Tuesday, 3 January 2012

On my soapbox a bit here

Here I am again, finding myself going a bit stir crazy and it is mostly due to the fact that I've not found the time to post in the past few days (again).  I can't tell you how cathartic it is to just write my thoughts on here and find my focus and priorities.  Unfortunately those thoughts come around at 3am, not in the middle of the day when I have access to my desktop!

Lets go back a few days:

I want to send out a Thank you to our Secret Santa(s) that gifted us with the 12 days of Christmas on our doorstep.  It was a lovely distraction and special treat from you, even if you chose not to tell me who you are!  I know people know things but no one will tell me...sheesh! :)  Thanks!

Thank you as well to those of you that dropped off special gifts and food.  It was all very thoughtful and appreciated!!

Very importantly: Happy Due Date to Mr.B!  Braeden passed his due date of December 30th (also my 37th Birthday) with decent health (I'd say 'good' but I don't think we know what that is yet). Each day forward is a +1 day now, which is great.  We are starting to see some 'baby' things in him now as well such as big yawns and stretches.  He actually sneezed the other day and I laughed and laughed because it was such a 'baby' thing to do that I had forgotten how they are supposed to behave. 

It is still somewhat shocking to me that after almost 11 weeks (8 since he's been born) they still don't know really what is 'wrong' with Braeden.  I had a chat with Genetics today and they have ruled out 'Noonan Syndrome' for Braeden as well DiGeorge.  I was actually surprised by this because after looking at Noonan's it seemed to make some sense for Mr. B.  Genetics is now leaning towards Metabolics for an answer and she said to me, "We really don't know".  There are a lot of hypotheses though!  The fact is that he is still very much a mystery to all the Doctors involved in his care.  The more I hear about genetics the more I realize that it is so vast that they really can't predict much beforehand (before birth). If any of you reading this are pregnant, sorry, these are my thoughts only, not facts.   Braeden has a new roommate today that was born on Saturday at 38 weeks and has Down's Syndrome.  I actually cried today when I listened to his Mom talk to the Geneticist (I was holding B at the time behind his curtain).  The parents had no idea that their son had Down's until after birth.  I felt so devastated for them because they are trying to be strong yet they seem so lost...I suppose it struck a somewhat familiar cord with me??  It just reinforces my thoughts that we really only can predict the very tip of the iceberg of genetics and even then it doesn't show up.  I didn't realize that with ultrasound today that people are still 'surprised' at the birth of their child about Down's.  The similarities between us (notwithstanding the fact that her husband's name is Mike), are quite interesting being as this is her third son as well.  I suppose that life maybe is a bit 'less' shocking to me (if that makes any sense) being as I already have a special needs child.  The ironic thing is when Torin was finally diagnosed with Autism I actually thought that I wasn't the best Mom for this child.  I thought of my three sisters and what spectacular women they are and thought that they would certainly be better suited to the job than me.  They are all more patient, caring and understanding where as I am impulsive and selfish.  I suppose it is all how we view the world isn't it?  Torin (and Rylan) is the best thing that could have happened to me, I have found more of myself by having him (them).  I suppose the road with Braeden seems less terrifying because of my experiences fighting and advocating for T.  Michael and I actually discussed how at least we are somewhat suited for Braeden being as we know the ropes.  I can't believe how worried I was when they were telling me that he had the soft markers for Down's Syndrome in utero...it seemed so ridiculous but I seriously thought "I know how to handle Autism, not Down's!".  What it comes down to is we learn from and adapt to our children and their needs, bottom line.  Having a special needs child is really no different from a 'typical' child, there just might be more steps to take to get to where you need to be.  I have to laugh at the number of times people have commented on my children because they've made me a better person, I've not made them.

What ever the diagnosis/prognosis for Braeden may be we'll learn and adapt, it's what we do as parents.  I suppose all of the 'unknowns' with Braeden should freak me out and I suppose they do to some extent but he is mine and man, I love that little man. Fiercely.  All we can do is continue to live life one day (or hour) at a time and figure out Braeden in steps as we get to know each other.  We won't know for at least a year what (if any) effect the strokes have had or what sort of other delays he might have.  Many of you might be thankful that it is not your life or your child (which would be completely normal and not at all selfish), but when it comes down to it, I am so thankful and blessed that he is even still alive and able to make me smile a bit more each day.


Anonymous said...

Yes, I am MUCH more patient, caring and understanding . . . NOT!! I am constantly amazed at your strength and perseverance/willingness to fight for your kids. I am privileged to call you sister.



Anonymous said...

Hello Lia, Forgive me but your comment about "Braeden even sneezed today" made me think about something...you can see it here: http://www.youtube.com/watch?v=FzRH3iTQPrk

As hard as it is sometimes, there is a reason/meaning for everything. You are such a great mommy. Such an inspiration. Thank you, with all my heart. <3

Anonymous said...

Hey baby sister - Do you have other sisters that the three of us don't know about??? Love you lots, as always! xoxox

Lia said...

Nope just the three rockin' sisters I've got and one rockin' sister-in-law to boot!