The Atypical HUS Foundation

How important it is to savor the sweetness of life while those moments linger, because they pass so swiftly with the everyday bustle of life! Last night Skyler participated in a beautiful promotion ceremony set in the lush flower garden of his wonderful Montessori school, surrounded by beaming parents, saint-like teachers, and the innocent faces of his classmates. Oh all right- break the bubble for me! You know all too well that sooner or later, someone was going to accidently trip over someone else... or bump into a friend.... or have a sibling get into a snit over a perceived slight by a brother or sister.
Such is the ordinariness of life- and the certainty that the uncertain was bound to happen. No one knows this better than the patients and families dealing with the peaks and valleys sure to occur with aHUS diagnosis and treatment. How will today's lab values be? How long can we maintain kidney function without a need for dialysis? My child looks and acts so much like classmates that other parents can't even fathom that my child has a chronic, life-threatening illness. Yes, we'd love a playdate- as long as you realize that today's labs haven't come back, and I don't know if we need to be at the hospital for plasmapheresis again tomorrow. And you know the biggie with aHUS - some cases of aHUS go into remission as mysteriously as when the aHUS is triggered by some unknown event or sequence of events.
It's so easy to fall into the trap of spotting a beautiful moment in someone else's life -envying that brief instant and desiring with every shred of your inner self that which seems so elusive to you at that very second in time. "I want a charmed life, too!" you shout within your heart. And all you hear is that empty echo back....
I haven't checked eBay under the search term "charmed life" because I'm pretty sure that it isn't there. Nor is it at Walmart or at the bottom of a glass of red wine. I think I once spotted it among some chocolates, but it melted in my mouth before I could hold it tightly in my hands. I'm pretty sure that a charmed life for me is reflected in the joy of my child's eyes.
I remember a conversation with a friend when I relayed some particularly serious turn of events about a complicating factor related to aHUS. "What are you going to do?", she asked with concern and compassion. Every parent dealing with aHUS issues knows that there is relatively little one can do, as options are limited. "We're going to have fun.", I firmly declared. I may not be able to control much about my child's medical condition, but I certainly have some marked impact when it comes to quality of life issues.
Early Spring, 2008. Visitors to our local mall would have seen a glowing mother, and two adorable little boys holding each of her hands as they all strolled to the Food Court. Relaxed and laughing, they seemed to truly relish their togetherness. Each boy requested his favorite food as a snack, from different vendors - of course. Envious eyes would have spotted the happy threesome, thinking, "What a charmed life!". It was the first, and sadly the last, time I had taken Hunter and Skyler together to the Mall and had a snack at the Food Court. I felt that I was floating on air, overjoyed that we had a "day off" from treatment/OT/speech sessions and allowing me an experience that all other Moms took for granted. Something so trivial and so ordinary became a "charmed moment" for me- not because of the event but because of our attitude.
As you and your family continue to struggle with the challenges of aHUS, you are not exempt from the difficulties faced by others. Lost jobs, insurance woes, relationship issues - a multitude of problems provide stumbling blocks we too must work to overcome. In the midst of a weary day, it's important to remember that WE set the tone we want others to follow. It's rarely easy, but it is always rewarding. We may not be able to control our situation, but we can control our reactions to our circumstances and realities. We don't have to like our reality. We just have to make a conscious choice to deal with it in a positive manner that encourages our child, our friends and families, and even our medical staff to gain strength and hope while moving forward with an eye toward a brighter tomorrow.
We may not live charmed lives but we can deliberately choose to create "charmed moments" each day. Wishing you a peaceful moment of strength, floating in on a warm summer breeze. Linda

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Comment by lisa ann peterson on June 18, 2009 at 1:20pm
you are amazing i just joined this site today and your words have brought me to tears twice your words are powerful and true.. thank you
Comment by Steve Greene on June 12, 2009 at 10:44pm
I agree with Heather and Svetlana and loved the article too ... but one person's story in a magazine that will eventually be thrown away is not enough. There are 300 aHUS cases in the USA alone and all 300 of those stories need to be on this site ... with photos, videos, and caring comments. And updates ... all the time. As Linda says, WE set the tone we want others to follow, so let's reach out to get everyone to share their personal story here on this site. I want to read everyone's story!
Comment by Svetlana Finley on June 12, 2009 at 11:46am
Thanks for sharing, I agree with Donna it need to be in the magazine or some were were people can SEE IT :-)
Comment by Heather Still on June 12, 2009 at 8:07am
This doesn't belong just in a blog - it should be in a magazine. Each word in there holds true in my life. I got teary eyed and smiled reading it. Amazing words by an amazing woman. Thanks for sharing your inspirational thoughts.

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The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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