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...







13 comments:

  1. Write your truth. There's something about putting it ALL out there- no matter how people respond- that is therapudic and totally freeing. What you're going through is more than most people will ever even be able to fathom. You have the absolute right to feel however you need to, and the right to write about it.

    Getting it out helps so much. And, though you said you don't need the encouragement (and I believe you, you seem pretty damn tough all on you own), you are strong, and you're doing a great job.

    Take care of yourself, too.

    ReplyDelete
  2. Muls9.3.13

    I love you T. Not going to try n build you up, when I don't have the words...or can even pretend to understand your reality... But, I love you and am here for you always...always xoxo

    ReplyDelete
  3. Marie Walters10.3.13

    Tara why shouldn't you feel down, ragged, exhausted and all the other feelings that come with having your dream crushed of having a healthy child. You have handled all of this with such grace and strength and not to mention determination to be the best Mom you could be under these horrific circumstances. You have endured pain that some people never experience in life time. As I followed what was happening with Reid and praying for God to heal her and give you and Craig the strenth to endure all of this, I couldn't comprehend going through it myself. You are a very strong lady who needs to cry, its ok to feel broken allow it you don't have to be strong all the time, tomarrow is a new day with new strength. Crying cleanses the emotions... do it often. Tara don't blame yourself... there is nothing you could have done different that would have changed the out come of Reid's condition. Don't be so hard on yourself I can't think of one person that would handle it better than you have. You do need some me time with some friends even for an hr. just to laugh and be with Big people and not think for 1 hr. I wish you all the best and always remember that you and Craig, Noal and Reid are in my thoughts and prayers because I know that is the only way you will get through these storms. There is usually a rainbow on the other side once the storm passes! Hold on Tara Marie Walters

    ReplyDelete
  4. Listening and praying for you. Remember to take care of yourself as best you can during these trying times. Lots of water and good foods and rest (ya right!). Take care.

    ReplyDelete
  5. do you know why you're going through all of this? because God or nature trusted you to do something very incredible. Not many people are that strong. There is no need to grieve. Look at your little girl and take strength from her and give it back to her. She is an amazing fighter and so are you. I don't think you know that yet. Your little girl will reveal all these things to you in all the things she has to endure. Just know you have been blessed in all these hurdles and breath. Hold onto your children and take comfort in them. You will get through all of this!

    ReplyDelete
  6. Erica T10.3.13

    everyone needs to feel like this Tara... you're 1 of the most positive people I know hang in there, so many people are praying and loving on your family right now<3 ... a good care for this is bachelor tomorrow night and then some bacon dip... and Taco Bell!!!! :)

    ReplyDelete
  7. Sandi Lesperance-Eansor10.3.13

    Tara - I only met you when you were a baby yourself - and I am not trying to pump you up or make you feel better - I can only say you were chosen to be Reid & Noel's mom because you were meant to be!! You are entitled to your down days and your up days and you will get through all of this the best way you know how!! All my love to your family and know that you have a huge support group behind you. xo

    ReplyDelete
  8. Oh girl, I've been there. Cry your tears, tell your truth, let it be. My son has DS, had an AVSD at birth, played the waiting game trying to beef him up but ultimately had to have surgery at 2 months, and then another surgery to put in a pacemaker 3 weeks later. The grief and the stress and the just...sadness of all that is happening that you have no control over is maddening. I think the only way to stay sane is to do things like this, pull back the curtain and pull the words out of your heart and put them on (virtual) paper. I always breath easier after I do.
    Our good news to share is that doctors are amazing and they can fix big holes in tiny hearts. Blessings to you and yours and your medical team. Praying for wisdom and packing on some pounds.

    ReplyDelete
  9. These are seriously not unreasonable feelings. This is hard stuff. And I totally understand grieving Ds and then being hit with medical stuff which puts all the other stuff on the back burner. With a baby, Ds is still kind of theoretical but heart failure surgeries and vision are real and are now! And that pic of her crying just about made me cry too. So go ahead and feel how you feel. It's where you are sometimes and seeing someone you love go through so much is stressful and hard. And it's hard on you. Totally OK. I am new to your blog and looking forward to checking out more about what's going on with your girl. Is she having heart surgery? I'm sure I'll discover more as I peruse your blog. But glad to have found you!

    ReplyDelete
  10. OK, man, just read your post more carefully and see that you're still waiting for heart surgery. That was the hardest time of my life. It at least tops out at the top 2. Feeding tubes, and appointments and heart failure. I feel you. Hoping you are on the other side soon. It is the worst wait in the world, but life on the other side is a totally different, totally amazing thing! Lots of hugs and good thoughts to your pretty girl!

    ReplyDelete
  11. Anonymous11.3.13

    My name is Jen... I am a first time commenter, long time follower. I have cried, with grief and joy, as I have followed your journey with beautiful Reid. Tara, you are such an amazing mom! We have a 6 year old son with DS and I have been where you are today. I remember waking up at CHEO and being surprised that all of my hair didn't fall out (during the night) from sheer worry. My husband and I put on our bravest faces and sang, rocked, snuggled and fretted. Those were some very long days and nights. We got through it all and I can't imagine (or wish for) life to be any other way. My only regret is that I wish I could go back in time and greet Ben and mother him during those early days with the knowledge that everything would be alright. Better than alright. We are so proud of our son and he leads a privileged life with many, many people who love him and are grateful to have him in their lives. As I read your blog, I am so impressed that you are making the most of every moment and feel honoured to have you among us, in the DS community. One day, your children will read your work and be amazed by your incredible strength and love. Thank you for your writing...

    ReplyDelete
  12. I feel you on this. I have been there many times myself. Hugs to you. Things will look brighter some days and darker others. it's just a part of this special needs motherhood gig. And it's OK to feel the dark days. Really feel them. And even stay there a while. Just know that there are many women who have meandered out of those dark days a stronger, more confident, happier mother than they ever dreamed possible. I speak from experience on that one. You are brave. You are strong. I applaud you for not being afraid to talk about your hard days.

    ReplyDelete
  13. Anonymous11.3.13

    You are a gifted person who is incredibly wealthy in ways that money cannot compare. I envy your strength, determination, love, passion and HONESTY. In a world of mothers who always seem so confident, capable, happy ~ all with a full face of makeup and a can of hairspray in their hair ~ its refreshing and uplifting to hear the honest side of a woman. I think of you and Reid often and hope that with each passing day a little more healing and certainty comes. My thoughts, prayers and support are with you and your beautiful family.
    Jen Dessureault

    ReplyDelete