Saturday, January 28, 2012

Sometimes Coffee and Bagels Are More Than Just Breakfast

Today Brit and I went to Walmart to pick up some stuff we seem to run out of daily here. Bread, milk, know the stuff.
I am going to be honest here. Brit isn't my first choice to run errands with when I'm trying to be efficient. She has much slower...well, everything. I tend to cruise Walmart at high speed, most likely in a subconscious effort to get the Hell out of there. With Brit, I am always checking over my shoulder to see where she is and make sure she hasn't been distracted and redirected as a result.
Today wasn't any different, and she did indeed get distracted. While I was getting the 3 gallons of milk that will no doubt be gone by tomorrow afternoon, she happened to notice the single serving sized little jugs of flavored milks. She lingered and I noticed - and when she noticed I had noticed, she made comment about the little jugs of coffee milk . I nodded, and got back to shopping, more than a little distracted myself now. I didn't want to be there anymore - I wanted to get back to being lost in thought about grabbing butter and eggs, before I thought too long on the Coffee Milk.

I can't look at one of those syrupy little containers of goodness without thinking of my stepmom. Coffee milk is one of those little things she used to do for me. Make me what was basically a cup of warm milk with a splash of coffee and sugar in it when I was young, to include me in her ritual. She did on occasion buy me a little jug of it as well. To be honest, simply thinking the words "Coffee Milk" brings tears to my eyes. It's just one of those things, you know?

Well today, as I am trying to escape the dairy section before I lose it, a small voice behind me says "I used to like coffee milk. Nana would buy it for me at Cumbies."

I think my heart broke on a new level at those words.Of course, I turned back around, climbed half way into the cooler to grab the last quasi-reachable mini jug of coffee milk from the shelf - and handed it to Brit.

See, my younger kids don't remember Nana from when she was well. They remember an older, less steady, forgetful, struggling Nana that was sometimes awkward to be around. Kaylee, my 18 year old remembers the real Nana well. She is just as devastated as I am at her loss. Brittany - well, she is ill. She has issues with memory, among other things. She rarely shows appropriate emotion. I have seen little glimmers of sadness here and there from her about the loss of Nana...but not what I would have expected form her if she had stayed well.When my older kids were younger, Nana was a HUGE part of their lives. She may have lived 300 miles away, but she missed nothing. They were spoiled by her and my sister in more ways than one. Gifts galore, yes - but more importantly, she was Nana. They knew she was one of the top people on the "Let's think about who loves us" pyramid.

Today let me know that Brit remembers Nana. Nana is still in her heart and mind. She shares my pain at her loss. It reminded me that while I am wallowing away in this self pity and enormous pain, my girls are missing their Nana and feeling the pain, too. It also served to remind me that my little ones aren't going to have these memories with Nana....and that hurts more than I can say.

When we all started getting sick last week and the toddlers were cranky, I made them tea. Apple Cinnamon Celestial Seasonings, served in a sippy cup with a little sugar and lots of milk. I had no clue why I did it - but it made me happy and it made them happy.I did think of my coffee milk when I suggested it. The same way I think of Nana when I offer the kids gingerale when they are sick - because Nana used to offer it to me. The dark gingerale, as a matter of fact.

It makes me happy to realize that I am just doing things for the kids that she used to do for us, without even realizing it, most of the time. Offering the same comfort I was given - and that still fills my heart with love today. It also makes me profoundly sad that she isn't here - there's no Nana to take care of me anymore. Instead, I am the one doing the Nana stuff. When did I become qualified for such a responsibility? What if I mess this up?My stepmom was - is - a larger than life image in my mind and heart. She is the shoes I could never possibly hope to fill.

My stepmom and I at her babyshower

I really just want a mug of homemade coffee milk and a few Munchkins or bagels - and to be sitting across the table from her again. I think next week when I go grocery shopping,I need to have a Nana tea party with my girls. Coffee Milk and Everything bagels.

All that will be missing is the guest of honor ... and a little piece of my heart.

One of my favorites of my stepmom and sister
Nana and my girls, in the days of Coffee Milk <3

Monday, December 19, 2011

Happy Holiday.

Having a hard time with you being gone. I cry for at least a part of every day.Sometimes many parts, sometimes a big part. The holidays arent what they are supposed to be. I dont know if its the holidays just making it hurt a bit more, more obviously- or if it's just catching up with me in general.
I feel abandoned. I feel like I didn't realize how big of a part of my day to day life you were. Miss you so much.
I feel like the only person I have to talk to about it is my my sister- and I really don't want to make it about me. Dont want to upset her if she is having a good day. Just want the pain to go away on it's own. Nobody is going to understand. Nobody is going to make it better. Empty, crazy, abandoned and unlovable, feel like Im waiting for the other shoe to drop. Waiting to lose everything else. Feeling panicked, alone, not worth the effort.

Sunday, December 4, 2011

Please join us on to support the United Leukodystrophy Foundation...

Come to Team Brittany's page and light a candle

Friday, November 18, 2011

How do YOU feel about internet censorship by our Government?

To be able to read this inforgraphic and understand better what is being proposed and how it could effect you, please click and check out the link to the actual graphic.

I posted what was available to be able to explain more clearly what is extremely possible, and close to passing because I am not well enough informed myself to be able to explain any of this myself. READ the infographic. WATCH the video. If you understand the magnitude of what passing these into law could REALLY do - do YOU want to go to jail for 5 years for singing along with a pop song in a video posted on Youtube or your FB page? -then sign the letter. Don't think it will be taken that far? Ask yourself how many 12year olds have been prosecuted for downloading a song? Don't like that Censorship black bar on the top of my post? Get used to it. It will be staying for a little while. And expect to start feeling the effects of real cenorship if Americans don't shut this bullshit down.  =)

Thursday, November 17, 2011

November 17 - World Prematurity Day

My grandson, Aiden. 34 Week Preemie <3
Today, November 17th, is World Prematurity Day. A day dedicated to draw attention to and raise awareness of the dangers, causes and preventions of premature birth.

Learn more by checking out the official World Prematurity Day Facebook page or visiting

Saturday, October 29, 2011

There's Always Next Year

While reading fellow AxD mama Dawn's CaringBridge update tonight about her beautiful daughter Hailey, I was reminded of a thought I dislike, but have with more frequency as time goes on.  Hailey and her brother had flu shots recently and both have a history of having fevers after shots of any kind. She was regretting having agreed to the shot, but it was important to get due to the need to stay healthy not only in general, but because Hailey is scheduled for some pretty heavy duty surgery in one month. Being in the hospital this time of year is pretty much like jumping into a petri dish and hoping to come out clean. Now that she has gotten the vaccination, she has a better chance of not getting the flu - but the fever she has now may prevent her from trick or treating on Halloween night.

Honestly, one thing I've gained from having 3.5 million kids is the attitude of "Hey - this sucks, but get over it. There's always next year."
One of many things I've gained from having a kid with Alexander Disease is "There aren't any promises - and there ISN'T always next year".

I'm not saying that Hailey or Brittany wont have a next year, I wholeheartedly believe they both will- but I am saying that a year from now is ridiculously far away, and so much can happen in a year. For instance - a year ago right now, Brittany had recently been released from the hospital - and was about to be re-hospitalized - more than once. She was in fact about to spend a significant time in a hospital bed, we were about to be told  I wouldn't be bringing her home, I was about to become "Mommy" to my ganddaughter, and my grandson had yet to be born. As shocking as it sounds, I was knee deep in trying to decide if we bring him home once he's born, or if we place him elsewhere - give him up for adoption. If the couple of months prior to a year ago today were any indication, I was to have a very ill, high need adult child to be taking care of, until she passed away, or had to be placed in more professional care.I was pregnant with Wyatt and pretty sick and on bedrest - as much as I could be with a very sick kid and 7 healthy ones in my care. I was worried about not making it through labor because of my blood pressure. A year ago, Maddy Wyse had a very, very sick little girl named Georgie who was 3 years old.

Today, I have my daughter home. Today, Maddy's daughter has been gone for 7 months.

All I'm saying is that today is a gift, and every tomorrow you are given is a miracle. That's not just true for us families with sick kids, it's true for everyone. It's just easier to see when faced with it every day.  As hard as it is to remember sometimes in our busy, crazy day to day lives, it's important to keep in mind that there isn't always going to be a next year.

Someday we are all going to be looking back on last year, wishing we had been able to experience every moment over again, knowing now exactly how fleeting every minute we have truly is.

To a Child...

I just posted this on my facebook page, but thought Id post it here as well because I haven't posted in a while because a couple of people have basically ruined blogging for me - and because I wanted the opportunity to have it posted someplace that it would endure, not just slip away on my news feed. 
As inspirational and sappy as this little film is - it also serves a purpose. It's easy to forget the simple, truthful message in it - daily life is busy and we, as adults, have a lot on our plates to contend with.

I also wanted to take a moment to point out another detail. I  have a kid with a fatal illness - but as in all situations, I am luckier than some. Luckier than most, I've come across in this disease, as I have discovered. Someday when I am old and grey, if I haven't taken the time to fully enjoy and experience what my kids have to offer, I only have myself to blame.
Nick's mom and dad, Hailey's mom and dad and Georgie's mom and dad have had that potential taken from them by Alexander Disease. Anaya's mom has been robbed by Krabbe Leukodystrophy.

If you can even grasp the enormity of this, please watch the video and remember it's message.