Friday, February 26, 2010

For Charlie. Love mommy and daddy.

video

A video of Charlie for Charlie and my friends and family. It might make you emotional, but it will also show you why we've fallen so madly in love with her. (my first imovie)

Wednesday, February 24, 2010

Changes

(Charlie 4 1/2 months. Photo by Cindy Penner)












So, after my first post I thought, "well, there must be smoke or something in my eye." I was folding clothes in the bedroom and Charlie was laying in her crib, (which we use for amusement purposes only) staring at her mobile, when I just stopped what I was doing and stared at her gorgeous smiling face and became overwhelmed with sadness and anger, and started bawling my eyes out. Matt came into the bedroom and gave me a hug and the tears were cut short when Charlie looked up at us, happy as could be, making her pterodactyl noises. When the same thing happened the next day after writing my blog post, I wondered if this blog thing was a bad idea...how can something that makes me cry after doing it, be any good for me?


Up until recently, besides the first week after finding out that Charlie had SMA, I have barely cried. And honestly, I would sometimes feel guilty about it. I've been out with friends talking matter of fact about the situation, when all of a sudden, they would just start crying ...and I wasn't...I'm LIVING it, and I'm not crying, I'd think....what's wrong with me? Did I lose my heart somewhere along the way? But, I think in these situations, your body just goes into auto pilot and takes care of you. Charlie is still here, I will have plenty of time to feel horrible...later.
I've been told, "you're handling this really well." And honestly, I agree. I'm shocked at how well I'm dealing with everything, but at the same time, I don't really see any alternative. I have been told that I have a very short time to spend with the love of my life...I'm not wasting one second of it!


I think it's been a little "extra" difficult this week because twice this week we've had Fed Ex show up, a little unexpectedly, with packages of supplies for Charlie. Up until this point Charlie has been feeding well, but when we get home from Hawaii she has surgery booked to put her feeding tube in. Scary. And when I opened the boxes it was all I.V. bags and large syringes , and some weird machine. Maybe that's another reason I don't cry that often...because this is as good as it's going to get, I might as well be enjoying my time while its machine, syringe, I.V. and breathing apparatus free. We feel very fortunate to be able to go on our first vacation with Charlie without a feeding tube or any other contraptions. We just want this vacation and it's memories to be as "normal" as possible.


Before finding out what was going on with Charlie, I was home alone (with Charlie) snuggled up on the couch while Matt was at work, and decided to watch, "My Sister's Keeper" about a little girl dying of cancer, BIG mistake! I was BAWLING my eyes out, texting Matt, saying, "OMG, nothing better ever happen to Charlie, I couldn't handle it!" He was texting back, "Oh Cher, don't think about those things!" And what's crazy is that I didn't respond to the real thing the way I thought I would. I had actually "planned" on feeling worse if I was ever in that situation, than I actually feel and I AM in that situation. Weird. You really can't plan for these types of situations, you never know how you'll react and what you'll pull out of you...that's what I've learned, so far.
Even though writing this blog brings out emotions, I think it's really cathartic for me...and Matt. He reads the posts and we talk about it after and we support each other if we get upset or emotional about it. Actually, the crying has relieved me of the guilt I was feeling about not crying enough. And sometimes a good cry just makes me feel so much better.



Tuesday, February 23, 2010

The little things.

(Charlie, 4 months old)












Yesterday was Charlie's 8 month birthday. We've decided to celebrate every month since our time with her is short. We celebrated at The Keg, (daddy's choice of course, just milk and atmosphere for Charlie). We've never had any problem taking Charlie to restaurants, she loves looking around and smiling at anything that moves. She especially loves loud places like Subeez and The Keg where the music is blaring, she has a mini dvd player and she just watches Baby Einstein and scopes the place out. We can actually have long lingering dinners, which is usually unheard of with babies...I can count the number of times I've actually had to have a cold meal, on one hand. We feel lucky.


That's something I often wonder/worry about...could I handle a "normal" child? I mean, sometimes I feel that I don't deserve the same props that my friends with "normal" babies do. I've never had to worry about Charlie rolling off the bed, crawling out of the room, not being physically stimulated enough...I never even really had to introduce solids to her. This is all I really know in a baby, it'll be a whole different experience next time around. Honestly, Matt and I often forget that Charlie is different, it's just kind of like she never grew out of the newborn stage...we only recognize the differences when we spend time with friends who have children around the same age...that's when it really sinks in.


It's strange, i'll be handling this really well, just going about my day, when something will just remind me that Charlie won't be here long. Like, there is no talk of the future. Parents talk about the future ALL the time, it's what they/we do "he's just like his father...when he grows up..." or "have you thought about which daycare he will go to?" Or, "she's so beautiful, you're gonna have to keep the boys away". We don't get to follow the milestones...crawling, sitting, walking...instead of progression its regression. I read a quote on a grief website that said, "When you lose a parent, you lose your past...when you lose a child, you lose your future." So true. BUT, I don't feel like this on a regular basis...I just have my moments. Charlie is way to smiley and happy for me to spend my time missing her before she's even gone.


The good news we've received as of lately is that, if Charlie can avoid getting a cold this winter, she could be here until she's 2. Actually, that's GREAT news...especially when we were initially told that she only had a few months to live. We have been making sure to avoid people with colds and we have cracked hands and knuckles from staying heavily sanitized at all times...we are doing whatever it takes. One thing I've noticed through all of this is how many strangers reach into strollers and touch babies faces or hands...I actually think I used to do it too...and it's SO rude. I'm still trying to figure out how I can quickly and nicely say "screw off, don't touch my kid!" before it's too late and they have their germy hands all over her. Suggestions?


We have recently been given the green light from our pediatrician to take Charlie away on her first vacation. We are going to Hawaii for two weeks on March 6th...sooooo excited! Matt's boss bought us our tickets and a friend has lent us their condo...that's another thing about this situation...my faith in human kind has been restored! People have been amazing! Our friends have been so awesome and supportive! They've visited often, made us food, brought us plants and pj's and magazines to the hospital, and toys for Charlie, etc. We are TOTALLY overwhelmed with everyones kindness! Thank you friends!!















Monday, February 22, 2010

Happy Girl!





Happy 8 month birthday Charlie-Anne!





















On January 8th 2010, after a few days in the Children's Hospital, Charlie was diagnosed with Spinal Muscular Atrophy Type 1, a terminal illness affecting her muscles that would soon leave her paralyzed and unable to feed on her own...and then pass away, within what we were told at the time, a few months. We were completely devastated.


Up until this diagnosis, besides some declining head control and posture issues, We felt so incredibly lucky to have Charlie, who was (is) the perfect baby. Charlie is very alert and intelligent and so unbelievably happy and smiley...she is ALWAYS smiling.


I can honestly say that I knew from day 1 that Charlie was special...I know, I know, all parents feel that way about their own children...but I swear, I really did know that their was something extraordinary about Charlie, and something inside of me had always believed that she was just too good to be true. I mean she was smiling constantly from day one, she had/has such a gentle cry, she's always been very aware and engaged and she slept well...besides some breastfeeding issues in the beginning, everything was absolutely perfect! She was even actually ADVANCED in her gross motor skills until about 5 months, that's when we began to notice the decline in her head control and lack of muscle development and strength in her legs.


We put off taking Charlie to the doctor for about 6 weeks. We second guessed what we were seeing and, because she is our first/only child we thought it was normal...that and she was just so happy...how could a baby so visibly happy be sick or dying? We still have a hard time computing that one.


On Wednesday, January 6th 2010, our pediatrician came to Charlie's hospital room to explain to us what the neurologists and himself were pretty positive Charlie had, SMA type 1...we would get the full blood test results the following Friday.
I had started to get irritated with some of the doctors the day before and began demanding more tests and explanations...never for ONE second, thinking it would be something so awful. I hadn't slept for three days and was googling non-stop trying to self diagnose Charlie, and was pretty positive it was botulism...but it wasn't.


What a completely surreal experience it is to be told your baby is dying. I just kept saying "No, I can't handle this, not me" over and over. Just in complete shock. Matt wanted to talk about it, figure out medical options and statistics, I just wanted to take Charlie home.
When we got home we just cried and cried and cried, for three days. I actually felt afraid of Charlie...I wouldn't let Matt leave me alone with her. But, all of a sudden, after three days, something just clicked in Matt and I...how do we just mope around our house about our dying daughter when she is just hanging out watching Sesame Street and Baby Einstein, grinning from ear to ear?


Sunday, February 21, 2010

My first post.



On Monday June 22nd, after a very fast and furious labour, our teeny tiny 6lb 14oz , already smiling, Charlie-Anne was born. She had a full head of red hair (I was shocked!) and looked just like her daddy.




What an amazing feeling it is to go from being 2 people to 3 with the new titles of "mom and dad and daughter". For the next few months I was actually a little jealous of the women I knew who were still pregnant and were approaching their due dates, because they would soon get to experience the most amazing, life changing event ever, and know what I knew...I wanted to keep it all to myself a little longer...but at the same time, I was so happy to have shared a similar experience with them so that we could talk about it non-stop.