Monday, March 09, 2009

Need Your Prayers and Good Thoughts..

Monday, March 9, 2009 Update
My friend's son will be starting his in-patient stay at a local hospital today. My friend is devastated. We don't know how long her boy will be staying, just that it'll be a while. The average in-patient stay at this hospital is 30 days.

Please pray that his stay gives them both the break they so desperately need and that this helps my friend determine her next steps....

######

BUMPING THIS UP. MY FRIEND HAD TO MAKE THE TOUGHEST DECISION ANY MOTHER CAN EVER BE ASKED TO MAKE.

I'm asking for another friend this time. She has been my friend, my mentor, my anchor to sanity since my early ventures into biomed. She has taught me much about advocacy; about how to work with schools; about 'what is autism and what is just being a kid'; about sibling dynamics, about the phases of grief a woman will go through (and has to go through and will continue to go through) when she realizes that her childrens' father will simply NEVER come on board, will never pull his weight; how to deal with both open and overt sabotage of what you are trying to accomplish by your childrens' father; how to not 'loose your cool' when in public gatherings and your child is having a good day that same uninvolved father is the first one to 'claim credit'; how to keep going, keep protecting your kids when your childrens' father has become your 'third child'..

She has been an instrumental part into helping me become who I am now. It is largely because of her that I am the person I am, with and for my boys.

She is a tireless advocate for all our kids, is an active member of a variety of autism organizations, she has fought tooth and nail for her affected child. And she entered this fight quite a few years before many of us, when there wasn't much awareness, much in terms of biomed beyond GFCF, much of anything.

She has done everything right, EVERYTHING. There is no biomed treatment under the sun that she hasn't researched, investigated, tried (but financial constraints are a HUGE BIG hurdle). With little to no support. And despite giving it her all, her son continues to struggle, in fact is having a terribly hard time now, and things have escalated to a point of (and I so hope that this will turn out to be temporary) 'no return'.

I so badly want to fix this, want to make it all better. She is a good person, her boy is a wonderful guy, her younger boy (not affected) is a friend of my two. They deserve for things to go right for them. They have already faced so much hardship. For this latest crisis to hit, it is just so unfair.

Please, please, pray for them. Send good thoughts and vibes into the Universe for them, whatever it is that you do. They need it all.

11 Comments:

At 11:13 AM, February 14, 2009 , Anonymous Jeanne said...

Oh my. I will be praying for and sending many thoughts to your friend and her son. Keep us posted!

 
At 9:51 PM, March 02, 2009 , Blogger K Fuller said...

When we rule the world, no child will suffer from any man made condition.
I will keep your friend and every family of a child with a struggle in the front of my heart.

 
At 10:09 PM, March 02, 2009 , Blogger Petra said...

Thanks K

Unfortunately, until that time, there will be children for whom the damage is severe and for whom finding ways to 'undo' prove incredibly hard to find. And for those children, the so much needed changes may come too late (not trying to be fatalistic here..).

It is with a very heavy heart that I am going into the night and into the upcoming week. All I can ask for at this point is that the decision she had to make will result in some much needed improvements.

Let her struggle, let her boy's struggle, be a reminder that not all stories have (somewhat) happy endings, and that anybody who has been able to achieve meaningful improvements in their child(ren)'s life by whatever means should considered themselves blessed beyond words.

If not for having found the right combo of stuff for Salamander, I would have been in my friend's shoes....

 
At 7:54 AM, March 03, 2009 , Blogger Cath said...

It is cruel - and random - as to who improves and who does not. I have your friend, and all families in this category (plus their good friends), in my prayers this week.

 
At 9:02 AM, March 03, 2009 , Blogger Petra said...

I agree Cath, cruel and random indeed. And of course money is a huge part of the picture too. I think Kim S made a comment on FB yesterday, that it takes along the lines of $250,000 at a minimum to help a child recover/get better...

I have not been able to sleep all nite.. I can't get my friend and her beautiful boys (as of course the whole situation has a huge impact on the ASD boy's NT younger sib as well) out of my mind.. And I'll admit that there is a good dose of guilt mixed in. Why was I able to find that combo of things what helped my boys improve, and why has she not been able to achieve the same?

 
At 11:47 AM, March 03, 2009 , Blogger Renee said...

Your friend is in my thoughts and prayers. I know I struggle with some of the same questions, why do some children make such wonderful progress, and other don't. When the parents are just as loving, just as committed, just as creative. It's not fair, it's not right.

The only thing that brings me any peace is knowing that somehow, everything happens for a reason. We might not be able to see that reason today, tomorrow, or ever, but it's there. And you can't questions it.

Steve and I have found so many times that we were at the end of our rope and a chance conversation leads us in a whole new direction, or reasearch for Michael brings us back to ourselves.

Sometimes, the pain and adversity just make us more patient, loving parents. There are no answers,and that's the hardest part. But one thing is certain - your friend knows what a true friend you are, and how closely your families are united. That, in itself, is a blessing.

 
At 4:11 PM, March 03, 2009 , Anonymous navywifeandmom said...

Prayers for your friend, Petra. I am so sorry.

My daughter was beginning to turn aggressive and violent around the time we began biomed in earnest, no looking back. She is far from "recovered" yet is a wonderful nonverbal child to live with. She is calm and happy and I couldn't say that a few months ago. I do not know if I will ever "recover" her or even hear her speak purposefully, but just to see her so peaceful and happy and attempting to interact is a blessing.

I am so sorry about your friend. It just isn't fair that not every child affected by this horrible condition improves with intervention.

 
At 5:03 PM, March 03, 2009 , Blogger Petra said...

Thank you all for your comments, thoughts and prayers. Especially the prayers, and please, keep 'em coming. I for one am praying that the decision she had to make for her 12 year old son will become a turning point and a start to better times. God knows she has given it her all, she has left no stone unturned (except for this last one).

This has been hitting me very hard.. and I am not even the one going through all of this.
But it so easily could have been me, it so easily could have been. As recent as last year February I made a frantic call to Salamander's neuropsych for an assessment for juvenile onset bipolar disorder (but TG several modifications to his supplement program did the trick to break that particular manic/depressive cycle).

Count your blessings every single day if you have found something that gives you the improvements you are looking for, and never get complacement. Once puberty enters the mix, things can change. And change dramatically.

 
At 3:06 PM, March 09, 2009 , Blogger K Fuller said...

I am so sorry for your friend and the child she loves. What she is doing takes more strength than I can imagine mustering up. I think they would have to make up a bed for me. God bless her. Let her know that there are people out here thinking about her.

 
At 8:59 AM, March 10, 2009 , Blogger Renee said...

I just wanted to let you know I am still praying for your friend, and her son. I know how it has to be tearing her up inside. But, I am praying that this will be a breaththrough and the start of much better times for the family. *hugs*

 
At 8:33 PM, March 10, 2009 , Blogger Michelle O'Neil said...

Love to you and your friend and her boy.

 

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