Friday, 14 June 2013

I Want You to Stay...

"Funny you're the broken one but I'm the only one that needed saving"...Rihanna, Stay

I've been listening to music today to soothe B (and myself) and I stumbled on Rihanna's song "Stay" and for some reason it has just stuck with me all day.  The line above is an excerpt from the song and it is so amazingly true to my life.

Mr.B's Birthday, Nov 7, 2011
Mr.B has given me (all of us) so much more to live for, strive for and love for.  How can you put that into words, all that he's done to make my life a more rich and happier place to be?  I thought my life was truly full before B.  I have a wonderful husband, such dynamic and awesome boys and an amazing extended family and friends.  My life was full and rich before Mr.B but now it is just so much...more.  I have this sense of purpose that I never had before.  I was always a strong advocate for Torin and Autism but with B it has grown into a sense of purpose, a life choice, a career if you will.

"Sepsis, Meningitis" two words I can only hope are never
associated with my children ever again...the scariest days of
my life thus far.
I have such love for my children and have so much respect for what they offer and teach me each and every day.  With Braeden it has been a whole new learning curve, medical terminology, stress and love.  Love for Mr.B but just as importantly love for life and what it offers us.  Because of Braeden, life is lived now in technicolour, vivid and full of reason and choices.

Momma's blanket is the best
I've come to realize that there is no way to 'teach' someone how to live life day to day (or in your dark moments hour to hour) but you have to come to the realization on your own.  We each deal with what life hands us in our unique ways and for me it's given me greatness, not in myself but in the realization of just how precious our time is.

Thinking deep thoughts today
I know people often say to me, "I don't know how you do it".  How do I do it?  I don't have a choice, Mr.B is who he is and he just needs us.  I suppose I could hide my head under the covers (and yes, I've certainly wanted to more than once), but at the end of my self-sorrow I would still be in the same place I was.  Instead we choose to embrace life, embrace change and embrace our struggles.

So intent and ready to learn
Life with Braeden (well with any kids really) is a struggle but never a struggle that isn't worth living.  Not once in 19 mths have I wished B to be anything or anyone but B.  I never wished him "well", I never wished him "fixed" because he is so incredibly perfect how he is, who he is.

Sarah nursed B through some rough and fragile nights
 when we were originally up on Unit 2...this is B's reaction
to having his assessment done today...poor Sarah!
The Unit 2 Nurses have loved having him in for this 'visit' because they get to see in living colour this kooky kiddo's personality!  He's not always been happy (sorry for the rough morning Sarah) but he is always completely full of life.  Braeden is here to teach us all how to live, how to love and how to just be in each and every moment until they are no more.

I'm certainly not a perfect parent (goodness knows that's an impossible quest) but my children are perfection because of all of their quirks and complexities.

Story time with Daddy tonight, Mike looks asleep and B's got
his nose fully in his book! :)
Thank you to those of you that read the blog, it gives a larger life to Mr.B.  Our story is one of many in this hospital, there are so many other families with struggles harder than ours.  I will be forever thankful, grateful and in debt to the astounding people of this hospital and those that have been such a huge part of our family.  There are not words to express what each of you mean to us, to Braeden.

I missed important thank yous the last two nights as well...thank you to Kelsey and June for dinner on Weds night and to the Didrickson clan for the wonderful meal last night.   Another Ginormous thank you to the Kuhle Family, Rachel and Nathan, I really don't know how I could have gotten through the past few months without your constant kindness and willingness to care for my children on a moments notice.  Thank you (again) for taking the big boys to the zoo today to occupy many thank yous!  We may not have any traditional family in town but you are all part of our Calgary family group!

Braeden had a rough start to his day again today and gave Nurse Sarah (who thought she'd struck gold getting B) and her student a course in his vocal strength.  It makes me feel immediately guilty that I'm not here 24/7 but I also know that that's not entirely possible, no matter how I am to work things.  I've relaxed considerably through this visit as well, which has given all of us a bit of freedom (and B a break from his Momma too!).  I've always trusted that B's in good hands here and it's never a matter of trust, it is simply a matter of not wanting to ever be apart from any of my children for too long (and a bit of a control issue...shhhh).

A Braeden Flower, June 2012

Mr.B's been 'off' a bit again today and I'm really hoping that it is simply growing pains in his tummy.  He's had a bit of pain with being moved about and I'm assuming since he screamed his blooming head off this morning that he has more than his fair share of gas in his intestines because of it.  It's hard not to be a bit panicked but we've got our lovely Dr.Vomiero on this weekend so we are thrilled. 

Our current outlook is to go home on Sunday (a superb Father's Day gift) but if we have to stay on another day that will be okay too.  He's tolerating the larger feeds now and is working his way back up to what is his 'normal' for feeds.  Tomorrow will be the real test on his tummy for adjusting to the changes in volumes.

We are also running an Oxsymmetry test tonight (oxygen) and I'm eager to see the results off that, I think he is doing amazingly well off his oxygen and I'm hoping that the test shows just that.

"Not really sure how to feel about it.
Something in the way you move
Makes me feel like I can't live without you.
It takes me all the way.
I want you to stay"
From Our Home (Hospital Room) to Yours...

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