Monday, December 20, 2010

Happy 18 month birthday Charlie!

(Charlie, 17 months, showing off her pixie cut)


















It's been one year since Charlie was diagnosed with SMA type 1 and last week was the first time that I dreamed things were different. It was a wonderful dream, and it was so believable...Charlie was able to really sit up...she was sitting in a highchair, and I was busy tidying the house up when I turned around to see her smiling away and feeding herself dry frosted Cheerios. I was instantly panicked, because all I could think was, "she can't eat food, she'll choke!" But at the same time I was amazed by what I was witnessing, and could see that she COULD eat food, and she wasn't choking...in fact, she was loving her Cheerios and eating them like an old pro. My mom was somehow in my dream and when I asked her how Charlie got the Cheerios she said, in a no big deal kinda tone, that my sister had given them to her. I kept trying to express how big of a deal it actually was that Charlie was orally eating food, but my mom and my sister just acted like it'd been this way all along and that it was no biggie. When I woke up and realized that it was just a dream, I was instantly depressed...I couldn't believe how excited and happy and amazed I had felt in my dream about such simple things like sitting up and snacking. BUT, when I thought more about the dream and it's 'message' I realized that nothing is 100%...I mean, she's moving her legs now, that wasn't supposed to happen...so hey, anything is possible, right? I spend way too much time focusing on what Charlie won't do/can't do...I could be spending that time more productively by keeping my door open to the 'what ifs'...there's nothing wrong with dreaming.

We've been out of the hospital a few weeks, and Matt's sick again. He's been locked in his room for 48 hrs to avoid spreading the sickness to me or Charlie. I slip a multi vitamin, echinacea, a shot of Buckleys, vitamin c, and soup in every couple of hours. I've been bathing Charlie everyday, double nebulizing her (a new machine that basically humidifies steroids into her lungs to help keep them strong) bipaping her almost full-time, and cleaning out her nose with a saline solution every couple of hours. So, now, we just wait. If she sneezes, I cringe...and I hate to say it, but I get resentful towards Matt. Obviously he can't help being sick, but I just see Charlie's life flash before my eyes whenever someone sharing the room with her coughs or sneezes. I DO NOT want to spent Christmas in the hospital, and obviously Matt feels the same...so hopefully all of the precautionary measures do their intended job. I'm pretty much holding my breath and crossing my fingers for the next 5 months, and trying to cut a deal with summer to come early.

Our stroller finally showed up a couple of weeks ago. When the rep came over to teach me how to use it, I'm afraid I was a bit of a brat with her. I became anxious when I saw the stroller and reacted negatively towards Jody the rep, trying to point out all of the 'flaws' instead of just admitting that I was overwhelmed. It's just that when I saw it, and all of the attachments, like the IV pole, my heart sunk and I realized that from now on, whenever we go for a walk, people will know right away that something is 'wrong' with my baby. And yes, I talk about it openly, but sometimes as my friend Meaghan helped me articulate, I just want to blend in too. And, as suspected, people are starting to do double takes...and it makes me feel uncomfortable...and then ashamed with myself because I wonder if it's because I'm embarrassed of Charlie...but, I know it's not that, it's more that I just want people to see Charlie BEFORE her illness instead of after her illness or not at all. It's gonna take some getting used to, that's for sure.

Charlie turns 18 months on Wednesday! A year and a half! This is HUGE! A couple of friends are coming over on Thursday and we're celebrating with wine and cake and pressies for Charlie...and then it's her second Christmas on Saturday! Both amazing milestones that we were told we'd never see. LIVING proof that you shouldn't believe everything you're told.
Happy 1 1/2 Charlie, and Merry Christmas!!!


Tuesday, December 7, 2010

Christmas miracle.

(Charlie, 17 months)













We've been home for a couple of weeks, and now that some of the dust has settled, I'm actually beginning to get pretty excited about Christmas. We have the tree up, the stockings hung, and Matt and I have our differences aside. Christmas is about love and family, and Charlie is that to both of us, so we're focusing on her....and honestly, it's not really hard to do, she's easy to lose ourselves in.

Charlie has been astounding us as of lately...again. After two back to back colds, and many close calls, Charlie is doing things she's never done before...things we were told she'd never do. It was last year on Christmas day that Matt and I took Charlie to emergency at Children's hospital because her motor skills had gone from GREAT to GONE in about six weeks time. Charlie had never really moved her legs or bared weight on them since birth. I had googled 'my baby doesn't bare weight on her legs' many times, and was always relieved to see that this was a common worry among many mothers and that everything was going to be fine. So, I'd stuff my worries back down and convince myself I was just being a nervous first time mother. It was when we started noticing that Charlie was no longer doing the things she used to, that we really began to worry.

As I've said before, when Charlie was diagnosed we were told she most likely only had a few months to live, Charlie had gone downhill so fast that the doctors just thought that if she continued at that pace, she would be gone within months. BUT, we're happy to report that, one year later, Charlie has not only leveled out, but she has IMPROVED in many areas! She is flailing her arms, wiggling her bum, and moving her legs and feet, something she NEVER did before (unless she was in water)...I've been calling it a Christmas miracle! This all started in the summer, but keeps getting better and better. Every time Charlie gets a cold and we see how sick she can get, it sucks the hope out of us, and then we get home and she starts doing something new and improved, and it not only fills up the old hole where the hope used to be, but it creates a new one, one that makes us dream bigger and better for Charlie.

SO, on Monday I went for dinner with my 'angel' and her daughter. I met her at my gym last year and we became friends and she did the Canuck Place Adventure Challenge with me. She's a very interesting woman who's been AMAZING to me. She has supported me and Charlie in many ways, and I'm very thankful to have met her. At dinner the other night she invited me to join her and her daughter, who is my age and is also amazing, in HAWAII on Jan 1st! I came home worked it out with Matt and the nurses, and I'm going! I am REALLY looking forward to it!

This week, life is good.


A video of Charlie 'dancing'.


video

Friday, November 26, 2010

Under construction.
































I just got home from the gym where I was dodging coughs like they were gunshots in the ghetto. I always try to park my bike in the 'least susceptible to germs section' but which direction one chooses to spread their sickness in, or whether or not one practices 'the rules' to coughing and sneezing is beyond my control. Cover it, contain it, keep it to yourself, perhaps use a Kleenex, or, if none are available to you, cough or sneeze into your arm or shoulder people. I've mulled it over many times about whether or not I should just quit the gym in the winter, but i just can't. And it's not because I don't love Charlie enough to do so, it's because I love her SO much. I need the gym to stay mentally fit, it's my anti depressant...if I go a couple of days without it, I can feel myself slipping into a bad place. I've actually heard too that physical activity actually helps build your immune system, so as much as I'm putting myself in harms way with all of the shared sweat and germs, I think I'm counter acting that by staying active in the first place and building up my immunity. So, I need it, and Charlie needs me to be mentally and physically fit for her too. So we both win. There. So go away guilt!

Canuck Place was such an amazing break for all of us. It was so nice to relax and spend a week in such a positive, happy, relaxed and upbeat atmosphere. This was our second long term stay, and the first time I really realized something that Canuck Place gives us...a sense of normalcy. Matt and I are so used to feeling 'different' 'ostracized' 'left out' 'misunderstood and 'abnormal' and not because people try to make us feel those ways, but because we don't
really know or spend time with people like us. All of our friends are great, but their healthy baby dreams came true, life had other plans for us, and it's nice to be able to spend time with other families who's life course took an 'alternative' path as well. I think Matt and I neglected to notice this important detail last time we were at Canuck Place because both of us were still sort of in denial and we weren't ready to accept the fact that we were 'those people'. We're ready now, and can appreciate the support accepting it gives us.

So, we're home now and it's back to life, back to reality. Mine and Matt's reality is currently under construction...a couple of months ago, when Charlie was sick for the first time, and we got the GREAT news that there was a good chance she'd be around longer then they had initially thought, Matt and I both (individually, not shared at the time) had an epiphany...up until that point Matt and I had been putting our needs and our wants and happiness on hold...and putting Charlie's needs and wants first and foremost (which any parent would and does do) but because we were initially told that she was going to die soon, and were putting our individual happiness and needs aside, 'until after', we both realized that we hadn't really been 'living' while Char was alive. Later, we talked about, got upset about, and discussed some more, our shared epiphany, and we decided to separate. Our relationship had cracks before Charlie's diagnosis, but add to that the stress and pain of a terminally ill child, and you have all the ingredients for a terminally ill marriage as well. We are still figuring out the details, but we both feel/know it's the right thing to do.

Yesterday we took Charlie to hang out in the Vancouver Canucks dressing room and get pictures taken with the Sedins from the Canucks, and we did an interview for an upcoming Canucks/Canuck Place/children's telethon, it was an amazing day! Charlie was so good! She was just melting every ones hearts, as per usual...it was one of those moments where Matt and I kept looking at each other, beaming with pride, with smirks on our faces that were saying, "isn't she the best?! look at everyone eating her up and loving her." And, She is, and they do.

Tuesday, November 23, 2010

Happy 17 Month Birthday Charlie!

(Charlie, 17 months)


















Yesterday was Charlie's 17 month birthday. Two weeks ago we were terrified that she/we wouldn't see this day, but we're happy to report, Charlie is on the mend, and getting stronger everyday (again!)!

Two days ago I got an email from a woman that I've never met or talked to before...it said, "Where are you? I have been following your blog for months now and you
haven't posted in a couple of weeks and I'm worried sick about Charlie! Just wanted you to know there are a lot of people thinking about you and your family everyday..." WOW! My heart swelled! I had been having one of those days where I was feeling negative about people not meeting my expectations regarding Charlie and the support I/she does or doesn't recieve from them, and feeling disappointed and hurt because of it...so, when I received this email from a complete stranger, I changed my focus from who was disappointing me, to who was pleasantly surprising me, and I feel much better now because of it. At the expense of sounding arrogant, Charlie is a rare, special angel, who anyone would be PRIVILEGED to know, and if someone who is fortunate enough to have the opportunity to really get to know her, doesn't have the time, energy, or desire to, well, it really is their loss, and they're throwing away the most beautiful opportunity of a lifetime. I truly believe that...and I think people like Deborah, and most of the people in our lives understand that concept too. Thank you Deborah, you made my day!

Charlie was in Children's hospital for two weeks, the first week very touch and go, but she's feeling much better now so we have been preparing for home through
Canuck Place where we've been staying the past five days. We are getting super comfortable at Canuck Place...we actually asked to extend our stay another couple of days, where in the past, we were always in a hurry to get home...ahhh the changes comfort can bring! It's just such a relaxing place to stay, and the staff is amazing. Actually, on Thursday we are being interviewed for their Canuck Place Telethon commercial, and Charlie is being 'featured' canoodling with a Vancouver Canuck, pretty cool!

So, all in all, life is good again this week, and Charlie is still amazing us with her strength, bravery, and her beautiful, happy disposition...still learning something from her, every. single. day.

Happy Birthday Charlie!!!









Wednesday, November 10, 2010

The magic touch.

(Charlie, 16 months)

















Charlie’s been in the hospital a week now…and, I’m predicting she’ll be here at least a couple more weeks. This cold hit Charlie a lot harder than her last one… she was only about 85% of her old self when she contracted this cold/flu, and I imagine that's got a lot to do with how she’s handling it. Day 2 here really rattled me; it was a VERY emotional day. Charlie just looked so sick and beat down, we’ve never seen her look so exhausted and weak. You know how you hear people say that when a loved one died from an illness, like cancer, while they were present in the room, that right before the person passed away they saw a look in their eyes that said, “I’m ready to go now, I don’t want to do this anymore, please let me go.” Well, I was positive that’s what I was seeing that day. At one point Charlie’s pediatrician, another doctor, and two nurses from Canuck Place came to visit while Matt was out and I could not stop crying and I told them how I saw ‘the look’ and how I’d never seen it before, and I was confused…is this what ‘regular’ children with a cold/flu look like, or was Charlie trying to say goodbye to me? When I later asked Matt if he saw what I saw, he reluctantly admitted that he had too. That day sucked the life out of us, and erased ALL of the positive thinking we’d been practicing up until then. Last time we were in the hospital we were given the good news that it looked like Charlie might be around longer then they initially thought she’d be…we’ve since learned, the hard way, that we cannot predict anything when it comes to our little baby. All we have is today, tomorrow is no guarantee.

Day 3 grabbed us, shook us hard and said, “look at this tough little angel, she’s OBVIOUSLY going to be fine, relax already!!” And with that, Charlie was smiling and singing and playing all day long. She seemed like her old self and made me think that I’d imagined the day before…until day 4/5. Charlie had two days of horrible sleeps, yellow secretions, low oxygen levels, and a high heart rate, all of which were showing us that she was struggling to breath. Our pediatrician and our respirologist came to see me in Charlie’s room and told me that Charlie had had a really rough night and morning, And, for about the third time since we’d been here this time around, we discussed our wishes regarding how far we were willing to go in an emergency situation. The respirologist, who is a very kind and compassionate woman, explained that she’s seen seemingly happy SMA babies go from good to bad, QUICKLY, one minute Charlie could be laughing, and the next choking on a mucus plug. Then we discussed the measures Matt and I were willing to take, and then REALLY discussed what they entailed, I am now rethinking my stance on some things…I think? It could be a very ugly and painful procedure, and is not guaranteed. Do we want Charlie to suffer so we can possibly have another 6 months with her, or do we want her to go peacefully? And, should we try every intervention, or let nature take its course? And whichever decision we make, will we be able to live with ourselves after, for the rest of our lives? Such painful, complicated decisions to make.

Now, day 8, Charlie is looking better, but I also know better than to put all of my eggs in that basket, but, of course, we’re still optimistic that our baby is on her way out of here someday in the near future. It’s the craziest thing….when I’m gone for a while, or when Charlie is getting her physio and is fussing with it, I can walk in, walk over to her and touch her and look up at her monitors that keep track of her oxygen levels, respitory rate, and heart rate, and they will ALL level out, almost instantly. A nurse commented on it the other day when I crawled into Char’s crib to cuddle her…her heart rate and oxygen levels, instantly settled, and she stopped fussing. If that doesn’t make me feel like a proud mama walking on sunshine, I really don’t know what it would take to do so! It’s proof that love and attention are important ingredients for good health, happiness, and well being...here’s hoping I never lose my magic touch, and Charlie beats this bug.

Friday, November 5, 2010

Here we go again.

(Charlie, 16 months)


















We’re back in the hospital. Charlie has a cold/flu that within two days of rearing its ugly head, is already making her last cold, which she was hospitalized 15 days for, look like just a small case of the sniffles. Charlie has diarrhea, an off and on fever, and has thrown up twice, she has only thrown up 2 times in her life, so it’s definitely cause for alarm…also, throwing up is dangerous for an SMA child because they can’t swallow and can asphyxiate on it. We stopped feeds for a few hours and are now slowly administering her overnight feed to see if she gets sick again, if she does, they’ll have to put her on an IV…we’re waiting to see the radiologist in the morning who will change Charlie’s g-tube (tummy feeding port) to a jg-tube, apparently it’s a fairly easy procedure and it will send her feeds to a different part of her tummy so she can't throw up. The nurses have been deep suctioning Charlie’s throat and nose and she already has a lot of green mucus, which is a bad sign…that means it’s thick and threatens to form a mucus plug in her throat, which can cause her to choke and stop breathing, which would require us to make some big bad decisions...when we were in the hospital last time, her secretions were clear until about day 10 when she was just beginning to get the last of the junk out, it happening so early this time around really has me worried. This is obviously a pretty wicked bug.

It all feels like the beginning of the end to me. I try to stay optimistic, but I feel like whenever I accept Charlie’s condition and decide to live our/my life as if she was ‘handicapped’ instead of 'dying' I am quickly and quite rudely reminded that NO, she is not handicapped, and that we will never really be 'living' with SMA, and we will not be 'beating' SMA, we will instead be constantly tortured by it...SMA will constantly be holding us by our ankles, and threatening to drop us hundreds of feet below, into the grieving parent abyss. Morbid, I know, but realistic. I’m tired of tricking myself into thinking otherwise, only to be jolted back into reality when my baby girl is hospitalized, yet again, and her oxygen saturation machine is showing me, PROVING to me, that she is in fact struggling to breath. I think Matt and I get used to Charlie’s behaviors, thinking they’re 'just Charlie' when in fact they’re 'just SMA'. Before we knew anything was wrong with Charlie she would make this little gurgling sound while breathing fast and heavy…Matt and I just thought she was being silly and we’d get face to face with her and copy her back, not knowing that this 'game' was actually Charlie struggling to breath. Even now, I think we’ve gotten used to a lot of Charlie’s struggles, and have forgotten or brushed off what they’re really reminding us of…it’s easier that way, and it’s our way of accepting Charlie for everything she is.

All the statistics say that 90% of type 1 SMA children will die by the age of 2. That statistic has been stuck on repeat in my head all day. I’ve spent a lot of time in the recent past wondering how it happens, how does a child go from stable to not stable? What are the signs and situations leading up to it? How can we be prepared? And, now I see. We went 11 months since Charlie’s diagnosis without a major glitch…no colds, no flus…A LOT of what ifs, but nothing ever actually really happening. Until recently. Now, it won’t stop. Because Charlie never really got back to her old self (her baseline, as the doctors call it) since her last cold, this illness will wreak more havoc on her body this time around because her weak body is even weaker than usual…I’m REALLY praying that this is as bad as it gets.

Matt and I have discussed it and we’ve decided that, from now on, whichever parent gets sick , they will have to abandon the home and avoid the other and Charlie until they’re better…it has to be done…there is just no way that we can avoid passing the sickness on in a 1000 sq ft, 1 floor condo…that and Charlie is just too tempting to smother with love and kisses and it just wouldn’t be safe to do so. So, the only option is to remove ourselves from her space until we’re no longer sick and we're not putting her at risk anymore.

I love my little Pebbles, and I can’t stand thinking of life without her. Get better Char. We love, love, love you.

Saturday, October 30, 2010

Wednesday, October 27, 2010

Happy belated 16 month birthday Charlie!

(Charlie @ almost 16 months)


















This is the first time I've left Charlie's birthday post this late. I've just been feeling so stressed out and self absorbed lately...so much so that I couldn't even muster the energy, nor did I have the mental capacity to sort through and rehash my emotions. I still don't really. So, I won't yet.

All I can really say is that when Charlie was in the hospital this last time, and after a routine follow up with her neurologist, we were told by both her neurologist and her respirologist that they believe she may be around a little longer than they initially thought she would be. GREAT news, but it really got Matt and I thinking about a lot of things. Like what was really important in life and what wasn't, what was worth putting our blood, sweat and tears into, and what wasn't worth our energy at all. For the past 10 months we have been living our lives waiting for Charlie to pass away, and then we thought, 'after Charlie' we'd begin our lives again...start over. But now, after Charlie's recent, more positive prognosis, whether that means 3 months, 2 years, or 10 years, we've began to think more along the lines of, "This IS it, this IS our daughter, this IS our life we're living, right NOW, so let's start living it the way we want to live it...let's stop planning for something horrible that hasn't happened yet because we'll never be prepared and we'll only waste the precious time we do have, and instead look at this whole situation as a gift and a warning, to start living life NOW, who knows what tomorrow brings. Life is short, lets enjoy it while we can." And, In realizing this, we discovered that our lives are in need of some major renovations for both of us to be truly happy, and for Charlie to be truly happy too. So, we're still figuring out what that will look like right now.

Not a day goes by that I'm not thankful for Charlie. Everyday I unwrap another layer of my little present and I get a better glimpse into what an amazing gift she really is. I was talking to my friend Amanda who has a little girl, Gemma, who has an undiagnosed neuromuscular condition similar to Charlie's and we both felt that as painful as it can be to have a child like this (meaning, it's hard to be told your baby won't be here for long) we also feel like we're the 'chosen ones' like, we've been entrusted with little earth angels. I told Amanda that I often feel Charlie is like my little Buddha, so peaceful and wise beyond her/anyones years..she's better than all of us, so pure and enlightened. Amanda agreed and we discussed how we often looked to our 'angels' to give us the answers and show us the way, and to help us make decisions in our daily lives. It's really pretty amazing. And I wonder why me? Why Matt? Sometimes I'm not sure if I deserve her, but she's mine all mine, and I'll keep her regardless of my prerequisites.
I love you Charlie. I'm glad you chose us. Happy 16 month birthday! xoxo

Wednesday, October 20, 2010

Time out.

(Charlie, almost 16 months)

















We're going through an incredibly difficult time right now. We're in the middle of making some major changes, but it's not really the time to talk about it.

Thanks. And, I'll be back soon.

Saturday, October 9, 2010

Home.

(Charlie 15 months)


















We got home from the hospital on Wednesday. Before we could leave we were told to go and buy a new rear facing carseat for Charlie because she was 'too big' for her current one, and it 'wasn't safe'. We explained that it has become very difficult for Charlie to travel in the car in an upright, reclined carseat and that we really needed a flat one (which we had mentioned and asked for several times before) that she can lie on in the backseat...one like the boy in the isolation room next to us had. We were told we didn't need it yet and to go and buy a new rear facing one for now and to worry about the other one 'later'. Matt and I were very irritated and expressed this. No matter what size Charlie's rear facing car seat is, it's dangerous...she is not a 'normal' child, therefore 'normal' children's safety rules do not always apply to her! We explained that in the event of a car accident, it is a great possibility that Charlie's neck could snap, rear facing or not. Her head is like a heavy, limp, bowling ball attached to a toothpick, it will fly! Also, Charlie is a stomach breather and because her muscles are weak, she crumples in an upright carseat and struggles to breath...having her duct taped flat and sideways in the backseat would even be safer than a 'regular' carseat.

We are so frustrated with people telling us to wait until later because, when/if we do, we end up in dire need of a piece of equipment that takes several weeks to come in, which can be VERY detrimental to Char's health. As it stands we've been waiting six months for her stroller (although her new physical therapist is working hard to get it asap) and she REALLY needs it now...she has outgrown her current one and going for walks is Charlie's main source of entertainment and enjoyment (aside from DVD's). We had to ask several times for Charlie's bipap machine and were told several times that she didn't need it yet, but we wanted it to be prepared and to teach her slowly how to use it and to get comfortable with it. We are VERY thankful we pressed for it, because like most of the equipment, it takes time to get ordered and come in as well as we needed a hospital stay and training to learn how to use it. When she got sick this time, her first time, she REALLY needed bipap and was used to using it BEFORE she needed it, which helped, AND we were required to bring our own bipap to the hospital with us...what would have happened if we hadn't pressed to get it months ago and Charlie wasn't trained and we didn't have one to bring to the hospital with us?! Also, although we managed to get Charlie home from the hospital in her new 'normal' child carseat, it was the scariest ten minute drive ever! She struggled to breath the whole way home, choking and eyes watering the entire time. When we tried it again two days later, it was the same scenario. So, we've decided we won't/can't take her anywhere in the car anymore, except appointments...I imagine even those trips will be hair raising experiences.

Charlie getting sick showed us just how bad things can get. Even though we're home now, she is far from recovered. She's not the same kid she was the day before we took her to the hospital. She can barely be held upright for 2 minutes now before choking, she's on bipap at night and during naps which is causing chaffing on her face and we were also informed that kids who use bipap for extended periods will most likely get some facial deformation...and I know that it shouldn't matter to me, but it does, it hurts. I love THIS beautiful little face, the one that looks like the perfect mix between me and Matt...but, I know I need to put the surface stuff aside and be happy that she can BREATH, that's what matters most. We have discussed it and seeing what a 'minor' cold did to Charlie, we have decided to pretty much become hermits. At this point we cancelled Thanksgiving dinner because we're terrified of germs. We often forget that it's not just Charlie we need to protect from germs, we need to be just as diligent in protecting ourselves too...if we catch something it's almost guaranteed she'll catch it too. The doctors told us that the 15 days we were in the hospital is considered a short stay for an SMA 1 child...and we just CAN'T go back there anytime soon...seeing Charlie lay in that crib day in and day out, no walks, and not being able to really hold or cuddle her without a million cords getting wrapped up in each other and setting the machines off was so hard...we were SO stressed and completely losing our minds!

Lately, in preparation for bed, I brush Charlie's teeth with a toothbrush that's connected to her suction machine so she doesn't swallow her secretions, I clean her nose out with saline, put on her splints, I set up her feeding pump and connect it to her, put her bipap mask on, and climb into bed with her and think, "WHOA...REALLY?!" I haven't had a good nights sleep in weeks. My 'sleeps' are full of thinking, thinking, thinking, worrying, and waking up to turn Charlie over every two hours and feeling her stomach to make sure she's still breathing. It's all so overwhelming. It's much better being home, but at the same time, I feel less pressure to make sure she makes it through the day/night at the hospital because I know there are qualified nurses and doctors there if something goes wrong. I'm very anxious and obsessive compulsive about checking and double checking that everything is OK, which definitely makes it difficult to relax and get some sleep. At the hospital we were told to have her in our sight at all times from now on, so there is no going to bed without us anymore...if we're up till 1 am, so is Charlie...but, she doesn't mind, she likes to party.:)

Here's hoping for a mild Winter with no illness.

Sunday, October 3, 2010

Human nature.

(Charlie, 15 months)














I'm home alone and I'm supposed to be taking a break, a time out of sorts, from all things Charlie...but how is that even possible? Its day 12 for Charlie at the hospital, and Matt is staying with her tonight, she's on the mend but her secretions are still thick and we find out if we're moving over to Canuck Place tomorrow or staying at the hospital a little longer.

We've been eating shitty, sleeping shitty, and super stressed out...we just want to be home again! We haven't really cuddled Charlie in 12 days, and that's 12 days more than we're used to...can't be good for her either. But, the good news is, Charlie's respirologist came to check on her yesterday and couldn't believe how much she was moving her arms and legs and said "type 1's don't move like this at her age, she's more of a type 1 1/2 and I think if we manage her colds quickly, she'll be around longer than we expected." Great news! And, yes, I've heard SMA parents say their kids were a type 1 1/4's or a 1 and 5/8th's, and I'm not an optimist by nature, BUT, this guy is as frank as they get...in all of our meetings with him he has given us nothing but the grim truth and facts, he's a VERY serious man...Matt and I always leave his office completely deflated and ready to jump off a bridge, so I know he wouldn't sugar coat anything, and frankly, that makes me respect him and his opinions that much more. So, we're feeling a little hopeful again in that regard. We feel like we can dream again...but carefully.

We are the proud parents of the most beautiful little girl in the whole world, but as I've said to my family and friends before, I can't help but feel like I'm/we're in emotional and parental purgatory. We will never really be happy and satisfied with our lives as parents, because she's sick, and we don't really feel like real parents either...not parents of a child like almost everybody else we know is, like we also planned for and dreamed of too, but one they say will be here today and gone tomorrow. And because Charlie is our only child, there will soon come a time where Matt and I will have to give back our titles of 'mom and dad', I really can't imagine going backwards to the Charlie-less couple we were before her. It's frustrating because we all sort of, wether we admit it or not, have children not only when it's 'our time' but also, it seems, around the same time as all of our peers are starting families...we get to a certain age and the pressure is on and we desire to be included in and partake in the evolution of growing up, family, and the 'next step'. When we weigh our options we often think, "Is it really worth waiting five more years? All of my friends children will be in school and I'll have a newborn." And often, that helps in our decision process regarding starting a family, or waiting a little longer. It's human nature to connect with others that are on the same path as ourselves, and to be influenced by them as well.

Matt and I have more in common with the parents we've met in the last 9 months who have children with rare neuromuscular diseases and cancers, then with the people we've spent the past 20 years growing up with...that baffles me...that we're 'those people'. Still. Our future holds many hospital visits, many close calls, plenty of stress, big decisions, loneliness, and isolation from our family and friends, sprinkled with good times. Often we hear people say, "Wow, you two are so strong, you know, whenever I'm having a bad day, or complaining about my life, I think about you two, and how strong you are, and I realize how fortunate I really am." And, I know people only mean well with that statement, but I can't help but feel like mine and Matt's and Charlie's lives are being used as the barometer for a shitty life...like, "Things could be worse, you could be Matt and Cherie" kinda thing. It's almost embarrassing. I feel exposed...like I couldn't even fake like I had it all and was living the dream (as we often do) even if I wanted to. It's a really good thing I'm a 'wear my heart on my sleeve' kind of person!

I'm thinking too much time in the hospital, in an isolation room with no windows, is NOT a good thing. We're really needing home right about now...and maybe an attitude adjustment...or maybe I've just got a case of the Mondays.

Wednesday, September 29, 2010

Get better Char!

(Charlie, 15 months, getting music therapy)

















It's been a week since we brought Charlie to the hospital, and we're still here. Initially we thought we'd only be here for a couple of days, but I guess Matt and I have been a little naive in thinking that Charlie's 'tough' and isn't your average 'weak' SMA type 1 baby...but, she is. Matt and I spent 11 months preparing for and avoiding this day, all the while not expecting it to look quite like this. It's scary seeing our little baby laying in a hospital bed with cords attached to her little body and a beeping machine that is either trying to console us with its mellow beeping, or scare the crap out of us with its frantic beeping, attached to the other end.

Charlie is doing OK but the doctors just want to be sure that she's doing really OK before we either head home or over to Canuck Place to help us transition back home. Her secretions (phlegm) have gotten thicker and if we don't take care of it, Charlie is at risk for a chest/lung infection, as well as pneumonia. She has been getting chest physio 3-5 times a day right now so they can loosen up the goo and deep suction as much of it out as possible to avoid complications. It could still take months to recover after and if she gets a cold while still recovering, it can look a lot worse than this.

I've been staying over most nights and Matt does days...only now are we beginning to lose our minds a bit. For some reason though, time goes by really fast here. That's not how it usually works...usually when I'm not enjoying myself, time drags, but here, it goes by so fast! I think it's because we're on a pretty tight schedule with feeds, physio, playtime, naps and swapping off, that time just slips away. But, we're beginning to feel the effects of this stressful situation now. At first, when we thought it was just precautionary bringing char in, we didn't feel too stressed out, but now, several end of life/palliative care talks, and more details and understanding of the disease later, as well as seeing how weak and helpless Char really gets when she's sick, we're feeling it. Charlie is still ALWAYS smiling, but she's sleeping more, and not recovering very quickly from what is considered a 'weak' cold to the average person...and knowing and watching this breaks my heart. And, makes me love her even more. I really, really, really, really, really, can't imagine ever having to say goodbye to her.

A couple days after we got here, a counsellor from Canuck Place came to Charlie's hospital room to talk to Matt and I. You'd have thought that we had never ever met another human being before...especially one who'd asked us about ourselves and how we were doing with this whole situation. We were both finding it incredibly difficult to give the other a turn to talk...just sitting in our seats, wiggling around restlessly, trying hard to contain ourselves and keep our mouths shut until it was our turn to speak...it was obvious we were both overflowing with emotion and definitely needing to do that more often. I think she just meant to drop by, but a half hour in, she was sitting on the floor nodding back and forth between Matt and I, barely able to get a word in herself. An hour and a half later she was on her way out...but, I think she could have stayed 6 hrs, and we would not have run out of things to talk about. I asked her about grief...I'm obsessed with it...I NEED to know how I should plan to feel...knowing and preparing has always been half the battle for me. I asked her how past 'clients' have dealt with it...one thing she said that really resonated with me...she said that she's heard a lot of grieving people say, "I want to be alone, but I don't want to be alone." I get that. So much. That's me in a nutshell. And, I know I'm not fully there yet, meaning our situation will get much worse, but I'm like that now. She said one woman told her she wanted people there, but she didn't want to talk about anything, and that she just preferred to lay in bed and hear other people out and about the house doing their thing, but leaving her alone. I totally get that. I often think, "Oh god, don't ask me, I don't want to talk about it." While at the same time wondering, "Why aren't we talking about it?!" I feel sorry for my support system sometimes, I really do. But, I'd be there/go away, talk about it/not talk about it with them if they ever needed me, no problem.

Despite mine and Matt's lack of patience and understanding with one another sometimes, we've been a pretty good team this past week. I know both of us are at least grateful for that right now, if nothing else. It's good to know someone understands you and has your back in times like these. So thanks Matt, keep up the good work!

Charlie is probably up from her 7 pm nap, so I'm off to entertain and cuddle her now.







Thursday, September 23, 2010

Happy 15 month birthday Charlie.

(Charlie, 15 months)



















Today is Charlie's 15 month birthday and we're spending it in the hospital. I usually try to stay on the positive side when writing Charlie's birthday posts, but that's not going to happen tonight.

Last night was a rough night. It was difficult to get Charlie down to sleep and even after we finally did, she woke up crying several times. Matt and I chopped it up to her molars coming in, and just made sure to dose her with Advil before we finally hit the hay at 1:30am ourselves. Charlie was really snoring up a storm and her breathing sounded really 'crunchy', which isn't totally unusual for her, her secretions pool in her throat and she always sounds a little 'crunchy' and 'gurgly' like she's Listerine-ing at the oddest times...usually when she's delighted with something. She tends to gurgle when she's showing off or excited about something, but can't find the words to express herself, so instead she gurgles and makes super animated Groucho Marx expressions with her little red eyebrows...so, what we usually think of as cute and very 'Charlie' was actually difficulty breathing and managing her secretions this time. It's so hard being a first time parent with a sick child and trying to figure out what's normal and what's not, what's just Charlie, and what's cause for alarm?

Anyway, I was up all night and swapped with Matt at 8am this morning and went and slept in Charlie's room/the guest room. We were meeting with a Social Worker at 11am and I wanted at least a couple of hours sleep before we began discussing feelings and Charlie's condition. I NEEDED sleep to handle and process those things. When I (barely) woke up, Matt and I fed Charlie and noticed that her nose was really runny and her breathing sounded more labored than usual, we still tried to convince ourselves it was due to her teething, but after awhile neither of us were buying that weak explanation, and we just knew it was a cold, a cold that we had managed to outrun for 11 months since her diagnosis. It was a sad day at our house today, it felt like the first domino had fallen. Even though we knew it was inevitable that Charlie would get a cold, we had let ourselves down. We failed. When you out run something that long, I think you start to believe your invincible, but, the truth is, it probably wasn't so much of what we were doing all along, but it probably had more to do with luck as to why Char hadn't had a cold yet. Yes, we kept our hands clean, bathed her often, kept her away from sick people (to the best of our ability) and cleaned out her nose on a regular basis, but it wasn't going to work forever...even a great goalie can't block every goal from getting in...colds and germs are relentless, and they'll sneak past you when you least expect it. That's not to say we won't remain diligent in protecting Charlie from germs in the future though...actually, we'll probably become even MORE protective of her.

My friend Christie asked me a few weeks back, "So, what actually happens to Charlie when she gets a cold?" And I explained it like this: The first one or two colds probably aren't actually going to be her end, but, it works more like strikes...each cold Charlie gets works as a strike against her. She can't clear or move her secretions very well, so they just build up, making her more weak, more prone to infection, and less likely to handle the next cold. I sort of think of it as her lungs starting out as an empty glass that slowly fills with fluid, one cold at a time, until it overfills and isn't able to do its job anymore. So, i guess, we're on strike one.

Rewind to earlier today...Matt and I were talking to the Social Worker when both of us became more honest about our feelings about everything that's been going on, than we've been in a long time. It's been a long time since we've been in the presence of a neutral party who's sole purpose was to delve into our emotions and figure out what we we need as individuals and as a couple in the middle of a very sad situation. Matt and I seem to forget that. We are almost used to feeling alone and disconnected, and we're getting used to having a child that we're told will never really move, and won't live long. It's REALLY sad, yet we seem to think we're just supposed to buck up, put on a happy face and get over it and move forward. I often feel like I'm in a bad made for TV movie about me, and starring me...it just doesn't feel real half the time, and when it does, I feel like I'm being too dramatic about it all, and I think, "Jesus Cherie, it's been 9 months since her diagnosis, when are you going to stop talking about it and move on with your life...wah, wah, wah!" Really. I confuse myself as to why we can't just be happy she's here still, and keep on keeping on. And Matt feels the same. I realized today when we were talking to the Social Worker that we have a lot of similar thoughts, but we don't share them with each other, and it alienates the other and contributes to our own individual inner guilt, allowing it to fester and grow out of control, building shame and anger. For example, I LOVE Charlie, Matt LOVES Charlie, but today it came out that we have both, individually and secretly, thought, "Please end this soon so I can take off and start a new life and try to forget this one ever happened." Not something you really want to share with your partner, not something you really want to keep to yourself either. And no matter how guilty and ashamed it's made me feel to think, it felt good to know Matt has felt the same way too...let's us both know it's natural to feel that way sometimes. But, now that she's actually sick, we're feeling ashamed and guilty again, wondering if the universe heard our thoughts. If so, we didn't mean it!

After the Social worker left, I cried some more, got myself together, told Matt to call our pediatrician, knowing full well we'd soon be headed to Children's Hospital, and went and took a bath and a nap before packing our bags. I know how it works now, here at the hospital, Charlie fusses all day and night because it's an unfamiliar, yet familiar place, because people are poking and prodding her, she sleeps with me at home, so I end up 'sleeping' in a tiny crib with her, spending my night adjusting the machines she's hooked up to, to stop/avoid the random beeping in the middle of the night that without a doubt will ALWAYS happen..ALL. NIGHT. LONG. When we got here they took a chest x-ray, took a sample of Charlie's mucus and blood, and put us in our own room in ICU. Then they went over the DNR (do not resusitate) orders with us, and asked us what we wanted to do if a situation should ever arise where they needed to perform CPR or put certain machines on/in her. I honestly don't even really remember what I said, I seem to blank out in those situations. But, holy...the hospital makes me cry EVERYTIME! Its a reminder of how serious Char's situation really is, and of how many other little sick kids there are too.

As for her cold, so far she's doing OK. She's so tough. She's actually still up, at 1:02am, singing and watching Elmo. We/they have just been monitoring her blood pressure, heart rate, breathing, and suctioning her secretions, seeing what, if anything happens next. Hopefully this is the most extreme the cold will get, and she'll get over it quickly without any complications. Please send good, positive, happy thoughts Char's way.

* Just found out that we're here for at least a few more days. They are worried Charlie could form a 'mucus plug' which she could choke on. She'll be on her bipap (breathing machine) full time, and they are performing chest physio a few times a day on her, trying to loosen things up. Again, the doctors went over what our wishes are regarding life saving techniques...and it's got me emotional. We went over the positives and negatives of all the possible interventions, and it really hurts to think about...the doctors have warned us that a seemingly happy and healthy looking SMA baby can go from good to bad really fast, and without warning. Hopefully we're a long way away from any major decisions having to be made/carried through.

Happy 15 month birthday Charlie! You're a very strong and brave little girl, and we love you so much!!



Wednesday, September 15, 2010

Go Charlie Go!

(Charlie, 13 months)













As i've mentioned before, I have an issue with tears. Whenever I get emotional or upset and cry, I always make an excuse for them. I'm totally the kind of person who blames things like onions for springing the leak...which, is always, in retrospect, even more embarrassing then just saying, "Hey, I'm sad, I'm crying." case closed. But, NOOOOO , I have to come up with excuses like: "Oh, can we hurry up here (while crying) I have PMS" (this was said on my wedding day) or, "I'm just really tired and I haven't eaten much today." (which I said this past weekend after I finished the Adventure Challenge, and my friend Sarah whispered in my ear that she was very proud of me, while hugging me, which pushed me right over the edge and broke the seal.) I usually try to avoid things where I know feelings will have to be shared. I have friends that live in other provinces and countries, and when they've been in town and they are on their way back home soon, I intentionally avoid the last get together or phone call, so I can avoid the hugs and mushiness. Sad but true. I've realized that the more I make excuses for my tears, the less I release, and then the more I "leak" at the strangest times...like, "why the hell is she crying, she just bought a slurpee and a People magazine?" kind of times. Luckily, Charlie coming along has changed things, but I still have a long way to go. I'm currently challenging myself to give more hugs (which although still scarce, have doubled since her birth) and to cry when I want to without making excuses for it.

The Adventure Challenge was amazing! I ended up raising more than $10,000 and my team almost $14,000. We were in first place for sponsorship as a team and as an individual. It was much harder than I thought it would be, but so worth it. What a rush it is to push yourself past your comfort zone and complete something you've been planning to do for months. AND, I won a beautiful bike that I'll be using to train for next year with!

But, with the end of the Adventure Challenge, comes the beginning of too much time to think on my hands. It isn't just for Charlie and 'the cause' that I've been busy writing to the papers and competing in the Adventure Challenge for...I HAVE to do these things or I'll just drown in my thoughts. Helping her helps me. I totally get why people who experience tragedies often change their lives for the better because of it...if they don't, then what? To me, when you've gone all the way down, down, down, there's only one way left to go. And, I don't even know if it's a completely healthy way to be or think, because I imagine that sitting with yourself, and really working through your thoughts and feelings is probably healthier, but hey, this works for now, and when it doesn't, I'll check out my other options.

We took Charlie to the doctor on Monday and today. They wanted to do a swallow test on her. At first we thought it was to see how her disease has progressed, but then we were told it was so that we could, if things looked good, start giving her tastes of food. In order to perform the test they need to put fluid in her mouth, which is risky in itself. So, Matt and I discussed it and we decided against it. It's been four months now since Charlie has eaten orally, besides the odd smear of birthday cake icing, so why would we start now, knowing that SMA is a progressive disease, meaning things will only get worse from here. Charlie seems happy with her tube feeds and we don't want to introduce tasty foods, just to take them away from her again in the near future. Is it better to have tasted and to never taste again, or to never have tasted at all? Hmmmm.

SO...Charlie, despite the weakness in her arms, has now officially learned to wave! I don't think I've ever been more proud! It also happens to be the cutest wave I have ever seen! It's things like these that keep us feeling optimistic for the future...seeing progress in Charlie, regardless of a medical diagnosis that prepares us for the opposite, makes us beam brightly with pride and love. Go Charlie go!

Here is a the link to the Adventure Challenge video and Global news interview:

Adventure Challenge video:

Global news (click on 'sat/sun news, then on the 'grand fondo' video:


Wednesday, September 8, 2010

Everything happens for a reason?

(Charlie, 14 months)

















I've used the term, 'everything happens for a reason' without thinking about what it really meant, for as long as I can remember. Usually it's my answer to things like break-ups or losing jobs...and quite often I've said it for lack of a better answer. But, I would like to think the universe has a plan for us all and it's our path no matter how hard we try to deviate from it, and it's filled with only the best intentions. But, if that's actually the case, then why would we have to suffer through cancers, abuse, divorces, homelessness, war, poverty, natural disasters...and Charlie being sick?

When Charlie was first diagnosed and we were told she probably only had a few months to live, there was absolutely NO way I was thinking, 'everything happens for a reason' on the contrary, I was thinking something more like, "f*ck you universe! you suck and you're evil!" But, as time goes on (and of course, it helps that she's still here, and I could and probably will change my tune in the future) I can sometimes begin to believe that 'everything happens for a reason' again...but only on the good days. It's still mean, and it still hurts, but sometimes I think I'm getting it. My life has more meaning, and I'm a better person because of her...and, I have to believe that it's all happening for a reason.

We were out for dinner tonight with our friends, Mike, Kim, and Dana. Kim and I started talking about this, 'everything happens for a reason' theory, and we were both pretty much on the same page regarding it. I trust that Kim knows what she's talking about because she lost her mother to cancer several years ago after taking care of her for months, while her mother struggled painfully through her final days. If she says she can still believe things happen for reason, it really gives me hope. She's been there... she's hurt so bad, and felt like her mother was stolen from her way too early, but she's come through it with a changed perspective and a beautiful outlook on why these things happen sometimes, and she uses her situation and pain to relate to and empathize with others (such as myself and Matt) in similar situations ...and I feel immense relief just knowing that it's possible to lose someone and miss them dearly, and still carry on.

I would not be who I am today if it were not for Charlie. She came here to teach me and Matt and YOU about ourselves, and to show us what's important, and what we're all capable of. My friend Cindy called me the other day after she'd read the newspaper article about the Adventure Challenge and the fundraising me and my team mates were doing for Canuck Place. Cindy told me she was proud of me and reminded me of how, when she came over shortly after Charlie's diagnosis, I had said to her, "I'm not one of those mothers that fights with the teachers or doctors to get the best care for my child, I'm not the type to 'do something' ". I did say that. But, I had underestimated the power of the mother/child bond. I have since 'fought' with doctors, and I have since raised awareness about SMA, and...I'm doing a TRIATHLON for a children's hospice on Saturday! Who am I?! I don't even recognize myself anymore, but I like this Cherie more than the one that existed before Charlie. It's bittersweet though. I'd take the old Cherie and a healthy Charlie over this 'new and improved' Cherie and sick (but GORGEOUS!) Charlie, any day!

And so continues my love/hate relationship with 'everything happening for a reason'.