It's been an emotional, heavy couple of weeks, but I'm happy to report that things are starting to look up.
A couple of weeks ago Matt and I began arguing a lot, and although this isn't exactly uncommon for us (we've both been linked to the terms: fiery, stubborn, hot headed, and control freak) we had been doing pretty well since Charlie's diagnosis. We had come to the conclusion that life is too short to sweat the small stuff and realized that we needed to come together to support each other and Charlie during this difficult time in all of our lives. And things were good. We felt more connected, more in love, and more understood by the other, than we ever had before. Really. I mean, if we failed each other and didn't/couldn't make this marriage work, who else on earth would ever understand what we had been through, we both thought. But then slowly but surely the weight of everything that's been going on started to make both of us double over in shear exhaustion...we couldn't carry it anymore, and we started cracking. We were having a lot of ridiculous arguments and were wondering if it was even worth sticking it out for anymore. We both kind of felt like we were carrying this excruciatingly painful burden around and the other one wanted to hop on our back too. We need to be strong for Charlie...but each other too?! C'mon! Give me a break! I've been known to get impatient and lose it when the waitress at Earl's seems to ignore me and doesn't ask me if I want another drink or not (to my friends at the table, I'm respectful to the servers, I used to be one:)), but I'm supposed to take care of a terminally ill child and Matt? All while remaining calm and patient?! How?! And I know Matt has been feeling the same way...thinking, I'm financially supporting this family, loving my daughter, attending every appointment, and you still want to nag me? No. I don't think so. And that's where we both stood. No. Nope. No can do.
When the dust settled, we just let our outbursts be and moved on. This is probably the most painful and stressful situation anyone will ever go through, so we have to make allowances for that. I've also been giving Matt a lot of nag free time to make music and go for long bike rides. He seems really appreciative of that and is supportive of me going away to the Gulf Islands for a few nights with friends while he watches Charlie, and then he'll be going to a wedding on Hornby Island and will be gone for a few night himself...although we have been discussing Charlie and I joining him as well, we're just a little weary of being trapped on an island with no hospital...but our pediatrician is supporting our decision to go...so we'll see if we're feeling brave enough or not.
Speaking of doctors...we took Charlie to see a dietician last week who, when we told her our reservations about skipping Charlie's night time feeds (there have been studies indicating it is dangerous to fast SMA children longer than 4 or 5 hrs, because they can be depleted of some of the little muscle tone they do have, but the doctors are concerned she could asphyxiate in her sleep) she was very nice but kept insisting that she understood SMA and had worked with children with SMA and although she had read the studies Matt had sent our pediatrician, they were not published, so the medical profession does not subscribe to them. Anyway, by the end of the appointment she pretty much had me convinced that Charlie would be totally fine to go a full 8hrs or so without food, no problems. "Just feed her whenever she wakes up." she said. "She'll know when she's hungry." Made perfect sense to me I thought. I made mental notes of her points and decided to convince Matt on the way home that Charlie can go without food during the night and that she'd be just fine...until we were just about out the door and she asked all excitedly, like from one doting mother to another, "Soooo, is she rolling over yet?!" Matt just looked at her annoyed, and in a monotone voice said, "No, she won't be rolling over, she has SMA type 1." All this while Charlie had been splayed out on an examination table, almost motionless, all day (it had been a 6 hour appointment with all of the specialists) And that was that. I have no problem with a specialist or doctor telling me they need more time to research what I am inquiring about, but I do have a problem when they insist that they know what they are talking about and give suggestions and advice when they are not sure of the implications of it, possibly putting my daughters already poor health at risk. We left and thought to ourselves, "We will always care for Charlie OUR way". We're not anti doctor, we just think that because SMA type 1 isn't very common, and children usually pass away in the first few months, that often, the doctors are learning right along with us. I do want to say though, that other than a few snags, the health care system has been very helpful and supportive of my family, and we feel very fortunate to live here in BC.
Almost every sunny day I take Charlie for a walk, especially this past couple of weeks because I've been feeling low. I was telling Matt last night that I feel like Forrest Gump lately...I can't stop walking, or biking or running (run Cherie run!). Matt has been the same. Sitting still sucks. That's when the realization of it all sinks in. That's when it hurts. So, anyway...I like to walk with Charlie and every sunny day I take her to Cooper's Park in Yaletown and I lay out a blanket for her with Raffi pumping on the ipod. We both just lay there smelling the fresh air, singing and playing with the grass. This past Monday when we were there a woman pulled her stroller up about 10 feet from us and set up her little piece of heaven with a blanket and some toys for her little girl. She made eye contact with me and as much as I wanted to connect back, I was hanging by a thread that day, and knew that even a 'hello' could start the waterworks, so I did my best to avoid making direct, prolonged eye contact back. I finally gave in because I couldn't help but feel comfortable with her (and probably because I was secretly longing to talk to someone) even if we'd never actually met before. I walked Charlie over, trying to be jolly, and introduced the kids. She looked at me concerned and said, "Is she OK?" I began to mumble and try to explain.."SMA...blah, blah, blah, terminal...blah, blah..." She put her hand on her mouth and said, "Oh my god! That is the worst thing I ever heard!" And started crying...I did too. She motioned for me to sit down beside her, and we cried a little more...I would have BAWLED if it wasn't for the fact that I couldn't help but notice the people around us noticing that we had just met and were now crying which made me feel embarrassed and exposed, so I did my best to contain it. We chatted a bit, and it felt good, and then her friend and her baby showed up, so I excused myself and strolled home and told Matt about the lady in the park and my public tears. The next day I went back to the park hoping to see her again...she showed up about 15 minutes later and sat down with me and told me she was hoping to see me again too. So, we're friends now! I'll probably see you tomorrow at the park Caroline!;)
In other good news, a couple of weeks ago I received an email from a woman named Meralon. She had been to the maternity store "Room for 2" on Commercial Drive and the owner of the store had told Meralon and her husband Randal about my blog. They went home and read it and then emailed me saying that Randal was a photographer (Randal Kurt Photography in Kitsilano) and that they would love to take my family's photo's...no charge! So, we met them today in Queen E Park (they told Matt and I to pick a special place to us) and got our family photo's taken. They are lovely people...they made us feel very comfortable and you could tell they were enjoying their time with Charlie. AND Charlie was in the best mood ever...smiling lots, cooing, giggling, just thoroughly enjoying herself. What an amazing gift they gave us! They have sent us one picture from the shoot (above) and we are going to meet them next week to see the rest. Can't wait!
As I said in a thank-you email to Meralon and Randal today, Matt and I are still in awe of how such ugly circumstances have brought out the most beautiful qualities in people. Thank you new and old friends! We need you and we love you.