A Whole Other Layer Of Consciousness

 

I have been absent. Because I am learning a whole new life..That takes both lot of self-management and a lot of effort. And between  all that I am still working..and being a mom..being a wife...a friend...a daughter....sleeping..eating.

It is hard to explain this layer of your child having all the sudden a very long and hard health issue completely unexpected. You end up living in a very different layer of the world that those who don’t have it..don’t live in. and it won’t always stay like this-I won’t let it. But reality is that for now I am separate. We are separate.

And now after talking to many many people in similar situations and doing my research and reading…..I am not unique in feeling like this. People who have kids who have health issues live in a bubble of their own. It’s very different than many other types of hard times or crisis. It scores as number one of the stress scale out of 20 crisisis. GreatL

 

Like at work-literally anyone I tell Beauty’s story too stops whatever they are doing and helps me almost full time. Instantly. They all cry when I tell them. They are sending me scientific research at midnight on Saturdays. And they only do this for this type of issue. Only this.

Divorces have been announced almost weekly at work, parents being ill, even spouses being ill, loss of jobs, and loss of homes, robberies and fires. When you tell another human being your child is not well and it will be long term…it’s a whole other ballgame. The world stops..both for you and for those around you it seems. I never imagined this as I have never been put into this world before until now.

And who I have relied on through this has been different than my normal patterns. My people in this have been my work people. The scientists, medial advisors, the doctors, the pharmacists, the finance guys whose brains calculate the compliance rate vs the efficacy rate. And they have all held me and hugged me and taken care of me too. They have been my people these last two weeks and I could never ever have predicted this either. It’s funny what crisis brings-if you open your heart. I have depended on about six of my work relationships to a whole new level through this.

I am laser focused right now on making the right decision. And we have made it now and I feel like I can breathe a little better. I feel hope again.

I am still finding it a bit hard to live in the “real world” right now but a bit easier daily. And the world I have chosen to live in is work. Where the patient comes first. Where science is at its most innovative. Where I have people who are literally geniuses wanting to drop everything else and help me..for the patient..for science….for me..for her. Where this is a case to be solved. They don’t ask me about her before this-or think what it will be like afterwards. They don’t tell me about their kids-or their troubles. They don’t tell me about their work, their happiness, the problems, their lives, their vacations and their files. I don’t tell them about mine.

We focus on the patient. Because that is what we all do. That is why  we all come to work every day. For the patient and nothing else matters.

My heart is full of love and thankfulness for the people I work with right now who are deeply taking care of me and my girl. Our world has become a better place because of these three guys and these three girls. Who could ever know.

 

A Warm and Loving Body in My Bed

 

“ In life it is only fair  that for that each time we are sad or disappointed..we smile for each other thing that is a blessing in our lives” (or something like that!!! Can’t’ find this amazing quote now)

All I know is that I have a great life despite everything else.

I am still lucky.

Last night I cuddled with my husband and kissed him. We lay together by the fire. I woke up to him. Yesterday evening all 5 of us cuddled and watched the silliest movie ever with blankets and popcorn. I couldn’t have asked for a better night.

Despite it all and because of it all.

These are my people. These beautiful four people are mine forever. They are my family. And we will stick together through thick and then..that is what I know for sure.

And that……is a true blessing.

And we have created what we have with every single fibre of our being. The deliberateness..the choices…the values teaching…the working hard…getting it right…getting it wrong. Picking ourselves up off the ground….together.

Always always TOGETHER.

 

And watching the kids have each other..not just us..each other. I think their strongest love and attachement  in the world-their strongest bonds are to each other-their siblings. We never wanted three!!!!! How did this happen???? But so dperately happy we have three because in especially times like this…they all need each other …I see it clear as day. I am so happy I will leave them the legacy of each other..beyond me and their Dad….they will be the three of them. A bond that can is irreversible-brothers and sisters.

I showed Chase and Bear yesterday the two types of braces. And it touched them both profoundly….the sadness..the anger..the protectiveness on their side for their sister..the “Why?” “Why Mommy????

Suddenly for the first time my eldest Chase understood both the joy and the burden of being a parent. It clicked. For the first time I think he felt true empathy as he said so seriously “It is just too much right now Mommy for you guys”

And for the first time I did not try to shield him from what I knew would hurt and worry him. I told the truth to my eldest son.

Yes it is.

But I am counting my blessings because I have love in my life. Beautiful rich, wonderful love. Right in front of me every single day and night.  Love that we have grown, and built and fought to have..and fought to keep. Mine. Rightfully Mine.

People in this world who I fight and who fight for me.

And that may be the only thing really that that will ever matter if I look through that lens. And that is the lens I will need to look through as I move through a life that is taking me by surprise at every turn lately. The unexpected grabbing me by the neck and nearly choking me.

Thank goodness we have set ourselves up well and that our foundation is made of steel. As what I am realizing? That foundation is everything.

And so from that lens? I have everything I need.

Where We Are Today

“The root of all suffering,” the Buddhists say, “is the desire for things to be different than they are.”

 

After a long and grueling week of waiting-we have returned form the orthopedic surgery pediatric unit.

 

Beauty defiantly has moderate (not mild) scoliosis. She will be braced 18-23 hrs per day for approx. 3 yrs. And I am now, almost overnight I am the Mom to a talented, beautiful, athletic dancer and skier who has adolescent idiopathic thoracic single curve scoliosis for the rest of her lifetime.

 

Our world has changed in a way that we never asked for it to change.

Do we ever have the choice?

 

Everyone has something to deal with. This will be hers. This will be ours. This one is big.

 

I feel parts of myself coming out I hate. Illogical-stupid -irrational feelings that are totally foreign to my soud-jealously towards everyone who has children who do not have to go though this. Resentment at “easy stress” of others that I used to be able to relate to and that now seem so trivial to me and probably will be for the rest of our lives. Parts of myself I hate are emerging. Jealousy-resentment-anger. And I can feel people pull away too-it’s just too much for everyone. And Beauty’s situation scares people-our situation and hardship is scary right now. It has reached record proportions. I am now the girl with a ton of problems and ones you don’t want ever happening to you right? Or maybe it is me pulling away from you all. Too much. Too much.

 

I cried and cried and cried let night until my pillow was so wet I had to change it.

 

But I also knew that deep inside of me and us…there is a new beginning too. A person in there I also love who will emerge. A person inside of Beauty that will emerge too and make this a beginning and not an end. Who will accept where we are at and use it at the deepest of personal transformations for all of us. I know it is there inside and I just have to get to it.

 

And for this reason and only this reason..we will be unsinkable…..one day..we will be unsinkable…she will be unsinkable all will  be unsinkable to the pint that people will look at us and say “I wish I got to grow, love, change and be that way”

Suffering is the biggest of change catalysts.

 

I feel like our family has lived a lifetime together in a mere 2 months.

 

One day.

But for today….and probably tomorrow ..and the next day after….?

 

I feel a pain that never in my life have I ever felt anything close too. And unless you have had a child with serious health issues… I can assure you….you  have never even come close to feeling this type of pain in your lifetime.

And I keep asking myself-which is completely normal:

 

Why Us? ??

 

When the really question is: Why not Us?

 

 

 

 

 

 

 

The Other Woman

(on a lighter note today)

Some people are jealous of the other woman in their husband’s life.

I kiss the ground.. of  the one I know ...walks on.

It is my husband’s office manager of more than 25 yrs! Tall blond skinny, sweet….and saves our lives many days of the month.

Besides being totally efficient and effective at her job…she does lots of little/big helpful things.

Like picking up my husband from his colonoscopy…like telling clients he is on  the phone while he is emptying his system for the colonoscopy ever five minutes..driving our daughter to dance…picking up our son at the orthodontist..Getting our car at the garage….picking up Hubby at the garage… tending to sick kiddies on the famous office couch….coming in for  emergencies to “head office” at home if kids really sick. I think she even drove my Mom somewhere once. Arranges for pipes to be cleared…cars to be towe

A career woman like me…has to have another woman. It’s needed in the ingredients of success and work life balance. I mean do a lot too of course..I am not always at work and I make home a priority-but if you want to do well both at work and at home you have to feel good about deleagating things that can be (driving hubby to colonscopy vs specialist apt with the kids). To do it well you cannot handle everything yourself either at work or home.

I like mine plenty. And so does my husband.

When they speak on phone it is like a second wife! They even swear at each other…it is really odd to listen to it..I always know it’s her by the tone in his voice..whatever works!

And she cares too. Truly cares about him. He tells her everything I bet. I am always a bit embarrassed when I go visit the office….like she is thinking “oh yes... you nagging controlling mean wife why did you do that last night??!”

Anyways-some people don’t believe that men and woman can be friends. My husband and I know that is not true. We each have other men and woman in our lives and we are all around grateful for it.

I honestly don’t know what he would choose to give up if he had to. Her? Or me? And quite honestly I totally get it!!

IDream

There are many things I dream of lately…

I dream of a night alone with my husband without worries. Time to talk..to be together. How many weeks now? 10?

I dream of a simple vanilla ice cream cone in the summer

A long bubble bath or shower

A shower gel that could capture where I am at

Of someone else doing the dishes

A fireman to come and save me

Watching my daughter spinning and spinning in a new dress

I dream of the simple dinners and laughter

The long sleeps that were uninterrupted

Of my phone not having to be kept on

I dream of knowledge. Knowledge as power and decisions being made

I dream of the next year ahead and the good things that are bound to come our way somehow

Of all the good luck in store for us

Of getting back to my biggest worry of the day being ‘” oh that sucked!”

I dream of being me again

Of lighter shoulders

Of not being jealous of all my friends and families lives

Of laughing and love

Of her being tucked in curled up in a ball in her cozy pjs

Her dancing

Her in her little short tank tops with her tummy showing

Just simply Her.

And I dream of being free

Of us being free

Of freedom again

I miss what I had and at the same time look forward to what I know I will have again one day.

I want it back

And yet I know I cannot go back

I can only move forward

And forward is where we will go

 

 

 

 

 

 

 

 

 

Why Do Bad Things Happen to Good People?

I honestly don’t know.

Sometimes I think it must be much easier not to be very religious.If I was a church goer..I bet in these last few months I would have stopped going.

I am trying to keep the faith. I am desperately trying to do it. Trust the people. Trust the process  Know we can handle it. Know it will turn out all ok eventually.

But seriously?

We literally just take blow after blow it feels like. And big ones.All to the head it seems.

It’s to the point I am not even bothering anymore to share. It’s almost too comical. To ridiculous. Is this a bloody joke in fact?

 

Anyways it’s too bad on blogs you can’t say it all.At this point does not matter as even my real life people I am shutting down on. Just too much. Certainly too much at once.

I know I should feel really blessed balh blah blah blah.

And most the time I really do.

But right now? Nope.

 

Why is all of this happening? Why?

It takes a lot to get me totally down..alot. I can always pick myself up off the floor.

Friday night and supposed to be celebrating Valentine’s Day late…..I am still at work and I am going home to go to sleep.

 

Goodbye for a while probably.

 

 

Chocolate, Spanx and Excercise

Took a look at my Happiness Project from a year ago and it’s amazing what a year can do. Am I happier? I would say yes! In all the little ways (which is quite shocking taking into consideration this has been one of the most challenging years of my life)

I have just gotten better at day to day life. Ritualized and simplified even though life has gotten more and more complex. Way better at living in ambiguity (clarity is a thing of the past) and better at rolling with the punches. I still expect hell of a lot from myself but my expectations of others are lower which makes life easier for me.

And I haven’t worn spanx in 3 months. Ever. It’s amazing what 8 lbs and some toning does to a body. Mine in particular. I am no skinny bathingsuit  calendar model by any stretch-but I look good in clothes( I think) and I am satisfied. I feel back to good. Goodbye spanx unless a special occasion or a hot date (both very rareJ)

Moving on to chocolate bars. I have worked at this company for 9.5 yrs and do you know how many times I have gone down to vending machine? Three! That is IT. Well yesterday I was in a piggy mood-very rare for me..so I went and ate a mars bar. Then came back to desk and had three 100 calories snacks (which equaled more than a second mars bar which would have been much more satisfying). Then I had 12 almonds and a full dinner an hour later. Totally totally unheard for me on a weekday at work.

And I just knew..I knew..That for some reason I would lose a pound overnight. Always happens when I pig out for some strange reason. Not if I do that like on vacation for a week but for a day it’s always a win. I was right! Lost a pound! Love it

And exercise- well I am so far ahead of where I was five, three and a year ago. I had trouble fitting in one Pilate’s class a week back then. Now with 5 times a busier schedule I do 1-2 yoga classes a week, 2 times at gym for weights and 1-3 times walking depending on season. Plus at least a  half day of skating, snow showing or skiing on weekends. It is not the amount nor quality of exercise that for me astonishes me (I am still very slow and don’t push myself much)…it is that I actually sort of kind of somewhat look forward to it all!~!!!!!!!!!!!!!!!!!!!!!!  I never ever want to go but when I get there I like it. So I have re- programmed my thoughts to just surpass the cognitive confusion of getting ready and leaving the house and just forget that part. In general I just do it and it feels damn good.

So instead of the BIG picture lately my life has been about the daily small pictures. The little chocolate bars, or walks, the chapter in a book, the childs play position in yoga which I could stay in forever, pretty lip-gloss, the non restraint of spanx, catching a peek at my slimmer butt in the elevator and driving my kids  all over the place in the evenings to sports stuff and medical stuff. Doing lots of dishes and laundry and trying to enjoy it….being thrilled with the flexibility I have at work..Connecting with friends as often as possible and coming up with sweet nickmanes for all my loved ones. Eating the delicious shake and bake chicken and parsley potatoes my husabdn made for us so lovingly last night and enjoying the laughter at the table.

I am realizing that life can be happy from such small things like a text in the middle of the day from a BFF or a good soak in a big bathtub at night. It’s truly as simple as that sometimes. Sometimes that is the only way to make sense of this crazy life isnt it?

Happy Me is backJ Regardless of the way the world turns.I realize I missed me. Alot.