Friday, January 28

A sneak peak into yesterday

Some days the emotions of everything just take over, so let me run through a sneak peak of yesterday and let you know how it all went....
Woke up after a terrible night sleep (grumpy), L was running late for work so couldn't help me with Holly (angry), Holly wouldn't sit properly for her feed (frustration). She had a few seizures (worry), had a sleep (bored), woke up and gave mummy some lovely smiles (joy). I tried to give her some lunch (more frustration), we got ready and left for a friends house (excitement), had to go to the post office on the way. Got a letter from very special kids - we've been accepted! (happy, relieved, excited, nervous about leaving her for the first time). Got to my friends house to see her new baby (happy), left there to get Holly's new AFO's - for those that might not know AFO's are foot orthotics - we were running late (anxiety), got there and got the fitted (resounded sadness - just another piece of equipment that makes her look disabled - just one more thing that we have to deal with). Went to my sister's to pick up her mail (excited and looking forward to seeing them on Tuesday). Got home, Holly had a sleep, I got on the computer to hear people complaining about their lives (annoyed, frustrated, angry all over again). L came home and left again for training, I gave Holly her dinner, bath and bed (lonely). L came home, we had a late dinner and went to bed (tired). Holly woke up at 3am having a seizure (scared, worried, anxious), got her back to sleep at 5:20am (tired).
Some days I think I'm more tired because I've had so many emotions that doing anything physical, its very very draining some days.
Bear with me here while I vent a little then I'll come back to so happy things. I get really angry when people complain about their lives. Some days I think 'we are the people who make your life look good so don't complain to me'. I am living most people's worse nightmare, don't complain about your life. People complain about not being able to get pregnant - I know how hard it is, we waited for Holly - and be careful what you wish for people, just cause you want a baby, do you want one with a disability? Have you thought about ALL the possibilities here people???? People complain about how hard it is being pregnant. Are you serious?? Your life hasn't begun yet - just you wait!! You don't know what hard is. Be grateful that you are pregnant and keep your fingers crossed that it all works out OK. People complaining about their children. OMG, this just annoys the crap out of me. Be grateful that your child CAN throw a tantrum, be grateful that your child can walk, talk, hear, eat, show emotions and be passionate about what they are trying to achieve. Be grateful that you have a child in the first place. I know I'm not walking in their shoes and I shouldn't judge them. I know to them their lives are tough, but seriously - come and walk in my shoes - see just how hard it can be and stop complaining about yours.
OK, back to something good - Holly got accepted into very special kids! We are super excited. I was really surprised that we've been offered full services. I know they are in high demand, so I thought we'd get offered limited services until we could get in to the hospice, but we've been offered all their services. Its ACE! We will be getting three weeks of respite per financial year. You can only take them in a maximum of one week blocks, and there are a few regulations about public holidays and Christmas holidays, but we are just so excited and grateful to have been accepted. We should be getting a phone call from them next week so we can go down and have a look around and meet the staff. Very very cool!

1 comment:

  1. Prue thankyou for sharing your open and very raw and honest feelings about parenting, partnerships and disability. I am thrilled Holly got a VSK spot that will essentially allow you some time for some normality as such and give your head some space too. Thinking of you xoxo I understand completely the need for normalacy and I hope Holly starts throwing some good tanti's for you very soon xo

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