Disney Princess Half Marathon & GP2C

Princess Rae

Several years ago, I lost A LOT of weight. After I lost the majority of my excess weight, I started dreaming that I was a runner. I could hear my feet pounding the pavement beneath them. I could feel my hair swishing back and forth brushing my neck. I could smell the salty marsh mingling with the fresh air while rhythmically breathing in and out (I have very vivid dreams). I woke up inspired! I bought appropriate running attire & good running shoes. I loaded up my iPod with upbeat music to push me further during each run. I was ready!

Then I twisted my ankle. It took FOREVER to heal. When it finally started to get better I twisted it again (guess I'm a klutz). My running was abruptly halted. Years went by and my running shoes became lawn mowing shoes. My shorts became clothes I wore to clean the house. My iPod sits on a shelf in my office collecting dust. At 27, I learned that I have arthritis in both of my knees, my lower spine, and my hips. Combine this with bone loss and none of my doctors advise that I take up running ever again. It will wreak havoc on my joints. I can briskly walk, ride a bike, or swim.

Now at the age of 32, the desire to run again (against doctor advisement) started bubbling up once more. I feel that even with my various ailments they are nothing compared to what my daughter is living with on a daily basis. Rae might never walk, much less run. The least I could do (or try to do) is run for her. My biggest risk is causing more damage to my joints which could complicate my ability to care for her physical needs long run.

This is where our heroine (yes, that is what you are) comes into the picture. Ria, my sister by choice and in Christ, has offered to run for Rae...for both of us really. I feel so blessed to have her and her family in our lives and so thankful that she is willing put effort into training to run for Rae.

Ria & Family

Ria has already registered with Disney Princess Half Marathon and with GP2C. Her goal is $750, but I think we can do better than $750. Correction, I know we can do better than $750!! My goal is $1000. All donations MUST be in before Feb 1st. This is for a great cause and every penny counts. The runners are raising money to help find a cure for Rett Syndrome. Please help us by helping them!

Here's the link to her donation page:

Ria's GP2C Disney Princess Half Marathon Donation Page

One Cure = Innumerable Miracles

Since we received an official diagnosis for Rae (and many months prior), I was often told by a family members and friends that God was in the business of miracles. I can remember hearing this same phrase being spoken from the pulpit when I was growing up. I also remember thinking that while God was in the miracle business, what makes any one person's struggle more miracle worthy than another's. This thought has never left me.

The last few months (since my own personal "D" day) I have been struggling. I struggle to cope with the enormity of the situation before us. I struggle to maintain my friendships. I struggle to understand all the medical gobbledygook that is spoken by the gaggle of doctors and therapists we see on an almost weekly basis. I struggle to carve out any time for myself and find my mind is often stuck on shuffle mode jumping from one thought to another. I struggle in my understanding of all things insurance related and often take my frustration at the greatly despised red tape out on unsuspecting customer service reps who utter the phrase, "I understand your frustration." (I seriously doubt it) I stuggle. We all struggle. It is part of life. (Yes, I say this to myself often)

One sunny afternoon, while Rae napped in her Mimi's bedroom, I wept at the kitchen table. Sobs racked my body. My voice became raspy. My eyes red and burning from the tears. My mother sat across from me...struggling. She has always offered me her ear, her shoulder, her wisdom, and a soft place to land. But this time was different...at least for me it was. There were no words that would soothe the sting. I confessed things to her. Thoughts that have been building up over the last couple of months fell all over themselves to be spoken aloud. That is when I confessed that I didn't want a miracle for Rae.

As soon as I spoke it, I felt guilty. In my mind I saw a miracle, wrapped up in pretty paper with a giant bow, a miracle that God had prepared just for Rae and I was shoving back to Him across the table firmly telling Him, "NO!" I was willing to turn down a miracle and sentence my daughter to a life of constant struggle. I felt horrible! In that moment I felt like I could possibly be the worst mother ever. But I just couldn't accept something (not that is was being offered...I am not delusional...God nor angel has offered me an instant cure for Rae) of that magnitude. Here's why...

I would want it for all the girls like Rae. We are all in the same boat (granted there are many variations, but we are all living with Rett). We all deserve the same miracle. I guess that is why so many families throw themselves into funding research for a cure. None of us want a miracle just for our own child. We want a miracle for all of our children.

For information regarding ongoing research

you can visit Rett Syndrome Research Trust.

*For clarification: If I woke tomorrow to discover that Rae was whole, no mutation, no deletions, no low muscle tone, no Rett, and called me Momma I would run around screaming at the top of my lungs about the miracle that happened during the night. I would never say no that gift.