Left Unsaid

I sit there with my babe in my arms. I'm trying hard to fall in love with her, honestly I am. Permisions been granted to be a mother for a short while, she is just on loan you must understand. I should take it drink it in be one with her. I just can't though, it torments me like nothing I have ever experienced. It's such hard work to relax and love. She is fragile and lovely, she is our babe we wished for so dearly but it is not meant to be like this. They're always there watching, judging, the power stuggle for control and ownership goes on with a turbulant undercurrent. I wish I could roar "but I'm her mother", but I don't I sit there meek and pathetic until it leaves a bitter taste in my mouth. There is a battle between being her advocate and being the "good family" so she gets treated kindly when we're not there.

We walk in the door one morning and the nursing staff melt away from us. They hide, give us a smile that says "I'm sorry". They pick up the phone and talk in hushed tones. What is this about, I think. My babe is still there behind the plastic, her numbers look good. The tech came yesterday to do her head ultrasound, just routine they all say, nothing to worry about, will only take ten minutes but the ultrasound takes close to an hour. My alarm bells should of gone off then. Babe's consultant is by our side within minutes. The words escape from his mouth that turn our lives around "her brain scan was not normal". What do you mean not normal I think. No this isn't happening to our babe. "She may never do this and never do that" he says "you will have to wait and see". I can't think straight. The other families are trying to be polite and pretend not to hear their own nightmares echoed in ours. I don't want to wait and see. I want the imposible, I want to know what lies ahead. I want to know if I can ever fall in mother love with her.

DH and I stay for the morning. Then we leave, work still goes on for DH. We walk into my mother and father's house. My sister and her family is there. My mother wants to know the results of her ultrasound. We tell them and leave with our two year old. My mother comes the next day and as if she has walked into my mind she says "its Ok I will love her with you no matter what lies ahead". Thats when I started to fall for my babe, when my mother's love for me and her grandaughter set me free from my fears for the future and the unkown with my premature babe.

Clueless

My two younger daughters had sports day today. It was in many ways a fun, happy day but unfortunately I witnessed terrible humiliation of a seven year old boy that was inflicted upon him by adults who were in the position of caring for him. This young boy has what I would call spunk, he is cheeky and has a fantastic sense of humor and also uses a self propelled wheelchair (with great dexterity I might add). The staff of the school made him race against the other children in his year level. Now I don't know how anyone in a wheelchair even an adult who uses a wheelchair on a permanent basis could keep up with hyped up seven year old boys on a drought stricken grass track. Honestly it was clueless, he was so terribly embarrassed when all the other children had finished there race and he was left there to battle the whole way to the end. Why he couldn't have had a head start for one and someone to help him push a little so he could still be part of the race without the humiliation of being left on the track finishing the race on his own I don't know. He had tears streaming down his face by the end of it and the teachers had the hide to ask what was wrong. Why is it so difficult to include students with disabilities while adapting the environment to level out the playing field. I though that was what inclusive education was about, making accommodations and modifications so students with disabilites could equally be part of the school community.

Eight Random Thoughts About Me

I've been tagged by Jacqui from Terrible Palsy for Eight Random Thoughts About Me:

1. I hate mashed potato to the point that I even hate mashing it up for the girls - but of course it would be one of their favourite foods.





2. I don't drive, by choice - the rest of the world is a bit safer because of it too.





3. I spend way to much time playing WEBoggle. I am totally addicted.




4. I still haven't found anything that I'm talented at (sad I know).




5. I drink way, way to much coffee.




6. I hate confrontation and will do anything in my power to avoid it (not always the best course of action).




7. I adore chocolate coated ginger more than any other food in the whole world.



8. The best smell in the world is double choc chip cookies baking in the oven on a rainy day.

I know I'm suppose to tag 8 other bloggers, but I'm afraid I'm only new to the whole blog deal. So I don't think I will be able to tag 8 bloggers but I will tag Word Game Guy who is also new to the blog world and because I adore his game.

Resentment

I have recently read an article in a small Australian Magazine about natural parenting in NICU and SCN. The article describe this women's own journey with a son born at 34 weeks who had a 10 day SCN stay. At the end of the article she gives a list of suggestions to support parents with babies in NICU/SCN. I fully understand that for this family those ten days were extremely difficult but for some reason I have this bitter feeling of resentment that the suggestions glossed over the realities for families that have babies that are not "feeders and growers" whose stay extends well past ten days into weeks and months with long term implications. The information and support that you require and are practical for 10 days are very different to a long term stay. What I found exceptionally difficult was that NO mention of some of the more serious sides of prematurity eg: viability, morbidity, resuscitation, IVH, or long term health implications. Why are these issues forgotten about? Why is it not important to support families with information on these topics that are difficult but so important when faced with these issues? If you were going to give suggestions to support parents of premature babies these issues need to be and should be discussed.

Boring

Only a nine year old would find the view from the Noosa National Park "boring". I think it is beautiful and could look at it forever. I guess beauty is in the eye of the beholder...

Please

To the daughter,

Please listen to your mother. She has made an informed decision. She has weighed up the benefits against the negative side effects. She has made a choice she can live with. Please remember that she loves you dearly but this is her body and her decision. Please don't be so angry with her that is permeates the air and your whole being. Please turn your IPod off when the nurse is trying to discuss your Mother's chemotherapy treatment with you both (come on your in your 30's now, it's time to grow up a bit). If you can't handle the environment and the treatment please walk out. Please don't stare daggers at your Mother when she is having her first treatment instead please see her bravery and her need for you just to hold her hand and just be with her. Please see that not everyone can base their faith in herbs and alternative medicine. Please, we understand that you don't agree with chemotherapy but please try and see we are trying to slow down the proliferation of your Mother's cancer and control your Mother's symptoms. Please see that our motive is not to harm your Mother but to help her. Please don't spend the limited time you have left with your Mother wrapped up with anger against her. Please be angry with the cancer - not your Mother.