Wednesday, November 25, 2015

On feeling heavy

I'm feeling the weight of things this week. I feel all heavy and sad and cranky and I hate it. I don't want to be that person! But then I think maybe I need to feel all the things sometimes and just let it all out. 
Lucky you, you get to take it because sometimes it's easier talking to no one in particular rather than an old friend or a new friend or a Mum friend or a Husband or mother, you know?


We had clinic last Monday and I was that Mum who just showed up, no questions in hand. Baby is so fine and well! What questions could I possibly have to ask? I had none. I did have Nick with me for the first time in months though so I was feeling pretty confident that we'd just ace it and walk away. 

We found our friend from the CF Association there! And a new physio! and a few of our other team members who we haven't seen in a while. A few things from clinic that have me; 

CF Association put us in touch with other CF families, finally! Different physio recommended different schedule/techniques. I open up more to the social worker then I do to the paediatrician (not surprising). Gastroenterologist and dietician on different pages. Clinic took five entire hours, plus some. Paediatrician had a cold? I thought surely allergies? No. A cold, and no mask. 

Now more things:

Getting in touch with other CF mums has thrown me for six. They go to a different hospital entirely because there is better care available for our kids. How was this a thing I didn't know about? They use more preventative methods and medicines. Am I causing my son damage because I've had my head in the sand about this? They're all over the diet, the keeping away of germs, the proactive approach. They're ahead of us by at least a year but I still feel so many things. Mostly terrible things. I even feel guilty justifying that, I feel like I should just be there with them, doing all the best things for our son. 

Tears. 

Last Tuesday afternoon Dash started getting his first cold! A six month old with his first cold might be pretty good you say? I say not so much. We've been very good and steering away those germs. Very insistent that anyone who holds him first squirts their hands with sanitizer. 

So when I see this cold and think back to the only germy person we've been in contact with, I immediately hear alanis morrisette because isn't that ironic? 

Fast forward to yesterday. I call our head nurse and actually tell her what I am feeling. I am not one to complain or oppose or ask for more. But I did, because this is not about me. I mentioned that Dash had been sick since last week amongst the cries of 'I'm feeling very unsupported over here'. She said well bring him in! Can you be here in an hour? 

And isn't that the most ridiculous thing you've heard? Taking baby to hospital because he has a cold? An actual cold this time, I know it because the only trouble he has breathing is caused by snot. But to hospital we go for a sputum sample and thorough check because there is always a chance of something sinister growing in that mucous and the quicker we kill it the better. 

Now to all of the thoughts (yes, there's more)

why is his team providing conflicting advice? Why can I not get his creon dosage right? Why does the PBS line give my doctor a hard time for ordering repeats of our medicine? Will the other hospital be that much better? Why am I not doing more for my son? Where can I get more information? Why do I keep pretending he actually doesn't have CF? There will be no call saying this is a mistake but I am still waiting for it. What on earth do I feed my son!? Why can't I organise dinner? Why is my house already a mess after our spring clean? What will he think when he looks back at his childhood? Is giving him a sibling actually in his best interest? How will we afford to buy this sibling? I do not want to buy a baby. Why can I not get to bed before 12am?

I could go on and on and on and on and on. 

Also the girls had date night last night! I didn't go. Surprise!! I have a lump in my throat whenever I think of it. I went to watch Nick play basketball though. Dash screamed so loud the coach yelled Shoosh Dash! Seriously. I can't remember the last time I exercised. I would kill to exercise. 

NOW

Woe is me. I have a beautiful son and husband and a messy house that is full of work and opportunities and Christmas presents. I have dogs that I can walk and shoes that I can wear. I have eyeballs and a brain and can absorb information.

But still, it's the week of heavy feelings and I suppose that just has to be okay today.



1 comment:

  1. Oh Carly, sending a big dose of love your way.It's definitely okay to feel all of the things but I do hope this week has been brighter and less heavy. Conflicting advice for dear Dash must be tough, people will always have conflicting advice for him, which will be frustrating so go with your gut on that one and you'll find what works best for you and baby. Never doubt that you're not doing enough for him, I can only imagine what a sweet loving caring mother you are. You are amazing! xx

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