Come on & give me a liking...Launching Happy Soul Project Facebook Page

As mentioned in the last post- I know I am over the top with pictures/videos of my hooligans...Trust me, Craig tells me all the time that I have a problem...Im constantly trying to capture all our little family moments...And I often look back at pics/videos of Noal when he was a baby & truly cant believe how quickly time has passed- I use to get kind of annoyed at my mum when Id ask her something about myself as a baby & she would say Tara, it was 30 years ago, I cant remember...So, big ShoutOut apology Mum- now I get it...I mean Noal was only born 20  mths ago & already I find it hard to remember him as a newborn...I guess with kids you're kind of forced to live in the now...But I desperately want to be able to remember all of these moments later in life...So, thats why I take & share all the pics/videos & in essence even created the blog...Its kind of their baby books in a way...Im not really into scrape booking like some- Even recording factual information, like their heights/weights or what month they first did things- Not really, my style- Im more interested in scrape booking their giggles, how they say mumma, what they did to make me laugh & pouring my heart out into their Letters...

Im rambling now, but the whole point of this post was to launch the Happy Soul Project Facebook Page...Now, I cant promise you that my personal Facebook wont have pics/videos of the kiddos- And if you like the new Happy Soul Project Facebook Page you may or may not be getting some of the same useless ramblings of my mind...But, on the Happy Soul Project Facebook Page youll find different things...I wanted a space to constantly update without annoying personal Facebook friends who really dont need or want to hear from me on a daily basis...
So, the Happy Soul Project Facebook Page will share something I am grateful for EVERYDAY...Back in the day when I use to keep a journal, I use to write one thing I was thankful/grateful for everyday...Somedays it was difficult to think of something, but I remember having a more grateful spirit when the habit of seeing how thankful I should be was made...Therefore, the Happy Soul Project Facebook Page will in essence be my journal sharing with you daily what I am thankful for...

So, today as I launch the Happy Soul Project Facebook Page,  my first big thanks is to YALL...Truly...The blog has now been seen by more than 50,000 people from all around the world...Im fascinated when I see someone from Russia, China or heck even the Isle of Man checking out the blog... Its absolutely humbling to know people are taking the time to read my thoughts...Also thank you anyone & everyone who has shared or linked the blog with others or commented & shared your thoughts...So appreciated...
Cant thank yall enough...Thanks for making Happy Soul Project soar...So, to come on & give me a liking click HERE....

Heres to flying my friends...






Letters to Noal: First Birthday...I know, I know I'm a tad late...

It feels like Reid has taken over the blog at times- All her health updates, our journey with Down syndrome & how we are all adapting to having two babies under two...

So, I feel like yall need a Noal update- Those that are Facebook friends, I apologize in advance because you constantly see photos/videos of him...But those friends that dont get bogged down daily with a Noal moment- here is a bit of what my busy little mouse is about these days...


Today he is officially 20 months old...Sweet Jesus, honestly where did those 20 months go...Im absolutely loving this stage- Although Noal is beyond busy & tends to have a tanti here & there, I love how everyday is a surprise...


What word or animal sound will he pick up today?




Wonder who taught him to do this?




How does he know how to dance like that?




Could he possibly love his dog anymore?




And could he seriously be any happier?



I LOVE discovering the world through his eyes..Everyday hes changing, making me laugh & continues to cuddle like its his job...He now places both hands on my face when he's kissing me & it just might be my favourite thing yet...


As much as he's turning into this little person, at night when it's just the two of us- he's still such a baby...He'd cuddle for hours if I let him & some nights I would like nothing more...Every night when my arm falls asleep from holding him so long or my mind wanders & thinks of all the stuff I have to get done once he's asleep- I stop myself, breath in his hair, kiss his chubby face, squeeze him tighter & think that these moments in life- this exact one, holding him as tight as I possible can are what matter more than anything...And these precious moments are going to be gone before I know it...

Ive been meaning to update Letters to Noal for ages but life has gotten in the way...I hand write letters to him all the time but haven't updated the blog & have also decided to only share a few moving forward in his life...So, in honour of my Bubba- Here is a letter I wrote him on his first birthday...Cant believe in a few months well be celebrating his second...









July 27th, 2011-

My 1 year old Monkey...

You are one today and I love you more than anything...I wish I could pause life and just stay in the perfect moment for ever... So, I will keep taking as many photos & videos as I can-trying to capture it all...Your dad makes fun of me for the amount of photos/videos I take of you..It is a bit much I admit but I can’t help myself...And one day my darling son, when you are bigger you will look back on all these photos/videos and smile and know how very loved you are...In all honesty I’m utterly obsessed with you...I can’t get enough of your chubby little smile, your infectious laugh or how you say “Mumma”...You are perfect in every way to me...


In one little year you have changed me in more ways than I ever thought possible...Not just in the learning to be a Mumma-kinda-way...I feel like you in a way have made me find myself- For so many years I just did my own thing- Moved to Switzerland- didn’t find who I was looking for in myself there- Then I looked in Australia, Paris, Dublin- I just kept exploring as much I could, not only to discover all I could of the world but also to discover who I was...I feel like in life I have always been pretty true to myself, but in ways I could never find in all my travels you have in one year put it all into the light...I feel like you are my purpose & somehow having you made me become who I was supposed to be all along..You have made my world so much sweeter, made my life so much more meaningful & I can’t believe the huge amount of love, pride & happiness I have for you in one short year...Watch out world- I’m going to be that over the top Mumma just right obsessed with her baby boy...

The biggest thing you have taught so far is to live with a thankful heart & happy soul...Everyday spent with you has been amazing {I’m desperately dreaded September when you have to go to daycare & I’m so thankful I’m prego again so that I’ll only be away from you for a few short months}...You my dear darling boy have truly shown me what’s important in life- You are the truest reminder everyday of what really matters...


You have brought so much happiness, love, and hope to our little family...Your dad & I absolutely adore you & we are certain that you are going to do something very special and wonderful in this world...Your happy soul alone brings everyone who meets you a smile...You’re funny, so sweet, soo cuddly and so adventurous...


So, although this year has gone by faster than I ever imagine- I’m trying to live in the present and not think too far ahead...I’m trying to enjoy the now with you...Son, I love the now more than any other time in my life.

Here’s to you my darling Noal, today and tomorrow...
Happy 1st Birthday My love...

Love Mum







         

Who I am...Reid Layne's first World Down Syndrome Day

Today marks World Down Syndrome Day-it's on 3/21 to symbolize a third copy of the 21st chromosome in people with Down syndrome...

It's a Day to bring awareness to something that I ignorantly didnt have a clue about till Reid was born...Since finding out my baby girl had Down Syndrome, my ignorance in not knowing much has turned to curiosity- I now want to learn as much as I can about Down Syndrome, books, websites, support groups & other bloggers who have walked the walk have all helped enormously.

Its amazing all the resources out there & I am so grateful to be part of a community at Down Syndrome Blogs & The International Alliance of Writers for Down Syndrome: The T21 Alliance...What I am learning through other bloggers who share their stories is inspiring, helpful & so encouraging...So BIG ShoutOut to all bloggers who have shared- You have helped more than you'll ever know...

I still have so very much to learn...But, little things like Reid doesnt have Downs she has Down Syndrome- well even more specific, she has Down syndrome- syndrome isn't capitalized like I thought it was...Things like learning the proper language is all new to me...But, thankfully the Canadian Down Syndrome Society has resources like this.




Guiding Principles
·        Use people-first language that describes who a person IS, not what a person HAS
·        Avoid demeaning phrases such as suffers from or afflicted with Down syndrome
·        Avoid outdated and derogatory terms such as retarded, handicapped, and challenged
·        Down syndrome is not a disease. Do not refer to it as such.
·        Avoid using stereotypes when referring to people with Down syndrome, e.g., “people with Down syndrome are always happy”
·        Do not mention that a person lives with Down syndrome unless it is relevant to the conversation


Talking about Down syndrome

Not Acceptable

Acceptable

Background

Down’s, Down’s syndrome

Down syndrome

Although John Langdon Down classified Down syndrome, he did not have Down syndrome, and therefore it is not possessive as in Down’s

Down’s kids, Down syndrome person

A person with Down syndrome

A person should not be defined by their disability. The emphasis should be placed on the person.

Suffering from or afflicted with Down syndrome

Living with Down syndrome (if relevant to the conversation)

Words like suffering and afflicted with are demeaning. People who live with Down syndrome lead fulfilling lives; many people with Down syndrome attend college or university , work and get married

Anyways, being as this is Reids first World Down Syndrome Day I thought our little family should do something...Im sure as the years go on we will get more involved but well start things off slowly...Everyone is wearing blue/yellow & we are participating in a walk/run with our local Down Syndrome Chapter on the weekend...




And in honour of The International Down Syndrome Coalitions Theme, Who I am- Here is Who Reid Layne is...


 
Love you baby girl & excited to discover just who you are...

In honour of this day & to bring awareness I have updated our Trisomy 21 page...Always open to thoughts- So, if something inspired you, please share...
Happy World Down Syndrome Day Yall...

         




You know you're good friends when....

You know you're good friends when your ning nings are out all weekend & y'all don't even notice...This weekend I had my girls Hendo & Donna come for a visit & it's just what I needed...Chats, good food, help with the kiddos & lots & lots of laughs...They got to see Old Betsy in full swing & it was nice to have other mums validate that the whole feeding/pumping process was insanity...It's one thing to have the hubs say he understands but since he truly has no physical clue, it somehow helped hearing other mums recognize how demanding it has been... 

And its brought some good news...Pip has gained a wee bit of weight which the docs were pleased with...


So, having my girls here really was just what I needed- They completely spoiled me too- Tons of chats & listening to what it's been like with Reid...Taking care of busy boy Noal & even throwing me a surprise Paddy's Day party to celebrate my fav holiday...


It's amazing the efficiency of 3 mums...We went shopping two days in a row & it was an effortless process with 3 mums- One grabs the stroller & purses, one grabs Noal & one grabs the baby...It got us thinking would life as a parent with 2 woman be that much more efficient? Would 2 gals just work to the capacity of 2 mothers? And if so imagine all that could get done?


I have no plans soon, to trade in my hubs for another lady- But, Sweet Jesus, for the weekend it was nice to have another set of Mum hands on deck...

I love you two & miss you both already...Thanks for the amazing weekend friends...






Call me Old Betsy...

As mentioned before Reid is on an intense feeding schedule...Every 2-3 hours {depends on time of day} she is fed a bottle of breast milk...The purpose of feeding her through a bottle is to allow the docs/I to measure exactly how many calories she is consuming- What she doesnt take through the bottle, I then have to feed through her tube...She is also on demand or after bottle feeds, nursing...This post is going to go there- so any males or woman who arent familiar with breastfeeding- I apologize in advance...Those, however that wish to go there with me, here goes...

So Im no stranger to breastfeeding, heck I only really had 4 weeks off from one babe to the next...These beauties have been in full swing since Noal was born in all reality...And as you can tell from these pictures, I had a bloody creamery going- Big boy had more than enough...


He was exclusively breastfed till he was 7 months, then food was involved, pizza was his 4th word & favourite thing & he finally stopped "ninging" at 15 months...Just in time for his little sister to be born- The thing is with Noal, I nursed him on demand & it was SO easy...I had absolutely no issues-I have friends who had real nursing nightmares...infections, sore nips, not enough milk, etc...I totally took for granted having an effortless go with it...

With Reid I thought it would be the same...The nurses/docs tried to tell me that because she has Down Syndrome, she might have difficulties- Low muscle tone stuff & harder for her to latch kinda thing...Knowing that off the hop, I was determined to show how "advanced" she's going to be in life & prove to them & myself that her motto in life is "she's got this"...And she did, she latched right away, I had a ton of supply & things were going grand...But, then add Reids bloody heart complications & our new feeding routine & I am officially a milking cow...She's either ninging off me or a pump is going every 2 hours...It's definately not the nice, effortless nursing I experienced with Noal but it's what is best for Pip so I'm mooing away...

I have some friends who chose to feed their babes this way...Pump & feed- Love you gals but youre insane- Its soooo much work...The time pumping, all the bottles, cleaning the bottles, cleaning the pump & two hours later doing it all again...Hats off to ya, if you choose this route or formula feeding but for me I wish I could stick to the good old ning nings...







Operation Ellen: We need a bit of hope these days....

Because everything has been so emotional lately on the blog- Thought Id mix it up with an Operation Ellen Video...Should have posted this one before our little miracle was snatched away but either way hoping to get her attention one of these days...



Enjoy me once again making a fool of myself...Come on Ellen- We need a bit of hope these days...     







No judging: I 'm in a funky, pity me, gutted kind of mood...

I know the purpose of the blog, of my life really, is to have a Happy Soul & a grateful spirit... I try, trust me I do... And as mentioned from the beginning, I am all about being completely open & honest in life & with what I share on my blog...As open as I have been, I feel like what I have shared has come across for the most part hopeful & positive & most days that is the case...But, if I am to share it all I feel like y’all need to know & understand just how utterly devastated I am at some points in this journey... So, try as I might to stay positive some days the funk takes over & I'm just not in the mind set I should be...


Last night I messaged a few of my gals trying to explain how utterly gutted I am feeling... I think it's been building up for a while... There obviously have been days, since Reid was born, where I cried & felt overwhelmed with it all- But, there almost in a sense, hasn’t been time to truly grieve all that has happened because it’s a go-go-go kind of life we have... Just when I started to grieve Reid having Down Syndrome, we were told she was blind in one eye & would need surgery as soon as possible- that then kind of took priority & pushed any thoughts regarding Down Syndrome away for a bit...Then, the hole in her heart & basking in the hope of a miracle, only to be shattered weeks later finding out she was in heart failure...It’s as if I try to grieve one thing but something else comes up & I just set aside or move on with it...I mean I kind of have to but it really would be nice to have a minute here & just deal with this & nothing else...


So, all that being said, I think I just tried so hard to stay strong in the hospital...There were hours where all I did was hold her & silent tears slowly would fall as I begged God/Fate/Whomever just to keep her alive...
 
 
Yesterday, however it was like all of my grief for Reid came pouring out & I didn’t know how to control it...It started with bringing Noal to Reid's doctor appointments with her Pediatrician & Heart Specialist...Lugging that 30 pounder, a diaper bag & Reid/carseat in a downtown parking garage & through a hospital is a nightmare in itself.... Add Reid crying out in pain as they changed her feeding tube, while I tried to rub her little face & hold Noal who freaked out to the high heavens that someone was hurting his sister... Good bloody times...

 
Then on top of that, to hear that she hasn't gained any weight... We've been at this intense feeding cycle for more than 2 weeks now & nothing...She’s eating more than she ever has but is still using all her energy/calories just to stay alive- She has more energy now but in turn is using more as well...Bloody catch 22...I'm completely gutted & soooo discouraged...
 

After putting Noal to bed I then told Craig I was going to Walmart mostly to have a minute to myself & that really was my intent...Instead I ended up bawling as soon as I started the car & cried like I haven’t cried in a shady parking lot...I'm feeling so beyond down about everything right now...I wish I could help her but I obviously can't...When I'm in this kind of “pity me” mood absurd things go through my little mind... Now, I’m just writing this to share my dark thoughts not so that you have to tell me I'm ridiculous in my thinking...I know I am but sometimes I go there...I have this enormous guilt associated with Reid... At first it was did I do something that caused that extra chromosome...Now I think back and pick apart my pregnancy & when I'm really low like yesterday, I think did I do something to cause her eyes & heart to be like this...Did I pick up dryer lint when those annoying prego books tell you not to? Did I eat too many hotdogs knowing I shouldn’t have but craving them more than anything else? Did I sleep on one side & cause things not to form properly? I know when I come out of this funk that it's not the case & that a lot of children with Down Syndrome have these issues... It's just in that moment when the weight of the world regarding Reid feels like it's on my shoulders I go there- I let my mind wander to that dark place...I feel like I am trying so bloody hard & try as I might, it isn’t fixing her... I somewhat feel like a failure, like I did this to her... That I created her like this and now I can't even fix her...

 
Harsh I know but the honest truth...And that to me is what this blog, my life is about... It's not all happy, nor grateful... Right now it feels like it's so clouded with fear, guilt, pity, & jealousy.... I'm having a lot of why me’s lately...Why my little family... Just when we finally wrapped our heads around the Down Syndrome side of things & overcame the eye surgery...Why all this now? Why does my daughter have to be the one? Why do I have to watch her struggle & go through so damn much in 2 short months with much more to come? Why do I get jealous of friends & the simplicity of their “typical” children & the pictures they post of their “healthy” babies? Why do I have to see the look of confusion in Noal’s eyes as he watches his little sister in so much pain? Why do I have to hear the fear in Craig’s voice every time I call him after one of Reid’s appointments? Why do I have to feel like I failed my baby girl? Why do I have to see this beautiful baby girl cry & pout like this?

 
Will all that ever go away? I hope so... But as I wade through these unreasonable feelings, bear with me friends... I don't write this post to get encouragement, for you to tell me what I'm feeling is normal or to boost me up & tell me how strong I am... It's amazing how much y'all do that & what it truly has done for me...This post is more just to lay out a dark day & to allow you to see or feel a bit of what I'm going through....
 
At this point I don't even know what I want to happen- Just to get on with the heart surgery so that I can stop worrying every second, over every little thing, noise, movement she does or if I want them to give me more time to beef her up so that she's as healthy as can be for the surgery...Either way at this point every day I just try to soak up as much of Reid as I can...
 
 
Thanks for listening...I guess that is really what this is...