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Sunday, March 8, 2015

I Found My Purpose!

OK, so I have to admit I have not read "A Purpose Driven Life" but I don’t have to read it to know how important it is to have a purpose driven life. We all look in different directions throughout our lives searching for the answer of the famous question, "What is my purpose?" I now know what mine is and it creates a fire inside of me. A fire burning so strong that I cant stop thinking and planning on what my next move will be. It consumes me. I go to bed at night with thoughts of what is to come. I wake up in the morning with my wheels spinning. Having three daughters, two with special needs, a husband and a business definitely can get distracting. Let’s be real, I can’t always sit around and daydream. I can assure you that any time my mind has time to wander it goes straight to my purpose. A very good friend of mine sent me a message a few days ago and she said: "I was listening to a radio program today on KWAVE. Talking about God and children born with special needs...and the parents. I thought of you when the pastor said "how blessed those parents are who actually gave birth to their mission in life”. WOW was she right on. I didn’t even realize what had happened to me until I read her post. I didn’t realize that my purpose was decided when Cali, Raelyn and Ryann were born our three very special little girls who need me - all of me. Raelyn is perfectly healthy, thank God, but she has to stay strong and sweet to remain our little powerhouse of a sister. She is their guiding light and as of now she stays true to that. Cali and Ryann, well they depend on me. They absolutely 110% need me to keep fighting. If I stop it all stops. If I stop then that's it, they will never get the help that they need or the answers that they well deserve. It is my mission, my purpose, to keep going. Whether it is fundraising, networking, spreading the word or simply sharing our story. I truly believe that our babies will someday find what we are desperately seeking. We need to find more families with NUBPL gene mutation. We need to find more families because as Mark Shields said so well, "There is always strength in numbers. The more individuals or organizations that you can rally to your cause, the better." Our first annual event, "Especially Beautiful" was just that, BEAUTIFUL. It could not have gone better! Our documentary: www.thelifewelivedoc.com is the most amazing documentary I have ever seen. Michael Squier, the producer is our hero. We are so blessed to have opportunities like these to tell the world. That is exactly what I want to do, tell the world. I would scream to every person possible and say, "Hey, look over here! Look at what is going on over here!! We have two beautiful little girls that deserve to have a full life. They deserve to read, to write, to ride a bike, to run and play with their friends (without mom or dad following them to make sure they don’t fall). They deserve that. I need your help! Please help us!! " That's what I would scream and I'm doing everything I know to do just that. It may not be my voice screaming but my soul is. My heart is full of passion and determination. This is my purpose, my purpose driven life. Now maybe I should read the book :-)

6 comments:

  1. Hi Cristy, I would like you to know that it is difficult for me to read about you and your daughters. I know how it feels, and how difficult it is when you have to put up a fight for dear life. I feel your pain and the anxieties that you bear, it is never easy. Battling a disease always pose a burden not only on the physical aspect, it also affects the well-being of the family’s coffer as medical costs can be prohibitive. Sometimes, it would lead us to think that somehow life can be unfair.
    But I would like to assure you that life is great and that you are not alone in this time of need. In reality, there are more people who want to help you and want to pitch in a little for your recovery than the actual number of people who actually do so. The reason for that is, either they don't know where to send it or who can keep it in trust, or they may be embarrassed about giving “little” donations and feel that small amounts do not mean much.
    I would like to share to you about a platform that can help and willing to extend assistance to people in need, even in most desperate situations. I am earnest in my offer to help, it may not be much, but at least, it is something that can help you tide things over. It also provides the avenue for people who are willing to give “little” amounts, thus answering the debacle: where should I put in my little contribution?
    Micro donations is the essence that propels Quarter-Back To Society, a charity organization whose principle is anchored on the belief that in helping other people, no amount is too small, nor an action is too little. By just donating 25 cents, the donee will feel that he has made a contribution in saving someone's life, and won’t even feel that something got out of his pocket. The amount is so small that even those who have never thought about charity will be able to donate. Big things start with small beginnings, in no time at all the required amount for medical expense shall have been reached before you even know it.
    Please feel free to add your own «causes» to the website quarter-back.org and let good-hearted people help you beat the disease. The healing will work both ways, for you and for your donees.
    Nonetheless, if you feel that you are not in need of any assistance for the time being, I would like to request you to tell your friends, subscribers and relatives about the Quarter-Back To Society. In so doing, you would be helping in saving someone else’s life.
    I wish you all the best and quick recovery for your gigls. Be happy and stay positive always.
    Sincerely, Irina.

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  2. Ciristy, you keep a great accound of this rare but important situation. I am a student studying mitochondrial function. Recently, a study suggested that patients with mitochondrial dysfunction may benefit from low oxygen / high altitude. I hope this information helps your family and your doctor find new therapeutic options. The study is found here: http://science.sciencemag.org/content/352/6281/54.full and opinion here: http://science.sciencemag.org/content/352/6281/31.full

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  3. HI, I was looking for other Mitochondrial Blogs. I read a couple of your stories I believe I have the same purpose as you. My daughter goes to CHOC and we live in Southern Orange County. I am hosting a Mito Family Social Sept 11 and would love for your family to join. Our children have different diseases but the social is for all Mito families. I asked the Metabolics Group at CHOC to share with their patients. I hope you are still receiving emails from this blog since it has been sometime since you wrote. my website is www.lifeisradd.com

    ReplyDelete
  4. HI, I was looking for other Mitochondrial Blogs. I read a couple of your stories I believe I have the same purpose as you. My daughter goes to CHOC and we live in Southern Orange County. I am hosting a Mito Family Social Sept 11 and would love for your family to join. Our children have different diseases but the social is for all Mito families. I asked the Metabolics Group at CHOC to share with their patients. I hope you are still receiving emails from this blog since it has been sometime since you wrote. my website is www.lifeisradd.com

    ReplyDelete