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'.


Sunday, September 5, 2010

Reaching out.

(Charlie @ 13 months, Photo by Randal Kurt)

















The past couple of days, after the articles came out, I've received some very touching emails. Some were from people who wanted to let me know that they had read the articles and were keeping Charlie in their thoughts, and some were from people sharing their experiences of SMA and loss and similar painful situations. As much as I wouldn't wish this disease or any other illness that plans on taking someone's child from them long before their time, on anybody else, it's very comforting to know we're not alone in this situation, and I think they feel the same way too.

I'm posting two emails from two different women (I asked them for permission first) that really stuck out to me and makes talking about Charlie and SMA publicly, no matter how painful sometimes, totally worth it. It's nice to have people to lean on who can understand what we're going through.

These are the stories of two incredibly strong women that I hope can make someone else reading this, in a similar situation, feel a little less alone as well.

Hi Cherie,

I came home from work today and the first thing my husband showed me was the Province. I saw you and Charlie on the front page and read "Brave Baby" and wondered what happened? Then I read further and realized that your daughter has the same thing my son had. My son Marcus was also born with SMA and was also a type 1 diagnosis. Marcus was born on May 29, 2006 and diagnosed when he was 4 months old that he had something called SMA...we had no idea what it was and how serious it was. In short, our dear boy didn't live very long even though they said he'd have 50% chance of surviving until he turned 2...is that what they still say? Marcus was 7 months 1 week old when he died. He died on Jan. 5th 2007.

When I first found out that Marcus was going to die, I told my husband that I didn't want anymore kids because I didn't want to take the chance of having another SMA baby. But after Marcus died, I realized that I had to give Tia a sibling. Marcus was my 2nd child and Tia was my first. She was only 2-1/2 years old when Marcus died.

It took 6 months before I felt ready to try again and the second month we tried, I was pregnant. But 6 months later I had a miscarriage. We waited a few months and then tried again. The second month I got pregnant again. I was happy but I was scared. My doctor suggested I do the CVS (I think that's what it was) at 11-1/2 weeks because I wanted to find out if this baby had SMA or not. We made the CVS appointment for Wednesday but I had to go get an ultrasound done on Tuesday before the procedure. So I go to he ultrasound place on my own (husband was working) thinking it would be a quick appointment. I start getting nervous because the technician is taking longer than normal. I thought "my goodness...is the baby not growing? Am I going to have another miscarriage?" I couldn't wait any longer so I ask her "is everything ok?" She says "I'll be done in second." Finally she turns the monitor so I can see and starts moving the ultrasound gadget on my belly and says "here's one heart beat....and here's another...you're having twins!" Oh my god...I just started crying. The technician got worried and asked if I was ok and I quickly told her that I had a son die when he was 7 months old so to now be told that I was having twins was a miracle. Unbelievable right? I was happy yet I was scared. What if one of them had SMA? I have a 1 in four chance of having another with it. What if both babies had SMA? What would I do? It was so scary. Since having the CVS procedure would increase the risk of miscarriage, we decided to wait until I was 15 weeks and had the amnio done. We then had to wait another 4 weeks to get the results Man, those were the longest 4 weeks...but we were given wonderful news that not only did neither of the babies had SMA, I was having one boy and one girl. I was thrilled. Not that the boy would replace Marcus but I was happy that I had another chance at raising a boy...this one without SMA. The twins were born on Feb. 19th, 2009. Jake was 6 lbs 13 oz and Katie was 6 lbs 11 oz...both very healthy and no SMA. Today they are 18 months old and healthy. Tia is now 6 years old and is a wonderful big sister. She only remembers Marcus through pictures but she'll never forget her little brother. We always tell Jake and Katie that they have a big brother too. We don't want none of our children to not know Marcus so we make every effort to talk about Marcus and remember him. He too was our little angel and we like to think that he gave us Jake and Katie.

Losing Marcus was very difficult but I stayed strong for Kent and Tia. People were amazed at how strong I was but when you're told that your child is dying and there's no cure, you just need to stay positive and enjoy every single day you have with your child. I just want to say, stay strong, enjoy every single day your have with little Charlie and stay realistic.

It was so hard when he died but after the first year it got easier. I think about him all the time but try not to talk about it with people cuz I start crying...like I am now. I miss him dearly but I know he's in a better place. If this didn't happen I would have Jake and Katie right? But I wish I didn't have to lose Marcus to get Jake and Katie.

Sorry I just rambled on and on about stuff, but I just wanted to send you an email to say that I understand what you and your husband are going through cuz I went through it already. I'll think about you guys and Charlie from this day forward. Take care and cherish every moment you have with her.

Sincerely,

Julie


And here's the other letter...


Hi Cherie,

My mom came across your newspaper article today and passed it on to me. I have been at my daughters bedside in the NICU at BC Women's hospital since her birth over six months ago, Gemma was born with a neurological muscular disorder. They first believed her to have SMA type 1 but the results came back negative and she remains undiagnosed. As with you and your husband, it is a rare genetic disorder that we have passed down to her even though we have no known history of muscular disorders in our family.

Gemma does not have the regular path that most children with muscular disorders have, which is to be born somewhat 'normal' and then get weaker over time. Gemma was born extremely week and has gained quite a bit of strength over time but is ventilator dependant and has low muscle tone.

Your story is inspiring and helps make me feel like we aren't so alone in the world, especially when you wrote about how it feels like these children are 'trapped in their own bodies', that really hit me because that is how I have described Gemma to others. She lives mostly through her eyes, looking at everything and trying to use the strength she has to touch and grab at things.

We have been involved with the Canuck Place as well, they have come to the hospital to see Gemma and be involved in some of our meetings. They consider children with muscle disorders 'terminal' as you know because they are expected to have a shortened life and Canuck Place is involved as palliative care. I was so scared to have them involved at first, I thought they got involved just to try and convince us of 'ending care' by extubating Gemma but there is a lot more to Canuck Place than I thought.

We have decided to continue Gemma's care and let our daughter decide her path. She has come so far and we will do what it takes to help her as long as she is comfortable.

Even though I don't know you I feel like I know you already, I can really connect to your life and what it is like to be in this position. It is so devistating as a mother and first time parent but even with the heartache I am so happy, I love her more than I could ever describe and know that she is here, as Charlie, to teach us all something. They are the most innocent, beautiful souls that will have more meaning in their short lives than we could ever hope for in a lifetime.

Thank you for sharing your story and your blog. I started a blog recently that just has e-mail updates that I had sent family but it gives others a better idea of what Gemma has gone through and to see her pictures ( http://gemmabostik.blogspot.com/ ) If you are on Facebook please feel free to add me.

I hope that we can be in touch, take care and hugs for that beautiful Charlie girl :)

xo Amanda

Thanks for sharing your stories ladies, means a lot to me. Much Love!











Friday, September 3, 2010

Muchas Gracias!

(Charlie, 13 months. Photo by Randal Kurt photography)

















This past Wednesday I decided to write a letter to some of the news outlets around Vancouver. I wanted to bring attention to Charlie and SMA as well as the Adventure Challenge my friends and myself are taking part in on Saturday, September 11th. By Thursday morning the Vancouver Province, Vancouver Sun, and City TV had called back! I knew that this issue and the challenge would make for interesting news, but I certainly didn't expect three outlets to call me back...and so soon! AND, both of the newspaper articles were out by this morning...and we were on the FRONT PAGE of the Province! So amazing!

Starting at around 10pm last night, after the online versions of the interviews were released, my email, my blog views and comments, and my sponsorship for the challenge began to blow up! Amazing what a little press can do! I want to thank everyone who's sponsored me, everyone who'd like to sponsor me but can't afford to right now, everyone who's emailed kind words and good thoughts, and everyone who is rooting for my family...I love that you love Charlie, but I can definitely understand why! She's an amazing little angel who has proven she's here to change hearts and lives.

Please watch City TV Monday for our interview from Canuck Place Children's Hospice.
I will leave links to the two newspaper articles and the adventure challenge sponsorship page, below. Thanks everyone!








Wednesday, September 1, 2010

That's what friends are for.

(Charlie, 14 months old)


















On Monday my friend Christie and her daughter Dani came over for a little visit. Christie and I have been friends since we were 12 years old and were pregnant with our girls at the same time so we have an extra special connection with one another and each others daughters. When we were pregnant we would often discuss our adjoining futures...our kids were gonna go to the same school, be best friends, have sleepovers, we were going to swap free childcare...so when Charlie was diagnosed, both of our dreams were shattered, Christie was almost as devastated as Matt and I were...as sad as that was to see, it felt good to know and see that someone was as attached to baby Charlie almost as much as Matt and I were. I felt loved and understood. Christie has been super supportive of everything that we have been going through since Charlie's diagnosis...she is always the first one at the hospital to support us, as well as the first one I call when I'm feeling really upset about it all. I read a quote on one of the grief websites I frequent that said, "You will be surprised at who will be there for you, and you will also be surprised at who will not." And, I can totally agree with that statement. I am surprised at who is not there for Matt and I, but luckily, I'm mostly pleasantly surprised by who is...and Christie has definitely surprised me in wonderful ways. Thanks Chris!

Christie had a very difficult delivery with Dani, and because of that, Dani now suffers from chronic bronchiolitis. Whenever she gets what is considered a minor cold to most children, it quickly turns to bronchiolitis, thereby sending Christie and Dani off to Children's hospital yet again. Because of this Christie has always been VERY careful about monitoring Dani's health and letting me know if it is unsafe for me to come around with Charlie. This past Monday was the first time the girls had been indoors together since mid May. But yesterday morning Christie texted and called me so upset because Dani had woken up with a cold that neither of us saw coming. While she was feeling bad for me, I was feeling bad for her...and terrified for Charlie. You see, if Charlie was normal I'd seriously let her share ice cream cones with other kids, but she's not, so every sneeze, every cough, every clearing of the throat I hear, sends shivers down my spine. So, we quickly stripped our bed, did all the laundry, bathed Charlie, used a saline solution to clean out her nose, cleaned the house, and now we're waiting...but, so far, we're good. Hopefully Charlie is OK, and if she is, I'll actually be glad we had this scare...it showed us that we were getting a bit too lax with Charlie's care and that we need to reevaluate our precautionary measures, both for us, and our friends.

After we hung out at my place for a bit, Christie and I headed to Urban Fare for coffee. When we were sitting down talking, Dani in her highchair, Charlie in her stroller, I looked over and saw a young couple laughing at Charlie...I looked at Charlie who was just staring at the fan overhead, and then back at the couple, the guy looked at me smiling and laughing and said, " She looked all distressed there, she was just breathing all heavy, and looking all over the place." Did I mention he was LAUGHING?! I smiled uncomfortably and just turned my head in Christie's direction and she quietly said, "ummm awkward." "Yup." I said a little shocked. Who laughs at a baby who's "distressed and breathing heavy" but, at the same time, I know they didn't mean anything by it. Christie and I just thought, "Wow, we could have just ruined their day by saying....." But, we didn't. And that's the thing, uncomfortable situations like these arise often, and I always find myself trying to protect the other persons feelings, when what I really want to do half the time is just explain what's going on with Charlie and get it out of the way...but, at the same time I derive secret pleasure from Charlie still appearing 'passable' to most folks. Often people just think it's Charlie's quirky character that makes her stand out or exhibit certain behaviors...like the woman on the elevator the other day who said, "look at her just giving me the peripherals", not knowing that Charlie can't actually turn her head to look at her and has to stretch her cheeks flat and make that little thinkers face while looking out of the corner of her eye to get a good look at you. But, we just smile and nod, because 30 seconds on an elevator just isn't the time or place.

The Adventure Challenge is in 10 days! There are now four of us ladies on team "Charlie's Angels" With over 8500$ in donations and more on its way! We are in first place as a team and I am in first place as an individual...and the competitive part of me is so proud of that! I will be sure to post the details soon after the race, and knowing me, probably a little video too. Time for bed, I've got heavy training in the morning.