NF - Neurofibromatosis

Nancy and Abbey... this one is for you because I am sooooo proud of you both!!!!  YOU GO GIRLS!!!

Most of this blog came from a "Pledge Letter" sent to me by Abbey and Nancy to support the NF Endurance Team in the Kentucky Derby Mini-marathon that Nancy ran in this past Saturday to raise money for this cause.  Nancy has never run in a marathon before, she has been training for months... and she ran the full 26.2 marathon!!!!

NF - Neurofibromatosis - a genetic disease that can cause tumors to grow anywhere on your skin, or grow on nerves anywhere in the body, including the brain and spinal cord.  These tumors cause physical deformities and physical disabilities.  NF is a progressive, debilitating, and devastating disorder.  It can lead to blindness, deafness, chronic pain, disfigurement, learning disabilities, bone defects, cardiovascular problems, cancer, and a wide range of other complications.  

There are no medical tests to predict the severity and complications of this disease... which is why the NF slogan is "solve the puzzle"... because you never know what will happen next, when it will happen, or what part of the body it will affect.  If you would like to donate money to the NF Endurance Team, all money collected goes directly to CTF (Children's Tumor Foundation)... no donation is too small... and who knows... it might be your quarter or dollar that leads the research team to 'solve the puzzle' and find the cure!!!!  For more information, please visit  the www.ctf.org website.

My beautiful niece (Abbey) was diagnosed with NF when she was 14 months old... Abbey is now 10 years old with the puberty stage of her life about to begin any day now.  Abbey currently has very mild NF symptoms... but the onset of puberty can change her life drastically and cause her NF symptoms to continue to be mild, or cause her NF symptoms to explode into out of control growth.  Abbey will never know life without NF, or without the life long monitoring of each new cafe au lait spot, or any bump under her skin, and/or any new symptom... or ever knowing if/when her particular NF case will erupt into life altering disabilities... yet... Abbey and her family remain positively hopeful, while at the same time they keep as informed as possible to all of the "what-if's" and  possibilities they need to be prepared for in her future.

Abbey's parents have made sure that Abbey always has known about her disease and what life may be like for her in the future... they are a very devout and faithfully religious family, always praying for answers and seeking guidance from GOD.  This family speaks openly about her disease and all the difficulties Abbey 'may' have to deal with in her lifetime... yet... DO NOT even think about giving them any pity for their circumstances... they embrace all that GOD has given them, and strive to not only inform and educate the public, but also do all they can to raise money for the awareness and research of this disease. Currently there is NO cure, and NO effective treatment for this NF... but hopefully through research that can change and the next generation will not have to endure the pain and uncertainty of living with NF.  Uncertainty is a VERY big burden/frustration this family deals with every single day... because you think once you know something... you can do something... but never knowing IF or WHEN can be quite exhausting... especially when you have so many loving souls in your life who are always asking questions you don't have the answers to.   I am, and always have been very impressed at how smoothly they address everyones questions... never making you feel intrusive or uncomfortable... always informing and raising awareness.

Even though Abbey is a normal and typical 10 year old girl... she was "Special" from the day she was born.  She is indeed a very beautiful little girl (physically)... but it is her inner beauty that has ALWAYS radiated so brightly.  Abbey has a smile that goes from ear to ear and adorable dimples to match!  The best word to describe Abbey is "Sparkly"... she truly sparkles from every inch of her body... including her personality.  Abbey likes to be helpful, always lending a hand... she loves to sing and play the piano, and I recently was blessed to witness an impromptu performance... she loves sports of all sorts, including cheerleading, basketball, and swimming... she is a fashion diva, and has a special love of shoes!  But to anything and everything Abbey touches, she brings a special magical and sparkly flair to it.  While Abbey knows the adjustments she might have to make in her life...  she still embraces each and every day with absolute joy and happiness.  It is impossible to be around Abbey and not feel the positive attitude she radiates.  She is a smile, and she brings a smile to all the instant she enters a room.

Abbey's Mom (Nancy.... who is truly 1 of 2 of my #1 blog fans... my Dad being the other)... is also a breath of positive fresh air!  As a Mom of 3 daughters myself... I can't imagine the struggles and fears Nancy has had to deal with as they discover more about Abbey's condition... but she always has her brain wrapped around whatever they need to do to keep Abbey as healthy and normal as possible and always, always, always keeps her thoughts on the positive!  Nancy and her husband Paul are AWESOME parents... they discipline with respect... I don't think I have ever heard Nancy or Paul raise their voices to their children... (not that maybe they do in the privacy of their home... like most of us parents at some time do... but NEVER in public)... they hold their children (they also have teenage son, Clay) accountable for their actions and reward them when deserved.  They have taught their children the importance of church and GOD, and the 'work for it, earn it, appreciate it' values of getting what they want... they have taught them to be respectful, polite, well mannered, and honest, and how important family is.  Nancy is of the quiet sort... soft spoken, never one to seek attention... she is a do-er.... the first to contribute or lend a hand without having been asked... but above all... Nancy is just a pure soul!

Nancy... I wish you weren't having to deal with this disease, but I'm soooo proud of you... you have embraced your gifts and burdens with such dignity... may Abbey continue to be blessed with mild symptoms... while she and you continue to bring awareness of this disease to the public, so that the necessary research can be made available to 'solve the puzzle' and bring for a cure and/or treatment to everyone who suffers with this disease.

Wedding Tales

Once again it seems I have been neglectful in my blogging posts... there is a good reason for that... life since my last blog has been a bit chaotic and hectic... but... also wonderfully good.  In the past month our eldest daughter married, after which my husband and I enjoyed a vacation beachside in Florida.

The Wedding was beautiful and the Reception was a fun time.  There is no better time or place to visit and be jolly with loved ones, family, and dear friends than at a wedding.  Everyone is all gussed up and feeling pretty/handsome, love and good mood feelings fill the air, dinner is served, and afterwards cake, tight shoes come off, flip flops are donned or just barefeet.. clad or unclad, feet hit the dance floor... gyrating, moving/grooving, jumping and jiving commence... all the while, chatter is continuous throughout the room as folks catch up with each other.  In other words... "A Good Time Was Had By All"!  The Bride and Groom... Amber and Ben... were spectacular and glowing with happiness and love as they celebrated their special day with their special friends and family!  They have repeatedly shared with me how PERFECT they thought their day was, and how much they appreciated everything and everyone.

The week of the wedding I was able to be with Amber to help her attend to all those 'last minute detail' errands... but even tho we were in constant movement as we ticked errands off our list, we had the most delightfully calm time together.  I was able to spend time with some of their friends that week as well, and it was wonderful to get the opportunity to get to know them better.  It was a hectic but really fun week.  The Wedding itself went off without a single hitch or flaw... absolutely PERFECT!

The day after the Wedding, Joe and I took off for a week vacation in Naples/Marco Island Florida.  We laid on the beach, soaked up the sun, enjoyed the scent of fresh sea air, and ate subway sandwichs, and just chilled.  Joe played golf, we dined at delightful restaurants that are favorite eatery spots suggested by local folks we know in the area.  We rested, strolled around town, and just had a very good time... which of course ended way too soon!

I am finally starting to catch up on all the laundry and house chores that went neglected for the past two weeks while I was gone.  And it is also that time of the year when "Spring Cleaning" is a must... so... windows are being washed, carpets being cleaned, and all the bed linens get washed and hung in the sunshine... for starters.  I actually enjoy the process of freshening the house after the months of being closed up for winter warmth.  The best advice I have for Spring Cleaning is to.... turn on the music and turn up the volume!  It's amazing how much work I can accomplish with a good beat to groove to.

As wonderful as the Wedding was, and as much fun, and as relaxing our vacation in Florida was... there is and always will be... No Place Like Home!!!... no matter where that home may be!