Retraction: UGH. They showed it at 12 am last night, not tonight. My bad. I'll be keeping my eye out.
There are showing Truth Be Told: I Have a Child with Special Needs again tonight at 12 am on the Discovery Health Channel. (Thanks for letting me know, Lauren!)
The description: Three different families reveal their innermost thoughts and moments, as they let the cameras witness daily life coping with Autism, Down's Syndrome and Epidermolysis Bullosa (a terminal disease that causes skin to blister and detach).
I would encourage you to DVR it if you can or stay up late if you are a night owl. I thought it was very well done and definitely worth watching.
I posted the link to Sam's Caring Bridge site in the post below if you'd like to follow her journey. The show was taped a year ago I think. A lot has happened since then.
Thursday, December 3, 2009
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7 comments:
if we could ever see this online I would like to do so. praying for you and yours as always
Actually, it showed this morning at 12 am. :( I went to record it and it's not on.
i saw the show last night. it was very nice to be able to really "see" sam and her family. her mom is INCREDIBLE.
sorry Patrice. My bad. I looked at it wrong.
I was able to catch the show last night and thought of you guys the whole time. It was very informing. You're an amazing mommy.
You don't know me...I've stumbled on your blog somehow, and I'm amazed at your story and your strength. When I saw this episode, the first thing I thought of was Jonah. I thought, "I know someone with EB!" even though I've never met you. The show made me realize how amazing you are.
I was thinking of the EB babies I "know" this morning and talking with the Lord, crying out rather that it is not fair and why and then His Spirit calmed my heart and gave me Peace.
I felt Him speaking to me, shushing me rather - reminding me of His promise that Blessed are those who weep, for Great is their Reward in Heaven.
And I thought on this for a while and I thought, are we to be careful what we wish for?
A cure, oh how I pray for a cure, but would I be praying for a lesser reward at the same time?
We know God is loving and perfect and just. What justice do Tripp and Jonah and Leah and Sam and all the other EB babies deserve? I can't even fathom it, their suffering is so so - no words are sufficient to describe it, which made me rejoice for them for their reward must be like none imaginable when they get to see our Father in Heaven and be held in the hands of Jesus.
Not that praying for a cure isn't what any mother whose child is suffering would do. I know I would and have prayed for yours, but if that prayer is unanswered, maybe we know He has something even better in store than a cure, and how great must that be!? For He is Just and His timing Always Right.
I just felt you eb mommies on my heart today especially. Much Love in Him,
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