Summer has started

I can hardly believe that Adelaide just finished 3rd grade but this sweet, sassy, independent and amazing little lady is officially a 4th grader.

The last day of school resulted in me picking her up early from after school care per her request and then getting begged by her friend to bring her home as well which gave me an excuse to get them Snow 2 Go (my guilty summer pleasure of the most delicious shaved ice I have ever had).

The first movie in the park (outdoors on a big screen with snacks and kids running around everywhere)  luckily it was Daphne’s favorite movie and where she was a little unsure at first she ended the night in all smiles, and stomping her foot to the music.

Today we surprised Rich with Deep Sea Fishing with a very early wake up at 4am then brunch at one of our favorite spots afterwards. 

Daphne didn’t like two of the guests on the boat but luckily fell asleep and missed he entire fishing experience and woke up moments before we docked.  Thankful she was happy for the boat ride and brunch!

I would have loved to have slept on that boat, rocking waves, the sounds of the waves and the cool salty air, yes please!  That girl was in heaven!

We did not catch any fish we could keep but Rich an Adelaide did both catch a couple Sculpin.  Did you know the fins are toxic if they hit you, as the skipper said not toxic like your going to die but it’s going to hurt really bad!

Everyone was tired except Daphne and took a nap when we got home. 

I hope all the dads out there had a great day!

Xoxo desiree

Christmas 2016

This year we stayed on the west coast for Christmas, for the most part at least, Adelaide went back east for a week to visit family and friends and I helped transport one leg of that trip.

My trip was very short but it was nice to see family and friends for a little bit at least, it’s been a year since I was home and one of my parents dogs made that evident. Here is little Darby insisting on sleeping on my bed my last night there. 

Christmas snuck up on me a little this year and therefore I was out shopping on Christmas Eve! 

I got most of what I needed, my poor husband did not get everything I planned for him but I will make it up to him.

Nonetheless we had a great time and got to share in some holiday festivities with friends and neighbors that we usually miss out on.

I hope everyone had a Great Christmas!

Cooking baking all day….not my thing but it had to be done.

I love how they wrap almost every branch to the top, this picture does not even show the beauty.

This is pure happiness and I am so happy we could give this to her.

Who’s house looks like this?!

Note she was fine, just funny moments captured in the first few mintues of wheels on her feet, she got the hang out it very soon after.

Daphne’s first Candy Cane. It’s Christmas so it’s okay that she just had her first taste of candy right?!

The MOST delicious Whiskey Sour I have ever tasted (cudos to the hubby), and that says a lot coming from me because I do not like Whiskey, I mean like at all, bleh, just give me wine, but oh my this was delish!!

We wish everyone a Safe and Happy New Years Eve!

We have some fun plans for the Holiday so stay tuned for pictures, that’s if I can keep my hands dry enough to use the camera (hint)!

XO Desiree

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.

Mito Family Social

Rich and I will be hosting a Family Social for those with Mitochondrial Disease.

This is going to be hard to meet other families, face to face, who are going through this.

Right now we don’t know anyone else.  I have talked to some families online but this is going to be in PERSON!

I usually love these kind of events and networking and talking, it’s something I am good at, but I have to say I am a little nervous. Rich is not looking forward to it, this is not in his wheelhouse at all but we’ll get through it and I’ll report back on how it was.

So I have a favor to ask.

I know my blog has a lot of traffic. I am talking almost 5,000 views and 1,000 visitors since it was created in May. That is incredible and I feel absolutely blessed to be spreading awareness about the disease as well as sharing things about my family.

I would love it if you could pass the blog along to more people and to hopefully reach families dealing with similar issues even if not Mitochondrial because a health condition with your child is never fun or easy and you need as much support as you can get.

I would love to see a large attendance at the event and I am certain you can help.

Thank you so much for being loyal followers!

When you don’t know what to say…

As Daphne’s parents we now regularly experience the awkward situation of sharing Daphne’s story with friends or neighbors or co-workers. It’s actually not awkward for us. For us the story is well rehearsed, and it’s something that although will always be painful, we’ve accepted to some degree. But it is awkward for the listener. They are now instantly put in the position of having to respond to the most devastating news a parent could share, that their child has a serious rare disease. Nobody knows what to say.

A digression (Rich): when I was in college, a very good, lifelong friend of mine experienced the sudden and unexpected loss of his father. I thought a lot about what I would say when I saw him. Everything I thought of seemed so woefully inadequate that when I finally did see him, I said nothing.

My new perspective is this, saying something is always better than not saying anything. The text, “I’m sorry to hear what you’re going through,” feels inadequate, almost trite, to the sender. But it’s not. It means a lot.

People often say the wrong thing. Parents often feel the need to respond with their own child’s medical story, even if it’s off base. Somehow the story of your child’s frenulum isn’t quite on par with the fact that my child can’t use her arms. But, you’re concerned and engaged, and I appreciate that.

Now from Desiree: I have not publicized this as much as I do other things on Facebook and Instagram. I have a lot of “friends” from various walks of my life and some close, some not, but some that are always good about giving me a like on a picture or a comment so I still feel close with them.

I made a post on Facebook a couple months ago asking for thoughts and prayers about Daphne when she was getting an MRI. That post received a lot of comments and likes.

When we found out more about her disease I decided not to make a post for all to see and then jump on board to follow at that point, but for the group that cared enough to comment or like my MRI post and then to go back to it to see what I wrote.

Where am I going with this?

I have a lot a friends that I consider close and that I try to make an extra effort to stay in touch with since I moved to the other side of the country that have not reached out to me.

That have not sent a text, called or pinged me on Facebook.

It hurts. A lot.

I had a post about Criticism but decided to take it down because I got angry. A little angrier than I do in posts about the Doctors but I still believe in what I wrote.

I used to judge people.

I used to think there was a simple fix to most things.

I served a friend and coworker a piece of “humble pie” as a friend so uniquely called it and that person is angry with me.

Two very important lessons that I believe pertain to everyone:

  1. you cannot change someone
  2. if you don’t like something, remove yourself because you cannot make someone else do anything

*this does not apply to learning how to clean, cook, be helpful, etc. (men I am talking to you here 😉

So, we’ll leave you with this:

You can never completely understand what someone else is going through. But if you are being kind, compassionate and loving, your words are never misplaced.

July 4th

We had such a great weekend!

We had some of our best friends visiting from WV.

The girls got to share in a special experience of Harry Potter World at Universal.

Adelaide and I (with Daphne in the stroller) ran our first 5K with Rich, Jen and Alex.

We got to watch some of our towns parade before taking our friends to the Airport and then enjoyed 4th of July festivities and fireworks at our Association.

Daphne was mesmerized with the fireworks and I have to say I was in aw over her until a friend who’s son has seizures said I wish I had given him his seizure meds before the fireworks…Yikes.

I then stopped Daphne from watching them so intently.  She does not have seizures but they could develop anytime and I don’t want them to start from silly fireworks.  IMG_2802IMG_2817IMG_2814IMG_2808IMG_2810IMG_2816IMG_2823IMG_2825IMG_2828IMG_2852IMG_2857IMG_2873IMG_2858IMG_4942