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Tuesday, August 9, 2011

support?



I don't even know where to start with this one...maybe at the beginning.

I love photography. Not just taking photos, but looking at them. My own, friends, artists. Ask any of my friends, I'm always the one with the camera. I managed a photography studio for many years. When I look at a picture, it takes me right back to the time it was taken, emotions and all.

Since Ruby was born, I sometimes choke up a bit looking at peoples professional newborn pictures. To me, they represent how the post-natal period should be. Warm, snuggled, safe, perfect. Things that our family missed out on. It's just a reminder that life turned out different for us. It's not a bad thing that I get like this, I don't throw things at the screen when I see a new bubba! But I do sometimes get that pang of "oh, I wish I had that".

There are many chat/support groups on Facebook for people affected by CF. One of them is called "Get it off your Chest" and it's supposed to be a place where you can say what you're feeling.

Apparently not.

I posted in it about how I was how sometimes looking at these portraits sometimes niggles at me and how it reminds me of our experience. Well somehow on the screen it must have come out as
Geeze, my life sux! I can't believe that CF stopped me having cute photos to hang on the wall. I wish I didn't have Ruby, as not having any photos is sooo tragic that surely nothing else could even compare!!
Or something like that. Because the reaction I got was not what I was expecting. I was told by other CF mums that I should be grateful for what I have, and how "they wouldn't change anything" (like I was implying I would). I was sworn at, and told I was whining about stupid things.

I tried to explain that I'm not so shallow as to have a cry about missing out on nice photos, but about what type of emotions it bring up to me to see others photos.

Made no difference. Got told I should stop writing and f#@k off. So I stopped. I couldn't believe that I could be so misunderstood. Total feeling of frustration.

I checked back a bit later on and saw that Maddy had left a comment. She is 20 years old and is at the end stage of CF. She wrote this
"Ey everyone- this is called 'Get it Off your Chest' for a reason. Just because someone is going through something 'lesser' than yourself- you shouldn't look down on them. Lay off Danielle, she was only saying these 'perfect' pictures are her symbol of what ruby's birth wasn't. It wasn't the "STANDARD" birth where there's a mum and a dad and a smiling nurse and a "HERE'S YOUR BEAUTIFUL BABY BOY/GIRL!" photo still where everyone's beaming and saying "He or she is so beautiful- they are perfect, a perfect HEALTHY BABY" well done sperm and egg! You have A HEALTHY BABY ALL IS WELL. The poor girl is saying for her it was a mad rush of get this kid into ICU- humidcrib, stuck with iv's whatever happened to her- it was the beginning of her CF journey- and who wants to start that? If choice be given, you wouldn't want your kid to start that journey- or anybody to start that journey- because I tell you there's a lot of SUCK in this journey. I'm sure like any of you good mothers- you wish the best for your children..and Danielle only wished the best for Ruby- and ruby was born with CF- and that isn't the BEST possible outcome. Don't apologise, I didn't realise that "Get it off your chest" came with a list of no go zones either. She never said she wasn't grateful for Ruby- and we can't all be a ray of freakin sunbeam ALL the time either! We all have our off days, hell when it gets really bad- we can have off weeks- maybe even off years..we should all SUPPORT each other? Even if one of us is whinging about a sore throat. You'll be a better person for it..maybe. I think everyone saying they weren't offended is a bit of a fib, going on the general consensus of "oh my god appreciate what you have" thing going on there. 'Taking the higher ground' doesn't mean pretending you weren't pissed by what people are saying.?

And I thought, thank God someone gets it. I have also had a few other message of support since. But still, really opened my eyes to another side of the internet. The post quickly disappeared after that. I have since been "defriended" from a few people and chucked out of a few CF groups (including that one).

I'm still a bit baffled by it all...on one hand I know I shouldn't care what a bunch of strangers think of me, but on the other hand, I don't want people to believe that I am a dark, negative person. If you have ever read my blog, so will see my positive attitude I have towards life. 


I've never really had to deal with anything like this before...


 




19 comments:

shirls said...

Hi Danni, I can't believe people wrote that stuff about how your felt, that's dreadful. I am so sad you had to experience this. As I read the first section, I totally got it, even the next bit I could appreciate too! And how bang on is Maddy. I can't imagine that your words and feelings came across negatively, because I could picture the experience easily, and it didn't feel negative, but heart breaking.

Unbelievable. I totally don't see you as you write they might. Dare I be honest and say that looking at our newborn pictures doesn't necessarily fill me with "perfect" for all of that experience either, for various reasons, despite loving each child and those experiences with my everything. I think mothers who are supportive of us would all acknowledge some degree of this if they were honest with us, or at least be respectful and loving enough to understand.

Stick with us Danni, WE won't let you down. Love always xx

Penny said...

Hi Danni,
I'm sorry someone/someones made you feel this way. What do we do when we don't have a safe place to vent - or even just express our fears and often sadness for our children? I have been following your blog and Ruby's page for a while and nothing you could do or say would make me think Ruby isn't adored!
Sometimes those dark days come upon us. I know often I wonder "what if" or "what's to come". Not always fruitful, but very real fears and feelings.
And out of all that came your friend Maddy's comment. What more could possibly be said.
Take care xo

Anonymous said...

I agree with the previous comments. You should be able to express your thoughts & feelings without such negativity especially when they were posted in such a thoughtful way & were a reflection of love & missed opportunity. You are such a positive person & your live and care for your family, friends and others always shines in what you write!
Mez

Anonymous said...

Danni, I have already told you that I support you and understand what you are going through as I have those feelings all the time myself about my little CFer. It isn't fair and if you ask me they are being childish. Who would want to be in their stupid group if you can't express yourself freely. You know the people in the CF community who are supportive of you so from now on I say just PM them when it is getting tough at least they will get you and not judge you.

Kelly said...

Oh Danni, no. I am devastated that you had to go through this from the very community you turned to for support. I know how you feel about newborn photos and it is not only understandable but heartbreaking. I am so upset this happened to you!

People can be cruel. My only explanation is that these people are going through their own pain and don't know the real Danni we know. She is caring and compassionate - not only about her own family and friends but about a world of other people and communities. She is hardworking and inspiring, vulnerable yet strong, an amazing mother and wife and a great friend. She is funny and cute and positive, and you just want to be around her. She is our beautiful Danni.

Try not to abandon your CF communities, surely they are not all so short-sighted and cruel. As long as you know that we are always here for when you need a real, flesh and blood hug.

xox

renny said...

I'm sorry you were made to feel this way especially by people who should understand where you are coming from... since most are on the same journey.
I thought I would share that looking at new born photos of babies posing beautifully in little hats with flowers and rainbows, lollypops..... leaves me feeling sad too. The first photos of my baby involves huge scars, tubes, wires, bandages, machines, hospital rooms where all the smiles have fear behind them.
It's not right, it's not perfect and no body should 'pretend' that it is...
We can't go back and change it. We can't go back and give them that 'perfect' start to life, we can't give ourselves that. Yes, this makes me incredibly sad.
And not for a second do I wish that I didn't have my daughter in my life, do I not love her more than life itself. Did I not love her the second she was born, Thought that this road is not worth travelling.
Sometimes there are bumps and some times the 'why me','why her', 'what if' pays a little visit.
I know you and Craig personally and it's clear that you love and adore Ruby..and Eliza. You are wonderful parents.
The work you do for CF is incredible. You really should be proud of yourself. Don't let them get you down.

Kristi said...

Oh Danni, I'm heartbroken for you. Being vulnerable in the company of strangers and being brave enough to voice something and being slammed. I can see how it could harm your trust in others, especially those who are meant to be a support network. I'm so glad to have 'met' you, and you have helped me learn oh-so much about CF and the struggles it presents families (and I hope to continue my education!). You make such a difference to so many people, and I'm heartbroken that a community had an opportunity to make a positive difference to YOU, and didn't. Much love from my little cabin, I hope you can feel it xxxx

Tanya said...

That is the most ridiculous thing I've read in a while!!! There's absolutely nothing wrong with what you said & I wouldn't apologise for it. Obviously the people who wrote those comments never have a negative thought cross their mind, never get upset about anything, never get mad about their circumstances & are sooo glad their baby was born with CF that they are lining up to have more babies with fingers crossed that they have CF too.... & they are all obviously frauds & liars because I don't believe any of that for a second. I have a genetic condition too, that I have passed onto my eldest son - not anything as horrible as CF but none-the-less painful & debilitating (& not understood by most people)- & I often feel down about it & see other kids & it reminds me of what my child should be like. It's natural to feel that way & should be recognised as such. If you don't ever feel that way, I think you live in denial. It's hard not to be upset by what people think, but they are the ones with the problem. Everyone wants the best for their children - & health is at the top of that list. Keep doing what you're doing & join the groups that truly support - not the ones that live in rainbow land & eat you alive for daring to mention your true thoughts!

helen macnair said...

Danielle you are a beautiful, caring, wonderful mother. I think the ridiculous reactions were the other people's issues. Brave girl you. Chin up and keep on being you just as you are. People who matter know where you are coming from. We have a huge amount of respect and admiration for the way you are so honest and open and how well you manage despite everything life throws at you and your brood. Hugs and love and a million shining gold stars to you lovely, from the bottom of my heart. Helen xxxx

Sarah :) said...

Hi Danni!!! Thank you so much for sharing your thoughts with us...

I am so sad to hear that in a space that was designed for people in your position you were so misunderstood!
BIG HUGS!

I have not experienced the things you have but I can completely understand how you must have been feeling and what you were trying to get across...

I experienced something similar on a forum I thought was safe and supportive when discussing my sadness at experiencing an emergency c-ser... "You should be happy you have a healthy baby and so on..." Of course I was over the moon at having a healthy baby, but I was still sad that her entry into the world and the first week or so after birth was not what we had expected...c-ser, pain, humidicrib, difficulty feeding and so forth... any way...

It shouldn't matter how "big or small" our situation may seem in relation to others... Your (our) feelings are always important and need to be voiced and we all need to feel we have somewhere safe and supportive to do so!

I hope that we, through FB, can provide much support and you can always feel comfortable and safe to voice your feelings here, if nowhere else.

All the best! You are an inspiration! :)

Anonymous said...

Hey Dan. Most of these 'support' groups are far from what they say they are. I'm sure woman with huge DD's feel more support in a 12B bra with no underwire than how supported you feel. I too have had some horrible bedside' manner' by one which is a know all who know lots about nothing. You have the feelings you do no matter how wronmg they want to misinterperate them. They are yours and they are real and the support you have far outweighs the support you dont. its just unfortunate that we get snagged into these groups to come out feeling worse than before. Just keep feeling gorgeous, its what gets us through. From Your fellow CF Mummy who is always here, no matter what your thinken ;) xox

Craig said...

As Danni's husband I want to thank everyone who has posted on here and shown their support and kindness to Danni.

Over the past few weeks, I have watched and listened as Danni as been misunderstood, shunned and even belittled by people who don't know the Danni I know and love. The surprising thing is, that these people with a 'holier than though' attitude, who are dishing out their self righteous dribble, are other CF mums. Mums, who you would think would understand and be supportive. Obviously some of them feel they are the 'gatekeepers' of how someone should express their feelings and they believe they are the'oracles' of CF and its effects on families and individuals. I would describe them has self-righteous and even nasty.

Anyway, enough negativity, but I have seen the hurt this has created for Danni and needed to vent. I know there are many fantastic CF mums and friends out there who should not be tarred with a negative brush.

Thanks again for supporting Danni and thanks Maddy, your words expressed everything perfectly.

In support of what Danni wrote, I too feel sad when I think back to Ruby's first few weeks and the 'normal' things we missed with her. What normal parent wouldn't? At the same time I cherish the memories, love, challenges and experiences we went through and are still going through.

Danni,in the 12 months since Ruby was born you have been amazing. You have taken on the all challenges with your positive and selfless attitude. You have focussed on your family and the challenge of CF with a such a'can do' attitude, at times I don't know how you do it. The CF awareness Team Ruby has raised and the funds for research and care that have been donated have been phenomenal. Actions sometimes speak louder than words babe. You are the best mum our girls could ever wish for. If others can't see the true you, than its their loss.

I love you and love that so many people truly know that you are genuine, compassionate and not afraid to express your feelings. Keep being you!!

Erin said...

That Craig Of yours is a keeper lovely. Oh gosh Im in tears after reading what he wrote to you. All children derserve to have parents that share a obvious love that you two do. Well done to you both xx

Alexandra Madeline (Maddy) Barber said...

Lol. I'm glad I said what I did. Really I am..If I could take it back I wouldn't. Even though I am paying for it now.
It's is OBSCENE how those 'ladies' were reacting to poor danni's comment. It was so obvious that little Ruby is her TREASURE - they were making her look like roadkill and my mother always taught me the only thing worse than a bully- is those that bear witness to it.
I wasn't about to (lie in bed) idly by and watch what was unfolding (TO MY HORROR) right in front of me..If any of you read Harry Potter or have seen the movies..you'll know about something called 'dementors'. They prey on every happy thought you have- and suck the happiness out of you mercilessly. I likened the attack on D to a 'dementor attack'.
They should be ashamed of themselves- a bunch of middle aged women..I am twenty- I'm just a kid and believe I showed more maturity than the lot of them put together (if I do say so myself)
I'm proud of how dani handled herself as well- she didn't resort to bitter name calling and ludicrous insults, and even had the balls to APOLOGISE and for nothing!! Just to 'keep the peace'.
This has really fried me.

shirls said...

Oh my, Craig you have me in tears, and Maddy you are next to him! You are both beautiful, bless you and the support you express so lovingly. Danni, you are in wonderful company, big hugs and much love again xx

Alexandra Madeline (Maddy) Barber said...

Aww thanks shirls! High 5 craig! I know now Dani is my friend for life- she supported me when I found out who the real losers were! So I'll be there for her till my end. I'm just sorry she had to endure 'something else'. Don't we involved with CF go through enough? I didn't think 'Mean Girls' applied to a group of middle aged mothers. Apparently high school never ends. This is why I like being friends with boys. You can just punch each other in the face and get over it :P

Anonymous said...

As a mother of four children, three"normal" (you know I hate that saying) and one with Kabuki Syndrome, I totally understand your angst and tinge of sadness looking back on things.... I am more devestated that people made you feel so sad... That shatters me to think that people living with similar situations make those judgements, its the old saying of "people in glass houses should not throw stones" how dare they... rest assured there are good people out there who support you always and understand without judgements... love jenx

Juggler said...

Hi Dani. I read that post and it was horrendous wasn't it. i really think that sometimes there is competition between 'CF mums' as to who got it worse and therefore should really be the only ones to vent about normal things. As I mentioned I will also wish I had the normal, first steps photos both my boys learnt to walk in hospital. Jordan with a PICC in his foot with it all boarded and bandaged up and Aidan using the IV pole to help him stand and walk. Not the nice glossy images you have in your head when you dream about all the things that having a baby will bring. I am glad that you haven't given up on all of us CF mums and for those that unfriended you, you are probably better off not having them in your life. Because surely we all have better things to do that put up with others peoples issues.

Erin said...

& dont forget, I fired her with Style ;) geez I wish Ihad of copied and pated that one xxx