Sunday, May 11, 2014

Lazarus Blog?

So, I feel like I've been gone forever. Like a lifetime has passed since I was a stay-at-home mom of two little boys searching desperately for a voice and some intellectual stimulation. I like to think that I found both here. Can you believe that was 10 years ago?!

But, the boys got older and another one joined them. My stay-at-home mom status turned into a Work-from-Home status as I was able to use all the things I learned here and turn them into a wee little web business that now has me running the websites and social media for a small cadre of clients. Nothing huge, but enough to allow The Man to only do side work when we have a friend in dire need of his mechanical skills.

We have now evolved into 100% hockey parents. Anyone that has children that play travel ice hockey know what this means. Five to seven days in a rink if you have one playing...we have three. This means seven days a week and most days inhabiting multiple rinks. Our oldest lettered in Varsity Ice Hockey for his school this year. He's only a Freshman, so this was huge. A 14 year old out there playing AA varsity hockey. Our 13 year old goalie went to an international tournament in Lake Placid this season and had the most saves in his entire division and third most in the tournament. He was also awarded MVP. The five year old is already dangling, deking and scoring top shelf. I even started a women's hockey program at our rink and now look forward to my own ice time each week. This is the entirety of our lives right now.

That's the good stuff that has kept me away. Unfortunately, the good has been tempered with some very bad.

My precious, amazing, resilient, 13 year old goalie has been diagnosed with a rare (12 pediatric cases at Children's Hospital of Philadelphia), incurable liver disease called Primary Sclerosing Cholangitis (Walter Payton died of a cancer that was a side effect of this disease). Ten years ago, his life expectancy would have been 12 years from his diagnosis -even with a transplant that would most likely develop the same disease. Now, a doctor that I feel eternally debited to, Dr. Kenneth Cox of the Stanford University School of Medicine, has discovered that an antibiotic used for C-Diff taken in a high dose every day removes all trace of the disease. It's not a cure, but it's a hope. And it is working for my goalie. His liver functions have been perfect since beginning the $6,000/mo drug that (THANK GOD!) our insurance company is covering. They first thought he had leukemia, so I guess we should be grateful it's PSC. Through all of this sickness, testing (liver biopsy two days before Christmas) and missed school --his all honors schedule replete with French and violin, never suffered. Not even a slight drop in his all A's. Not to mention, the kid never missed even one game or even practice. What an inspiration he is. Not once feeling sorry for himself or using it as an excuse.

I don't have the strength he has. I was in a very dark place. I didn't dwell on the 'why my kid,' because why anyone's kid? Or 'why the kid that never does anything wrong,' because it seems to always be that amazing kid that has to deal with the worst stuff. I just felt incapacitated with the weight of the sadness. Wondering how I would parent normally with that hanging over my head.

But one day it hit me. I can't live like that. I owe it to him, and my entire family, to make everything as normal as possible. To truly live each day to the fullest and not just give that mantra lip service. So that's what I've resolved to do.

I've also resolved to rejoin the political world. I've dropped out the past few years because I was just too disillusioned. Too disgusted with the people around me. But, I've felt convicted to reengage.

I'm pretty sure this means vigorous campaigning for Rand Paul.

I'm glad I didn't delete you little blog. I am not promising you will ever regain your former modest glory...but I hope to regain at least a fraction of my political voice.

8 comments:

Haverwilde said...

ALa,
Good to hear you are back.
Prayers for your son.

I look forward to more political posts.

Rand Paul, hmm, 90% "right on!"
and 10% "WTF?!

It will be good to have that discussion.

CrabbyOldMan said...

I take my hat off to Ala, her son, and the rest of her family.
People like that help me to see that my own "problems" are trivial.

Fearthuinn min an Saille said...

I'm very happy that someone found a wonderful side effect that is helping your son. My fingers are crossed for him.

And I'm thrilled with your new career! :) That's usually how it happens. :)

Rickvid in Seattle said...

Good on you, ALa, and good for us! My cousin in Alaska raised 2 stickmen, one of whom went pro then migrated to Europe, Nurenberg as I recall, during the lockout. His kids speak English as a second language. Returned home to coach at his old high school and recently retired with his big bucks and hometown prestige.

Prays for you and yours.

T. Paine said...

May God bless you, Ala, your son, and your family. I am heartened to hear that things are looking much better for your son. He sounds like a truly remarkable young man. It is kids like him that give me some hope with the future of this nation.

jim marquis said...

Nice to hear from you, Ala. Glad you were able to find that doctor. Your son will be in my thoughts from now on. You are a pretty great mother.

SoLow said...

Wow, impressive story. And I have to agree with Crabs about things like this making me realize that my woes are pretty insignificant. This is a good testament to a fine young man being raised by wonderful parents. Nice job Ala, and welcome back. :)

Zelda said...

I am thrilled that there is hope for your son. I prayed for him like I haven't prayed in years and I will continue to do so. He is not an amazing kid. He is an amazing person. As my girls would say, a "BOSS."