Yes challenging is an understatement....
Oh course we all have those nightmares about all the things you never think will happen to your family then you wake up..... and you thank God it was only a dream.... Then one day the nightmare comes back only this time you cant wake up, you ARE one of those people you feared becoming... a mother (parent) to an ill child..... Working through all this is indescribable... (1.) I was dealing with my child (not someone else's, MINE) being diagnosed with a life threatening illness with no cure... that in and of itself is often too much to think about, and it kinda took me and continues to take me through a grieving process, anger, sadness, blame, guilt, sadness, hope, frustration you name it I felt it and then some.... (2.) I have had to learn a whole new life, a life filled with complications & medications (3.) I lost my job, which was a HUGE blessing but medical bills went up income stayed down and that caused allot of other problems including a car repo ( I guess we all have to experience that as well to truly have compassion for others).. (4) I have made awesome CF friends, only to see them die, which is like the best and the worst experience ever, cuz if you have truly ever known a CFers they are amazing fighters who will quickly show you the true meaning of life... and then they may leave you because there bodies just cant keep up anymore........ (5) I have had to watch my child grow beyond his years, and wished more than anything it was me and not him.... (7) I have become a walking pharmacy, racing home to meet the UPS truck so as to secure thousands of dollars worth of drugs, (not that anyone one else would want any of them, there useless to everyone else and lifesaving to lane) (8)and I fear the future as to how in the world thousands of dollars of monthly meds, will always be paid for.... (9) I often look at my child and wonder what is going on inside that precious little body, that appears so beautiful on the outside, but is always fighting to live on the inside.... (10) I just struggle, just simply struggle..
But
(1) I am blessed to have my wonderful family and friends (2) I am blessed that my family is relatively healthy (3) I have been given the gift of life and it will not be wasted (4) I am learning that children dream BIG, it is us adults that stuff it out of them (so try not too) (5)I know that God has huge things in store, we WILL have a successful non profit and we will eventually be able to take care packages to people in the hole (cfers doing hospital time) which is one of our goals.... (6) We will continue to fight for a cure and will have hope that one will be found in Lane's lifetime. (7)We will make this life count everyday.....(8) I will prioritise my time to be most efficient allowing me to be with my family more.... (9) I will stay faithful that this is all in Gods hand, and he makes no mistakes, he will provide for us and walk beside us on our entire journey. (10) God has blessed us with a new awakening and once you see life through totally different lenses you don't want to go back.... (11) I have spent almost a year now FEELING ALLOT, but I am feeling, which is more than allot of people are able to do.... (12) I am so utterly grateful for ALL the wonder people in our lives, some we knew, some were once strangers but no longer... I am so grateful for the help, and the prayers, videos, and the kind words one never forgets....
A stranger sent me an awesome email that was so touching and towards then end she said:
"So you just stand my sister and having done all just stand! I will be standing with you! God Bless you, Lane and your family!"
You don't know what impact that has on someone like me who often feels so alone in a world so unknown.... I buck up, and do what I have to do, but I still often feel alone. I still cry every time I read that one...
Look I know that in a few years we will work allot of the kinks out..... But man the transition really stinks.... Its life changing, life altering... I am having a Complete LIFE MAKE OVER, and it takes allot of faith....
Why am I rambling well
This year we have also become part of Make A Wish, and I knew little about this organization prior but now realize that is it far bigger than one wish.... we have been able attend things that ordinarily would have never happened, such as going to a carnival, or fishing with the Boone Family and his friends, and attending the Celebrity Slide.... This organization has brought allot of fun and smiles to us during a time we really needed something to smile about.... They have given us things to look forward to and some awesome memories.....
So I am writing all this to say.... This is the season folks, this is your time..... Make it count, make a difference... I don't care what it is, or for who it is, just simply do SOMETHING from your HEART.... It can be for an organization like Make A Wish,
or to help find a cure for something like Team Lovin Lane who is officially signed up to walk for a cure May 8, 2010 (Still so thankful for NEW YORK walking for us last year when my spirit was to tired too, We love you New York)
Okay so I had to throw those in there just in case that is where your heart led you, but seriously we ALL have the ability to be a blessing to someone else this season.... Don't have money that's okay, help someone help anyone, help hang lights, shovel someones driveway, make a video ahem.... If you want a basket to go to someone in the hospital, I would love to help you..... Need a family to adopt for the season I know of some, and would love to connect you.... How ever you choose to do it, most importantly make a whole hearted attempt to LOVE A LIFE....
May no one feel they are going through life alone this season, as my new friend put it....
"So you just stand my sister and having done all just stand! I will be standing with you!"
Make your life count, be a blessing..... SO PLEASE WILL YOU JOIN ME THIS SEASON AND LOVE A LIFE????
If any of you want to share any awesome stories, please do I would love to post them....
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