ICU's, EEG's and Acceptance

Its coming to the point in my life where if it has an acronym theres a good chance that I dont want anything to do with it.

Seriously.

Ive had enough of them.

all of the following are acronyms that im dealing with just this week.....

-SPD (sensory processing disorder)

-GERD (fancy for reflux)

-BOE ( Bored of Ed)

-IEP (Individual Education Plan)

-FAPE (free appropriate public education)

-CASK (Sophias Primary diagnosis)

-PCH (Pontocerrebellar Hypoplasia) (Sophias Secondary Diagnosis)

-ICU ( Intensive Care Unit)

-CVI (Cardio Vasscular Incedint )

-EEG (Nurological test for siezure disorders)

Its actually kind of amazing that I havent got them all jumbled up in my head at this point....

All of this strarted brewing about nine months ago when sophia started to have unusual episodes of nurological activity that caused her body to respond in a way that was obviously involentary. It would take someone who knows sophia very well to be able to pick up on the episodes but me and her father caught them right away. She was obviously not in control of the ticks that effected her face neck and mucle tone all over her body . They came in waves that lasted about five to seven minets. The first time I thought she was just over stimulated. The second time I was suspicious and the third time I was heart broken.

"Well isnt this just fucking great...." was my honest to god reaction when I realized this was a new "thing" that I had to get to the bottom of.. " Im sick of playing sherlock to my childs medical mysteries already , just let the girl live her life !!" My pity party continued in my head.

At her routine nurology appt. I tell them of my new concerns and the episodes and her dr asks me to try to catch a video of it to bring to our next appt so that we can look at it together and see if its siezures or not...

She said the S word and I froze from the inside out...

"MY CHILD DOES NOT HAVE SIEZURES , SHE WILL MISS THIS LAND MINE, NOT MY DAUGHTER, NOT THIS, STOP TRYING TO MAKE MONTINS OUT OF MOLE HILLS" I screamed at her in my head..

"ok I will try, thanks, see you in six months " is all I managed to choke out before leaving

Fast forward six moths and I have two videos in hand and a heaviness in my chest as we go back to our nuro-genetics consult..

I already know what coming... an acronym that I dont want to deal with...

She says that sophias episodes do not fit the classic definition for any kind of seizure BUT she wants to do a three day long EEG to try to see whats going on in her brain when this behavior emerges...

Let the pity party commence.... "fuck . my. life. why. us. why. her. why. why. why."

was my thought process for at least 24 hours solid..I have discovered that I need to indulgein all that angry-pity crap othrwise it festers and grows....

Its safe to say July has not been easy on my family. Not by a long shot.

and its only the seventh.... sigh....

I was a self involved stress ball right up until I saw that look on my moms face about this time last week....

every mom has that look... the one that just lets you know something is wrong.

terribly ...very.... wrong. that one that stops you dead in your tracks. she had THAT look..

and then she looked down at her cell phone and said in a low voice " your uncle is being airlifted to lahey medical center to the ICU .... They said it's bad. really bad. "

Nothing and I mean nothing will make you reevaluate your life and its priorities quite like knowing your going to loose someone you love. Someone who helped teach you the things that make up who you are..Someone that you have always just expected to be around... Someone you took for granted all theese years.

Dealing with death is not something I do well, Its not something ive had to do much of physially in person... everyone who ive had to say goodbye to was very ill for very long or it happened so suddenly that there was nothing you could do but work though it. Ive never had the chance to say my goodbyes to someone.

And now that I have had it both ways I dont know which is worse... I really dont.

Saturday me , my mother and sophia all piled into the car so luis could drive us up to say our goodbyes to him. There are just not words big enough to tell someone how much you love them, how thankful you are that they were a part of your life.. No collection of letters can capture the feelings you want to convey to someone who is literally living their last days. trust me . I tried.

I think I grew more as a person on that day , in that room, clutching my devistated and heart broken mother then I have in all of the things ive experienced with my own daughter..

That may sound crazy.. But theres something so BIG about having to surrender to the will of the universe wholly .. you cant fight death, you cant bargin, barter, steal, cheat or beg your way to getting someone back, To stopping a process from completing..

No man can hault the circle of life.. no matter how good or right you have lived.. everyone has a bigger desitny to fuffill .Noone can run from it or save you from it. noone..

I have lost my nana, my poppy, and my father all to diseases and each loss impacted me very deeeply. But I was young and sheilded from the physical reatlity of passing over from this life to the next.. Saturday was the first time I have ever had to come face to face with lifes truth..

Nothing is forever. Except true love and death..

My uncle marshall passed over on sunday, about 24 hours after my mother and I got the chance to say our goodbyes. An hour after they turned off all of the man made machines. He was surrounded by the true love of his family and was in no pain..

which is just about as much as any of us could ask..

My grandmothers choice to say goodbye, to allow him his chance to rest and move on .. Was so SELFLESS and STONG and RIGHT that I was left in complete awe of her..

and completely embaressed by my own actions and attitudes as a mother ..

Just last sunday I was nearly in tears about the "injustice" of sophias situation how we didnt "deserve " to go though so much... such a selfish little twits attitude .

Honestly I was so ashamed by it that I Had to come clean and tell everyone..

The truth is...

Yes im exausted from jumping through endless hoops to get her what she needs...

Yes maybe I did get more then my share of hardship

Yes sophia has gone through more then anyone should have to.

BUT....

Also the truth...

I am BLESSED to have a loving attentive father for sophia who NEVER lets me go it alone.

I am BLESSED to have a healthcare system that actaully can test for things.

I am BLESSED to be able to provide my child the nutrition she needs to grow.

I am BLESSED to be able to intervene with medical help for her so she can reach her potential

I am BLESSED by the love of true and strong people as friends

I am BLESSED by the love and support of a family who never lets me go without.

I am BLESSED because I woke up today put both of my feet on the ground and stood up on my own to take care of my child..

really.

truely.

nothing else matters .

Im saddened that it took such a great loss for me to really understand that.

You have to accept that EVERYONE has to eat a shit sandwich every now and then...

So although this has been a very very hard week on my faily I can honestly say as usual we have come out of the fire stonger and closer as a family and with a renewed faith that together there isnt anything we cant overcome.

So no matter what we find out this week about sophia. I KNOW deep down that we will be ok, she will be ok.

As long as sophias father and I continue to fill her life with love. She will be just fine.