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#1 of 35 Old 11-06-2010, 04:11 AM - Thread Starter
 
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My daughter was diagnosed with something awful 2 years ago, when she was 5 weeks old (cystic fibrosis).

Everything since then, everything, has been outrageously positive -- her genetic tests showed a very rare presumed very mild mutation, her sweat tests were borderline and then later, normal, she's pancreatic sufficient, she is tall and sturdy and healthy and a good weight, she has never gotten sick, she cultures no evil bugs, etc. etc. etc. a litany of hope that turned our expectations around.

The doctors were saying that maybe she'd never get sick, there's a new diagnostic category being developed for kids who have two broken genes but who never get sick, she's so healthy, all her tests are so good, she is probably one of THOSE kids, one of the ones not dying in her 20s waiting on the transplant lists for new lungs, one of the ones not doing 2+ hours of medical treatments every single day, one of the ones not going into hospital for 2-3 weeks 2-3 times a year. A lucky one, a healthy one, my daughter, they said, I hoped, I believed, I prayed.

So as part of their desire to move her to a not-going-to-die-from-this protocol, to a not-doomed protocol, to a will-outlive-her-mother protocol, they decided to redo some key diagnostic tests.

And the most important one, the key one, the one that she has NEVER had a bad result on, the one her results were NORMAL on, the one where her excellent normal results made her a not-going-to-die-horribly-and-young-after-suffering girl, THAT ONE

is bad.

is really bad.

wasn't expected to change.

no one knows why it changed.

no one has a theory.

no one has comforting words.

but today, today that I hate, today that I want to erase, today that I do not want to remember when I wake, today they moved her back into the doomed-child bucket, the going-to-suffer bucket, the dying-before-me bucket, the world-without-Bridget-in-it bucket.

This isn't a post about prognosis, so please don't try to help me with medical specifics.

This is a cry from a mother's heart who doesn't want to sleep because the dark is so dark tonight.

Oh, please.

Oh, WHY?

Oh, Bridget. I am so, so sorry.
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#2 of 35 Old 11-06-2010, 08:38 AM
 
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I couldn't read this and not post.



I'm so sorry momma.

Doctors aren't out to kill you or your children. Childbirth isn't inherently safe. Science is actually smarter than your intuition. Lighten up. Use sunscreen.

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#3 of 35 Old 11-06-2010, 11:15 AM
 
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#4 of 35 Old 11-06-2010, 11:55 AM
 
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My heart goes out to you and Bridget.

Michele - Homeschooling mom to Hadley, (10/03 - the 23 week preemie miracle) and Noah, (08/05)
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#5 of 35 Old 11-06-2010, 12:17 PM
 
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Oh mama, I want to hug you.

Mama to 2 CRAZY boys
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#6 of 35 Old 11-06-2010, 12:24 PM
 
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Mama, you have so much love for your child. I'm crying for you.
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#7 of 35 Old 11-06-2010, 12:56 PM
 
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I am so sorry. I wish there were more I could say.

Betsy, mama to beautiful, strong MZ twins Lillian and Kate, born 11 weeks early on January 10, 2006.
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#8 of 35 Old 11-06-2010, 02:24 PM
 
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I have you and Bridget in my thoughts and prayers.

Can they redo the test? Maybe this one was wrong since all the other ones were so different?
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#9 of 35 Old 11-06-2010, 04:04 PM
 
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Your post gave me goosebumps. You are an outstanding writer.

We have also been on an emotional rollercoaster: thinking we were going to have a "normal" child, to slowly realizing she may have some issues, to realizing that some of her issues could be life-threatening, to thinking she may have lifelong delays - then bouncing back to "she's going to do great," only to be snapped back into reality by a setback.

I so completely understand the heartbreak and exhaustion when you're dealing with the life of your child. Just know I'm thinking about you and I'm here if you need to talk. Hugs...
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#10 of 35 Old 11-06-2010, 04:34 PM
 
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Quote:
Originally Posted by hadleys_mom View Post
My heart goes out to you and Bridget.
Ditto
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#11 of 35 Old 11-06-2010, 05:06 PM - Thread Starter
 
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I am really grateful that this forum is here. I know that there's someplace I can let out the dark parts without scaring away all the nice moms with healthy kids who are afraid to look (not that I blame them, I wish I was one of them). Thank you.
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#12 of 35 Old 11-06-2010, 07:42 PM
 
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s
I can totally and completely empathize with you. I can't put it into words very well, but I've been through a very similar situation over and over and over. It's always out of the blue and a punch in the gut when something comes back unexpectedly bad. I'm sorry.
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#13 of 35 Old 11-06-2010, 07:48 PM
 
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Oh, mama. I am so, so sorry. I wish you peace tonight.

Sleepy mama to Colin Theodore 8-12-08 and Trevor Arthur 7-17-12.

 

 

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#14 of 35 Old 11-06-2010, 07:48 PM
 
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-Melanie
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#15 of 35 Old 11-06-2010, 08:17 PM
 
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I feel compelled to post because just yesterday my paternal cousin, who is my age (mid-30s), went in for a regular appointment with her CF specialist and was told she seems better than ever. The thing is, she was in that category that you are describing when we were kids. We grew up just knowing that she was not going to live past the age of 21, if she was lucky! Plus, my aunt and uncle smoked around her...so my mom just felt like my poor cousin was doomed to suffer greatly and die very young. Well, now she's married and has children and is happy and feeling good and getting great reports from her doctors.

I know you said you didn't want to discuss prognosis; you just want to be heard. I'm sorry if I overstepped with this post. The timing of it just felt too serendipitous. I've been saying prayers of thanks all day for my cousin...and then I saw your post. You and your daughter are in my thoughts.
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#16 of 35 Old 11-06-2010, 08:44 PM
 
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So so sorry to hear your news. I've been in that dark place, and I know the pain is undescribable. Just know that you are not alone--

Tired mama to my wild childenergy.gif ribbluyel.gif

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#17 of 35 Old 11-06-2010, 09:06 PM
 
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#18 of 35 Old 11-06-2010, 09:39 PM
 
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I live in your world (when I am not in complete denial). I have no words that can make it better. We are praying for peace & healing for your family.

Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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#19 of 35 Old 11-06-2010, 09:42 PM
 
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I am so incredibly sorry for this deep pain that you're experiencing.

It SUCKS to feel that way.

In love with Dh since 1998. We created Ds (7.1.03), Dd (10.16.06) and Dd (3.16.09).
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#20 of 35 Old 11-06-2010, 09:51 PM
 
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I'm so very sorry.
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#21 of 35 Old 11-06-2010, 09:51 PM
 
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Quote:
Originally Posted by SiobhanAoife View Post
I am really grateful that this forum is here. I know that there's someplace I can let out the dark parts without scaring away all the nice moms with healthy kids
I'm one of those Moms. Except... I'm not afraid to look as I know all too well what a fine line I walk.

I'm so sorry that you got this news. I can only imagine. But know that many have you all in their hearts and thoughts, and will provide shoulders for you to lean on when you need one. Whatever happens, you are blessed with your child. And she with you. {{{hugs}}}
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#22 of 35 Old 11-07-2010, 12:52 AM
 
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I am so very sorry, Mama...

I hope our thoughts and love can be some light in your darkness.


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#23 of 35 Old 11-07-2010, 01:01 AM
 
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Sending many hugs to you, mama.

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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#24 of 35 Old 11-07-2010, 01:02 AM
 
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I am so, so sorry. My mom heart just aches for you & your child.
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#25 of 35 Old 11-07-2010, 01:13 AM
 
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Perpetually exhausted single mother by choice to one little girl (2/06)
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#26 of 35 Old 11-07-2010, 04:40 PM
 
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I am broken-hearted for Bridget and for you, Momma. I can't imagine how dark things are right now. I will hope and hope and hope just because there has to be a tiny flicker of light in your darkness. Even the tiniest spark can bring hope to you both.

Weary SuperMama superhero.gifto my  amazing neurodiverse 6 y.o. DD hearts.gif and to my on-the-go neurotypical 3 y.o. DS wild.gif

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#27 of 35 Old 11-07-2010, 05:07 PM
 
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I'm sorry you're in pain right now.

There are so many fears that come with having a child with special needs. I hope today is a better day for you and that tomorrow is an even better day and that the days to come will be easier. I'm thinking of you and your family.

Normal is just a setting on your dryer.
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#28 of 35 Old 11-07-2010, 06:20 PM
 
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I am so sorry. I will keep you, Bridget and your family in my heart.

 
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#29 of 35 Old 11-07-2010, 07:07 PM
 
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I know that dark place, and I am sorry you're in it. There's no easy way through it; only the passage of time gets you to a different place.

Mama to my talkaholic DS (Oct 2003) and my climbaholic DD (May 2007).
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#30 of 35 Old 11-07-2010, 11:33 PM
 
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Oh mama I am so sorry. What horrible news. My thoughts and proayers are with you and your family.

Married to the love of my life, mom to DS :
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