Wednesday, April 28, 2010
Monday, April 26, 2010
Saturday, April 24, 2010
As of May 1st Matt's job position changes. He will only be working 3 evenings a week rather than the 50- 60 hours he has been working. We are very excited about this. We discussed it and we just feel like if we can afford to do it, we should. It will give us the opportunity to spend as much time as possible with Charlie and share in her care. We feel very fortunate that we are able to do this. We are looking forward to making some amazing memories with Charlie this summer. When we were at Canuck Place they were looking into getting her into the Baby Beluga swimming program, so we're just waiting to hear back about that. It would be great if both of us could join her for her classes, she absolutely loves water because she can move her arms and legs easier.
I have been having good and bad days lately. It's strange, sometimes I feel like I'm just being dramatic about everything that's going on, and then other times I realize that I'm not being dramatic enough. When we were at Canuck Place I went downstairs for dinner and Matt went to get Charlie from the nurses ward, when he walked in Charlie was in the arms of a nurse sitting in the family room with all the other children/clients who were very obviously sick...Matt said that it really hit him then about just how serious Charlie's condition really is. And when he told me what he saw, it hit me hard as well. Charlie's death constantly looms over us. When we discuss the future we find ourselves saying things like, "after Charlie" or "when Charlie, you know" or "if Charlie is still around." I still cringe when I hear someone who doesn't know what our situation is says, "You just wait till she's running around." It's not their fault, it's just the way I choose to hear things and process them, and it really depends on the day and my mood. Sometimes future talk doesn't faze me at all, other days it literally stops me in my tracks and leaves me devastated. I often just wish I had a timeline...but then again, i don't want a timeline at all...my thoughts and feelings are just so twisted and complex sometimes. It's like if someone could tell you when you were going to die, would you want to know so that you could try to do everything you could to die with no regrets, or would you not want to know so that the the looming fear of your impending death wouldn't steal the time you did have left? It's a tough one, and we struggle with it everyday. But she's worth it.
Wednesday, April 21, 2010
My little baby is just two months shy of a year old! Where did the time go? When she was on the inside it took FOREVER for ten months to pass, but now that she's on the outside, I blink and a month passes.
I can't help but think about when Charlie was first diagnosed back in January, we were told she probably only had a few months to live...it's been almost four months and she's still here, and still smiling! That being said, I'd sure love to be back on 'pregnancy time' and just slow time down, possibly even freeze it, so I could just absorb all things Charlie. But, I understand that whether we have Charlie two more months or two more years, it'll never be enough time.
We are nearing the end of our Canuck Place stay, and I have to say, although we were initially dreading our time here, it did a world of good. We feel comfortable here and all of the staff and volunteers genuinely love their jobs and want to be here to help Charlie and help us. I went out for a couple of hours on my own today and it was nice to know that a qualified nurse was watching Charlie and that she was well taken care of. Although, I still got that aching pain inside of me reminding me of my short time with Charlie which caused me to miss her and wonder why I even bother taking breaks...there will be plenty of time for breaks...later. I am starting to feel guilty when I am not with Charlie. I worry that I'll regret the breaks later, and the morbid side of me worries that she'll die when I'm out for lunch or while I'm dancing at a wedding which will lead me to self hatred and never forgiving myself. I think it's just best for all of us if I choose my Charlie free occasions carefully.
We've been learning to comfortably and confidently use Charlie's feeding tube more often. It's actually not that bad. I would still feel uncomfortable using it in public though...I feel like it would scare people or gross them out, or worse, judge and make assumptions about Charlie. I shouldn't care, but i do. But, it has to happen soon enough, so I better toughen up.
Something I've realized since all of this has transpired and from spending so much time in places like the Children's hospital and Canuck Place, is that if only everybody was able to spend some time with these special children, the world would be a better place. Seriously. I still have many days where I feel ripped off and jealous, but there is a whole other part of Matt and myself that no longer feels punished, instead we feel privileged and honored to have been given Charlie, SMA and all, and to be a part of all of these other amazing children's lives. Sounds cheesy, but it's true. Having had this experience has changed me so much. I have a new found appreciation for life, for parents of handicapped and/or ill children and their caregivers, and for the children themselves...what little troopers and with such amazing attitudes and happy dispositions! Where I once thought, "What did I do to deserve this?!" I now feel rewarded for good behaviour. I still think SMA is a cruel disease, but Charlie is so amazing despite it and because of it. Everyone needs a little Charlie in their lives. She elevates moods and changes people.
Monday, April 19, 2010
The other day when Matt took Charlie to see his Nana and I was left alone, I felt compelled to look up other families dealing with SMA. I found one family who's daughter passed away at 9 months...she seemed fine, her mom put her down for a nap and she died within 10 minutes. Besides getting me really upset, it got me thinking...here I've been worrying about Charlie's (and our) change of lifestyle...machines, g-tubes etc. but, we should be so lucky! What if we don't even get the chance to help her with her quality of life? I started to miss Charlie...and it got me thinking too...I began to try to picture myself in the future...I tried to really focus on what it felt like to miss Charlie and told myself this is what I'll feel like after she dies, except, because in the back of my head i knew she'd be home soon with Matt, I couldn't quite touch that feeling completely, but what i could touch, brought on anxiety and a big cry. Upset and emotional, I texted my best friend Anna with my thoughts. She told me, " that's what a big broken heart feels like, absolute shit." And, "that it will come in waves." She's right, it does.
We had a great visit with Matt's dad and step mom, they are lovely people and were so easy to be with. It was awesome to see Matt with his family because in almost 5 years together, I've only seen Matt with his dad once for 20 minutes. I feel like this visit has healed a lot of old wounds and has encouraged a lot of future growth between the four of us (five of us). I can give you a million reasons why Charlie's illness is awful and will negatively affect us for the rest of our lives...but, I can also give you more than a few reasons on how it will/has positively affected us for the rest of our lives.
Friday, April 16, 2010
I feel trapped...which is making me feel claustrophobic...which is making me feel extremely anxious. I hate knowing that no matter what we do, Charlie will still only get worse and worse until she dies. There is no hope and nothing to look forward to. Who even thought of SMA? It's such a cruel disease...a child/baby slowly becomes paralyzed until they eventually suffocate, the whole while being completely all there and aware. Just thinking about it I get the feeling that the walls are closing in on me.
Wednesday, April 14, 2010
Charlie's grandpa, Matt's dad Mike, and his wife Jenny are here from the UK...it's their first time meeting Charlie, and it's been many years since Matt has seen him as well. This situation has brought Matt and his dad closer together and it's really beautiful to see, and it's also really cool introducing Charlie to her grandpa for her first time and to see where she gets some of her good looks from...but of course, they're still mostly from me. I am looking forward to spending time with them and seeing Charlie bond with her gramps over the next week.
Yesterday our nurse Anita came to watch Charlie for a couple of hours, she comes every Tuesday and Friday now from 10-2 to form a relationship with Charlie. It gives me the opportunity to go to the gym, nap, or grocery shop. While she was here I decided it was probably time to go through the boxes of supplies that Fed Ex has brought us over the past couple of months but i had refused to investigate at the time. But now that Matt and I are taking the "one step ahead of SMA" approach, I've decided to take the blindfold off and pay attention. Anita explained what everything was and showed me how to use the foreign objects. One was a pump that I put on the side of the crib (if she actually slept in one) and it will slowly administer her formula into her g-tube throughout the night, with the general idea being less wake ups/more sleep for everyone. Anita also showed me how to feed Charlie through her gtube...we flushed water through it...I'm not gonna lie, I almost puked. Not so much because I thought it looked sickening, but more because I couldn't stop thinking about how it must feel on the inside for Charlie. Whoa...i just got shivers thinking about it. I asked Matt last night if he wanted me to show him how to flush it, but he's not quite ready yet, that and I think he wants a medical professional here until we get used to it. It'll take a little time to learn to trust ourselves and have faith in our ability to take care of Charlie medically, but it'll happen.
I noticed yesterday that Charlie grins from ear to ear when I sing the alphabet to her. It is so far the only thing I can do to steal her attention away from Sesame Street, and it makes me feel pretty damn spectacular for single handedly holding that key to her happiness...it's the little things.
I recently entered a little writing contest on how (in 500 words or less) 'creativity and motherhood intersect' in my life. This was my entry:
Somewhere in and around 15 years old, I began surrounding myself with creative types. My first love was a painter and musician, my second a musician, and my husband now, a musician and a writer. I didn’t have a creative bone in my body, but my desire to be creative was all encompassing. I’d hoped that if I rubbed elbows long enough with a poet, or a photographer, I would catch their beautiful and rare gift, but it just never happened…until I had my daughter.
After a fast and furious labor, Charlie-Anne was born on June 22nd 2009. She was gorgeous with a full head of red hair and big blue eyes that captivated people with their intensity and sparkle. Everything about her was absolutely, undeniably, perfect…until about 5 months old when my husband and I started noticing that her once advanced motor skills now seemed to be regressing. After a stay at the BC Children’s Hospital we were given the news no parent should ever have to hear, “Your daughter has a rare terminal disease called Spinal Muscular Atrophy …”. We were obviously devastated. We took Charlie home where we locked the door and cried for three days, forgetting anything other than the three of us existed.
From day one with Charlie she triggered something in me that made me want to live up to my full potential. She helped me uncover a self-esteem inside of me that I never knew I was missing but that I was more than happy to meet. She gave me a sense of purpose, she loved me and softened me up…where I once would shy away from hugs, I now seek them out. I cannot believe what a 6 pound 14 oz red head is capable of. She has changed my life in ways that I never could have imagined, healthy or not.
Because of all that Charlie is and all that she has given me, and the adversity that we are now facing, I have FINALLY, almost without realizing, discovered my creative side to not only help Charlie with her day to day living, but as an outlet for me to relieve some of the stress that her diagnosis brings. We have to be inventive with Charlie’s care, she is weak so we can’t give her regular toys, she plays with feathers, and balloons, and straws. I am always trying to think of new ways to arouse her senses…warm cloths on her skin, bare feet in the sand. I’ve even started a blog about our experiences and feelings in dealing with a child with a terminal illness; It’s become one of my favorite things to do when I get a little time to myself, it’s surprisingly cathartic.
We might only get to enjoy Charlie for a short time, but she’s an angel who has introduced me to parts of myself I’d never have met without her. Mama loves you Charlie, always and forever.
Monday, April 12, 2010
I've been having nightmares lately. I had one right before we went to Hawaii where I was sitting at a table with all my friends and family and it looked like the scene for The Last Supper, and Charlie was naked on the table and i was cutting her legs open to serve her at dinner and asking Matt to help me carve...very creepy, I know...I woke up terrified and told Matt, he looked at me horrified, I felt dirty and ashamed of myself that my mind was even capable of going there. When I woke up and thought about it I think I just felt guilty about possibly putting Charlie in danger to go to Hawaii, I felt selfish and like I was 'sacrificing' her...anyway, that's what I took from it. I had to take my first Ativan in a year and a half on Saturday night/Sunday morning (I used to get bad panic attacks). I shot up in bed panicking from a nightmare I'd been having...Charlie's legs were working in this one....she was running away from me...I was chasing her...it was a very dangerous environment, the edge of a cliff on one side, sharp side up nails and tools on the other...basically no place for a child to be running free, but I couldn't catch her...I jolted awake, trembling, and yelled for Matt (he'd passed out in the living room) he came running in confused, asked me what was going on, and tried to calm me down. I was FREAKING out, crying and my tongue started feeling like it was twitching and swelling, I started to panic...I asked Matt if he'd mind if I took an Ativan and slept on the couch, I needed a break and a good sleep, I did, and I woke up a little more sane. The lack of sleep and stress is finally catching up with me and it's taking it's toll.
I'm beginning to recognize in myself that I have great difficulty displaying my vulnerability (except on this blog for some reason, I think that's why i enjoy it so much). I'm afraid and embarrassed to really ask for support and help. I'm afraid no one will want to spend time with me if i don't pretend to have everything under control. I don't know how to tell someone what's going on with Charlie without finishing it up with a "But, you know what, it's OK, she's a great girl, and we're going to just focus on the positive and enjoy her while she's here." Because, for some reason I feel like if I wrap the outside of something so ugly up with some pretty paper, then maybe you'll stay in the room beside it a little longer, rather than running as fast as you can in the other direction.
I was telling my friends Lindsay and Susan recently that one of the main reasons I even do this blog is because I feel like if you join us on this journey as we go along, then I think Charlie will no doubt get under your skin and you won't be able to help but love her, and then maybe she wont just be the terminally ill handicapped kid you've heard about, and maybe I won't just be the sick kids mother and Matt won't just be her father... maybe people will be able to connect with us on a deeper level? Because I've heard of the parents with 'a handicapped kid' but I've never been 'connected' with them. I just feel like if I get it all out here, then maybe you'll get to know us better and maybe we can still be 'cool' or 'normal', you know?
Because I managed to get two days in a row of good sleep, I woke up today ready to make a hundred phone calls and REALLY get proactive in Charlie's treatment and care. She needs to get a special reclining car seat made for her, she needs to have a special diet set up for when we decide to feed her full-time through her g-tube, and I've talked to physio and occupational therapists to set up appointments regarding exercises and special apparatus' she'll need in the near future such as a 'cough assist' which we'll use to help her cough when she's struggling to do so on her own. So, all and all, a pretty productive day so far. And, luckily, it's GORGEOUS out, so I'm gonna get Charlie ready and take her for her daily stroll. (SEE...I seriously cannot help but end things on a positive note.) But really, it is gorgeous out. ;)
Saturday, April 10, 2010
(Charlie 9 1/2 months with her balloon AND with Vancouver Canuck, Tanner Glass!)
Charlie's g-tube surgery went well, even after several hours of fasting she went in smiling and came out smiling. It's really hard to pass your baby over to the doctors when she's so happy and has no idea what's coming, but actually, judging by the smile on her face when we went to the ICU to see her, I don't even think she realized what had just happened to her. Phew. Actually, I'm looking forward to learning how to use Charlie's g-tube, I was really worried that I'd feel uncomfortable or nauseated looking at it, but it turns out it doesn't bother her, or me, at all...just one more thing that makes Charlie special.
There was only one cot to sleep on, so Matt stayed at home last night. Charlie sleeps in the bed at home with us, so she wasn't having any of this mommy sleeps next to her in a separate bed BS...so, I ended up sleeping beside her in a 2ft by 4ft elevated crib, and honestly, it was the best sleep I've had since Hawaii. I think this past 2 1/2 weeks of waiting and worrying about Charlie's surgery really wreaked havoc on me emotionally and mentally...I have been functioning on about 3 or 4 broken hours of sleep a night. I've been missing appointments, arguing with Matt, not making it to the gym...just feeling depleted of all things good. But I hope that's over, for now.
This morning after Charlie fell asleep for her nap, I decided to take a walk around the hospital...I just needed a break from the ICU...every time I looked around our situation felt more and more real, that and I couldn't help but fall in love with the other children in the ICU with us. Both had tracheotomies...one was about 3 months and the other was about 2 years old. The 2 year old was in 'isolation' and was such a sweetheart, blowing kisses to all the nurses and telling them he loved them. It was obvious his situation was life threatening because the nurse had mentioned he had an Elmo DVD made special for him through the Make a Wish Foundation. They were gorgeous happy kids. How can these smiling, happy babies be dying?! I will never understand that. So unfair!
Moving along now...I stopped and had a yogurt at the Second Cup on my walk when I just felt like I was going to lose it...I called my friend Christie and started weeping about those poor babies, and the unfairness of it all...and once again, she listened to me and talked me down.
After I hung up the phone I dragged my feet into the gift shop, just killing time...I wasn't ready to go back yet and I knew Charlie was in good hands. A woman walked in and looked at me like she knew me and said, "How are you? How did your babies surgery go?" I knew I recognized her...was she a nurse? I've met so many people this past few months...that and the lack of sleep has mixed my names and faces memory up. She said, "I saw you yesterday, my daughter was getting surgery too." I then put it all together. We exchanged our husbands names, both Matt, and our babies ages, two weeks apart, and their illness'...her daughter had 3 cancerous tumours in her brain with a 50% survival rate, I told her about Charlie, I started bawling, she started bawling, and we hugged and held each other, rocking back and forth crying, for what seemed like forever. In that moment (and still) I felt like this stranger i had just met understood/understands me better than anyone else in the world right now. She said a few things that were/are my EXACT thoughts. We exchanged email address'. I've never felt more instantly connected to someone. Ever.
We're home with Charlie now. And it's beautiful out! A long walk is definitely the order of the day! Thank you to everyone who sent their positive energy and thoughts out to Charlie, it worked!
Monday, April 5, 2010
My whole point is that I lived 32 years before Charlie and never felt the responsibility towards anyone or anything that I do to her. I trained my whole life for this. She gives everything more meaning and me more purpose. And I just have no idea how I'm supposed to go backwards...giving back my meaning and purpose. I mean, my elbow is always going to reach for the car seat in the back, my hand for her head, and my heart is still going to stop for a second when I wonder where she is. Just when I have gotten confident in living my life for her, she'll be taken away from me. I can't help but obsess over those thoughts. I will forever be reminded of Charlie.
I realize that I should focus on the fact that she's here now and save the mourning for later. But I can't. I can't help but look at her and want to just protect her and save her and miss her. And I think it's because I know her illness is terminal, there isn't a chance she'll make a full (even partial) recovery...it's like pulling the band-aide off slowly. I'm afraid to lie to myself or enjoy the moment because I'm afraid of how I'll react to her passing if I haven't fully prepared myself...even though I have no idea how to do so.
I'm kind of in the frame of mind lately that I want as many people as possible to meet and spend time with Charlie, she's an extraordinary girl and I want to share her with everyone. If I didn't have to overly protect her from germs I would set up a cuddle booth on Robson Street for everyone to come and enjoy her, she's that amazing. Although it's never been my personality to be laid back or easy going, I never imagined myself being this kind of parent either, worrying incessantly about germs and avoiding other children because they're "little germ carriers". I imagined I'd set Charlie free at the kids birthday parties so she could share toys and saliva with the rest of them, but that just can't happen.
Charlie's surgery is in four days. Matt and I are really nervous about it. But she seems to be doing really well lately so we're hoping she comes out of it unscathed. If anyone is reading this, please send your positive thoughts her way. Thank-you.
Thursday, April 1, 2010
Heavy situation or not, I've never liked the night (funny, since I worked at a nightclub for years). I don't really know why, but I think it's because often it just feels like one more day in my life that slipped away from me when I wasn't paying attention. I get a creepy feeling in the pit of my stomach when I see news anchor, Lloyd Robertson come on the late news; anybody who knows me knows that I cover my ears, close my eyes, and change the channel ASAP if I catch a glimpse of Lloyd's overly powdered and rouged wrinkled face or hear his monotone robot voice. Aack! I feel sick and sad just thinking about it.
Matt just got Charlie down to sleep and now he's in his office working on music...he's been feeling really inspired and spends almost all of his free time doing it, it's one of the few things that makes him happy lately. Since we first met, Matt and I both learned that neither of us functions well under stress, I usually react to stress by giving up and going to bed and Matt has a temper and snaps at the little things when he's stressed. The good thing is that we are both aware of our faults and we are really working on them because snapping and sleeping just aren't options for us in this situation. And considering the fact that we really haven't even began to see the depth of Charlie's SMA yet, if we go snapping, sleeping or giving up now, what the hell happens when we're REALLY needing to pull strength out of ourselves. So, we are working on getting as mentally and physically fit as possible to fight off the evil we will be introduced to down the road, which we may be on our way to meeting next Friday when Charlie gets her g-tube surgery.
Charlie was fitted for some splints this past Wednesday. I had a choice of colour and picked hot pink for her. Does it make me insensitive or heartless if I say she looks cute in her splints? Only because they are hot pink and she wears them with a huge smile. Not much fazes that little angel. She seems to be in pretty good health lately, but there is a definite decline in what little head control she had left...you can tell she's becoming more and more paralyzed. Sometimes I look at her and I can see it in her eyes and it makes me feel claustrophobic for her. It's so painful to watch. So unbelievably painful. And i can't do anything about it.
It's this time of night when my brain races and files away the days memos and my anxiety sets in...the fear of the future, questioning my strength and sanity, worrying about Matt and wondering how he's really doing. Are we in denial right now? Do we really get what's going on? Are we using our imovies, pictures, music, and blogs as escapes? But, luckily before I have a chance to answer all of these questions, i fall asleep and wake up next to the most beautiful red headed princess who has the biggest smile on her face and is so happy to see me, and I forget what I was even worried about in the first place.