I'd love all your comments and suggestions on the Great Debate we're now finding ourselves fully immersed in, that is to say, whether the UK or the US would provide the best life for Reuben. Whether the great outdoors of California should be traded for the stuck in doors of the UK, the Californian beaches for cafe culture in London, the Getty Center for Tate Modern, fair weather friends in LA (notable exceptions aside like Yuka and Cassandra, a fellow intensive care boarder who generously sits by Reuben's bedside for hours whilst her own baby Dylan recovers from surgeries!) for true friends in the UK, my Anglo-American extended family, for the undeniable comfort, love and support from my own dear family back home. Whether wading through and petitioning the Social Security Administration for disability support and MediCal to acknowledge Reuben as institutionally deemed, be traded for the UK's national health service. Critically, will Reuben benefit educationally and be better supported in the UK or in LA? Will he benefit from a host of specialists to hand with an understanding of CHARGE at Great Ormond Street as he has at Children's Hospital LA?I thank you greatly in advance.
12 comments:
ohhhhhhhhhh wheres yuka and erica here wa expecting to c posts form them here lol but anyway i say go where ur heart and gut say there r some charge fams in the uk who r great to but ud b aweay form that great heart dr if he needed mroe stuff done ur away from the wonderful yuka and stuff there will b paper work where ever u go even here in aus with our public private system choose ur won dr all that sutff we still have oodles of paper 21 paper to get hearing tests for free paper to c new dr paper this that and the other loveu all
I agree with Ellen that you'd have to take into account your "bonds" with Reuben's dr. I know we are very partial to Lucas's dr's right now and couldn't imagine changing them (we have his fourth surgery planned for Dec.)... ... But the family thing is big too, we are lucky to have ours so close although they are kind of intimidated of keeping Lucas alone just yet. We applied and got denied Lucas’s SSI not b/c of him; b/c of income (also b/c he wasn’t in the hospital for 30 consecutive days) neither are reasons I would change; but we are very fortunate to have good ins. Still waiting on a TEFRA ins decision. Good luck with your very hard decision!! http://mkweindorf.blogspot.com/
Catherine (and Ellen, here I am)
No matter what I or others say on this subject, it is ultimately a decision for you and J, to be made in the best interests of all 3 of you. There are so many issues to consider and I am aware that the formula is even more complicated than from the blog. We have talked them through many times but with the balance failing to tip consistently to one side. However, whilst I know you feel the need to plan ahead, is this decision one that needs to be made so imminently? Maybe the answer will just flow and become clearer to you both over the coming important months for Reubens' recovery. Where ever you live, you know that I will support you in whatever way I can.
With love
Erica
I vote Canada, wait a minute, that wasn't one of the choices, was it? Dang. I'm not much help. It's one of decisions that you make a list of pros/cons, that usually comes back to your gut and what it's telling you. I wish you all the best of luck with this decision.
Tricky one this, and have been wondering if/when this would be a decision you'd face. No doubt there are pros and cons to each - but I believe that, at the end of the day, the best place for Reuben will be the place that you and Jason are happiest because, more than anything, he will always have a need for happy and content parents. I don't know the full extent of the differences between the 2 countries in terms of what medical/educational/support facilities are available for Reuben... but I'd have thought they'd be much of a muchness when all added up. So my view is that a big part of your decision should include what's most important for YOUR happiness and wellbeing... and I think that may be quite difficult for you to know right now, with Reuben still in hospital and you living through this 'in transit' stage of your lives. As Erica said, this is not a decision to be rushed... and maybe you should wait until you've got Reuben home and see how things go 'on your own' for a while then.
Lots of love, Polly
Mmmm, let's weigh this up.
Stay in the States and continue with the new life set out for you, with fantastic medical support and the history of medical knowledge for his condition, wonderful new friends and the great outdoors and wonderful weather, extended family support (and great local gigs!!)
OR
what you know and love in England, with all your wonderful friends and your entire family (Laceys and Dodds) and the opportunity for Reuben to grow up with unparalled access to this network of support and his cousins!
If Reuben will be safe and healty in equal measure if living in the UK or US, then the rest is reasonably easy - go where your heart lies!
Hope this helps.
Lots of love
Geraldine
x
Goodness me that is such a huge question I can't even begin to imagine all the variables..so I believe your friends are very wise when they say, take your time and follow your hearts. I know for certain that whatever you both decide it will be the right decision.
Today I was in a real stress, someone had taken the wrong hay from the barn....then I read your Blog and Reuben helped me get my problems back in perspective..so please give him a hug, he was real help to me today.
Thinking of you all Adrian xx
We have had a micro version of this debate ever since Jacob was born. Should we stay here in London with friends and jobs and decent culture or move back to Leicester to be close to my family and very old/close friends.
We are still here in London, BUT I think the deciding factor in the end was that 1. we managed to get some nursing help for the first year at home and 2. it is still possible for us to utilise my family in order to get a longer break from caring for Jacob. This need for a break is still miles away for you at this stage, and even may never arise for you. But it did for us (especially after 2 yrs of broken sleep due to teething, feeding, vomiting, and other unidentified sleep disturbers!) and here in London although we have good friends we had no one who offered to learn how to do his tube feeds so it was impossible for Neil and I to take a break away together even for a few hours as Jacob always needed his next feed.
The nursing help was essential as it gave us 6 free hours per week during the daytime but Neil couldn't benefit from that as he was at work so that was only me who had time for a long bath or to attend a dentist appointment etc.
For us it was important to occassionally be able to go to a lovely hotel / escape for a weekend from the drugery of still changing nappies and tube feeding with a 3 yr (and now almost 4 yr old.) So we are fortunate that my mum was keen and able to learn to feed Jacob and perhaps twice a year he will go for a holiday to Leicester for 2 or 3 days while we have a break. I don't want to make it sound like parenting J is anything less than a joy as it is...but it is also completely knackering. I am a worrier and find the chronic long term anxiety of this Charge rollercoaster is exhausting!
Now here in London we also have one person who can tube feed him, a childminder who looks after him whilst I work 2 days per week and she also does babysits so we can go to a gig, cinema etc...happy parents equal a happy Jacob.
So my question to you would be can you get enough support in both places to ensure you get to take a break together if and when the need for it arises.
The medical side would be taken care of equally well in both cities I would imagine, and education wise if you decide to return for school, remember you need at least 6 months to get a Statement of Special Ed Needs in place (to get any extra support Reuben needs in School).
I could ramble on for ages so better stop now!
Alexis (Mum to Jacob, who also has CHARGE)
Hey there, our little man has such beautiful hands and feet, which in the near future will be getting in to lots of mischief (lol),,,, now your debate with the uk and u.s and a, tuff one !, as already commented , care and schooling will be very much on par,and doctors which you get attached to and trust can up and leave, so the bottom line is really where the 3 of you will be happiest, also from personnal experience i would have been very alone and found it extremely hard being a parent with out the wonderful help of my family, and children need that family too, over to you two, take your time on this , lots of love as always x
What a complicated decision... one that I won't even attempt to advise. We struggle with a dilemma regarding leaving California for a less expensive place to live - - we haven't left yet! Our connections with services, doctors, etc. make it a very daunting prospect... not to mention that we'd be going away from family and friends. Your choice seems far more difficult in my eyes. (Not that you want to hear that!)
I wish you peace and clarity as you contemplate.
With love,
Kristi
I think, that all things being equal, the UK has to be the right place. Particularly now that I've read your recent blog entry about fairweather friends. But I don't know what the medical situation would be for you in the UK, NHS support etc etc. That may make the decision for you ultimately. I would love you back in England - can't see myself making it over to LA for the time being. Didn't we used to discuss meeting half way in Hawaii?! Next time you need some R&R and want to head west, just give me a call!! Or better yet, just rock up here!
This is such a hard decision for you to all to make but I don't think it needs to be rushed. Even if you decide that you come back to the UK when Reuben is 2 or 3, I'm sure you would find doctors and surgeons in the NHS that you could trust and that would support you all the way. I know for me that first and foremost my family is the most important thing and I could have not coped with having young children and no family nearby. Your family are the only ones you can really open up to and can cheer from your lowest ebb. The friends you have made since Reuben's birth sound fantastic and so so supportive so it all makes the decision harder. When the time comes I know you will make the right choice. I follow Reuben's blog religiously and am constantly inspired by both you and him. Please give him a huge kiss and hug from me and one for yourself as well. Lots of love xx
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