Not sure what to think...

[Phoenix~Mama]

I wasn't sure about posting here or not...  Neither one of my kids are really labeled as special needs... but there are a lot of medical issues going on with both of them right now, and I'm super stressed and just have no idea where to go for some kind of support.

My DS is a preemie, and has your normal high risk respiratory issues.  He was just hospitalized over the past weekend for pneumonia and RSV.  He's home and doing awesome, getting nebulier treatments.

DD was diagnosed with asthma in Decemeber... but now at her appointment last night, she was put down as "failure to thrive" as she has lost more than a pound in two months, and she was already on the very petitie side for her age... But the scary thing... the doctor mentioned her symptoms could mean cystic fibrosis.

So of course I'm a mess.  I'm praying with everything in me that she doesn't have that... but I'm definitely scared.  My Mom told me this morning my Dad had a cousin who died from CF when she was 10.  So, that confirmed at least one side being carriers...  :(

I'm feeling a lot of different emotions... none of them that great.  I'm wondering why my kids are sick?  Why can't they catch a break? 

Has anyone else been through these early stages of "something is wrong with your kid"  how did you shift through all the emotions and find your Mama strength to be strong for your kids?  I know when I got home from the doc last night and looked up CF, I cried.  My DD was sitting on my lap and tears fell and I just kept hugging her tight and kissing her.  I know I can't cry in front of her with all this stuff going on.

I also know when I need to I've been able to pull out Mama stone face.  lol  Like everytime they have to get an IV in DS.  Ugh... that just does not get easier to watch.

[EarthMommy80]

  I don't have any advice, but I couldn't read and not offer hugs.

[isisreturning]

FWIW, I think it's fine to cry in front of your kids - to a degree. It's natural to feel scared and worried sometimes, and I think it's fine to model that, especially if they're seeing you experience a range of emotions - from sadness to strength.

There isn't any one way to "do it" when you're faced with the news that your child has as a life-threatening illness. You just endure, and adapt, and take care of business during your periods of strength, and let others help during your periods of sadness.

Best of luck - here's hoping that CF isn't an issue for your DC after all..

[sbgrace]

I don't know honestly. I cried. A lot. It's a grief process and that, like all griefs, takes time to move through. You do the best you can. Lots of special needs parents (yes, this is you....you're dealing with special needs too) need medicine at times and that's ok if you find yourself there. But time helps.

That said, I have always found that the time when it was "what if" and "what could be" and "maybe" was darkest for me. Well, getting a diagnosis you didn't want is dark too but it's different. I think the unkowns and maybes are extremely hard emotionally. Once you get a diagnosis you start known grieving and grieving is a step toward healing. Anyway, I think you're at an emotionally very difficult point right now.

My son had a sweat test for CF. He was negative. I pray she is as well. I'm going to suggest you don't read anymore on CF. Sometimes you find things that are darker than reality or outdated and, at any rate, it's not helpful for any of you for you to be researching the might be stuff right now.

[karne]

Oh gosh, when my ds was little (preemie) it seemed that we spent every waking moment trying to keep him out of the hospital.  RSV 2x/asthma/life threatening rota-virus.  There was no room after a while for fear or tears.  I think the only way we got through it was people showing up at our door with food and hugs.  You so need support during these times!  I can't figure out where the hug smileys are in this new format, but here's a big one for you anyway!

[anj_rn]

We struggle with the same things.  So lots of hugs your ways.  We have been through lots of tests (it seems like every doc has a theory).  Now, when one of the docs makes a suggestion of something we should do I ask them:  What is the test for it?  How will it change her current treatment/therapy?  What is the possibility that this is the diagnosis?   I have had docs want to put DD through difficult tests for a dz she has 1/5000 chance of having, that can't be treated.

In your case, the test for CF is not a big deal.  CF can be aggressively managed, which increases the life span.  You just need to ask what the chances are your child has it, and how soon a test can be scheduled.  Until you have results, do not look on the internet for research.  People post horribly outdated, scary stuff out there.  You will onl whip yourself into a frenzy about something that is not even a positive diagnosis.

Deep breaths, hugs and comfort to you.