Welcome

This blog is my record of my journey with my son who had a rare, and eventually fatal metabolic illness. It is the story of the last year and a half of his life, his death, and after. I have shared this journey this in the hopes that is will not only help me come to terms with the realities, but also that someone along the way may find it helpful, as they face a similar journey.







This is my place to comment on events, blow off steam, encourage myself (and maybe you), share frustrations, show my love, grieve my losses, express my hopes, and if I am lucky, maybe figure out some of this crazy place we call life on earth.





The content might sometimes get a little heavy. As an understatement..







WARNING:







People who are grieving may write sad or difficult things and bring you down. This blog may not be for the faint of stomach or of heart. Read with caution and at your own risk.





If you are new to this blog, I suggest reading it from oldest to newest. It isn't necessary, as what I write is complete in itself. But this blog is sort of the result of the "journey" I'm going on, and I think it sort of "flows" better from oldest to newest.



I do hope that in the end you will find, in spite of all the difficult and heartbreaking things, things that are worth contemplating.





Welcome along!





Monday, September 5, 2011

A friend in China

OK, all my friends in the blogosphere, I am going to share my heart about something and ask for your help.

I have met a new friend, though the online face book PBD group.  She lives in China.  She has a little girl, named Star.  Star has been in the hospital for awhile now, due to a serious lung infection.  The doctors think she is about well enough to move from the ICU to a regular room.  This is good news of course.

The problem will be when it is time for Star to go home.  The doctors have told Star's mom, Jun, that it would really help Star to have a CPAP and an Oximeter.  (Does this sound familiar?  Oh, and can I tell you that Star is a sweet little two year old)  Star's family will have to buy the CPAP and Oximeter themselves, there is no funding for this in China.

I have been looking into this for Jun, trying to help her out.  From my initial research, I think the CPAP machine is going to cost between $500 - $800.  I know that when Steve and I thought we were going to have to buy Joel an oximeter and we were told it would be around $900 to $1,000.  Plus each probe was about $200 and was supposed to last two weeks.  I have been checking online, and I have found Oximeters (ordered from the States) that were $500 to $800.  I don't know if these one would be the same medical grade/quality as the one Joel had...

So I am going to ask the palliative care nurse that I stay in touch with her advice about Oximeters, which ones would be reliable and work for Star.  Because we want Star to be very safe!

I have also posted an ad with an online group that trades/exchanges/donates equipment for children with special needs.  I am hoping that might turn up something for Star.  But I am not sure that a CPAP and Oximeter really are the sort of equipment that come up very often. 

So I am working on brands, makes & models, and pricing, etc.  The other half of it is that paying anywhere from $1,000 to $2,000 is a big chunk of money, and a big worry for parents of a terminally ill child...

Of course, you all know how close to home this is for me.  You know that I know, I really know, exactly how it feels to be told you will have to manage getting equipment yourself.  And how it feels to have a child who is slowly getting weaker and weaker... And how hard is it, when you are already carrying such an emotional and mental weight, to have any extra stress added to it... I really can't even go on describing this, it is too close to home for me.

What I will say is that I really want to be able to help Jun, and Star, is some way.  Maybe I can help them find good, inexpensive equipment.  And maybe I can help them by raising some $$$...  I'm really not a good fundraiser sort of gal.  I'm trying to figure out the details of what this could look like. 

What I would really, really like to do, is raise the $$$ for the equipment, purchase it, and send it to them.  So that Jun could just open the package and there it would be, without her having to worry about finding it, paying for it, etc.  Of course, she'd still have to get and pay for probes, but this would be a huge, huge help.  I'm not sure how much $$$ I could raise, I'm not sure if there would be any trouble in shipping medical equipment into China (but I don't think so) and I would have to make sure that whatever monitor it was, was one that Jun could get replacement probes for.

I would also have to figure out how to raise money.  Well, honestly, I am sort of hoping that if I put the need up here, on my blog, maybe there would be people willing to voluntarily donate money...because even if there were 20 people to donate $50 each, that would be a very good start.  Anyhow, I have to figure out how I could do this, in a way that would be honest and above board. 

I think what I might do is find the equipment, price it out, and post the total cost... Then I could open it up for people to pledge money, and when the cost was covered, I could say "enough" and not have to worry about getting more money than needed and then what to do with it. (if that would be a problem!  ;)  )

For now, while I am researching all of this, I will simply ask you, my readers, who feel touched by this and would like to help, to reply with comments.  Any ideas?  Anyone know of reliable equipment?  Anyone who would be willing to pitch in some funds to help out?

Thanks, everyone.

And here is a verse about giving, that I love. It is found in Luke, chapter 6, verse 38.  The words of Jesus.

"Give and it will be given to you; good measure, pressed down, shaken together, and running over will be put into your arms.  For with the same measure that you use, it will be measured back to you."  ( the NKJ version and I put "arms" in, instead of "bosom")

I find that a good measure was given to me first, and now I really would like to put it back into someone else's arms.

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