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.