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 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 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, 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’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.