but i’m just as cautious not to keep quiet out of fear.

so with ever so much caution here’s my reply to your post….

your family has lost more in the last few years than most families will lose ever. most people will never understand that and that will probably be one of your hardest relational trials in the future. the, ‘oh i lost my gran i understand how you feel’ people will make you scream, at the very least on the inside, and sometimes right out loud. if you’re lucky you’ll never punch one of them in the nose.

your family vacillates between despair over losing what sophie was and celebrating things most people would consider trivial. people will try to console you with, ‘at least she’s alive’ while they drive theirs kids off to sports practice, piano lessons, and university. and when you’re family is making a holiday of it because sophie can lift her arm some people will shake their heads because they feel sorry for someone who has to ‘imagine’ accomplishments for their child. all making you scream, at the very least on the inside, and sometimes right out loud. if you’re lucky you’ll never punch one of them in the nose.

you’ll worry that the losses your kids have suffered will lead them down paths you don’t want for them. you’ll worry that the attention you give sophie will negatively impact your healthy kids. you’ll hang on too tightly to your healthy kids so as not to lose them too. you’ll want to keep things from your healthy kids because sophie can’t have them. and when someone asks you how things are going, you’ll tell them all of your parenting worries and they won’t understand. all making you scream, at the very least on the inside, and sometimes right out loud. if you’re lucky you’ll never punch one of them in the nose.

and no matter how much we hope and pray for you, the reality is that for at least a very long time you’ll be told by ‘experts’ and ‘advice offerers’ what you should and should not do, what will and will not work and how hopeless your situation is. all making you scream, at the very least on the inside, and sometimes right out loud. if you’re lucky you’ll never punch one of them in the nose.

so my advice is as follows…..

*try not to punch stupid people in the nose…..it doesn’t make them smarter

*take time to scream as needed…..but try not to do it in public more than necessary

*apologize to your kids as needed (in my case daily) and explain to them that your anger isn’t because of them

*tell your kids about your worries and fears to the extent that their ages will allow because their imagined fears and seeing you scared will do way more damage than walking in reality with them

*give your kids time to talk about how much their lives suck more than other people…..in our house it’s a time when i just listen and don’t advise or fix…..as my baby boy says, ‘mamma i don’t need you to fix this i just need to yell’…..let them yell

*try not to hate the stupid people more than is healthy…..you live in a wonderful time of global communication lean on the non-stupid people of the world

*if an opportunity arises where you and your wife can spend some time alone…take it…..the strength you have together will be the best medicine your kids will ever have

and when you’ve screamed and cried and hated and cussed to the point where there’s nothing left to do but be quiet…..look back on the day when they told you to stop the life support and know that they were wrong. then look at all of the decisions since then and know that it was your choices as parents that have been the keys to her success. then trust your judgment as flawed as it may be to get your kids through the hard times.

mourn when you need to, celebrate every chance you can and as gandalf says, ‘do the best you can with the time that’s been given to you.’ and when those times come, lean on those who understand as often as you need…..and it will be ok with them because they do understand.

Best wishes to you and your kids and keep lighting Sophies day with your entertaining tweets, much love.

i’m so glad that stephen fry and his misses sent out sophies name so that i might have the honor of playing a minute part in her story. and i will continue to look hopefully to the future for your family and sophie. so big, big hugs, and a double shit in your honor when necessary, good day.

p.s. in the event that johnny reads this….i’ve always loved your artistry, i’ve never cared what your shoe size was. however, when i weighed my discomfort with the stimulus value to sophie i chose sophie. i promise upon sophies recovery i will promtly forget your shoe size and let you once again slip into the obscure reaches of my mind limited to artistic endevors.

p.s.s. in the event that Mrs Stephen Fry is reading this the above does not extend to your person as i have made it my lifes goal to become you which of course requires much stalking and stepping on of personal privacies.