Tonight is the CNN broadcast. I feel calm. I don't plan to watch it. Three reasons: 1) I am pretty self-critical and would spend the whole time thinking how stupid I look, 2) I heard a bit of the preview and they described Cash as "incurable" - what?! I can't watch that and have those kind of words and pictures of Cash in my head, and 3) I will be annoyed if they are really harsh with Dr. Geeta. So, I am going to let everyone else watch it and I think I will eat a few cookies in the other room. Mmmm, cookies.
I have already had a few people contact me about the broadcast through Facebook or the blog. A woman named Rochelle wrote a lovely, pertinent comment on an earlier post below - check it out. And others are looking for information about Cash's diagnosis and our experience in India. I think it is my job to be public and honest about our experience, so I guess I'm ready for whatever this brings. I know that every story about a child or a parent in pain breaks my heart, but I also know that I have an understanding about what it is to have a special need kid and I can share that. I know what it is to be hopeless and what it is to take that dangerous leap into hope. I know that love always wins and that being a force for love in the world is the only thing that really matters.
So I face my little 15 minutes of semi-fame with equinimity.
If you have found this blog after seeing the CNN piece, I might recommend that you read some of the earliest posts about our decision to go to India and what happened there.
I have already had a few people contact me about the broadcast through Facebook or the blog. A woman named Rochelle wrote a lovely, pertinent comment on an earlier post below - check it out. And others are looking for information about Cash's diagnosis and our experience in India. I think it is my job to be public and honest about our experience, so I guess I'm ready for whatever this brings. I know that every story about a child or a parent in pain breaks my heart, but I also know that I have an understanding about what it is to have a special need kid and I can share that. I know what it is to be hopeless and what it is to take that dangerous leap into hope. I know that love always wins and that being a force for love in the world is the only thing that really matters.
So I face my little 15 minutes of semi-fame with equinimity.
If you have found this blog after seeing the CNN piece, I might recommend that you read some of the earliest posts about our decision to go to India and what happened there.
Hi Stephanie,
ReplyDeleteI just read the story on CNN and have been looking at your blog for over an hour.
I cannot say that I have a large opinion on stem cells, other than if they work, praise God for leading us to them.
I do want to let you know that you have a beautiful son! He looks like quite the ham! And I admire your family's strength and drive to do what you think is right. I support you!
I work with children with autism/ intellectual and developmental delays and will be directing families to your blog :)
Thank you!
Brie
Thank you Brie! I appreciate your kindness.
DeleteHi Stephanie,
ReplyDeleteLike Brie, I too, read Cash's story on CNN and in an effort to not be too repetitive, I must say that I echo all of Brie's sentiments above.
I commend you and Josh for being so transparent and vocal about such a taboo subject! Sending positive energy to you and your family, especially Cash.
Keep us updated!
Hi! I was flipping through channels last night with the hubby and the only thing I caught a glimpse of was a view of your blog title and then kept flipping.. Then it occurred to me... "was her kid named Cash?!" (my only son is named Cash) but, as I went back to see what the story was about they had moved on to talking about some doctor (which looked boring -- sorry for my honesty) and kept going through the channels until I landed on Iron Chef America, where I watched Bobby Flay -yet again- kick somebody's butt, then I went to bed.
ReplyDeleteHowever!!... I couldn't stop wondering if your kid was really named Cash! Lol
So I googled your blog from my phone in bed but it was taking 5 million years to upload so I clicked off and went to sleep.
Then this morning I was still curious so here I am! :D
All of this babbling is getting to a point (I promise). I don't know a whole lot about stem cells, so I'm not going to pretend that I do just to stake out an argument for or against you. But, from reading your last post it sounds like you are not happy with the way you were portrayed on tv and you worry that people who saw it will judge you unfairly. Since there is obviously SOME reason that God led me to comment on your blog, I believe it is to just say: as long as you are doing what you know to be right in your heart regarding your son... Then do not worry about anything else. As mothers, God expects us to do our best. As long as you are doing that then no one has any right to be critical of your personal decisions!
I wish you and Cash and the rest of your family peace and blessings!
Xoxo
Thesenyardpress.wordpress.com
Best to you and YOUR Cash - it's a great name, isn't it?! So nice to hear from you -
DeleteHi! I am a paraplegic as a result of an accident 16 years ago. I made 6 trips to NuTech over the last 3 years. I made some improvements. Improvements that definitely would not have occurred without Dr. Shroff's stem cell therapy. She never promised a 'miracle' or a
ReplyDelete'cure' but she said I would have improvements towards a better quality of life. And that's what happened. I saw CNN and talked to people who know you thru NuTech and Cash has made improvements. That's the best we can hope for at this stage of technology.
Best wishes....Louis
I completely completely agree with you. People who aren't in our situation don't appreciate how big small progress can be, how great it can be to have change where everyone told you there would be none. We can only do what is available to us now - we are pioneers, I think!
DeleteLove to you.
Hi Stephanie,
ReplyDeleteThe last thing you came across on tv was as stupid--you are an extremely brave, smart and inspirational mom. I am a relatively new stay-at-home mom,and I have been getting bouts of depression from time to time at the thought of having abandoned my career to take care of my baby. Last night, seeing what you are going through with so much courage and postive energy made me ashamed of my indulgence. I just wanted to let you know that you have made a positive difference in my life.
My heart bleeds for you and Cash. As an Indian I'm well aware of the dishonesty and unethical nature of medical practices there, but I hope Cash's treatment wasn't one of those and that there will be an improvement in his condition.
Rupa.
Rupa, I think you are brave and wonderful to stay at home - I admit I pretty much have to work, both for financial reasons and for my own mental health. So I appreciate all the more what it takes to stay at home with a kid - it is exhausting. I send you tons of love and strength. All my best, Stephanie
DeleteHi Stephanie - I am co-founder of the Stem Cell Pioneers www.stemcellpioneers.com This forum was started in 2007 for stem cell discussion and support for patients who have had treatment or are thinking about having treatment. I would love to have you join. Dr. Schroff has participated in the forum in the past. Unfortunately, few people truly understand what it's like to be ill or have a loved one that is ill. Unfortunately, the U.S. is lagging behind what other countries are doing as far as clinical applications for stem cells. The media simply does not understand the dilemma patients face, nor do many in the medical and scientific communities. There are some unscrupulous people out there that do take advantage of those that are ill, but I simply do not believe that Dr. Schroff falls into that category.
ReplyDeleteBarbara, I would love to join. I'll go to stemcellpioneers.com or you can email me at stephaniekrolick@gmail.com.
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