of ice cream /hot chocolate we cherish them deeply

Things to ponder on

I was listening to a news report where a married couple both having state jobs.One of their worries was how to pay for 2 weddings and buy graduation gifts.Which I am sure that is a concern and loosing 2 jobs would be awful,but my thoughts were what about those who already are scraping the bottom barrel..What are they to do.. it isn't a well we might not be able to buy gits --there are some who if they loose their benefits won't be able to keep their power on their homes or maybe won't be able to pay their mortgage. What happens to them .. or the sick who need their meds who choose to not spend their money on meds.

Also I know that those who get adoption subsidy weren't suppose to rely on that as income but as a bonus.
I have to admit we rely on it as income.The kids have so much going on that I wasn't able to hold done a job out of the home. I truly have no idea on just what we will do if that happens.We won't be able to survive and I really have no clue what we will do.

Maybe this is  a time for some of us to regroup and decide what we can live without.... maybe it is a lesson from God on who we need to be more dependent on.

I pray for everyone who is on edge right now and worried on our future..as always we aren't in this alone.

Home again

Liza still running a temp --had to cancel therapy attempted to explain the immune defeincy but could tell the person wasn't buying it.

Do You

I sit at my desk

am I on your mind today?

The judge made his ruling.

You keep saying I am lying.

Honesty –it what you taught.

Everyone is sad now.

No one won, do you feel it.

I lost some innocence.

Never will that be mine again.

Forever I will be scarred.

Mom says you are sick.

She says that we need to pray.

What do I say to God?

Dad do you cry like mom does?

Oh Dad how could you do this?

Donna Marr

Dark Knight

Values of honor

drives the dark knight to patrol evil.

The heavy thud of his boots

shakes the tall trees as a warning .

Knights anger roars into the night.

Calling to  Evil one.

Coward show your true self now.

You can’t run forever.

The leaves on the trees trembled

as his words rumbled like a tornado.

Hostile threats rocketing

through the air igniting rage.

Tonight the battle ends

Onlookers fighting back the bile rising

from the pungent smell of hate.

Bones cracking and blood spurting

the two exchange powerful blows

Evil attempts to fight dirty

but Knight is on a mission

Evil will be paying for his sins.

His sword plunges deep

Evils vile blood pours to the ground.

Knight looks too heaven

He cries in a mournful howl

I did not ask for this burden

Everyone grows quiet

a young child approaches Knight.

Beckons him to his knees

Like the gentle breeze of April

Thank you she whispers in his ear.

The great knight weakened

by the sweetness of the child .

Takes her in his arms.

Returns his eyes to the sky

Ok I understand why I must.

 Donna Marr

Why Daddy

I wrote this for a close friend

Decisions were made.

He said I don’t have to go back.

Mom is relieved now.

No more can you touch me Dad.

Mom fought to keep me from you.

While I am safe now,

there are still so many questions.

Dad you never came.

Do I mean that little to you?

Do you agree I was right?

Oh dad why did you?

I won’t hear those things from you.

I won’t know your thoughts,

Why you hurt me in that way?

Mom’s fight to protect me has worked. 

Donna Marr

Butterfly

Her body now a shell of what used to be.

A cocoon of sorts-waiting for her mind to be free.

Locked inside of her disease, Alzheimer has no compassion.

But like the caterpillar waiting to be released as a butterfly,

Her soul will be once again soar with wings spread wide open.

If you look deep inside her eyes you can see her stir, waiting

to be free of a prison with in herself.

As the young girl who is helping her eat –she wonders do you

see me? Or can you not look past the wrinkles, the blank stare

in my face. Please remember I wasn’t always this way –

As the young butterfly hatches and wings dry-her soul stretches.

When the butterfly takes flight along with it goes her soul –up

over the buildings over the cars up to the tree tops.

Soaring up to heaven free from its restraints.

So is her soul with that her caged draws it last breath.

She to is now free to soar and ride the wind with the butterflies.

Donna Marr

Heavy Heart

Today it hit me we have always known Liza has a complex history. and we knew she was sick alot but today talking to some volunteers at the Immune Defeincy Foundation it is became very real.

I know that some live with this and have normal lives .. .but I catch myself wondering what is down the road for us.What does the future hold.

How much does she really have to go through... Tonight I am just anxious and scared.

so far

It appears there are still storm clouds in my house.

I am debating on running off on my family tonight and check out a support group. We can't both go due to there is no one to hang with Zach.

Loss

I was reading a book today about the concept on loss and the many levels it effects.
It is easy to understand loss when you look at it as the death of someone  but there is also another level of loss.
I was thinking about the loss of normalcy one feels living with someone with a mental illness.
When Zach is in his rage zone he is the most angry person his eyes turn black and he truly out of control.There is a sense of loss I feel for him. he will never be rid of his mental illness ,he will always be tied to meds and therapists.

Things like organized sports and school plays don't work for him.At the moment he hates large crowds and at times seem as though being home is enough.
There is a whole loss of "normalcy" not only not for him but for his whole family.Holiday meals ,birthday parties are too much for him.
A psychologist told me that kids like him know they don't fit in the "norm" and it is the one thing they crave is to be part of the norm.