I had a yucky day today. I'm so grateful I have people I can call on.
Holly is still yuck. She wasn't too bad this morning, she had her morning meds and bottle, didn't spew it back up, had a sleep. But when she woke up she just screamed and kept screaming for most of the rest of the day. I gave her panadol and that put her to sleep for about 20 minutes, but she woke up screaming again.
We got a phone call from the pead. He said that the culture from her wee sample came back and its not indicating she has a UTI. So now I'm confused. The other day they said she did, now they say she doesn't - but why else is she screaming?? Her wee is smelly, which I've heard can happen when the babies are about to get teeth. I just don't know. I think that is one of the hard parts, you just can't do anything to fix her pain. I try everything, but nothing works.
I needed to go down the street today. I needed to get some things and battle centerlink, but I also just wanted to get out of the house for more than 3 minutes. I was really looking forward to my lunch with T. Holly quickly put an end to that nice idea. I texted T while Holly was crying and explained we were changing our plans to not go to centerlink and not go to the shops but I wanted to go to lunch. It came time to put Holly in the car - she had been fed, I'd just given her some neurofen so there was absolutely no reason what so ever for her to cry at all, but she went ballistic. I've never seen her cry like that. It wasn't a cross between a frustration cry and a hurting cry. I just could not get her in the car. Normally I'm pretty good with putting up with her crying when she gets in the car seat, I figure she'll be asleep in a few minutes anyway, but today was different. She was going nuts. Every time I tried to buckle her in she'd stiffen and scream. I tried settling her a couple of times by putting the dummy in and settling her and try again, but every time I tried to move the seat belt, she'd just scream. I bought her back inside and started crying with her. I felt so low. There was nothing I could do to stop her and I needed to get out of the house for my own sanity. It feels like I've been couped up in the house all week. And the thought of L being out for soccer tonight and just sitting here by myself having to deal with Holly, I just cried. I needed a break. So, I rang my mum. She jumped in the car and came down. While I was waiting for mum, Holly fell asleep - trust! Just as I get fed up, she falls asleep and is fine to look after! Anyway, in the mean time T had rung to see where we were at. I cried on the phone to her too! She came up to pick me up and we went out for lunch. God I needed it! It was lovely to get out and get some air and not have Holly screaming in my ear. T and I managed to get some shopping in and a donut before she dropped me off. I am so grateful to my mum and my friend for looking after me. Its really touching to know that I can just ring them up. Today was one of the hard days.
Some of the things that go through my head on days like this are about how much easier it would be if she could just help by lifting her head, or if she could help push her hand through her jumper. If she could sit upright or sit on my hip while I carried her around. Just the little things. She is just so absolutely beautiful, I just find it so sad that she can't do these things. She is so perfect in every other way, just so perfect, her little eyes, her little nose, her hands and when you manage to get a smile, its her whole face that lights up. Her eyes widen, her mouth seems to go from ear to ear, its the most precious little smile. I wish she could hold her arms out to me like she wants to be picked up or cuddled. I wish she could smile all the time, I wish I knew I could do things that make her happy, I'd make her happy all the time. I wish I knew the trigger, what is it that sets off a smile? I'd do it all the time. I know that she loves me, I know because she settles on me the best. Some days its just harder than others.
It is lonely some times. Not in the sense like today where I was literally alone, but some days I think that even if I do ring people, they don't get it. I know I can talk to them and vent and cry and yell and cry as much as I want. I know I don't have to hold back in that regard. But they don't get it. Their babies are fine. Their babies are beautiful too. Please don't get me wrong, I absolutely love their babies, anyone who knows me knows I love kids, I love babies, but its just hard sometimes. Trying to explain to people the frustration I have to deal with, let alone the emotions, let alone Holly's physical needs.
Let me just vent about centerlink for a few minutes. I don't get government (excuse me please) bullshit. There are two sorts of payments, carers allowance which everyone who is a carer gets, regardless of your income - that is $100 per fortnight. The other is carers payment, which is if you cannot work because of the needs of the person you are caring for. So, we applied for both when Holly was born, but got knocked back because apparently L and I earn too much money. It goes of the previous years tax return, so yes, we were earning a lot of money then, but we were both working full time, we didn't have children and we certainly didn't have a disabled child and all the expenses that go along with that. So, now my maternity pay has stopped, I thought I'd try to reapply for carers payment. There are seriously 4 forms that need to be filled out, the average number of pages is about 10 I'd say off the top of my head. All these questions about whether we have stock bonds or shares or a second property - seriously people, do you really think that if we were rich enough to own anything like that, we'd be applying for assistance??? We are just a normal average family, with a very average income, with a very average mortgage, we just happen to have had a disabled child and would really appreciate some form off assistance from the government to be able to afford her medical expenses. I'm so frustrated cause I have to put in our family income for the 08/09 financial year, and again, cause I worked for some of it, it is included. There is a box there which you can tick to tell them that your wage is going to drop for this financial year, but I highly doubt they are going to even register that. The payment is means tested, and so IF we get approved, we'll get less money anyway because it goes off last year, not what we are currently earning. Its such (excuse my please) bullshit. Some days the frustration is harder than others.
I'm tired, I've had a hard day.
oh you poor thing. Those kinds of days are awful. I'm glad you have your Mum to ring to help out anytime. Noah was so hard that first year. Now it's so much easier to work out what is wrong with him and those hours of screaming non stop are a lot fewer and far between thank goodness.
ReplyDeleteAs for the smiling thing unfortunately with our kids I don't think there is anything we can do to 'make' them smile, it just comes and goes and some days I can rub Noah's leg and he will give me a smile, but then I can do it ten mins later and he won't - it just depends on him at the time.
As for Centrelink don't get me started!!!! The government seriously need to look at their Carer Payment policy. I just had mine cut and now only get Carer Allowance. Carer Payment is supposed to supplement your income as we can't work but it's not supplementing anything - I could be earning $78,000 but can't work because of Noah so they give me $100 a fortnight!!! That doesn't even cover his nappies and feeds and meds!