Tag: life lessons

BIG NEWS ALERT

After 3 tough months battling the insurance company to continue coverage for Daphne’s medicine (N-Acetyl-Cysteine) that may partially reverse her disease…
I WON!!!
Excitement is an understatement 🙌🏻
My last update on this topic was winning the appeal to get a 3 month courteous fill to give me time to fight them, many hours on the phone with various agents, trying to figure out the right form and process, trying to get the doctors office to do their part because in the end I can do all the work except complete the final paperwork, so annoying but thankful they stuck it through with me and I will be sending them a sweet 🎂 treat for being so sweet (a little exaggerated 🙄), but my dad always taught me “you attract more bees with honey”!
A special shout out to Paula at the insurance company.  I fell in love with the first agent I made an appeal with several months ago but Paula took it to a whole new level and really cared and took ownership in helping me.

You may think it’s easy but seriously some people and processes are setup just to be difficult just to make you quit, I swear.  

Follow me for a minute here…. 

Believe me it’s true, in my own job I see it and even play off it ( sorry not sorry sometimes) so that is just the case in other careers as well.  

One thing that has always given me the edge to not giving up are those people that say “Who’s going to own it?  Are you going to own it?”  They are saying this knowing good and well they should be the ones owning it but you being the better person, steps up and says, yes I will.

In the back of your head your doing this, because 1. You’re so good at it 😜, 2. You will learn valuable lessons along the way, 3. At some point in the future it will benefit you.

So thank you to all those who have done this.  You have gotten me to this point.  Thank you for teaching me how to help others want to do this as well. My rule in dealing with the insurance folks is to be nice, courteous, understanding, listen, be realistic in what I am asking for and take ownership of the issue.  Paula did all of those things and more.  She called me everyday when she said she would, to check on the status and she made the final step to get this approved happen!  Paula my dear, you have just made my dreams for Advocacy for Daphne’s Lamp a reality.  

I think this shirt was made for me and every other Mito mama I have met!

***It’s not my most glamorous picture but I will be honest I am usually in pajamas by 6pm and tonight squirmy little Daphne would not cooperate very well but that’s my life.

This is just the beginning, I am going to D.C to meet with Congress June 29th and I will be pushing for the next big thing.

Until I have to appeal again in another year, I am making steps to make this fight even easier, stay tuned for those details.

This is for my daughter Daphne and what the future of those involved in with #daphneslamp will look like. I don’t take NO for an answer and I will put up one hell of a fight, so get ready. Get on board with the movement it’s going to be BIG!

#mitostrong 💚 #daphnestrong

One thankful and Happy Mama tonight 😊

First Born

Adelaide is my first born and no one can take that title from her.

She has had a rough few weeks and that is part of growing up, but truth be told it has been much harder on me than on her.

As my uncle laughed at me telling him what we have been going through with her, he said “Desirée…she is just like you!”

Yeah, yeah I know but wowsa!

Then he said, “wait until she turns 16, she is going to hate you!”  Oh great, thanks! 🙂

But even with these moments, it is so nice for her to see the reason for my doings and say “hey you know, it wasn’t bad being Hermione for Halloween.”

(back story…she begged for this in July and wanted the really expensive cape from Universal and I said no, but instead ordered it from Amazon, she was thrilled…..until the Halloween catalogs starting coming out then she wanted a $200 costume from Chasing Fireflies….sorry Sista, not happening and you can imagine how it went from then, but I did offer her to buy a new costume with her own money which she did not have enough of and she could find ways to make more money but that was JUST NOT FAIR!)

She has returned to her sweet self and maybe even a little more compassionate than before and expressive of her feelings and descriptive of her days.

That is all I want as her parent.

Parenting Is Hard

If it’s not, your not doing your job.

Rich and I had a challenging event this week and it was one I NEVER thought I would be faced with. 

Call it a life lesson for us or a life lesson for her but either way it was tough.

I reached out to several people for guidance.  

I needed it. 

I was at a point of exploding and knew I needed to handle it calmly (not necessarily a strength of mine) so I knew I needed a clear plan by the end of the day.

I had to sit all day at work and fester over this.

It was worse than being the kid knowing your going to get in trouble and just waiting for your parent to bring it up.

Ugh!

I talked to several people throughout the day, it’s what I do for guidance, because I know my thoughts or opinions are not always the best and getting different perspectives and ways to handle something is.  Rich is super calm and collected but a little too nice and believing sometimes and I am definitely the hardass.

We gave her a chance to explain what she did and why she did it and how she thought she should be punished.

Unfortunately that did not happen and not much remorse was shown except for different elements of her punishment.

The talks continued into day two and three and I hope we are finally on the other side. She  is accepting of her punishments now and is being her normal sweet sassy self.

This situation was tough and I know this will not be the last and they will get worse in their severity but I hope that all these life lessons are remembered and one day she will look back on them and appreciate it.

I have encountered plenty of people in my life that are a real pain in the butt and I do not want my child to be one of those.

My motto: “Kids, the good, the bad and the ugly are 100% a product of their parents.” 

There is plenty to influence them but it’s your job to provide the tools to make them successful at handling anything. 

There were signs and words from friends and family that I was doing the right things even if she made me doubt me.

I have not been on Pinterest in too long and that day I logged on and found this article…boy did it hit home:

How to Be the Mom Your Strong-Willed Child Needs You to Be

“So stand strong. Your child needs you.”

XoXo Mentally Exhausted Momma