Y'all are my therapy in a way...

I can't even begin to tell you how thankful & actually how shocked I am with the response from this post- "You want honesty? You got it...I'm so bloody jealous..." I'm not gonna lie, I was a tad bit nervous even publishing it because I felt I wrote it in such an emotional, deep-down-dark place...


But, you dear friends once again amaze me...All your thoughts/comments/emails/messages & more, in which you are either sharing your story & relating to what I am feeling {which brings huge validation to it all} or encouraging me in my journey, have once again brought me much needed strength...


I received over 300 messages of some sort in regards to this Post- And try as I might to respond to them all, please know if I haven't yet, I really truly appreciate you taking the time to share what you have with me...


I find writing this blog very "therapeutic", but getting emails from new Down syndrome parents in which they found some kind of hope or inspiration from the honesty of my words, is "healing" in a way I never knew possible...Hearing from a dad who's wife is having a hard time accepting their baby with Down syndrome & found the blog helpful...Or simply getting a message from anyone saying the blog made them smile...


The hope is that if Pip & my little family can bring someone/anyone a bit of happiness or peace or just simply to get them to look at life a wee bit differently, my mission with Happy Soul Project has been successful...And in turn it brings with it a "healing/help/therapy" of it's own to me...


So, thank you friends once again for actually reading my story & sharing yours...








P.S...PIP UPDATE:  A lot of you have asked how Reid is doing...Yesterday I tried to have a chill-out-pj-kinda-day...I pictured snuggin & long naps all day long...

Lovely in my head, impossible with a toddler & sick baby...Noal lately wants to constantly be around Pip- If I try to nap her in another room, he always wants to go in & check on her...Yesterday was no different...Needless to say, she didn't get much rest with him around...



Today, her little cough seems better, she is napping it up & she is full of smiles & I got to snug with her all day... 


One good thing about that bloody NG feeding tube was last time she had pneumonia the meds were simply put in that- This time around Pip wants to spit it out the moment it touches her mouth & makes the strangest little face...



So I think we're back on the up & up- All we need now is just a cataract to disappear...Impossible miracle I know but hey putting it out there...



You want honesty? You got it...I'm so bloody jealous...

I'm jealous...Very, very bloody jealous...There I said it...I've been feeling it for a long time but today was the tipping point & it's all coming out..This is a major "woe is me" {never knew before now how that was spelled out- interesting little fact!} post...So, if you want to stay happy & such I wouldn't recommend reading on...But for those on this journey with me...Here we go...

Reid had 3 appointments today- 3!!! Think of how annoying one appointment is & then picture yourself there ALL day with a baby, ninging {breastfeeding for all you new friends} in dingy waiting rooms & then finding out just brutal news...

Reid once again has pneumonia & as a bonus to end her 2 hour long eye appointment where they dilated her eyes, took the contact in & out numerous times to which I had to hold her screaming little body down, to be told that her "good" eye now has a small cataract as well...The surgeons will "monitor" it for now but end result will be surgery again...


So, I'm jealous...I'm jealous of all you mums that only have to deal with diaper rashes & coughs/colds...I'm jealous of you mums that get to sleep soundly because you aren't afraid your baby will be in heart failure or coughing with pneumonia...I'm jealous of you mums that get to plan your day around parks & get-to-gethers & not appointments or therapies...I'm jealous of you mums that don't have to worry about yet another surgery , the recovery & all that follows...I'm jealous of the "normalcy" you all have & the maternity leave you get to enjoy...



In reality when I stop crying, take a step back & take myself out of this pity party- I know that it's okay to be jealous of all that- Heck, I got to have all that with Noal...I know that every mum & every babe have a journey/challenge/story of their own- that everyone in their own sense deals with stuff...I also realize that anything big or small, whether it's heart surgery or your baby's first cold- Is a big deal to a mumma...I just so wish I was dealing with all that & not all this...


I feel so absolutely gutted again if I am being honest...Feels like Fate/God/Karma, whomever is playing this really twisted game- where He/She gives than takes over & over...Just when I thought all this was behind us, wham-slam-thank you Ma'am, it's all back again...The thought of another surgery & going through all that again is devastating...


But of course my Pip is utterly amazing...All smiles & giggles, happy as can be & teaching me yet again, another lesson in life...



Take each day as it comes & take it with a smile...Your such a Happy little Soul Pip...Sweet Jesus, I love you...


And you dear friends, enjoy your babies, hug them close, be thankful for whatever journey you are on with them...And if ya can send a little of that love our way...


I feel like I'm a member of a Down syndrome sorority...

Reid had her first appointment to talk about all her upcoming appts for Speech, OT & PT....{That's Occupational & Physiotherapy- I'm finding out there is a lot of short-form medical terms I soon will become very familiar with}...I thought after Pip's eye & heart surgery we'd have some breathing time to just be, but that doesn't seem to be the case...


I'm thankful that we are being pro-active & have the resources here to help in Reid's development, but the thought of more appointments is tiring all round...I really don't know how you working Down syndrome/Special Needs Mummas do it- Well done...


That all being said I am just realizing I have so very much to learn in regards to Down syndrome...As mentioned before with Pip's other health issues taking precedence, Down syndrome was just kind of in the background...


Now, however I feel like I am being faced with it & at certain moments I am not really sure what to do...


  • When I wrote "6 Thoughts for 6 Months as a Special Needs Mum", I had such amazing feedback/support...One reader, shared in her Down syndrome journey & taught me that I have a baby with special needs & Down syndrome, not a Downs or special needs baby...

"When we had our son, Ben, someone noted that Ben is a boy with Down syndrome (not a Down syndrome boy or Downs boy) and that children have special needs, but are not "special needs children". It seems like a subtle wording difference, but after someone called my attention to it, I can see that one way emphasizes the child, and the other the disability"... Jennifer Bailey...

    What I originally wrote in that post was Pip was a special     
    needs baby, and after reading & realizing the above I changed  
    it right away...I have so much to learn on proper terminology  
    & language, so thanks for teaching me!!!


.........................................


  • I can tell at certain times when strangers are cooing over Pip that they recognize that she is bit different & might want to ask but feel uncomfortable...I really don't know what I'm "suppose" to do at this point...Do I just bust out with it & tell them, do I gather Pip up & scurry away or do I, proud as a peacock, let her shine in her cuteness & let them ponder? I've peacocking it up but would love other Down syndrome Mumma's advice on this one...






.........................................
  • I feel like all of a sudden I'm in this Down syndrome sorority- like this special club- It's kinda like when you become a mum & you see another mum at a grocery store right tired, lugging around 2 kids & you smile at her in understanding...Take that times a million when one Down syndrome mumma meets another...At least that's what it feels like for me...
    
    Take today for example...I spotted a teenage girl with Down 
    syndrome with her mum & what looked like older brother...
    I was drawn to them & "pretended" to be looking at something, 
    just to be near them...They completely ignored me, as they 
    should have...

    What I really wanted to happen, was for that mum to look at 
    Pip & recognize I'm a Down syndrome mum too & come 
    chat me up, let me ask her a zillion questions & maybe even  
    throw in a hug...But, of course this didn't happen...


    However, what is the etiquette on this? Again, what is 
    "proper"? What is respectful? What is acceptable? When I see 
    someone with Down syndrome I'm obviously going to be 
    drawn to them now - that's inevitable... Is it okay for me to 
    approach them if it happened in an organic way? To share Pip 
    & our story with them? 


    I rationalize it in my head by thinking if I had a broken   
    limb with a cast on & saw someone else with the same 
    break/cast, I most definitely would start a convo based on    
    that similarity...But, again, I'm new at this- so I'd love 
    other Down syndrome parent's advice...Have at er  
    friends- What do you do?


.........................................

It's little things like this that I'm starting to struggle with...I guess it all comes with time & you my dear friends will learn it all with me...

If it's wrong it''s wrong, but it feels right to me...

Right from the beginning of this whole Blog Adventure, I knew I was limited in my knowledge of the technical & design side of things...I knew I could blabber on & on with words but to be honest I had trouble putting pictures on my computer from a camera...Now I don't use a camera, just a phone & my troubles include HTML, widgets, & codes...

Add a toddler that only naps for ONE hour if I'm lucky & a baby girl who still feeds every 3 hours, a house {laundry is pretty much what I'm trying to say here}, a hubs & everything else in life that fills up a day & it doesn't leave much time to sit & figure out blog-type stuff...



I have a few blogger friends who skipped all this headache & used different designers & such, but that wasn't an option for me...Things that probably take someone experienced 2 secs have taken me ages to figure out...Bloody hell...

I also realize that I've probably broken a bunch of "proper blog" rules like have only 2 different fonts or something- But really who gets to make up those rules anyways? The blog is a reflection of me right? So, this is it- my designs, my hard work & if it's wrong it's wrong but it feels right to me...


Enjoy!


6 Thoughts for 6 Months as a Special Needs Mum

Now I know I've only been a Mumma to a baby with special needs for 6 months & I don't have much to offer in terms of advice & all...In reality, Reid is just a baby & Down syndrome has really played second fiddle to her eye & heart surgery, heart failure, numerous hospital stays, feeding tubes & such...



To be completely honest, I really didn't even know if we'd get here -celebrating 6 months with Reid...The first few months of her life felt like it was constantly one thing after another in regards to her health...Some really scary moments happened, where now looking back Craig & I can say we thought we might have lost her but never voiced at the time...But, Sweet Jesus, here we are today & I feel in a way, in these 6 short months, I have earned my badge of honour as a Special Needs Mumma...


So, although I can't tell y'all what life as a mum of a child with special needs will be like later, this is what I know to be true now...




1- Different is more beautiful than you can imagine...


I've been quite open about sharing my thoughts about how devastated I was when we found out Reid had Down syndrome...I so wish the mum, person, woman I am today could have held the scared mum, gutted person & unintentionally ignorant woman I was that day...Yes, it's important to grieve what you thought your baby would be, but I wish I could see my life, my baby girl & all the beauty it's brought to that very sad hospital room 6 months ago.


~Seconds after Reid was born~



2- Love & Support will be life changing...


The vast amount of love that came from friends, communities, even strangers has changed how I view the world...It's changed how I will act or show kindness to someone else, how I will support those that need it & how I will truly love others from now on...




3- You are tougher than you even know...


I always thought of myself as quite a strong person- But these last 6 months pushed me to limits I didn't know I could do...It has changed my definition of what strength is & watching Reid overcome challenge after challenge brought a determination within me that nothing in my life has come close to...
~3 nights of no sleep, months of  an intense feeding schedule & hours before Reid's heart surgery~




4- With that strength comes a fierce Mumma-Bear-Protectiveness...


You will become an advocate for your child in ways you didn't have to with your other children...Not only medically speaking with Reid, but I now feel the need to advocate & bring awareness to Down syndrome & share our lives so others can see how amazing it all can be...

In one of Reid's hospital stays, I was sharing a room with another little girl with Down syndrome & her mother from Algeria...We got talking & I was stunned in sadness, when she told me that if they had stayed in Algeria her daughter would have had a very difficult life...That they had to flea to Canada to give her any opportunity to thrive and/or survive...Between that & learning that many Down syndrome children are given up for adoption or aborted, I feel that part of my purpose now in life is to advocate & show others that although our life is a wee bit different it's amazing & full & oh so bright...





5- Stop the worrying, Shut Up & just watch...


One of the things I "grieved" most when I found out Reid had Down syndrome was for my son, Noal- that he wouldn't have the typical sibling relationship & I was so very sad for him...

What wasted tears those were...Noal adores Reid, has such a strong protective presence in her little life so far & I know truly will be a sweeter little boy because of her...





6- You will believe in miracles...

Whether it's feeling like the whole world was thinking of your baby during a surgery or simply watching your baby with special needs hit a milestone...It will feel like a miracle...And you will in turn have a greater understanding of hope, gratefulness & want to thank God, Karma, Fate or Whomever- I promise you at some point you will be so grateful for something your child with special needs does...



So, there you have it...Although there most definitely have been challenges, gutted moments & a whole lot of heartache- The past 6 months has changed my life, shown me a new beautiful perspective on things & opened my eyes to things I never would have known else wise...




Wonder all what you will teach me in life Pip...Happy 6 months baby girl...



On a homemade roll over here...

Speaking of homemade gifts...Gotta say I'm loving up having kiddos now for that exact fact...No more buying cards & such- All homemade now- I mean who doesn't love a scribbled message from a toddler or painted feet on a mug...


Hopefully the hubs does cause that's exactly what he got...{And a toaster- yep I know I went all out this year} Let me tell you getting a 23 & 6 month old to co-operate was not easy...Our mug looked NOTHING like the Pinterest idea but I love it all the same...






Hope everyone had a lovely Dad's Day Weekend- Here's a look at ours...Full of the hub's family, good eats, outdoor walks, a lot of Ring-Around-the-Rosey & Sangria...Lovely... 










And maybe my favourite pic of Craig in awhile- There's something just so damn cute about him holding Pip... 




And can't let a Dad's day pass without a big ShoutOut to my Pops...Even though everyone on Facebook & such share beautiful pics of themselves & their dads on say their wedding day- I like the more real, what my dad is really like kinda pics...This is totally a typical pic of me & my dad every Christmas...Love you Dad-Miss you a lot...And, I hope you liked you're "Bopa" {what Noal calls him} video..





Happy Dad's Day Y'all....   

She makes the best prezzies...Honestly...

One of my closest friends Muls who made this lovely little "R" for Pip's room has always been the friend to bring out the crafty side in me {and alot of other sides!!!}



Her gifts throughout our friendship have always been some of my favourites in life...For our engagement prezzie she took one of my fav pics of Craig & I {one that I hadn't seen in years & was from the long lost time of printing pictures out so had no digital copy} & turn it into something special, for our wedding she forever imprinted "loving & learning" {only she will know what this means} and for my last birthday she made the absolute cutest most amazing prezzie yet...




How thoughtful, unique & special is this...She made me, Noal & Pip - Happy Soul Project shirts!!!! {Pics are from a week before Pip's heart surgery when Muls came to visit- Can't believe the difference in Pip then to now}


I absolutely adore them Muls...Big ShoutOut to you for always surprising me with the best presents...Love you for being so creative & special...


~Pip's Pretty Little Place~

As promised here are some pics of Pip with her new bling...Today I'm thinking it's cute, tomorrow I may not- So, we shall see how long these lovely little earrings last...For now, enjoy...















Taking these pics of her smiling & laughing in her little room, made me so happy...I absolutely adore her nursery - I nested hard over her little space, in a really short amount of time- Turbo nesting I like to call it...We moved across the province when I was 9 months prego, so all my planning for her was done in my head...And then I only had 2 weeks to put it all together before she decided to come early & shake up our world...


Thank God for Pinterest & such lovely ideas...Here's what inspired Pip's room...I guess I could count this as Pin Eighteen- Pip's Little Nursery Inspiration Board...
Visit: http://pinterest.com/happysoulproj/~pip~/ to see more ideas that inspired me


I made everything you see over her crib, picture me large, ready to pop & in charge, painting & glue gunning it up every night...Her room, especially this one little picture I made will forever hold great significance to me- 


"I walked into it a few days after getting home from the hospital & one of the paintings I had made above her crib read, "Life is beautiful because you are here"...This for some reason brought me to my knees...I cried harder than I ever have in my life...But it also was healing...I left the anger & hurt there in her room & truly got up from my knees feeling that my life, that Noal & Craig's life, that our family & friend's lives will all be brighter & more beautiful because of this special, unique, baby girl..."


That little sign "Life is beautiful because you are here" broke me out of my despair & will be a message Reid will walk hand in hand with her entire life. I will make sure of that...




Before I even had Noal, I knew that one thing I would always want in any of my kiddos room was a piece of art made from my dad...My entire life has been surrounded by my dad's creativity; cards, care packages, murals on my wall when I was a little girl, help making the best projects in school, etc...But, when my dad made this for Noal, I was blown away...It's so very special to me...


http://www.justinaphippen.com/

For Pip, I wanted something similar, so he made this absolutely adorable piece of art that fits in perfectly with the rest of her room...It really might be my favourite piece yet Dad...




I always knew if I had a girl my favourite colours; teals & greens would be a part of her space...With Pip's room I added purples, pinks & blues & couldn't be happier with how her room turned out...




And then little touches like her foot & hand prints painted on pictures or the little "R" a good friend made for her, all help to make this room feel so very special...







As much as I love her room, I have to be honest with y'all, she hasn't spent much time in there...Okay no time in there really...I co-slept with Noal till he was 9ish months old & loved every second- I don't regret it at all...Getting him to transition to a crib after was "challenging" to say the least but well worth those 9 months of snugs...


With Reid & all her extra issues, like looking for signs of heart failure the first 5 months of her life, there was no way in anything that she wasn't sleeping right beside me...




So, I'm back to having a little snug bug in bed but one day she'll adore her little nursery as much as I enjoyed creating it...