I was turned on to this show from my dear friend who is slightly addicted to the OWN (Oprah Winfrey Network...you know who you are Lol!!!)
Anyways, it is a pretty compelling show. If you haven't seen a episode, it's about how people come down with illnesses and symptoms, that are either diagnosed wrong or are difficult to diagnose, and so it plays out with how they appeared, their search to find answers (many times misdiagnosed and several doctors later) through the medical field and then the final outcome.
I don't have a lot of t.v. time, usually in the evening around bedtime. I usually like mindless/junk t.v....Idol,
BH Housewives, Millionaire Matchmaker, Greys Anatomy....yeah...junk....but at the end of my day it's the perfect escape....
Mystery Diagnosis is pretty intense for me. It conjures up alot of emotions for me in regards to Hudson. Sometimes I am just compelled to watch....sometimes I wonder if I haven't done enough.
There is an episode with a baby who started seizing at 2 months...I think I cried the entire episode....it brought me right back to the earlier days....when we thought he was healthy....then the reflux and vomiting....then the seizures....the the chasing your tail trying to find answers. For this baby, it ended up being a vitamin B deficiency....I sat there with tears, thinking why couldn't our outcome been so simple? All this baby needed was a lifetime of heavy supplements of the deficiency....that would have been our dream answer! I felt jealous watching that episode...I wanted to be those parents who could say my child's catastrophic seizures disappeared with a simple vitamin....no....that is just not the way the story is written for us.
This morning I saw another one. A little boy seemingly healthy and developing normal. Had surgery for what was dx as a lazy eye...by age one he started loosing his abilities....he slowly regressed in walking and talking....for years he was misdiagnosed....they did Spinal Tap, MRI, CAT, muscle biopsy...they thought he had muscular dystrophy, but the biopsy came back normal. There were abnormalities on his brain scans...at one point one group of doctors were certain he had a brain tumor. After years of numerous tests, wrong leads, they got in yet another doctors hands, she did a blood test, testing for a gene that causes a rare disease affecting 10 known cases....he came back positive. The name...a long medical term....basically the nerves in the brain get bogged down and die....resulting in regression in motor skills and speech. There is no cure. They don't know what causes it...could be genetic, could be environmental.
At the end of the show they showed him wheel chair bound, parents divorced, mom loving on her son and treasuring every day she has with him. She ended the show saying that this is temporary and one day he will be free of this disease....well you can imagine the tears streaming from my face after that one. Funny how I totally felt like I could relate to that mother...I understood her pain...her outlook....her love and passion for her little boy....I just wanted to give her a big ole giant hug through the TV screen. Even though I don't know her, or know any of my blog friends...it's that same instant connection...it's a sisterhood of sorts....you feel so connected, you can relate in ways no one else can possibly understand...the journey for answers, the emotional roller coaster, the toll it takes on relationships and marriage, the fears, the hopes, the unimaginable fight for your flesh....the love that is unlike any other....
After watching that I got up and went into Hudson's room. Sound asleep...he appears so "normal" when he's sleeping so peacefully....I kissed his little forehead....I kissed his soft, puffy cheeks...and just felt so thankful he is here.
9 comments:
I do the same thing when I get a chance to watch that show.
I completely agree with you about having other blogs and people in similar situations that can relate. I don't feel so alone when I remember these other families even though most I have never met. There is just that connection.
We take each day as a treasure and are so thankful we still have our sweet babies.
Hope things are going well with sweet Hudson with the changes in meds.
For some reason I am having a hard time coming up with wording for comments today.
Know I love your family and I pray for you daily.
ive only seen that show twice...and i think it was those same two episodes! and i cried my eyes out too!
but i actually cried on the beverly hills housewife reunion...so i'm just a mess!
two words, chealsey lately...she won't make you cry.
I love mystery diagnoses. I know its weird but the amount of information I get is unreal. Maybe in a way my interest is because Finnian is undiagnosed I don't know. THere was an episode about dystonia and as soon as the man started to explain his symptoms I was like that man has dystonia he has the same symptoms as Finny. We will see what the muscle/skin biopsies, the LP and the amino acid tests show may be we will get an answer who knows
It's amazing how having our special children makes everything change. How we can relate to some people more now, and not relate to those we've known forever.....etc.
I don't know what I'd do without my blogging friends! I find so much comfort in knowing I'm not alone in all of this. Although, the heartache that comes from knowing others are struggling is a burden as well! I just want to be able to help so many and change their circumstances, along with mine own, but obviously I can't.....that's where the burden part comes from.
The crazy thing is I feel a stronger bond with so many Mommas that I have "met", than I do with my own husband, when Gavin is concerned. My husband never seems to get it! He rarely worries or does any care for him, and he just doesn't seem changed since having Gavin come into our lives. And, it really irritates me, because having Gavin has certainly changed me! Anyway, I love having the opportunity to get support from other Moms, who truly understand how I feel, even if our circumstances aren't exactly the same!
Thanks for coming into my life and sharing Hudson with me! Thinking of you and praying! Hugs!
i know how you feel.. and i'm thankful we have our "sisterhood"... so nice to have others who understand... hugs to you.
I watched the first one and cried right along with you! Somedays (heck who am I kidding-most day!) you all are the only ones who understand what I am going though.
Thanks so much for your commment, I cried while I read it because I can imagine everything you said! Wish we could all just take a vacation one time and meet!
Hugs!!
I am going to hold on to my belief that one day that might be Hudson on that show and even though we know some things about his health there is much to be discovered and I can just imagine crying happy tears at the end of the show and saying " I knew it would happen"...call me Pollyanna if you want.
Hugs to my sweet boy and family.
Blessed indeed, Hudson is here and is such a fighter. As though he is waiting for that "drug" to fix his little body. Ive seen ALL Mystery D. episodes! And remember the one youre talking about. It was awful seeing those old videos of him regressing. But I told my daughter who also loves this show that I could never be on it because I didnt want a close of my face and that "1 eye" on TV--HA, really the only annoying thing about that show. Do you ever sit there and "know" the diagnoses? I may have not nailed it but it seems I do know a thing or two when they show things like Hypotonia ect... AND yes, Im also reality show junky (thank god my DH is too--but dont tell anyone because he says the guys at work wouldnt understand! AND he doesnt want anyone to know he DVR's the Bachelor either! ) Beverly Hills is a new favorite and we're gearing up to watch New Yorks again soon. I agree I know a lot of people dont like these shows but like you say, its mindless tv and I guess I need that at the end of my day too.
I just read your last post about Pam calling you, isnt that nice when a Dr thinks about your for a change?! Its crazy how we are so surprised whe that happens. Im glad he has another plan-- I JUST HOPE ITS GOING TO MAKE A DIFFERENCE! Always praying for you and your family-
Heidi & Jack.
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