Guest Blog - From There to Here

My little girl is born. She is perfect, she is 8lbs. 8oz, and she is perfect. “You have a perfectly healthy baby girl, mazeltoff”. (Not a lot of folks in Red Deer say that I am so grateful for the way that hearing that made a mark on my memory). I hear her - is there anything more magical and surreal than hearing your baby's first cries? I see her - oh she looks so much like her big sister!

I just want to stay there for a minute longer – a minute longer where I believe that everything is going to be alright and I will have these gorgeous little healthy girls. I’m looking at her chubby little pink body in my mind’s eye and I just want to freeze, freeze, freeze.

Oh, I love being a mom the second time around… you just have a confidence that makes having a newborn so comfortable. The fact that you know this exhaustion beyond belief will pass and you will feel "somewhat" normal again makes it a little easier. I think everyday that this is one of the happiest times of my life - I feel so "Mother Goddess" beautiful and my husband is so sexy in his confidence and thoughtfulness. My oldest loves having a baby sister and never once shows any signs of jealousy! It's a magical time.

Rowan is sent home from hospital having lost over one pound (she was a c-section baby and we had been in there for a few days) but our family doctor knows that I know what I am doing and we probably just need to get home for my milk to come in. She gives me a prescription for motillium and boy oh boy does that do the trick!!! She gains a couple of ounces within a couple of days - enough to satisfy doctor and health nurse.

Now, looking back, we knew something was wrong because this wasn't our first time around…. she would cry and cry and cry…. not the gas pain cries we were familiar with…. not even the colicky cries we have heard with some poor unfortunate souls friends' babies…. this is different. She is insatiably hungry.. especially in the evening. I remember one night where I sat on our love seat for nearly 6 hours - only the occasional food, drink and pee breaks. When we ask the health nurse about this on the telephone she indicates that this is "sort-of" normal…. I get the impression that she thinks I am exaggerating!

And oh the poop! The stinky, fluorescent yellow poop! Our doctor says it's normal and assumes it's because I didn't nurse my first baby and I am not used to seeing breastfed poop… I am not sure when she says this but I don't push it - I want to believe what she is saying.

I remember the day - 3 weeks after she was born - that I really started to think that something was wrong is actually the day that our doctor's office called. Some markers for Cystic Fibrosis have appeared on Rowan's blood work from her heel test taken in hospital and I know - I know like I know the sun will rise tomorrow - my baby has Cystic Fibrosis.

Dark, dark, dark days….. I don't want to get out of bed, I don't want my husband to touch me, I am so scared to love this baby but of course I can't help it - I want to stop falling in love everyday but of course I can't help it…. oh I don't know if I can take my heart breaking like this - like that. Please I just want some mercy, Mercy, MERCY!!!

It's so hard to re-visit this time…. I really can't get through writing about it without crying so hard. Thankfully, day by day, we are coming back to our center… my husband and I are remembering why we fell in love, we are sharing our fears, we are laughing together (it will be nearly 2 years before we laugh like we did before). Day by day I am gaining strength to face this path we have been asked to walk, little by little I am starting to feel blessed beyond recognition and part of that gratitude comes from Rowan's diagnosis - learning to stare fear down and conquer it - learning to see the silver lining - learning that the curve balls of life are all about PERCEPTION.

What I have learned since Rowan's diagnosis is that it doesn't matter what your child is faced with… your heart and your soul don't know the difference between Cystic Fibrosis, or Down Syndrome, or Autism…. your heart and your soul know that your poor precious child is about to face a life that a smooch and a band-aid can't make go away… and there are days when your heart and your soul are not certain that you are up to the task of this. I write this knowing that anyone who is facing this mountain can relate.

The toughest thing for me still is seeing the change in my lifestyle – our lifestyle. Will I ever go to a playground again and not have my heart in my throat the whole time? Will I ever not want to tell people to back off, quit smoking, just leave her alone – and I know that’s not who we are – that’s not who I want Rowan to be…. I have spent so much of my life being scared and for the very first time I have a very real, very painful something to be scared of. Then, one night, nearly 2 years after her diagnosis I have an epiphany…

I felt a tremendous responsibility having a daughter when it was just my first daughter. I want to teach her empowerment and strength and courage and kindness. I know that uncertainty and insecurity will hold her back from time to time but I want to try my very best to not let it cripple her. Then, along comes Rowan and that level of responsibility sky rockets…. I want to fight to find a cure for CF - I want my girls to be able to have babies and not live with this…. But it's more than that… I want to teach Rowan that she is so much more than CF - I could have stayed in that dark little desperate cave but that would have been cruel to my children - waiting for someone to die to protect your heart is no way to live. If she dies and I had loved her just as hard as I wanted to it wouldn't hurt anymore than if I had laid down. That's the big life lesson isn't it? Life is going to hurt, it's going to stink sometimes - but living like there is a big proverbial axe just waiting to fall - that's ridiculous.

That's where I live most of the time now…. doing all that I can to find a cure, find a way to slow the progressive degenerative effects of this terrible disease. I love how this is strengthening our family, my marriage, how I see the impact this has on my 5 year old's confidence and sense of compassion… not everyone would decide this is the path they want to take and that's okay… we all do what we have to do to cope - to deal - to live… WE are going to live life BIGGER and BETTER with more GENEROSITY than we thought we had and more COMPASSION than we thought imaginable. When you share your INTENTIONS you set some pretty AMAZING things in motion… you just wait and see ;)

Kelly Tibbets blogs as mortgage mummi, and has recently has been elected President - Central Alberta Chapter Cystic Fibrosis Canada.

She is the brains behind the Wish Upon a Star Princess Ball February 25th.

Tickets will be on sale February 4th from 10-5pm at the Collicutt Centre.