Irritated, ashamed, don't deserve support, want it anyway - Mothering Forums
Forum Jump: 
 
Thread Tools
#1 of 13 Old 02-18-2012, 10:18 PM - Thread Starter
 
SiobhanAoife's Avatar
 
Join Date: Jun 2008
Posts: 295
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I am irritated by my daughter's situation. She has cystic fibrosis, and has just gotten her first bad chest x-ray and been put on a bunch of twice-daily, lengthy, unpleasant medical treatments - you can imagine how easy it is to explain that to a 3 year old. And then on top of that, she's just been referred by her preschool director for assessment by an SLP and a PT, and the SLP says she absolutely has some sort of hypersensitivity issue and must been assessed by an OT ASAP.

 

So I'm irritated, deeply offended at God, pissed off, because I was resigned to being in the MEDICAL special needs bucket, I grapple with it, I fear it, I hate it, but I also own it, and I'm good at parenting a child with medical special needs. So how dare God go and put me in the developmental special needs bucket ALSO? I rage. I take great offense. I border on despair. I am irked. I am petty and annoyed. I am shallow and privileged and entitled and recoil at having to take on a second burden.

 

And so I come here to post, full of piss and vinegar, and a noticeable dearth of good sense. And I read the current threads. And they're from parents dealing with much more challenging things than I am dealing with. Much more serious medical conditions and much more serious developmental conditions. And I feel awful - ashamed, petty, shallow, wrong, bad. I came to complain to the bleeding about my hangnails.

 

But. But. But. I have not conquered my vitriol, I am not master of my emotions. I just now also despise myself for having them. "I cried because I had no shoes until I met a man who had no feet", is the quotation - but I cannot rise to the occasion. Or I won't, which is despicable.

 

So. I don't deserve support. I need it anyway.

 

I am so. so. so. sad.

 

 

SiobhanAoife is offline  
#2 of 13 Old 02-18-2012, 11:48 PM
 
skyblufig's Avatar
 
Join Date: Aug 2006
Location: on the shores of Lake Michigan
Posts: 424
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Mama, I couldn't read your post and not respond. I'm so sorry for what you're going through and what you're feeling. That totally sucks. I think everyone's problems are relative to their own situation, so don't heap guilt about what you're feeling on top of everything else you have to deal with. You have every right to feel however you feel! I have no idea if that helps at all, but {{hugs}}}.

 

 


Jfly-by-nursing1.gif, partner-in-crime to Dfamilybed2.gif, mama to run.gif4, including our brand new rainbow1284.gifbaby.gifmissing my 7-wk-er

skyblufig is offline  
#3 of 13 Old 02-19-2012, 06:08 AM
 
Emmeline II's Avatar
 
Join Date: Feb 2006
Posts: 8,832
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by skyblufig View Post I'm so sorry for what you're going through and what you're feeling. That totally sucks. I think everyone's problems are relative to their own situation, so don't heap guilt about what you're feeling on top of everything else you have to deal with. You have every right to feel however you feel! I have no idea if that helps at all, but {{hugs}}}.


yeahthat.gif


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
Emmeline II is offline  
#4 of 13 Old 02-19-2012, 08:23 AM
 
Bokonon's Avatar
 
Join Date: Aug 2009
Location: San Diego
Posts: 2,975
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Please be gentle on yourself.  You have been dealt a rough hand.  My children aren't special needs and I feel overwhelmed with just the daily routine a lot of the time - we all have our own threshold for what we can handle with grace.  I'm sure you will get through this and be amazing at it, but allow yourself to feel however you feel about it.  It's not fair to you, and it's not fair to your daughter that these are the issues you face.

 

A good friend of mine has a son with cystic fibrosis and was just diagnosed with Asperger's.  *I'm* angry for her.  It's not fair.  Children aren't supposed to be sick.  But she is taking it day by day and handling it how she can, and so will you.

 

Of course you deserve support.  You are struggling.  It has nothing to do with anyone else and how their situation is better or worse than yours.  


A, jammin.gif mama to a boy (2005) and a girl (2009)
Bokonon is offline  
#5 of 13 Old 02-19-2012, 09:32 AM
 
Buzzer Beater's Avatar
 
Join Date: Mar 2009
Posts: 1,187
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Siobahn I can be here to support you. Your description of your emotions hits home with me... in our 20 week ultrasound we found out dd2 has bilateral club feet. We spent 20 weeks adjusting to that, handling that, understanding that, you get it. Measuring where we were and where we needed to be. We started casting and had surgery on her achilles tendons. She will need braces at night until she is five, and hopefully no more casting. When she was ten days old we got a call from our ped to tell us dd2 has cystic fibrosis. She actually has a very rare genetic mutation and we do not know at this point whether or not she will get sick. We've had conflicting reports from experts. At 21 months she is also now in speech therapy because she is not talking, and we've had her in OT for oral sensitivities, food refusal etc.

 

I know what you mean thinking about parents who have bigger problems to deal with- my best friend has a child with a genetic syndrome that is very rare and another of our circle of friends has a ds with Down Syndrome. I'm careful with what I say/do/feel because outwardly my child is very normal and thriving so far. Much of what we go through is private and to bring it up (especially with folks who are familiar with more severe problems) seems to be mooching for sympathy. You deserve support. Do you have family close?

Buzzer Beater is offline  
#6 of 13 Old 02-19-2012, 09:44 AM
 
erigeron's Avatar
 
Join Date: Oct 2010
Posts: 2,345
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

typing one-handed w/ sleeping baby. dd has one very mild special need (so far) and I definitely shed a few tears when she was put in a brace. it's worse fr other parents but doesn't invalidate your feelings. I go back to a quote from a Chris Crutcher novel--"just because someone else is up to their neck in sh*t doesn't mean the stuff around your feet is molasses".


WOHM to a girl jog.gif (6-11) and a new baby boy stork-boy.gif (2-14) and adjusting to the full-time life and husband being a SAHD. 
erigeron is offline  
#7 of 13 Old 02-19-2012, 10:39 AM
 
Peony's Avatar
 
Join Date: Nov 2003
Posts: 25,342
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

You deserve your sadness. We don't go into this journey wanting to end up on this forum, it just happens. And yes there will always be someone out there that seems to handle so much more with more grace then we can even conceive of. It just doesn't mean that we can't and should not be pissed off about the hand that we were dealt. Mild SNs are special needs too and stacking diagnosis upon each other is not fair either. I vote for a limit of one per child please! Day by day is the only way some survive. My kids's issues are physically hidden, they look normal, but the hours and hours that I spend every day dealing with the issues tell another story. 

 

I've got one with medical SNs, one with physiological issues along with a few other things, and then when my third started signs of developmental issues, I lost it. I was bitter, mad, sad, you name it. It's since been a couple years since then, he still gets 8 hours of therapy a week, I'm less bitter but it still doesn't mean I think it is fair. And that line about how I got all these kids because I could handle it, is just bullshit to me. Sometimes it just helps to you that you are not alone. hug2.gif


There is no way to happiness, happiness is the way.
Peony is offline  
#8 of 13 Old 02-19-2012, 02:50 PM
 
Linda on the move's Avatar
 
Join Date: Jun 2005
Location: basking in the sunshine
Posts: 10,545
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 29 Post(s)

It doesn't do any good to compare.

 

here's an analogy -- if you were run over and killed, would it matter if it had been a semi that hit you or a motorcycle?

 

And when it comes to special needs stuff, you really, really can't compare. Even with my own DD (who is on the autism spectrum and is now 15) there were phases when it was pretty easy and other phases when it was an overwhelming nightmare.  

 

You are where you are right now, and you feel the way you do about it. And that's OK. Just feel it. Write about it, draw about it, punch pillows, go far away from people and scream. Yell at God. Cry. Talk to a counselor. Do whatever you need to do to accept and embrace and feel every single part of this. Because this is where you are for now.

 

And ironically, the path to moving forward and to feeling better is to accept how you feel right now.

 

(I saw a counselor and did a lot of yoga -- different things work for different people)


but everything has pros and cons  shrug.gif

Linda on the move is online now  
#9 of 13 Old 02-20-2012, 06:19 AM
 
karne's Avatar
 
Join Date: Jul 2005
Posts: 3,623
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)


Quote:
Originally Posted by SiobhanAoife View Post

 

 

But. But. But. I have not conquered my vitriol, I am not master of my emotions. I just now also despise myself for having them. "I cried because I had no shoes until I met a man who had no feet", is the quotation - but I cannot rise to the occasion. Or I won't, which is despicable.

 

So. I don't deserve support. I need it anyway.

 

I am so. so. so. sad.

 

 



You absolutely deserve support.  I don't imagine there is anyone here who hasn't had at least several moments of saying "I am not doing this.  I can't do it.  It is just beyond unfair, and I have nothing to give".  I know I have.  It is so, so hard to be in that place of anger and despair, and yes, sometimes fear.  But how good that you came here and said it.  We can't do this without support.  I am offering a virtual hug to you.  None of this is easy or fair.  Of course you will get through it and be the parent you need to be, but in the meantime take good care of yourself, and be easy on yourself.

karne is offline  
#10 of 13 Old 02-20-2012, 10:25 PM
 
joensally's Avatar
 
Join Date: Jun 2006
Posts: 2,977
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

It strikes me, based on the way that you express yourself, that you're deeply emotional and expressive (good things!).  I think that perhaps it's your core temperament that's keeping this burbling in the front of your mind, and keeping you expressive and descriptive.  You do deserve support, and don't deserve self-hatred.  This is part of who you are and how you process your life.

 

Certainly, other parents are faced with "worse" diagnoses or prognoses.  That doesn't mean your circumstances are not tremendously difficult.

 

I count my blessings all the time.  It doesn't mean that some of what we go through doesn't just absolutely, horribly, unequivocally suck.

 

I highly recommend finding someone to talk to, just to process it.  I did this a few years ago and it helped immensely.

 

I love the quote above about molasses around the feet.


Mom to a teenager and a middle schooler.

joensally is offline  
#11 of 13 Old 02-21-2012, 10:12 AM
 
Qestia's Avatar
 
Join Date: Sep 2005
Location: Boston
Posts: 2,030
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I just wanted to thank you for posting. I'm feeling a lot of anger and depression today about my as-yet undiagnosed son. I needed to hear that other people have these feelings too. thank you.


Mom to DS 5/05 and DD 9/08
Qestia is offline  
#12 of 13 Old 02-23-2012, 09:54 PM - Thread Starter
 
SiobhanAoife's Avatar
 
Join Date: Jun 2008
Posts: 295
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Thank you, all of you.

 

I get embarrassed after posting something so emotional, so it takes me a while to acknowledge people's responses, but I read them as you write them and they mean a lot to me. It is a very real gift to me that this forum exists.

 

To Qestia, I feel for you. I hope you get some answers soon, and that they help.

SiobhanAoife is offline  
#13 of 13 Old 02-29-2012, 07:44 AM
 
Cornelia's Avatar
 
Join Date: Jun 2006
Posts: 65
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

We knowingly adopted a child with CF.  That we felt we could handle.  Then he was diagnosed with Bipolar and I was mad.  A year later, he was diagnosed with Autism.  I haven't quite gotten over my angry about that one, three years later.  He did NOT deserve all of this garbage.  He just didn't.

 

CF sucks.  There's no better word for it, really there's not.  We just got out of our second inpatient this YEAR, and it's a sad day when the CF parents chat in the kitchen because we all understand where the others are coming from.  It's sad that we're "different" than other families.  It's awful that our kids have to do HOURS of treatments every day.  Yet, this is what we are dealt.

 

We have a beanbag chair, and special toys for treatment times.  We put on TV, and we let him have his toys.  It doesn't make up for the years of his life that he's teethered when other kids get to run and play, but it makes it more tolerable for him usually.

 

We learn to live with this.We don't like it, but we live with it.  Of course you deserve support.  No one should have to deal with this without support, no one.

Cornelia is offline  
Reply

Tags
Special Needs Parenting

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off