Rise or Run?

Fear

We've all experienced it,

and if we are at this point in life probably overcome quite a bit of it.

What do you do when your family and friends "FEAR" your child?

In this life though tough, we see people rise to the challenge and come along side us to help create our new normal.

But we all know at least one person, whether a friend or family member who doesn't.

• In some cases they are very vocal  
• Other times show favor to your "typical" children over your Tubie,
• Still other times it's a distinct hesitation and uncomfortable air when they are around your family.
• And it can be a quick change due to experiencing an emergency medical situation

I will tell you about my mom, 

she is kind of a mix of all of these.

She is and has been super supportive, helpful around my house or willing to take my older girls for the night, 

But the thought of taking Nico and being the sole care provider just really makes her uncomfortable.

At first we were learning how to use all Nico's equipment and so I didn't notice how out of sorts it all made her, then over the last 18 months I began to catch onto bits of conversation like,

"well we will be there for one night so we will take the kids so you can have a date, and then you can come pick Nico up and take him home for the night okay..."

Or

"kelz, I got trained in CPR at work this week, but it hurts my neck so in an emergency I don't know how I would do?"

And so I recently asked her if she would ever be comfortable taking Nico too.

She said "Yes, but not unless you were close by and available because I am secretly afraid he will choke on something and that he could die on my watch."

I tell you this story because my mom has seen me have to remove food from Nico's airway, and I was a breath away from having her call 911 because he had it lodged good! We both knew without saying how close it was, but I got it out.

My mom loves her grandchildren and 4 of the 8 have a special need of some kind and she has adapted into a very knowledgeable Grammy, but one who isn't afraid to let us know her limits.

She has a healthy FEAR and respect for the things that could go wrong.

But the difference between her and some other's is she is not doing it to be mean, and she does rise to the occasion when confident.

What do you do when the "FEAR" of your child becomes abusive to your family?

Is say abusive because giving someone ultimatums or the opinions I've heard said to the parents of these kids is emotional abuse in my opinion.

And you work to hard keeping your kids safe to be spoken to that way ever!

Such as...

• "you allow the doctor to put that tube in and we will NEVER babysit your kids again"
• "well if it was my kid he/she wouldn't behave that way, I wouldn't allow it"
• "you must not being doing it right"
• "can't you do that somewhere else! it's gross" (bolus feeding in public)

You have two choices...Rise or Run...

I don't think we should try to force people to want to be around our kids/family, 

but I also now wouldn't hesitate to let those people know how saying things like this are not okay.

We would also not be around people who said things like this, as we are teaching our kids that people's differences make them special and we still treat them with respect.

But...

If you choose to keep associating with them then you need to go into it with the strength to know you are doing what your child needs, 

feeding tubes aren't given for no reason,

That you can stick up for yourself and your family and should,

That being angry will only hurt you so develop a thick skin.

Find a group of people who you can be around who aren't afraid whether online or in person.