I call a Re-Do

I woke up this morning and thought…Oh no, that does NOT count !!!

What I just did, what I just had, does not qualify or count as sleep.

Have you ever had one of those nights and mornings??
I call a re-do…a sleep re-do

Because that night of tossing, turning, thinking, worrying does in NO way count as sleep.

I toss, think, fluff my pillows (all 6 of them), too hot, too cold.

Dogs on my feet, dogs on my legs, dogs on my head

It’s a real 3 ring circus at out house and in our bed.

But, I love my pups, they are my babies, now that my babies are too big, so I can’t find the heard to kick them out.

So, up I am, mad that I didn’t sleep well and proclaim a Re-Do

That, unfortunately I won’t get to attempt until tonight.

For my Daughter…you are my Sunshine

For my daughter who has been through so much. For my daughter who has had to have her life, needs, wants often put on a “lets wait” status. For her, and so many other siblings of special needs children who so often feel unimportant, or a bystander in their family and life as the constant needs of their siblings are met. You are all the unsung heros.

kelsie1stbday

You are my Sunshine
You are my Love
You are my heart
You are my Joy
YOU are MY daughter

The day you were born is when my life became complete.
The day you were born, my heart was full.

Zac and Kelsie

The pat of your sweet hand on my back,
The sound of your sweet voice,
The soft breathing as you slept,
Food for my soul

Eyes Bright, big and beautiful,
Sparkle with wonder and delight.
A smile that reflects the beauty
Of you

beachkelsie

Your years filled with trials,
Your days filled with questions.
Your heart trying to find its way

Your heart never to be broken,
Your life to be never ending joy.
Dreams that come true
All my hopes for you

Your strength I admire.
Your Character I am proud.
A spirit I enjoy
With beauty beyond compare

713679342_Y84Ax-M kels

To know you is a pleasure.
To love you a joy.
To be your mother, a Blessing
For you to love me,
A Gift

I hope all your dreams come true.
I know you will be Amazing in all you do.
I am certain you will soar
I Believe in You !

You are my Sunshine
You are my Love
You are my Heart
You are my Joy
You are MY Daughter

713762581_WAX9X-Ti k and k

The Misunderstood Child

I found this many years ago, and it simply made me cry. It was as if my Zack had written it himself. We, society can not understand behavior that they can not SEE manifesting in a brain. We see bad, unacceptable behavior and assume this is a bad child or a bad person, when sometimes that assumption can not be farther from the truth.

Me and my sweet, and misunderstood boy, Zack

Me and my sweet, and misunderstood boy, Zack

The Misunderstood Child

I am the child that looks healthy and fine.
I  was born with ten fingers and toes.
But something is different. somewhere in  my mind.
And what it is nobody knows.

I am the child that struggles  at school,
Though they say that I’m perfectly smart.
They tell me I’m  lazy-can learn if I try-
But I don’t seem to know where to start.

I  am the child that won’t wear the clothes
which hurt me or bother my feet.
I dread sudden noises, can’t handle most smells,
And tastes there are few  foods I will eat.

I am the child that can’t catch the ball
And runs  with an awkward gait.
I am the one chosen last on the team
And I cringe as  I stand there and wait.

I am the child with whom know one will play-
The one that gets bullied and teased.
I try to fit in and I want to be  liked,
But nothing I do seems to please.

I am the child that tantrums  and freaks
Over things that seem petty and trite.
You’ll never know how I  panic inside,
When I’m lost in my anger and fright.

I am the child  that fidgets and squirms
Though I’m told to sit still and be good.
Do you  think that I choose to be out of control?
Don’t you know that I would if I  could?

I am the child with the broken heart
Though I act like I don’t  really care.
Perhaps there’s a reason God made me this way-
Some message  he sent me to share.

For I am the child that needs to be loved
And  accepted and valued too.
I am the child that is misunderstood,
I am  different-but look just like you.

Author – Kathy Winters

My child is in the Psychiatric Hospital and no one cares

Rethink Mental Illness

Rethink Mental Illness (Photo credit: Wikipedia)

I was speaking to a friend today whose child was recently in the hospital, the Psychiatric Hospital to be exact. This smart, educated, kind, soft-spoken mom I have gotten to know because we both love and raise children with mental illness.

She was asking how things were going, knowing the past few weeks have been incredibly difficult with my son being unstable. As we discussed the ups and downs of mental illness, the stability and instability roller coaster, we discussed how the Stigma associated with Mental illness is still so wide-spread and doesn’t seem to be making any headway with culture and society understanding this. She commented that when she had to hospitalize her little boy, who is diagnosed with Bipolar disorder, a few months ago, that no one acknowledged it. Unlike when someone is in the hospital for an illness, cancer, injury etc…neighbors usually rally to the family to offer support. Well meaning and kind neighbors bring casseroles and food by for the family to “help  out”, cards are sent to the family and/or person in the hospital. But, when you are in a metal hospital NONE of this happens. No cards came to her family or the child. No one asked if she needed help with anything. It was simply not mentioned.

Why?

Why is that?

Why is it that when you are in the hospital because your mind is “sick” that no one cares? Why is it different from your body being sick or broken? We understand Autism, and how that manifests itself in the childs behavior, actions, social functioning. Mental illness is no different, it can and does affect people the same way, in varying degrees. Is it because most people with a mental illness “look normal“?  You can’t see what their disability or challenges are? You can not see the sick mind?

I have been told that too. “Your son looks so normal. I would never know anything was wrong with him”

Well….ok. No, you can’t SEE OCD/Depression/Anxiety/Tourette’s or learning disabilities until and unless the symptoms of these are actively present in the person. But I can assure you, lack of any outward, visible “disability” does not lessen the severity.

Please, if you ever have a friend, a loved one that suffers from mental/emotional illness, hospitalized due to their illness, please don’t ignore them. Don’t pretend they aren’t really sick. Dont pretend they are there because they aren’t “strong” or can’t “handle things”.

They need help.

Help with a brain that has an illness, just like broken bones, diabetes, cancer, lupus, COPD and others.

Send a card. Bake a casserole. Offer a kind ear and understanding.

My Pity Party

I am posting after yet another episode of hell here due to  raging and lack of impulse control and inflexibility of my 17 year old son. Pardon me, or not, if this is really raw.

These episodes happen usually as a result of something very minor.

Really. Minor.

Today he was set off because his younger sister asked to watch her “show” on the main TV in the den, where he was watching a show.

(background) the show he was watching he has seen several times already, and has recorded, so he can watch any time. The show she wanted to watch is only on the Netflix channel, that she usually watches in the upstairs play room which seems to run cold.

So, she asked could she for once watch her show downstairs and he could finish watching his show when hers went off. Sounds simple enough. Right??
Wrong

For a child who has a brain like concrete and NO flexibility in his thinking at all it is impossible to “switch gears” like this.
I asked him if he would help me out, and let her watch her show, and the standoff began between him and her.
The showdown began.
He becomes more and more agitated, as does she, name calling begins. So, since it seemed like he was not being agreeable to something I thought was not a major request, I told him he had to let her, for once, watch in the den, especially since his show was recorded AND he has seen several times already. I hoped for a miracle of agreement. NOT

The Rage begins.
Oh, did I mention a plumber was at the house doing an emergency plumbing job? It usually happens this way. So, outside our house, the plumber can hear my 17-year-old son screaming, like someone is killing him. Along with him yelling at his sister, them chasing each other and the total chaos going on. (while I am outside trying to talk to him about what the problem is)poor guy is looking at me with some concerned expression as he is hearing all of the commotion from inside. I just calmly say..”that’s just my 17-year-old unhappy because he didn’t get his way”

The next thing we  hear is  a bang on the front window, above where we were at the source of the plumbing problem. As I look at the window I see that my son has hit it, and broken yet another set of blinds.

Oh well, par for the course here.

Things are always getting broken during his rages.

Throw in this mix of madness my husband just left again for out-of-town business trip for a week. And I am here, as always, dealing with the chaos alone. Trying to get two kids from killing each other.

As I enter the house, my son is crying and sobbing like a 4-year-old (again, usual behavior). I wonder, will this ever get better?  Will He ever get better? Will he ever mature enough to someday be independent? Ever? I give up.
We had a beautiful new house 6 years ago that now looks like a place of destruction because of all the holes he has made in walls (during rages). Fortunately I have become pretty good at plastering and re-painting them. Yet some I just leave, the ones where he slams a door so hard it puts a whole in the wall where the door knob hits.

I am feeling so, so, hopeless, worthless, not caring anymore, giving up. My pity party begins.

We live in constant upheaval, the house always needs repair, when we try to get ahead financially something always breaks or needs to be fixed. It’s never-ending. Now, I know, we are not alone. Not by a long shot.

But I am thinking, why?? I’m a good person. We are good people. I pray, am faithful, as does Zack. Poor kid prays everyday for GOD to help him get better. For him to feel and act better. Nothing, no peace comes to him or us. Many days we feel lost, unheard. And he asks, often, why did GOD do this to me? Why am I like this? Why wont GOD answer our prayers? I don’t know. I just don’t know.  My heart breaking, again. His doctor is fantastic, but medications usually only bring stability for a brief time. Never long enough.

This business of Good Boy Roy I have been diligently working and trying to grow for 3 years now, for him, to be his future, seems to be going nowhere. Or, should I say, not where we hoped it would be by now. This too makes me feel like a failure. I think to myself, if I was better, smarter, more business savvy it would be a National brand by now. If only I could do more. He will not, I am sure, be able to work for someone else, on their terms or time frame, but will need to work when he is emotionally and mentally capable. Which was the reason to start the business. People with the extent of neurologically based challenges that he has need great flexibility. So, we plug along. Living our life. Hoping. Praying.

I go about the usual business of cleaning up whatever destruction is left. Trying to gather my nerves most of all. Waiting, hoping, praying he will calm down soon. Hoping, praying, my daughter will somehow grow up to not hate her life or her brother, but somehow understand he is sick, and not purposeful of most of his actions like this.  He has been under constant medical care since about the age of 4, with tests run, EEG, Cat scans and the like, which show total disorganization in his brain. The cause of his multiple diagnosis, OCD/ADD/Depression/Anxiety/Tourette’s (caused by a strep infection in 5th grade) and 3 head traumas.

As I continue on my pity party, I as always, am thankful for what we do have. Thankful for what my son has accomplished and what he can do. He is a loving, sweet boy, as long as he is stable. But the inflexibility rarely, if ever, gets better. We have much to be thankful for as so many have lost children, lost loved ones, devote lives to children who are unable to even feed or bath themselves. Yes, a midst the turmoil and chaos, we are lucky. Very lucky.

Pity Party over.

Mental illness and Family

Loving and raising a child with mental illness is nothing less than exhausting, on a daily basis. We do not live day by day, yet minute by minute. Anything at all can quickly change a mood or atmosphere from calm to chaotic.

As a parent, I, we, accept this life. This constant chaos. This life of uncertainty. The innocent victims as I see it are the siblings of these intense, high maintenance, chronically needy, mentally and emotionally challenged children. And, of course, the affected child themselves.

These kids certainly in no way deserve this life they live. This life of wanting to belong. Wanting to fit in. Wanting friends. Wanting “normalcy” that most likely never or rarely comes their way. ( I am speaking from our experience) My son, Zack, wants all of these things. The stability he enjoyed at times is never long-lived. This fact is not lost on him, as he begins to feel “normal” chances are the medications always stop working that lead to a spiraling down of ability and functioning.

This prompts more calls to the doctor, more changes in medications, more possible side effects to look out for. Day in, day out. Hoping, praying that the “just right” cocktail of meds will soon be found.

My daughter, now 14, has endured a life certainly unfair as well. As do so many other siblings of children with some form of a
“disability”  be it physical or mental.  The constant appointments they are dragged to along with their sick sibling. Outings and vacations not allowed because her brother was “unstable”.  For us, it was constant doctors visits, counselors, therapist offices she had to sit around in all her life, patiently waiting as her brother was seen. The sacrifice she has made being part of this family is endless.

The resentment she feels today, as a teenager, is certainly understandable, although heartbreaking. This life has taken a toll on her. On all of us. A mentally ill loved one, especially living with you, affects the entire family unit. Usually not in a good way. We live, function, press on, in a way that is normal to us, dysfunction at it’s best.

We just go on.

Because that’s what we do. It’s who we are. Family.

We hope, we pray, we laugh, we cry, we love, we support, we survive Together.

We are Family                                                   

cruise pic..proper