13 December 2014

Today Was Never Supposed To Happen. And Yet It Did.

Thirty years ago today I was diagnosed with Cystinosis. I was 16 months old. My parents were told by doctors that I would not live to see my 10th birthday.

Today I shipped out shirts from the shop I started to celebrate 20 years since my kidney transplant. Today I was a mom. Today I did laundry. Today I played zoo keeper to our one dog and two cats. Today I posted gLockets promotion holiday sales on our social media accounts. Today I went to lunch with my dad. Today I did dishes. Today I chased my girl around the house and patiently asked her to get dressed for the 11th time. Today I cleaned our house. Today I took heavy duty albeit very pretty pink and red heavy duty antibiotics to treat the nasty infection that resulted in a second root canal yesterday. Today I captured our odd defying girl jumping in puddles in her red rain boots.

Today I took deep breaths at Target during the onslaught of people caught up in the Christmas rush. Today I drove my new to me 2005 Touareg and thought about how thankful I am that Christmas came a little early and I won't be getting stranded on the side of the freeway again anytime soon because of my car breaking down on me. Today I watched our girl focus so intently on squeezing the frosting out onto her gingerbread house so carefully. Today I had a wild dance party in our kitchen. Today I helped our girl pack for an imaginary trip to Hawaii. Today I worked on a secret Christmas gift for Rory.

Today was never supposed to happen and yet it did.

There are so many misconceptions out there about Cystinosis. About bleak and incorrect assumptions that make my heart hurt. We can never predict what anyone's life will be. Even when they are erroneously grouped into the same trajectory of life because of the same shared faulty DNA. One thing that is incredible important to me is to change the way people think of Cystinosis. It is not a death sentence. It doesn't have to change anything. Except for perhaps the beauty you are open to see.


  1. Crazy dance parties in the kitchen are the best. My daughter and I often get these going. :)

  2. شركة المنارة تعد افضل شركة مكافحة حشرات بالرياض ان خدمات مكافحة الحشرات تحتاج الي شركة متميزة و رائعة فنحن نعمل علي القضاء علي الحشرات بشكل رائع كما اننا نقدم لكم ايضا افضل الخدمات الرائعة و هي شركة تخزين اثاث بالرياضنحن شركة المنارة نقوم بتخزين الاثاث بافضل الطرق التي تجعل الاثاث امن فنحن نقوم بتخزين الاثاث في مستودعات تخزين اثاث بالرياض نحن شركة المنارة افضل شركة تنظيف كنب بالرياض تنظيف الكنب من الخدمات المهمة للغاية فان كل شركة تعمل علي تنظيف الكنب بدقة فنحن افضل شركة تنظيف كنب بالرياض نعد افضل شركة تسليك مجاري بالرياض كما اننا نهتم بخدمة تنظيف الخزانات فنحن افضل شركة تنظيف خزانات بالرياضو نحن نريد ان نكون الافضل علي الاطلاق
    كما اننا افضل مكافحة حشرات بالرياض نعتمد علي العمالة المدربة علي مستوي