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.