Wednesday, December 21, 2011

In the interests of full disclosure....

Back when Kaylee was first admitted to hospital the outpouring of love and generosity was amazing!  I would ask for something and it would magically appear.  Luxuries that eased my way through some of the darkest days seemed like gifts from heaven.

Fast forward to now.

We are home and while we have our tough and stressful days and weeks, we aren't doing too badly for the most part.  We have discovered that Jon going to work is not sustainable - Kaylee's needs are just too time consuming for me to do everything that needs to be done and take care of her properly on my own.  So once we finish sorting out the MOUNTAINS of paperwork he and I will be on centrelink allowences.  Once we have that sorted out we will have a steady fortnightly income which will cover all our needs and a couple of our wants.  We are buying a special Christmas present for the kids which is a little more extravagant than our regular Christmases.  We have never once had bare cupboards or wondered how to pay for a tank of fuel - a combination of the generosity of others and our own careful savings and modest lifestyle choices took care of that type of thing.  We are expecting that some back payments and some generous fundraising by my Ravelry friends will pay for ALL of us to go over to Melbourne for Kaylee's surgery next February.  Some dear friends have watched 5/6 of our kids while we attended appointments.  Friends have offered to help out with jobs around the house.  Honestly, we are doing pretty well.

But the generosity continues. 

The local charity group has dropped in two boxes of groceries this week.

I'm not exactly sure how to tell them that we don't actually NEED it.

Another charitable group has asked us what funds we need.

But it doesn't seem quite right to ask them to fund that live-in maid named Alice that I always wanted or pay off our mortgage or pay for a new roof to add value to the house before we sell.

So dear friends, just so nobody's feelings get hurt and in the interests of full disclosure, we are doing OK right now.

If Kaylee needs a feed pump long term, we may need to raise funds to buy a better one - but Kaylee could start drinking bottles, or even direct from the breast, next year.

If Kaylee still isn't walking by the time she outgrows prams we may need to buy a decent wheelchair - but she could up and walk before her first birthday and given CDLS growth rates she will probably be fine in  a pram for at least another six+ years - and most kids with CDLS walk long before then.

If our centrelink paperwork gets messed up, mislaid or refused we may need a bit of help - but we could have that completely sorted in a couple of weeks and have all our financial needs met.

In the mean time, if you really want to help, donate some blood or donate some funds to one of the charities listed on our wishlist.  Or, by all means, get me that live-in maid named Alice I always wanted!

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