(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 feel...my 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.
Really?
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.
So.
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.
