Sunday, December 22, 2013

My Day!

It's that time of year again.......December 22nd.  The day where I allow myself to bring out all that destructive thinking.  All the what if's, why's, and every other question a special needs mom dwells on.  I try my best to bottle it up, but today is MY DAY.

10 years ago today ......

Was the last day I was to ever be pregnant
It was the last day my Son was to be "healthy"
Oh ~ All the dreams I had for my family....... little did I know everything was going to forever be changed and the dreams I had, were in fact ..... just dreams.

How does one recover from this?  Not just this small helpless lil baby boy ...... but how does a Mother, whose sole purpose is to protect her child.....could not FAILED




These words will haunt me for the REST OF MY LIFE.  Not to mention remembering the ungodly screams and cries that came from my sister the moment he was born.
I knew my son was in the fight for his life, I knew I didn't keep him safe,  I didn't do my job.

The hours that followed his delivery delivered one blow to my heart after another.  Seizures, Brain Bleed, Brain swollen, Brain Damage................

My son was in a tailspin!!  I heard the words death, vegetable, and failure to thrive.

What is a Mother suppose to do?

I was devastated, I hurt in ways that are indescribable.

How awful is this ... all these painful memories of my sons birth.  A time that is to be happy and a celebration but my sons experience is FAR FROM THAT.

Myself, my family, and most important my son were robbed of so many things that day.

How naive were we?  We were to have a baby boy 2 days before Christmas, be home in 24 hours, and live happily ever after.

There are SO MANY things I would have changed that day, looking back I get so angry and sad with all the what if's and why's?  What I would give to be able to rewind and go back to that day.  I look at his life and how hard it is, how painful it's just not fair.  WHY?  What did he do to deserve the life that he got?  Why couldn't I make it better?

Danny can't be fixed!

He has been through and will go through things in his lifetime that are just wrong, painful and terrible.  He never had a chance to just be a lil boy.

If things turned out differently ~ I can't help but wonder......what would he have been like.

Would he have been into mischief?
What sports would he have played?
Do you think Avrianna and he would have gotten along?
I think he would have been a smart cookie. Don't you?
Would he have fallen in love and had a family?
What do you think he would have been when he grew up?

Even something is simple as.....
What would his voice sounded like?  This one hurts, not hearing him.

So today I sit and look at this Handsome Lil Man my son as become and dwell on all the lots dreams I had for him.  I will hurt, I will be sad, I will be angry for the Lil Boy my son was never allowed to be.

As for Tomorrow ~ tomorrow is a NEW day!

Tomorrow IS a day to CELEBRATE!  To celebrate MY SON'S BIRTH and celebrate another year that we were able to make wonderful memories with him.

Danny is here and I am forever grateful he is!  I am so proud of him!  He has taught me more then I will ever be able to teach him.  He is a warrior and My HERO.
I LOVE you Danny, more then you will ever know.

To add insult to injury I sit here and wonder how long I will have to be the mother my kids deserve.  Multiple Sclerosis is a scary disease that doesn't care how hard I've work to take care of myself, or that I have 2 kids the need me.  It as its own agenda.
My body is attacking itself, there's no cure, it doesn't play nice.
I had another MRI on Friday which has multiple new lesions (sores) not only in my brain but in my spinal cord.  Here are some photos for you to see what they look like.  These are NOT my images but close to mine.
This shows new "Hot Spots" active lesions (they are bright white).  I have a new significant sized one on the left side of my brain.
This one shows the lesions after the lesions have calmed down.  They are still there and the damage has been done, but instead of bright white they are more grey on the images.  I have multiple grey spots in my brain.  These ones are probably contributing to my concentration, balance, and headaches.  It's so humiliating when the Dr asks me to close my eye with my arm out and stand straight as I tip over or my favorite ~ sit down, close your eyes, arms out in front and try to touch your nose with your pointer finger..... I can NOT.  Yes, I would fail a field sobriety test without even drinking.  Sigh
If you are as "lucky" as I am you can get lesions in your spinal cord.  These lil bastards or "waegners" as I call them can cause alot of grief.  As there isn't alot of room for the sore in this space without them reeking havoc to your system.
You can see the grey spots in the spinal column here (long black matter between the vertebrae down the back)
 The Dr. believes the lesions in my spinal cord are the ones causing most of the issues for me at the moment.  I have at least 5 in my neck.  We didn't take imaging of my back, so we don't know for sure how many are down there, but the Dr feels I probably have more there also.  With the issues I am having in my legs and feet for the last month, she believes the lesions are more then likely lower in my spinal cord.  She believes the lesions are more along the side of my spinal cord as I'm only have sensitive issues (tingly, numbness, and electric), if they were more in the middle of the cord I would have more functioning problems. UGH!!  So I get to be on a steroid fun filled holiday,. I chose to try the lower dose oral steroids vs the BIG dog IV this time around to see if it helps calm them down.  I've worked so hard and be "healthier" and I don't want to just throw that away with being on these steroids.  I also was sent home with a couple different med pamphlets to go through.  It's kinda scary as MS meds are NOT fun.  I'm trying to fix one thing and there WILL BE something else getting screwed up.  SIGH!  I will do some research and ponder on them, but it's not a choice I will chose lightly...if at all.
This just SUCKS!!

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