The Truth, The Whole Truth, And Nothing But

I know that I am long over due for a post when I am laying in my bed awake at night unable to sleep due to the never ending thoughts in my head.  It's been a few weeks and might be the longest I've gone in the past year without writing.  It's not that it's not been an amazing few weeks, it certainly has, good and not-so-good but I've just not had 'silence' in my life for awhile to just sit and write.  I am one of those people who views writing as I do reading, if I can't sit and read/write in one sitting then what's the point?  It drives Mike crazy to no end when I will read all night just to finish a book when he is one that enjoys his books for days or sometimes weeks.  Can't do it, it's not in me.  I can take more than one day to read a book (I certainly don't have much choice these days if I actually get around to picking something to read) but it is a struggle to put it down!  Of course when I don't blog for two weeks, finding the time to simply write about that much info isn't a short jaunt down the blogger's lane, it's gonna take awhile.  Like anything in life, the more you procrastinate the longer it takes to accomplish, you'd think a master procrastinator like me would have figured that one out in the past 38 yrs...maybe I'll figure it out later!  Today is the first day that I've been home alone with B for more than a half hour here or there so I thought I would write as I listen to his steady breathing through the monitor.  He's been asleep now for more than an hour (yep, I procrastinated on FB first) so I probably won't get this all done in one go but I'll certainly try!

It has been an incredible two weeks and there is a lot of things to share:

FIRST and most importantly, our Sweet Boy is ONE!  I can't tell you the emotions that flood through me when I think that we/he made it to one year.  It has been the fastest year in my life and yet the longest.  I've had more growth as a Mom and a human being in the past year than I did in my first 36 years.  I've never experienced many of the emotions or felt others so profoundly as I have this year.  My three boys are the centre of my life and I am so very proud and fortunate that they've chosen me for their Mom.  They fill me with a feeling of wonderment everyday.  Braeden Joseph came into our lives with a struggle and still continues to do so but he's done it with more grace, happiness and peace that I could only dream to attain.  This child has taught me so much more than I could have hoped and I still learn from him daily.  I've been so content as a woman/grown-up/person since having my kids, it really has fulfilled something in me that I never knew I wanted filled (I wasn't one of those little girls that dreamt of the big wedding and white picket fence) and yet Braeden has brought a whole new dimension to Motherhood that I never knew existed.  Mr.B has ensconced in me a feeling of joy, a happiness and love that overcomes me at times.  He has brought so much love and happiness to our lives and he is our greatest teacher of patience and forgiveness.  He has also shown me the greatest pain and fear I've ever known and I've come to realize that I've got to meet it head on and just carry it with me but not let it consume me.  It is ironic how pain, fear, joy and love can be so closely linked.  I am among a small (thankfully) group of Mom's that are aware that their precious child is only with them for as long as they give us and for that I am thankful.  Thankful that through loving Mr.B with all my heart each and every day I live life day to day, hour to hour knowing that each moment and that life itself is so very precious.

People are shocked into silence when I mention that I am aware that B is only here for as long as we get him.  Why is it that people have such a hard time excepting that a child can die?  I have found it interesting how easy it is for people to dismiss the notion that a child may not live a long life, people don't seem to want to admit that it can happen to someone they know and therefore it could happen to them.  I remember clearly the conversation that I had with Kathy (wonderful G-tube nurse) when she was trying to bring up the idea of the Palliative Respite for B.  She was trying to feel out how I felt about Braeden's life and when I was blunt with her about how Michael and I are aware that this sweet child is ours for as long as he'll stay for she was visibly relieved.  It must be so difficult for the health professionals to have those conversations when the future is so unclear for a child. 

Please don't in anyway think that I accept the fact that Braeden may die before me, I have the highest of hopes, dreams and wishes for his future but I have also found the need to be realistic and tell people that we really don't know.  Not a single thing with Braeden is black and white, he is all shades of grey (many more than 50 I'm sure of it), and he has complications with every single organ system in his little body.  He is a very complex medical case and no one can even begin to imagine what our future holds really.  It was the common cold bug that had him in ICU on a ventilator this last time, certainly not a typical reaction to a cold.  All of that aside, he is the strongest, most determined little being on this earth!  The fact that he has defied death many times now is just gobsmacking.  My sisters told me that I need to let people know how bad thing are/were when they are/were bad.  I guess in my heart I knew Braeden has clung to life more than once but I didn't say it in that many words.  I guess that is why I am caught off guard when people in our community are surprised when I explain that he's back in hospital or that he's not doing well.  I think, how is it that they are surprised?  The reality is that not many people have the full story of B's life (unless you've read this from the beginning or really know us well) and most people have the belief that a child will simply 'get better'.  I love that we, as humans, want the best for children and want them to have a long life but it is also very difficult for me to convey to people how different Braeden is.  Sometimes having a diagnosis might make life easier but in reality, B isn't going to fit into a box and if he were diagnosed with a 'syndrome' chances are it will be so rare that people won't have heard about it anyhow (I still have people ask me what Autism is).  Braeden is just that Braeden, or Mr.B or simply B.  He is our life, our joy, our peace, our happiness and our blessing and because of him I want to strive to be better, try to be stronger and to live life in each moment.

We had a week long celebration for Mr.B's big birthday!  On his actual birthday we had a quiet family dinner at home with just the five of us and my Mom (who was visiting from Victoria).  I made a chocolate cake and we had ice cream but being as B doesn't take any food by mouth yet (he has an extreme oral aversion), I couldn't let him just go for it but I did mush up a wee bit of cake and ice cream on his tray.  He was not particularly impressed with any of it even when I did sneak some icing into his mouth.  Ah well!  We now have his 'new' high chair complete from the seating clinic for him (custom fit) and we are working on oral tastes now so the hope is by his 'age adjusted' year (which is also my birthday) we'll do another cake.

 

Daddy Donor!

 We decided to celebrate B's year with another Blood Drive and Canadian Blood Services was kind enough (thank you Kirsten!) to throw B his own little birthday party.  CBC did come out as well and did a short piece on B for the late night news!  Such a famous kiddo!  We shared our cake with anyone donating that day and shared Braeden's story.  We had a few tears shed and the donors who didn't know us were certainly touched when I explained that because of people like them, this child lives.  I was told by one of the volunteers that she had donors thank her for having such a 'happy' environment that day.  I'm certainly glad we could help! We are so thankful to CBS for all the support that they've given us over the year in our drive to give back by running the donor clinics.  We (Michael and I) plan on continuing to donate every 56 days and are always on the hunt for new donors.  If you ever want to join us, please just let me know and I'll gpass on the details.



Chatting with CBC

 

Birthday Cake from CBS

 Braeden's birthday weekend was made even more special by the surprise arrival of all of his maternal Aunties!  As my oh-so-clever Father-in-law (don't tell him I said that), said, we had an Aunt Infestation!  All three of my sisters arrived (with my nephew and niece) amidst our biggest snow fall of the season thus far (a foot in 24 hrs).  They were scheduled to arrive at 8pm and in reality (this must mean they love me), they got to our door at 2:30am instead.  Now for those of you that know me, you know how important my sisters are to me.  These three women have inspired me, taught me and helped mold me to the person I am today.  They are my support, my guidance, my voice of reason (especially when I don't want to hear it!), and most of all they are pure love and joy to have.  We are all as different as we are similar but we have one thing in common, we are each others best friends and a constant supply of love and support.  To have all of us in one city at the same time is a rarity these days (no thanks to the sister that moved to Calgary, me) so it is a cherished event when it happens.  It was even more wonderful due to the fact that my sister Marisa and Niece Acadia had not met B yet.  It was a full house without a doubt and one bathroom among 11 of us was a bit of a stretch but we made do.  Just think of the wonderful estrogen that my lovely husband had to endure!  I know this journey has been especially tough on them as well as they are my 'older' sisters who have made it their jobs to care for me, the youngest.  It's been incredibly difficult for me to ask for help this past year and it's been hard for them because they've not known how to help (not for lack of trying!).  I practiced the art of 'letting go' of my control issues while they were here, which is especially hard in your own house!  What we did have is the perfect party atmosphere with a stuffed house!



Nurse Smooches for B!



We welcomed friends and family to an Open House on the Sunday for a celebration of Mr.B and had a great turn-out.  Four of B's Nurses were able to come from Unit 2 and B loved being fawned over!  Thank you to those of you that joined us (and I know many more of you wished you were with us) and thank you for all the lovely gifts (that were not necessary but wonderfully kind).   And of course to my work 'crew', my Mom and Sisters (that had to put up with me!).

It was a very sad day on Monday when I had to say good-bye to the Sisters (Niece and Nephew) and I was pretty much a wreck driving home from the airport.  I miss these women more than I can convey and it was a weekend of rejuvenation for me!  One thing that we did all share though was germs!  Apparently when you mix a BC cold with an AB flu you get everyone involved sick! 



B's new NoseScruncher Face!



As I mentioned earlier we finally got into the seating clinic last week and got B's highchair custom fitted for him so he now really is a 'big' boy.  He's enjoying being up with us at dinner time and is learning to finger paint with strained prunes and applesauce (it's amazing how far it can travel!).  I've got my work cut out for me with trying to work around his oral aversion so that he can get comfortable swallowing some thickened liquids.  I am hoping that I'll look back on this time and think that it wasn't so hard! 

I got to meet with one of the Pediatricians for the Rotary Flames House and we've booked our first over night trip to stay with B for the end of the month.  Our intake was very easy and reassuring as well as impressive.  It is an incredible House and I am looking forward to getting to know the staff better.  I am extremely thankful for the opportunity to utilize their Respite if we can (and if I can get over the guilt of it) and I am looking forward to meeting with other families that have children with life-limiting illnesses.  They offer monthly group activities for the whole family so I am thrilled that the boys will all be involved.  I haven't told the big boys about the night away yet but I know that they will be excited.  It is expected that you stay with your child for at least the first time so I am anxious but excited as well.

  

I had an eye-opening appointment with the Stroke Clinic last week.  Dr. Mineko was the Neurologist that diagnosed Braeden's strokes back in the NICU and was very happy to see him looking so great (and so much less swollen) at a year old.  He's also been seizure-free for 10mths now so that is good news.  She reminded me that he's at a higher risk for seizures still due to the brain injury as well as the fact that there is a genetic component (syndrome).  I had blocked out of my mind that B's brain is also small in size and irregular.  He has all the correct parts, it is just irregular.  Funny how we can block things of such consequence out!  I guess part of the reason I blocked it out is because I don't want to ever think in limitations with this kid, I want to raise him as I did his brothers and stimulate the heck outta that little brain!  I asked Dr.M if he would ever present with a 'normal' sized brain and she said no, he has a 'Braeden Brain'. What this child has been through really makes you stop and think.

We got to be a part of the "World Premature Day" on Saturday at Foothills General Hospital where they held a 'Graduates' Tea for last years grads.  It was a really nice gesture, we unfortunately didn't get there till the end but still got to see some familiar faces and Mr.B got some snuggles.

Another sad thing was having to put my Mom on a plane after she came for an extended visit.  My workload has at least doubled again and to say it is hard to get back into a routine alone is a gross understatement. She was annoyed that I wasn't letting her do things but in reality she always does so much more than I could think to ask.  I certainly miss my kitchen elf that cleans the kitchen while I get the boys all into bed!  There are times when living a province away from our parents and siblings really sucks and the reality hits that I need a wife!

So the crummy part is that B is now struggling with his oxygen as he is also battling a virus of some sort.  We spent Monday at Emerge because Mr.B's just been 'off' for the past week.  He is fussy and not sleeping well at all.  I thought initially it was another UTI but that is somewhat normal but he does have some spots on both lungs which indicate infection.  The fact is that he is already on two different types of antibiotics one of which I was hoping would cover him off for the bronchitis that his brothers had including the ear infections that I had.  There is nothing to protect him from virus's though, we just get to work through those like everyone else at this time of year.  I am trying my darnedest to weather this one at home but his last hospital stay (when he ended up on the vent in the ICU due to the cold virus), is still very fresh in my mind.  I am watching him like a hawk and not sleeping myself as he wakes in the night screaming frequently.  He hasn't gotten any worse in the past 24 hrs so fingers crossed he is getting stronger.  We've had to triple his oxygen intake and lung meds and that seems to help somewhat.  It's going to be a long cold/flu season that's for sure!  I am still considering a bubble for him...

(and it took me only 7 hours to complete this post!)





My Life's Work!



Eyes Wide Open

Sometimes in life I love it when a Serendipitous Moment sneaks up on you and opens your eyes even wider.  I've had a LOT of these moments since B was born (actually starting near the end of my pregnancy, and by moments I mostly mean people who have entered my life in this journey that I have been SO blessed to meet) but today I was in a baking frenzy for Mr.B's Birthday Open House (Sun, Nov. 11th) and put on an old album that is one of my all time favourites, Natalie Merchant's "Tiger Lily" (it always reminds me of my friend Jen W who introduced me to the album and who I only get to see every few years).  I was happily in my baking mode when the song "Wonder" came on.  I was singing along to it as it is one of my favourites (who am I kidding I sing to the whole album!) and I burst into tears.  This song has always struck a chord with me and today I realized why, it was like it was written for a little soul like B...Mr.B the "Wonder" Boy (or girl in her song)! 

"Wonder"

Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story

They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

People see me
I'm a challenge to your balance
I'm over your heads
How I confound you and astound you
To know I must be one of the wonders
Of god's own creation
And as far as you can see you can offer me
No explanation

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way

It's been an emotional few days, counting down to Mr.B's FIRST BIRTHDAY (thought I'd just yell it again!!).  He's been home now since Weds but it's been a roller coaster because he started to cough not even 24 hrs after being home.  I am keeping a very close eye on him (ie: no sleep) to make sure it isn't progressing into anything else.  He's 'off' but not getting worse so I am just biding our time at home and crossing and re-crossing my fingers for a healthy week ahead.  I am also pretty sure he is finally cutting his first tooth (or who knows, he could cut 6 at once!) as he is stuffing anything and everything in his mouth.  For a kid with a strong oral aversion this is quite the feat to see!  The day we came home (Weds) B slept a whole 10 mins for the first 12 hrs he was SO excited to be home and be with his brothers.  It brings such tears to my eyes to see my children under one roof together and enjoying each other to the utmost.  They all have such love for one another, they are all such amazing and loving little souls.  I couldn't count how many times Ry said to me today, "it's just too much Mom, he's just toooo cute!" and "we have the sweetest baby don't we Mom?", not to mention fussy over who's turn it was to hold B on his lap.

I've also spent a good deal of time in the past few days reminiscing and re-living parts of the past year and it struck me the other day what it is about B that draws people to him.  Mr.B has his eyes wide open to his soul for anyone he meets, he will let anyone in and love anyone who happens his way.  People that get a chance to meet him don't easily forget him (I am told).  I went into the NICU after we were discharged last week to leave a note for the Staff to let them know about B's Open House and the Dr that happened to be on was Dr.Amin, the Neonatologist that saved B's life the first time.  Dr.Amin was so pleased to see him almost a year later and you could see that he was moved as B is one case that a lot of Dr's will remember I'm sure.  Going back into the NICU almost a year later feels so good, freeing in many ways (although it is firmly attached to the PICU so it's not like I've not spent some time close by!). 

Another interesting moment was at the Pediatrician's office the other day, there were two other Mom's there in the waiting room when I got there and one of them had an absolute peanut.  She was holding her 5lb baby girl over her heart and it took my breath away that B was smaller than that when he was born (didn't seem possible) and to see him now at a small but healthy 17 lbs.  The other Mom had a little girl as well that was just a bit older than B, walking everywhere.  Through our conversation (as only Mom's in a room will do I think) we realized that we all had our babies at 32 weeks and here we all were at different stages with different medical needs yet joined in this journey.  The Mom of the peanut was fragile and shaken still so new in her journey and she had tears in her eyes as she left, thanking us for sharing with her.  Now we didn't go into any major stories, it was just enough to see two other 32 weekers there and bigger, healthier (little ironic smile) and happy.  Right place, right time?  It isn't the first time I've met someone in that office at the same time as me that we've found a touch of kinship through our hardship, in fact Dr.Cassie (the wonderful) has even introduced me to other Mom's in her waiting room saying we should talk, that I could share and help her in her journey too.  Of course this was the same Paediatrician that when we saw her a week after T had been diagnosed with Autism sat with an open mouth as I told her what I had done in the week since seeing her.  I asked her if I was missing something (mid speech of telling her what I had researched and set up for T) and she just said she was wondering when I was going to be in denial!  Denial?  Everything I had read about Autism in that week had told me we needed early intervention, I had no time for denial!!!  I guess that conversation gave her the insight that I will move mountains for my children if need be. (I think I am getting off topic...)

We did get to have our interview with the Rotary Flames House for the Palliative Respite Care last week.  My Mom joined me for the interview and we were both impressed and moved.  It is a fantastic place, set up very much like Ronald MacDonald House but with the 'medical' side to it.  For those of you that have followed from the beginning you'll remember what an impression the RMH made on my whole family (T still asks when we get to go back).  I got a great vibe from the moment we walked in till the moment we left.  It is funny now when I think back to a few months ago when I all but feared that house as I drove by it every day going to see B.  I was terrified to think that we might have to be inside it one day and now I can't wait!  It is encouraged that you stay at least for the first night with your child when they are first attending and it is even more encouraged that we all go.  I love that and I love that the boys will know the House, the Staff and know where B is if and when we need to utilize the services.  As terrifying as this road is, there really are many wonderful side effects to it all.

What I've also discovered is that I still have so many people to properly thank and yet I hope that you all know who you are and how in debt I am to you.  I had the best of intentions of sending thank you cards and such to the Nurses from the Foothills Maternity (4th and 5th floor), the PostPartum, FMH NICU, Stollery NICU, ACH NICU, PICU, Unit 2 etc...it just never happened.  Please know for those of you keeping with the story that you touched my/our lives in ways that saying 'thank you' doesn't even cut it.  I know that a proper thank you would have gone a long way as you are never thanked enough for all that you do every day, for that I am sorry!  The same goes to all of you that have gifted us with your time, your shoulder, your patience and your presence (and presents)!  Those thank you cards may never get sent, but please know that doesn't mean I don't appreciate every one of you and everything you've done for us.

Many days and for so many reasons, my children leave me inspired, invigorated and encouraged...gotta go find my next mountain (before Braeden hand delivers it)!


Please join us in Celebration of B's First Year on Saturday at Canadian Blood Services (737-13th Ave) from 9-11am for our next Blood Drive AND on Sunday, Nov 11th at our house for a casual Open House from 1pm-5pm.  (Please send me an email for the address if you don't already have it)