Monday, May 31, 2010

Endless Love.

(Charlie and mommy, 11 months)















I've been going out a lot lately, with and without Charlie (when without, she's home with Matt). Keeping busy and surrounded with friends is how I've always dealt with stress. I don't necessarily think it's wrong or that I'm running away from my problems but it's just something I've taken note of lately. I've recently formed more close relationships with people who I've had more casual, aquaintence type relationships with in the past (before Charlie was diagnosed with SMA). I don't really care what circumstances brought us closer together, I'm just grateful to be supported by such a great group of people.

Matt and I often talk about what our plans are after Charlie passes away (just writing that I feel guilty). We just want to have a plan so we're not caught off guard and wondering what the hell to do with ourselves. We're pretty sure we will either sublet or sell our place and take off to Hawaii or anywhere not here for at least 6 months. We half joke that we'll bury our feet in the sand and drink "Leaving Las Vegas style" to numb the pain and erase our memories...but, I think we're smarter and stronger than that, it's just a dirty thought we toss around.

I love Charlie SO much. Like SO much. SO, SO, much. And lately when I look at her and I say to myself, "Oh my god, I love you so effing much" which I say to myself, and out loud, at least 20 times a day, I immediately think after, "Is there any way I can disconnect just a little at a time from her so I can try to save my heart just a little?" So far the answer is, NO...a big fat NO! I crave her. When I sleep without her (which is rarely) I long for her... to smoosh her all up and draw her little bum towards my tummy all snug, I NEED that, it's the absolute best feeling in the world. Because she has very limited mobility and isn't a wiggle wart, she is the best baby to hold close and snuggle up with.

We're so used to Charlie's g-tube now , it's just like nothing out of the ordinary for us. A couple of weeks ago my friend Lindsay and her new baby girl June were here and when I helped Linds change her diaper I noticed I was being super cautious to avoid her 'g-tube area'. When I later mentioned this to Matt he said, "Hey, I did that too when I was holding Cohen! (our friend Lori's son)" And I've actually even tried to avoid my own g-tube once when changing my shirt too! I'm not even kidding! Seriously! It's just second nature now, we just subconsciously assume all babies have one. We try to just take things one day at a time now instead of fearing the changes, because I never would have thought we'd be comfortable feeding Charlie through a device that's inserted into her tummy, but we've shocked ourselves, and have realized we're capable of so much more than we think we are. I like watching Matt feed Charlie like it ain't no big thing. It's really beautiful to see.

Matt and I have been doing well with our 'Biggest Loser challenge' we've both lost some weight and are going to the gym regularly. It's nice to have created a healthy habit together. Since having Charlie, even before her diagnosis, my interests have changed. I have a strong desire to be healthy and to learn how to cook well (I'm actually getting pretty good!) and now, my newest desire is to learn how to sew...I just bought a machine last week. I would love to make Charlie some clothes that are easy to get on and off of her, because it's just getting more and more difficult to maneuver her to get shirts over her head and deal with buttons and tights etc., but I don't just want her hanging around in sleepers all day either, she's my little fashionista! Actually, I've/we've recently reconnected with Matt's last girlfriend Genevieve, (she reached out to us when she heard about Charlie) she's a great girl and has agreed to come over this Wednesday to give me sewing lessons, (she is a fashion designer and was on Project Runway) so I'll be learning from the best! Soon I'll be a chef/designer/fitness buff/super mom extraordinaire!


Wednesday, May 26, 2010

Sleeping Beauty.

(Charlie, 11 months old, taking a nap with mommy after a bath)










This past Monday Matt and I went and spent the night at my parents place. They watched Charlie while we hiked Teapot hill and when we got back we showered and we all went for dinner. When we got back to my parents place we'd had a few drinks when we decided that it'd be a good idea to scroll through all of our old pictures of Charlie from newborn to now...what a mistake that was. Matt and I haven't really been the same since. When you're living with this on a daily basis, the changes can sneak past you...kind of like when someone you see on a regular basis loses 20 pounds over six months and you notice the difference in them but don't really notice the dramatic change until you see an old picture of them. We realized that only 5 months ago Charlie was sitting upright almost unsupported, when now it is almost impossible to find a comfortable upright position for her nearly completely limp body. She IS using her forearms and hands MORE than ever though, so that is a positive. It was just a rude awakening, like someone threw a glass of ice cold water in our faces when we weren't expecting it.

I've still been breastfeeding Charlie a couple of times a day, but I think that's coming to a halt as well. Today on two occasions I noticed milk on the bed and coming out of her nose a little, which suggests to me that she's losing her ability to swallow and it's pooling up in her mouth, and when it doesn't have anywhere to go, exiting out her nose. I still feel fortunate though that I was able to breastfeed her for this long...'normal' children are usually weaned right about now anyway. But I just don't like thinking about what this signal implies. She's getting worse. And, yes, we know that getting sicker/worse is the only way Charlie is going to go, but I think that although Matt and I have never really discussed it, we have both had our head in the clouds and have been secretly thinking Charlie was going to be "the one". The one that either beats SMA or the one that coasts along smoothly, beating all the odds, cause she's a 'little fighter'. I've always disliked that term (little fighter)...like when someone 'beats' breast cancer and people say, "Oh, she was a fighter, she wasn't gonna let cancer take her down." To me that suggests that anyone that 'lost' their battle with cancer (or whatever disease/ailment/accident they had or were involved in) was weak and ready to go...it just sounds so negative and disrespectful to me...but that's just my opinion. Maybe I just feel like I need to defend Charlie, I think she is the toughest baby I have ever met and I'll always feel that way about her, even when she 'loses' her fight with SMA.

I've realized a couple of things about myself lately...one is that I'm commitment phobic (i know, I'm married, so how does that even work?) and the other being that no matter how many people we have in our lives, and no matter how negative this sounds, we are all alone, now and in the end. This situation with Charlie has shown me that even though I've had long term relationships and even though I'm married now, I've always had one foot out the door and prepared myself for the worst, which has usually been a self fulfilling prophecy, because I was afraid of giving into something and being hurt or disappointed or being trapped, this goes for my education and goal setting as well...I could never commit to anything. How does this even have anything to do with Charlie? Well, this situation in itself is a huge commitment (not to mention just having a baby in the first place). Matt and I are bound to her, and bound to each other. She needs us, both of us. For the first time in my life, I don't have the time or energy to be questioning my place in this world or mine and Matt's marriage or my commitment as a mother. I'm not even overly anxious anymore...my anxiety was caused by being overly reflective and constantly worrying about myself , and instead of focusing on me and my needs, I'm all about Charlie and what she needs. Charlie is busy saving me from my neurotic self.

As for being all alone...no matter how many people I'm surrounded with, I'm still ultimately alone. By that I just mean that nobody can feel what I feel. And I won't feel what Matt feels. And we are both dealing with this in our own way, and honestly I feel like we're usually too exhausted with our thoughts to even discuss them out loud with each other. That and we don't always know how to express ourselves...and I also think we're busy protecting one another, and don't want to lay our worries and fears on the other because we know their plate is already overflowing. And as for my friends, I love them and they are all so good to me, but it's hard to share a breaking heart...and it must be hard for them to understand my breaking heart and to know what to do with it. Nobody can make this feel better. Not my husband, not my mommy, and not my friends...I guess that is what I mean about being alone.

Charlie's big 1st birthday bash is only a month away. We're so excited about it. I think being with our friends and family to celebrate such an important milestone in Charlie's life will help lift our spirits and give us the fuel we need to stay positive for Charlie. Can't wait!

Saturday, May 22, 2010

Happy 11 month birthday Charlie-Anne!

(Charlie, almost 11 months old)



















Today is Charlie's 11 month birthday...my oh my has the time ever flown by, yet it's hard to remember life before her. Because of Charlie my priorities have changed so much, I'm more organized, my dream of the perfect life has been revised, and I can definitely appreciate the little things more than ever.

After deciding to try and have a baby and after the first attempt, Charlie was conceived October 4th 2008, we found out I was pregnant on October 18th, the day after Matt's 35th birthday. It's kind of a funny story because we went out the night before and drank quite a bit when I started to feel unusually sick and flu-ey...I had a friend of mine over who was looking forward to going to see a show at the Railway Club and I didn't want to disappoint her so I sucked it up and had a few more drinks till I felt better. Oddly enough, she was the one who got a little loopy and clumsy at the end of the night, and I was feeling much better, and took care of her. The next pregnancy indicator came the following morning when we went to Joe's Grill for breakfast and there was a family there with two kids...their son, about 3 years old, was being a total jerk, "NO, I DON'T WANT IT!" just screaming at the top of his lungs. Normally, not being the nurturing type, and being painfully hungover, I would have fantasized about taping his mouth shut and telling his parents not to bring the little brat in public if they hadn't taught him any manners yet, but instead, I thought, "Awwww, a little fighter, he's so cute!" Then I thought, "What the hell?! That is not supposed to be cute! You need a pregnancy test, Cherie!" When Matt and I decided to try to get pregnant, it was a fleeting thought, I took my decision back to do so immediately after the first time we intentionally tried and I decided it was a bad idea and told Matt to never ever give into my pregnancy illusions ever again. And then I thought, "Phew, close call! No one really gets pregnant the first time anyway." And so, that was that. So when I realized that I'd felt sick the night before and this jerky kid was looking pretty adorable to me, I told my friend Jocelyn that we should stop at Shopper's on the way home to buy a pregnancy test. We did, and when I got home I went into the bathroom, and because I was so dehydrated from the night before, barely mustered up a drop of pee, when the test instantly said positive. I choked. Matt was still sleeping when I ran into the bedroom laughing and crying at the same time. He was very hungover and only one of his very red eyes would open...and I could barely gather my thoughts to tell the scary red eyed cyclops we were having a baby. We both just stared at the ceiling watching our future flash before our eyes. It was the scariest and most exciting feeling I'd ever felt in my life.

Of all the things that flashed before our eyes, SMA was not one of them. I can be a very pessimistic person sometimes, but even I could never imagine something so unbelievably shitty. And I worried about a lot during my pregnancy! I worried I had high blood pressure and/or gestational diabetes, I started counselling because I feared post partum, and because I decided against the triple screen test, I took her ultrasound picture and went on the Internet comparing it to the ultrasound pictures of babies with Down Syndrome...thinking I was preparing myself for the worst. But nope, not even close.

Every month we have with Charlie is an absolute blessing. She's Gorgeous and smart and smiley and so unbelievably lovable. She's just so rare and precious. But, when I think too much about how wonderful she is I just want to kick something so hard. We are just so frustrated and angry that this is happening to her and us. I've read that losing or dealing with a very sick child can be devastating for a marriage, and I can totally understand why. Matt and I joke that we really need to work hard on surviving this with one another because we don't exactly think that were going to be the most desirable people on the market if we don't. I mean, who wouldn't want to get involved with someone who's lost a child and had their heart ripped out? We are really trying to make sure SMA doesn't take us down too.

Charlie, mom and dad love you. So much! You are so unbelievably special. Our little angel. Happy Birthday sweet cheeks! xo

Monday, May 17, 2010

Schizo.

(Charlie 10 3/4 months, sleeping on auntie Christie and uncle Ed's wedding boat cruise)

















A couple of weeks ago I was at my friend Christie's house preparing it for her wedding shower/stag when she mentioned in passing that she didn't get much sleep the night before and had to get up early for her daughters swim lesson as well. My heart fluttered and my cheeks got hot when I heard this because we are very close and I wasn't even aware that Dani was in swim lessons...I felt sad for Christie that she felt like she couldn't brag or beam with pride about her babies firsts to me. I felt sad for myself that I would never be able to counter brag about Charlie in similar comparable situations...my stories are all the 'special needs' versions now. I brought my feelings up to Christie a few days later and told her that I feel really weird that she may feel really weird about telling me about what's new and exciting with Dani. I said that I really wanted her to feel like she could be herself and brag and talk about her freely, but as I was saying it I couldn't help but feel like, no she couldn't, cause it would make me uncomfortable and sad and jealous, and then I'd boil with rage because I don't/won't have that, and then I'd loath myself for not accepting my lot in life, and not embracing it with grace and beauty. And I told her that part too. I am so hot and cold on the whole subject of 'baby disclosure'. Christie said, "I didn't not tell you on purpose, but I gotta be honest, you're probably not gonna be the first person I call when she walks." And then she explained that everyone has qualities that they have to offer in friendships and often we have different boundaries with different friends, and this was ours. It stung a bit to know that I'm probably that girl to a lot of my mom friends now, but at the same time, it doesn't have to be that way forever. And I agree with Christie, and I appreciate her honestly, and I'm glad that she allows me to be honest too.

While we're on the subject of swimming, Canuck Place found a program for Charlie called Baby Beluga and she started classes last Monday. We were really looking forward to this because Charlie loves the water, so we got up early, got organized and headed to the pool on 62nd and Cambie. It didn't go exactly as planned. We were caught a little off guard when we noticed that most of the children had down syndrome. I guess it just reminded us that Charlie is 'different' but at the same time SMA and down syndrome are almost completely opposite ailments (for lack of a better word)... maybe we just felt like all of the 'different' children were lumped together, and if that was the case, then where were the 'normal' kids? They played a game where they passed a ball around between the kids and of course, Charlie couldn't do that. Also because Charlie can't cough up/out water, I was just so anxious the entire time about someone splashing her or Matt losing his grip on her, and her ingesting water and choking. The pool was also in a solarium type room and because Charlie can only be on her back, she was upset the entire time that the sun was in her face. So, we've decided to stick to her SMA tub for now.

Sometimes I'll just be taking a walk with Charlie, or jogging around Science World on a sunny day with Matt, or enjoying a pint of Wheat Ale on a Yaletown patio, and I'll think, "I love my life or look at where I live...I'm so lucky. And then something will click in my head and I'll think, "How dare you Cherie, your daughter is dying!" And I'll remember that I'm not supposed to love my life or be happy and I'll feel guilty for momentarily forgetting to be miserable. I've told Matt before that I think grief is based on guilt. I think that if someone is dying or has died, grief is 1/2 missing that person and half learning to allow yourself to move forward and eventually feel complete happiness while still remembering that person fondly...and i think it takes time to get to that place guilt free.

We were at the doctors the other day when a woman yelled from across the room, "What's wrong with your daughter?" Hmmm. Not quite the way to ask someone a sensitive question like that. I quietly tried to explain what the issue was and Matt hurried us out. I don't mind discussing what's going on with Charlie, most of the time. And sometimes, I don't feel like talking about it at all. But sometimes I'll be in a social situation and I won't feel like talking about it and then all of a sudden, I'll find myself looking around the room at people laughing, and people talking, asking other people things like, " OMG, where did you get that shirt?!" or complaining about waiting on hold with Telus for a half hour, and my mind will race and I'll be thinking, "What the hell is wrong with you people?! Don't you realize that my daughter is dying, how can you all be so shallow?!" I don't envy my friends and family. At all. They can't know what to do in this situation, I'm pretty schizophrenic when it comes to my feelings. Ask me, don't ask me, come here, go away, I'm happy, I'm sad. So, again, thank you to my friends, for being my friends. I need you and I love you, even if it doesn't always appear that way. Much love!




Wednesday, May 12, 2010

Crazy.

(Charlie and mommy in Hawaii, taken by our nurse Anita)














Whoa, it's been over a week since my last post...where does the time go? Seriously?! The days fly by...I get up earlier than I ever have in my life, yet the days/weeks/months seem to evaporate so quickly! It doesn't make sense! I think when you care about and love something so much, there's never enough time to just relax and slowly enjoy it...you're always left wishing you could have more...like a good vacation, the more you try to savor it, the faster it goes by.

Matt and I have continued the conversation on more children. I think I go back and forth more then he does...before all of this, I only ever really wanted one child, and now my reasoning for wanting more children is so twisted that I can't really unravel it and see what and why I want or don't want what I want, clearly. Understand? Neither do I. The selfish part of me says I just got my body back and I don't feel like being pregnant again yet, and the logical side of me says I'm no spring chicken and it could take a while to become pregnant and then there is a great likelihood that there will be complications and we'll have to start all over again. Matt and I have discussed all of our options and we want to try naturally at least once. I've told him that if he twisted my rubber arm I may be willing to have relations with a tall, dark skinned man, with washboard abs and swollen lips, if I really had to, for us. He appreciates my generosity and selflessness, but says it won't be necessary. ;)

I keep seeing commercials for that show on TLC called "19 kids and counting" and I can't help but think, "you selfish jerks!" Apparently their 19th child is sick. As much as I don't want to hear about or see a sick baby, did they seriously think they were going to win the baby lottery 19 times? They seem shocked too...like, "how could this happen to us?" How could it not? I'll never see conception, healthy pregnancies, healthy births, and healthy kids, as anything short of miracles for the rest of my life, and when I see people like these, I think they are playing with fire. But, that's just my tainted opinion. I'm sure they are really lovely people with big hearts and an even bigger dining room table.

So, I've decided that I'm going to start letting strangers know what's going on with Charlie. People ask me all the time how old she is, and she's definitely at that age where they know she should be way more physical and way less floppy and weak. When they ask me her age, I always squirm, because when I tell them I'm wondering if they are wondering if i know there is something wrong with her. I can tell they want to ask. They wave and she smiles, but doesn't wave back. They are completely shocked that she 'loves' to wear her sunglasses and never pulls them off. It's getting way to obvious to just smile and nod, hoping nobody notices, and I feel the need to just get it out and over with. If I'm not being open and honest it makes me feel ashamed and uncomfortable because I think it looks like I'm embarrassed of her, when it's actually the opposite...I want everyone to know about Charlie so they can see how brave and happy and special she really is despite being so sick.

Charlie has been beating all the odds since she's been diagnosed with SMA. Her decline has been much slower than what we were told to expect, and it makes Matt and I proud. I asked Matt today, " If Char could live a long time and it meant you/us taking care of her full-time forever, would you want that?" And he didn't even think about it for one second, and said, "Of course! I would be so happy to! I have never loved anyone more than I love her!" Sometimes I think it's just me that would do anything for her and that Matt is the more rational, level headed one when it comes to Charlie and her situation and care, but then he says or does something to remind me that we're both absolutely crazy about her.

Tuesday, May 4, 2010

Everyday is like Sunday.

(Charlie 10 months and baby June, 1 day old)



















On Sunday, May 2nd my good friend Lindsay had a baby girl named June, on Monday I took Charlie to the hospital to visit her. She is gorgeous! When you hold a new baby and look at your 'baby' you realize how much they've actually grown when you weren't paying attention. Charlie looked HUGE compared to June...and, for a second, she also looked like a big sister...and it reallllly got me thinkin', (this week) I'd love to give Charlie a baby brother or a baby sister. She was looking at baby June so adoringly it just melted me. I'm just sorry it takes so long to actually make and build another baby because our time together is limited. That and I'm afraid of another child having SMA or taking care of a high needs child and having a newborn or possibly missing and mourning Charlie while being pregnant/having a needy newborn. It's just a really big decision to make...so, Matt and I have a lot of talking and thinking to do.

The nurse is here right now, she's watching Charlie in the living room while I write this. I just got back from the gym and Matt is there right now as well. We are having a friendly fitness competition with one another, biggest loser style, because we realize that we need to be fit to not only be healthy, but to take care of Charlie. The heavier and taller and more flaccid Charlie becomes, the more difficult it is to carry and maneuver her...its like trying to pick up and hold 5 liters of uncontained water with arms and legs. We are constantly trying to think of comfortable solutions for her. She's outgrowing her 'TV chair' and she's only got about a month or 2 left in her carseat and special bathtub, and she's almost too long for her stroller....Charlie is soooo tall! We have an appointment with a place called Sunnyhill soon so that we can figure out what we need in way of replacements for all of these items.

Because we are using Charlie's g-tube more often (about 3 or 4 times a day) we are still trying to figure out a balance between how much nursing and how much g-tubing to do. Two weeks ago Charlie lost a couple of ounces so we were informed that we should give her a little more formula through the g-tube, so we did, and in 6 days she gained over a pound. Too much, too fast! I watched an episode of Geraldo once and it was about men who like their ladies big and they would feed them a couple 1 liters of creamo on a daily basis and watch them grow, all pleased with themselves...I kinda felt like that when we were told her weight this week. It's difficult to tell how much she's getting when she's nursing and then we are injecting food into her as well, and she's still too little to tell us when she's full...I feel like I'm pumping her full like a bike tire and could use a gauge to know when to stop. So, we're going to ease up this week and see what happens.

Charlie just fell asleep watching the Anne Murray special I TIVO'd the other day, and the nurse is going soon. I'm going to get ready and we're going to take a seawall walk and go for a picnic at the beach. It's only been two days but it feels weird having Matt home during the days now. Everyday feels like Sunday, and I like it!

Monday, May 3, 2010

Hush little baby.

(Charlie and daddy, about 6 months old)













It's 1:37 am right now and I'm typing this post from bed while Charlie watches her Baby Einstein video beside me. She's teething big time right now and it's brutal at night. I would like to personally thank the makers of Children's Tylenol for making our life a little easier one dose at a time. I keep it on the nightstand so that when Charlie wakes up howling in the middle of the night, my feet never even have to graze the floor to get it. I like to think of the bed as an island in the middle of the night, that I leave as little as possible, and only for emergencies, so I keep all of our tools within reach. It's been a good night if our island managed to remain self sustainable.

It feels disheartening to know that Charlie (and Matt and I) will go through this excruciatingly painful process of teething, for nothing. She will never get to use her teeth for their intended purpose. I imagine that for parents with 'normal' children they can at least see the light at the end of the teething tunnel...or maybe not, I don't know...but at least somewhere down the road there's a steak in it for the kid (or tofu) and it suddenly makes it all worth it. In my positive moments I think, "Charlie's teeth are for showcasing her beautiful and brilliant smile." And, even now, with only 2 and 2 half teeth, does it ever look pretty damn adorable when she smiles...just when you think she can't get any cuter...

When I was pregnant I subscribed to a baby website called Baby Center. You plug in your due date and it emails you everything to expect as the weeks go by in your pregnancy. After you have the baby it emails you all the monthly milestones to expect from your baby. It doesn't apply to our family anymore, but I haven't quite figured out how to unsubscribe to it, so I keep getting these "your baby is crawling now" type emails that sting a little bit to read. Most of the time I just delete them right away, but every now and then I like to torture myself and I open one up just to see what we're missing out on. I know that sounds harsh and I don't feel that way all the time, but I do on the days that I feel weak enough to cave in and open the email, which is few and far between. And, it's only the physical and long term advice/information that doesn't apply to us, she's still a little brainiac meeting all of her emotional and vocal milestones.

Oh! She's asleep! I'm gonna finish up here and get some rest too before the drooling angry tooth monster possesses my sweet Charlie again in a couple hours!