Thursday, July 4, 2013

Wings For Destiny REBIRTH!! (hopefully!!)

You know when you really wanna do something but it seems like such an huge undertaking, especially amidst all the tasks you HAVE TO complete just to keep your world turning, and so this undertaking becomes a tumor-like guilt task, always applying almost unbearable pressure on your brain and then you just begin to resent the thing you wish you could do, and you really do NEED to do it?? Well, that is my relationship with Destiny's blog!
Instead of writing the perfect "Blog Rebirth post", I have decided to merely offer a brief update on Destiny, and her life with Dravet Syndrome. Maybe if I can write this initial post, it will give me a jumpstart for more posts...
This picture was taken a few days ago after a "Fairy Hunt in the Forrest" (aka an accessible hike at Wilderness On Wheels.

Thanks to so many of you who made sure Destiny had her medication from Europe until Colorado Medicaid figured out how to cover it mid-2012!!!! Thank you!!!!!! Life has been sooo much better with greatly reduced seizures and more cognition! My happy girl has been back and active as can be! - comparably! Of course, she has good days, not-so-good days and really difficult, scary days. To me, the most frustrating aspect of Dravet Syndrome right this moment is definitely the secondary conditions that come along with this ugly syndrome.
That said, Destiny LOVES LIFE and doesn't usually let it bring her down!
I love this child so much - it actually hurts my heart! I am in love with her brother - he's my SonShine and we are very connected...but there's something between me and my girl, maybe because she depends on and trusts me so deeply thru her struggles, it's almost like we're interconnected, like she completes me and I her. She is my constant reminder that ever day is a special day, and to live each day with no regrets.
Okay! I did it!!! I wrote the "Rebirth!"
If you are in the position to do so, we are in need of more donations. It's a particularly difficult time for us financially. In January, this beautiful 7-year-old weighed 31.5lbs, and was facing possible g-tube insertion. I revved up and quickly learned to create healthy fat-filled nourishing well-rounded meals. Soon after, we discovered she has sensitivities to sugar and gluten, on top of being lactose intolerant. Needless to say, feeding Destiny takes a lot of money and creativity!!! I'd say ~70% of what she intakes is from smoothies, soft (super-food infused) banana bread variations and nutty cakes. She is also BPA-free, rarely eats anything processed, and she is on a number of vitamins and supplements. My girl now weighs 45lbs!!! I have noticed when I slack even a little bit, her weight just plummets. This child requires an incredible amount of good fat intake.

I have many stressors - and I choose feeding Destiny and Benny and nourishing both their bodies and soles before all of the "external" stuff, I.e., bills, rent. My kids come first - ALWAYS!!!!!!

This summer, I have the additional expense of supporting amazing teen "Mommy Helpers" and wanting to make as many memories with my kids (this month with Desty, in particular) as we can. Not extravagant by any means, but camping, taking Destiny to meet Santa at The North Pole, flying with them on A Giant Canyon Swing (Desty is actually tall enough!!!), fishing, playdates, and little spontaneous adventures!

- Posted using BlogPress from my iPad

Tuesday, May 8, 2012

Destiny Bracelets Spread Worldwide

What began as a small cooperative - an idea for one friend to use her talents to help raise a little awareness and funds for Destiny's medication - has turned global, and raised more than $3500 in just three months!

Beading circles are popping up everywhere - circles of friends, church groups, high school groups, birthday parties. Friends are taking them to international conferences, selling and sharing our message of community, entrepreneurship for people with disabilities, Sofia the Lovely, Destiny and Dravet Syndrome. People are uniting - language barriers and social barriers cease to exist when talking about these bracelets and their story. It truly is a magnificent international web of community being weaved from one idea nurtured!!

We are beginning to meet people, by pure chance, wearing Destiny Bracelets.

This past Sunday, there was a beading circle that I missed. This is a message that I wrote to the group of girls (while on I-25 with three kids in the back seat, all fighting for my attention!)

They're making Destiny by helping to save her. I've never been so touched and so grateful for anyone or anything in my life...

My visual is Desty is in a hot air butterfly balloon, floating gracefully above the normal perils of life. I'm holding my butterfly from floating away with all my might with my String of Love...but the winds are becoming stronger and stronger...

Everyone making bracelets, supporting and spreading our message, forms a line behind me, each grabbing hold of the string, strengthening it, easing my burden so that I can enjoy watching and interacting with my beautiful child. The string transforms into a bracelet, a bracelet that is spanning nations. Sometimes this line of bracelet makers can hold the string tight enough to let me climb into the balloon and let me enjoy the view, her hugs, her love, without worry.

Thank you!

And thank you for reading!

We are finally nearing the end of our critical fundraising 'era'. It won't be too much longer until Colorado Medicaid is set to pay for this life-saving medication. If you are interested in getting a Destiny Bracelet, please email Sofia at SoBeads with your color/style preference, and she will take good care of you!

Otherwise, I encourage each of you to click the PayPal button on the left-hand side of this page and make a contribution to Destiny's medical fund. As little as $5.00 makes a difference!

Please donate and share this blog with someone TODAY!!!

This is my Destiny!....

- Posted using BlogPress from my iPad

Monday, March 26, 2012

Turn the World Purple TODAY for Epilepsy

HAPPY WORLD EPILEPSY DAY!!!! We are wearing Purple today for Epilepsy!

What are YOU wearing?!?!?

If you are wearing Purple for Epilepsy, please send us a picture to include in an album for our family, showing the many faces of support this Purple Day! Even if you don't have any purple clothes, find a hat, a ribbon or even make a sign to hold up ;-) we want your picture. Please, if you are so inspired - include a message, poem or prayer for Destiny, our family, or about your experience with epilepsy!

I have shed many tears since last May, when my Love received the definitive Dravet Syndrome diagnosis. We had experienced seizures for years prior. It was actually my son, Benny, who had the first febrile seizure. I remember that night like it was 2 minutes ago.

Destiny's first seizure was different...singing and dancing around, preparing to bathe one moment, and on the ground convulsing the next...My baby...This was my fever or sickness detected but the ER was certain the fever had to be somewhere...And again....And again...Word had it that Destiny had febrile seizures and also that she was having problems staring, chewing, walking straight, and waking in unconsolable and unresponsive 30–40minute screams because she had a "flakey" personality.

It was the picture-perfect evening in late June/early July of 2010 that led us on the path of no return. A fever was obviously not a trigger. Excitement was!! And temparure!We were eating dinner at a kids play water fountain...Destiny was running in and out of the shooting water laughing, thrilled, with one to two dozen other kids...and suddenly, our world stopped..."Save my baby!" I screamed at the cops and EMT's repeatedly as they gave her oxygen and tried to get history. Close friends met us at the ER for support and to care for my frightened boy, almost weekly after that, for awhile.

I remember her first Anti-Epileptic med, and the neurologist's words, "I strongly recommend you put her on this. It's not going to go away for now.". That was the beginning. Destiny was diagnosed with refractory epilepsy months before last World Epilepsy Day 2011, her genetic test for Dravet Syndrome was being processed, but still, in general, every professional gave me the impression she could still "grow out of it" or get it under controlled.

By April, the thought was she had another devastating epilepsy disorder called LGS - the severity and regression were alarming. In May, genetics confirmed Dravet Spectrum Syndrome (since then, 'Spectrum' has been dropped...)

The same neurologist who saw her for the very first time way back, happens to be the 'Dravet doc" and, well, here we longer do we go to the ER until breathing is compromised...I am the 'expert' and make judgement calls all the time about when and how many times to 'rescue' per bad night, when sleep is sleep or non-convulsive status, who to entrust with her care, what risks are worth taking, when to wear the helmet, all the way down to what treatments to try next and how much of the truth my son needs to know when. I no longer scream "CALL 9-1-1 NOW" or even think doctors can help...I'm much more interested in their machines when we do go in ;-) This is Life as a parent of a child with a rare, unknown by most, life-threatening conditions.

I will be affected by epilepsy for the rest of my life, Benny and Destiny, too, as well as our loved ones, in one brutal way or another, for the rest of our lives. This Epilepsy Day, I celebrate my daughter, her resilience, her strength, her innate beauty inside and out: My heart goes out to our friends with uncontrollable seizures, and I weep for the families whose Angels have grown wings way too soon. I ask for compassion as I beg for a cure!!

- Posted using BlogPress from my iPad

Saturday, March 10, 2012

Destiny's Utopia by Lucia

I first met Destiny back in September through a friend of my mom. Since then I have had the pleasure of consistently interacting with her, and what a wonderful experience it is! Being with Destiny is like escaping to a utopian island of bliss... a place where there are no worries, only laughter and joy. A place full of flying colors and magical creatures, a land of opportunity and possibilities with no end. A place where imagination becomes reality, and you become delirious on joy and contentment.

On a play-date with me at my house one day Destiny transformed into a beautiful girl named Crush. She had discovered the makeup supply in my room. After applying about five coats of blush and eye shadow she jumped up and exclaimed, “I’m Crush! Because I’m different with makeup on. And you’ll be Flush!” (hand held high in the air like Superman). Another day when I picked her up from her house she was wearing a very lengthy wig and announced, “I’m not Destiny, I’m Rapunzel!” In the car later Benny made an embarrassing error; he called her Destiny. She adamantly corrected him. Another time she spent hours with a friend cleaning my yard, every bit of it! The rag turned rather black, but wow did they work hard! She is a powerfully determined little girl. And we want to keep it that way.

Wedged under all this amazingness of Desty’s little brain there are some misbehaving neurons that sputter around crashing into each other and giving Destiny seizures. In order to try to stop this Destiny needs medicine. But unfortunately this medicine, while utterly essential to Destiny’s development, is extremely expensive, and it is ridiculous to assume that any somewhat normal family can afford it on their own. One way we have been raising money is through the wonderful craft of beading. My sister, who has disabilities and who is also another incredible young being, has developed a beading business; a result of her LOVE (or, obsession, you might say :p) of jewelry. Members of our community have been gathering on Sundays to create beautiful bracelets which we then sell to raise funds for Destiny’s medicine.
Please support Destiny, her family, her community, and all the dreams, beauty, and joy that comes with her, by buying one of these bracelets! With each bracelet you will be helping Destiny in her battle against the seizures and you will be a part of this incredible community that is supporting, fulfilling, and realizing Destiny’s magical world.

Wednesday, February 1, 2012

She's Bad, She's Bad - She knows It!

In the hospital now for a planned 5-day EEG...

More soon!

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Wednesday, January 25, 2012

Erie High School Girl's Basketball Team Plays With Heart'


"Tammy, our whole team wrote this on our wrists tonight, in honor of you and your family :]"
Was the message from Nicole, my friend, assistant and sitter.

I woke to Benny's asthma attack at 1:15 this morning to find this. Words cannot express our gratitude for Nicole, and for the members of her basketball team at Erie High for thinking of us

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Wednesday, January 18, 2012

Girls Just Wanna Have FUN!

This video was taken on our last day in the hospital! I think the spaghetti-mouth just adds to the song!

Ms. Destiny Ann improves each day!

On Monday, she practiced writing the this is not an easy feat for this little girl, but she did it happily!

Notice her new highchair - known to her as her table rocket chair. Notice her "Princess Crown Helmet" and her sippy cup! This child loves them all!! - She truly has the best attitude and i am so lucky! (Her mama is still adjusting to the changes...fortunately these things mean something entirely different to Desty than they do to me.)

Things change, we evolve and Life Goes On.

On Tuesday, we woke Desty up @ 9:45AM, and had her try Patchwork from 11-12:30...This was the first day after Patchwork that she hasn't fallen asleep in my arms @ pick-up!!!! And I kept saying, "she looks so good!"

She then went with Jamie, our Super-Sitter/LPN and continued to have a good afternoon and evening, and only taking brief cat-naps.

I, on the other hand, napped deeply for 4 hours!!! I finally woke up @ 6PM screaming, "Where's Desty?". PTSD! I thought it was AM and Desty was gone...I forgot I took a nap!

Today was a great Desty Day!

- Posted using BlogPress from my iPad