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...