Tag Archives: Family

RIP Avery

2 May

I recently read an article about a baby in Texas, Avery, born with SMA, or Spinal Muscular Atrophy. I had never heard of this disease either, but it is disease of the spinal cord and brain stem that kills more babies than any other genetic disease.

from Avery's Bucket List

Shortly after her birth Avery was only given a few months to live, so her parents decided to create Avery’s Bucket List for her, to accomplish some big moments in a person’s life before she lost hers. They fed her hard foods like cupcakes and lollipops, got her a drivers license,  even got her a first kiss, on the cheek by a little boy also with SMA.

Just about a week after first hearing about Avery I have learned that she’s passed away after going into cardiac arrest unexpectedly on April 30. Born on 11-11-11, she was only 5 and a half months old.

from Avery's Bucket List

There aren’t really words to describe how special the Canahuati family is. In the face of such pain they put their grief aside to provide everything they could for their little girl. I honestly don’t know if, when faced with such a painful situation, I wouldn’t just spend all day in bed crying. Her parents are two very, very strong people that pushed everything to the side when their daughter needed them. They were destined to be a family, because Avery needed two people as remarkable as her two parents to keep smiling.

I decided to donate to her organization, mainly because I was really touched by the family and their dedication to their adorable little girl, but also because every dollar donated will be matched to meet a $1,000,000 goal to launch an SMA Gene Therapy program.

I was amazed that a disease so deadly and so popular was foreign to me, and I’m lucky to have had the chance to read Avery’s story, even if for a short time, and learn more about this disease. What I am really grateful of, however, is the chance to have read about Avery and her family. They really set an example for me, and I admire them for that.

Click here to donate if you have the means, and no matter what, take today and try and live it a little bit more, for people like Avery who lived theirs to the fullest.

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Catching up on life

5 Oct

If I was going to say ‘sorry I haven’t been posting lately, I’ve been super busy’ that would be a terrible lie.

Because super busy doesn’t even explain how insane my life in the last week has been.

In case you all were wondering, yes I am still with my job and yes, I did get my terrible, horrible, hideous haircut fixed. Getting into the swing of things at the magazine has been much crazier than I imagined it would be. I’m there at least nine hours a day, and I always wish I had the energy to work for another nine more.

When I interned at the magazine I didn’t stress if a project didn’t get finished or if I missed a part of an assignment, because I knew that when 5 p.m. rolled around I was out of there until the next time I was due back. In the mean time someone else could pick up my mistakes. In the big-girl-world that isn’t how life flies, and my biggest stress is constantly worrying about getting everything done and doing it well. I can’t mess this up.

I think my unexpected pile of stress led to my nasty cold over the weekend. My cold couldn’t have come at a worse time: it was the first weekend that I wouldn’t have to show up at a job, it was the start of the MLB playoffs and, most importantly, it was my Nanny’s 92nd birthday party.

I love my grandmother. She is one of the most important people in my life, and we have always had a very special bond that I haven’t shared with anyone else. She gives me faith in moments of my life when I didn’t think faith would come to me.

Monday was my Nanny’s official birthday, so I had planned to call her, then visit her during the week and then write a post about how special she is to me here. Unfortunately plans changed when my Nanny fell of a step in her home and broke her hip. At the age of 92 any injury is serious, especially one that would require such a serious surgery. Needless to say I felt beyond crushed, guilty and all-around miserable. I couldn’t even be there for her birthday, which, after her fall, my family was viewing as her last. I had let her down.

My Nanny grew up orphaned during the Great Depression. She has survived cancer, heart disease, a stroke. She’s lost her husband and one of her sons, and yet she still stands as the strongest person I have ever experienced. She is a fighter, and she proved that once again to our entire family as she fought through her surgery Tuesday morning. While she is in pain she is recovering, and should start to heal soon.

It has been a stressful crazy and pretty much overwhelming week. I’m pretty much ready for it to be over. I’m ready to become more adjusted to a real work schedule and full work responsibilities and I’m really ready for the Phillies to stop stinking and finish this series. All I can do is hope for an easier next week, right?