Sunday, December 05, 2010

That Is Just Stupid.

(Some of you might think this post is bad timing, but I wrote it last week and am just now publishing it, so it is in no way in relation to the heart breaking tragedies in the recent days - please pray for our community in this time of grief)
Yes, each random topic relates to the other - and there is a whole lot of rambling to follow...

"Maybe You Should Think About How They Meant To Say It."

Everybody keep their underwear nice and straight, don't get them all wadded up.
This is just a post, not directed at anyone.

This is a soapbox moment.
I'm allowed to climb on up and I sure hope the sound system is working properly.
Please save your questions to the end.

What a lot of people don't understand is that if you haven't personally been through a situation - serious illness, a loss, a tragedy, the birth of a special needs child, etc. - that you really don't know how it feels.

You don't and it's annoying to pretend like you do.
Here's the thing.

Since Addie's birth, we have had an amazing onslaught of asinine comments from people.
Those asinine, hurtful and just plain rude comments even came from people that we specifically told not to say certain things around us because it was hurtful.

Frankly, first timers get a pass, but repeat offenders are intentionally trying to get on my nerves and to disrespect my daughter and my family.
The people who said that they understood, really didn't, and we let those comments slide.
In the beginning, I even let the comments slide when people said things like, "oh, I understand how you daughter almost failed math and we thought something was wrong with her" or "I understand how you feel because my son has asthma" or "I once had an ingrown toenail and had the rudest podiatrist"....ummm, right.
We even let a snarky comment or two slide about the intelligence of our sweet Baby Girl, but rest assured we have never forgotten and each and every time we see those people, that is what we think about.

So, I try my best to - as tactfully as possible - let other people know a general idea of what to say and what not to say to parents of children with special needs.

On the flip side of that...
from time to time, my sister tells me some of the stupid comments that people say to her when they find out that my two nephews died.
Oh, yes...stupid comments run amuck.
I won't dishonor her by sharing any of those comments.

Instead, we will focus on one of the stupidest things that a professional has ever said to her.
It took months and months, but my sister finally decided to join a support group to talk with other parents who have also lost children.

Part of the program "requires" that she see a counselor/therapist/psychiatrist once a month. Personally, I don't think anyone needs to be "counseling" my sister on the loss of her children if they don't know the pain first hand, but that is just my opinion.
This "counselor" made the statement to my sister that maybe she should think about how people intend their comments instead of the way she perceives them.
That is just stupid.
I mean really?
First off, I don't care how anyone intends their comments to be taken (I'm not a mind reader), it's how I take their comments.

Yes, special needs parents and parents who have experienced tragedies are sensitive to comments, reactions, the never ending stares, whispers and the gossip from people who have way too much time on their hands.
We are allowed to be that way.

If you said, "look on the bright side, at least your daughter has part of a working brain".
I am not going to look for that warm and fuzzy "intention" that you verbally slaughtered.
Depending on my mood will depend on what kind of response you get from me.
I am the worlds worst at sticking my foot in my mouth, I really truly am and could give you a list a mile long of the many times ridiculous comments came out of my mouth.
I have learned one very important thing over the last few years and that is to never tell someone that "I understand" when clearly I do not.

When my nephews died, I never told my sister that I understood....because that is stupid.
I don't understand and I pray that I never do.
In times of tragedy for other families, I don't pretend to know how they feel.

I think the best thing that people can do in those situations is to offer a hug, a pat on the arm, a freakin' honey baked ham or a chocolate cake, but for all the things good in this world, don't search for words that mean nothing.

Just don't say anything.
A hug says more than any words could say.

(....chasing some rabbits here...)

I know this may seem childish, but I don't think I will ever forgive my obstetrician for standing across the room the morning of Addie's birth and not acknowledging everything surrounding the birth of my daughter.
I don't think I will ever forgive her for not holding my hand, giving me a hug, asking me if I needed anything or telling me that my daughter was beautiful.
I didn't want her to be my friend, but as a professional, she had the power to change the course of the future for my baby.

Had I not been a strong willed and determined parent who loved my baby no matter the circumstances, I could have drown in grief and never taken the steps to give my baby all that she deserved because I was never encouraged to love her.

After all...she exhibited "a problem".
My doctor was the first earthly being to touch my Sweet Addie.
She was the first one to see her and she was also the first one to dishonor her.
She did not congratulate me or tell me one positive thing about my sweet Baby Girl.

(...and while I'm venting...)
I don't know if I have ever put into writing that with the exception of ONE physician - that I changed to brand new providers for my entire family, for everything - from head to toe.
I couldn't handle going in and seeing the same people that I saw when I was pregnant with Addie.
Once a few of them found out about Addie, it was just awkward from then on each time I saw them.
It's almost like they didn't know what to say to me.
I never wanted them to say anything, I just wanted them to treat me "normal".
I could go on and on and on, but this post came about for two reasons.

The first was because I had to sit at Thanksgiving lunch and listen to my sister tell me the comment that this "counselor" made to her that made her heart ache and made her feel like a child who was being scolded.
Second, because when I went in to see my GP the other day, he walked in the room, straight over to me and hugged me and told me that it was good to see me.

Holy hell.
Is that too difficult for people?
No, it's not and it completely made my day.
It also confirmed that I made the right decision by choosing him because he is a man of compassion and understanding and one who I can build a relationship with.

He doesn't tell me how I should feel or what I should think and he doesn't talk to me about Addie, he doesn't have to.
His actions speak louder than words.
My one word of advice tonight is to please remember that.
Your actions speak louder than words.
If you don't know what to say, just don't say anything, but do something.

Give that person a hug, take them a meal, send them a simple "thinking of you" card, offer to run an errand for them....anything.
One of the nicest things anyone did for Julien was the first summer after Addie was born, the Mother of one of Julien's friends offered to take him to the pool for the day with their family.
That was amazing to us.
It doesn't sound like a lot but it made Julien feel special and it made us feel like we were worthy of their efforts.
(Thank you again from the bottom of my heart Susan W.)
As I'm climbing down off my soapbox and trying to find my bed, I want you all to know how grateful I am for your prayers and support.

Please know that I have more flaws than any blog post could list out for you and I make mistakes each and every day, but the mistakes that I make hopefully are not hurtful to people.

I have no desire to cause heartache to anyone - because that - I do understand.


Jennifer said...

Thank you for taking the time to write and share this post.

Anonymous said...

I know that this time of year is probably very difficult on you and your sister as well as all of your family as both of you have gone through different but difficult circumstances around the holiday season. I will be thinking of you all; please just give your sister a hug from one of your readers to tell her we are thinking of you both.

csmith said...

Well said Jenn! Well said!!!!! Carie

Isaacson's said...

I have to say I LOVE LOVE LOVE your post. Some people are just plain rude and some have the sweetest hearts, guess it's all on how they were raised. Thinking of you and your family. So glad I found you to talk with and relate with on some levels.
Thanks, Sam

Julie said...

Thank you. You have said exactly what I feel. I have never experienced what it is like from birth, but the choice we made to have Daisy in our lives was an important one. All of the comments, looks and gestures that we get just because our family is different hasn't changed. If only others would understand that we aren't looking for their "cares or concerns", we only want acceptance of our daughter.

Monique said...

Thank you for this post. I truly believe actions do speak louder than words. You have a beautiful family and I for one appreciate you sharing them with us here.

Anonymous said...

I will gladly take Julien again and Addie if she'll go with me!! Love and hugs to your family.

Granna said...

I always hesitate to tell anyone that I understand...even if you have been through basically the same situation (loss of a loved one, illness, etc.) you don't know how they feel because no two of us share the same emotional make-up or feelings. I remember my daughter calling me the morning after giving birth to her first child. The birth had been scary...we almost lost both our daughter and granddaughter to an incredibly rare disease called acute fatty liver in pregnancy. Kim called in tears as the OB had come in that morning (not the OB who had delivered our Addi, but one in the practice) and began her speech with..."If I were you I would never have another child." Can you child's hormones were raging, she had almost died, and then this professional made this statement! Well, the next day the sage and wise OB comes in and says basically she did not know what she was talking about...thus we have Levi and Lila!
Hug my Addie and pray for the insensitive people about us!!!

Apryl said...

Good Job Jen....I want to be like you when I grow up...hahahaha!!!

Your older and favorite cousin,

Jenn Riley said...

I agree Jenn! People have no idea and even I have no idea about Hunter even though I live across the street and he is my nephew. I still say things that upset Sam even though I didn't mean them too. :( people can be so rude sometimes!