Tuesday, November 27, 2012

Clearing The Air and a sincere Thank You

I feel the need to clear the air about something.
 
I only hope I can put this right...
 
I originally started this blog,
and subsequently the Life with Lily FB page, as a 
therapeutic way for me to deal with what was going on with Lils,
and as a way to keep family and friends as knowledgeable as they want to be
about whats going on with Lily.
I felt it was much less "in your face" than updates on my personal FB page 
and I just don't have enough time to update on the phone with every new symptom...
 It also allowed me to journal it all so I can look back and give Drs exact dates when certain things happened and it has even helped show a few patterns so we can begin to "guess" when she might go into a metabolic crisis.
As This blog has evolved, and ESPECIALLY with the addition of her Life with Lily FB page,
I have found it has helped other parents who are struggling with similar issues.
I have met other families of little warriors and they have helped buoy me up
when I felt I was sinking.
It has helped us benefit from hundreds, if not thousands, of prayers said on her behalf.
 
This Blog is very very very personal.
I write things that I would probably NEVER say out loud,
but I choose to publish it for all of the above reasons.

This Blog IS NOT
to "play my violin" so to speak.
I do not expect nor want people to feel sorry for us.
And I absolutely DO NOT write this for attention!
I appreciate the kind feedback and the ((hugs)) and prayers.
They mean the world to me.
But I would gladly trade all the "attention"
for a cure for my baby.
There was a point in my life (before marriage and motherhood)
 when I was very young and immature
that I might have reveled in the "attention"
That is not me anymore at all.
I am all to content to stay in the background and watch
rather than be in the spotlight.
Honestly, I often fret over these posts, feeling It draws to much attention to our personal trials.
The things our little family is going through are very difficult
and I do not enjoy sharing my hardships and sorrows with others.
But I continue this blog for all of the reasons I mentioned above.
If nothing else It is something I can look back on and 
marvel at Lily's strength.
I often read over my past posts and am reminded how
very blessed we are
and how much WORSE it could be!
In addition, If it helps another mother know she is not alone in what she is experiencing
with her little miracle,
then it is all worth it.
I am grateful for the blessings of social media
and that it allows things of this nature to exist.
And please know,
I am humbled and honored by your love, thoughts, and prayers for our little girl.
I am so grateful for every uplifting comment, and every virtual ((hug))
Your kind words stay with me and bring a smile to my heart.
Thank you so much for all of your support.
And I cannot say it enough, but, THANK YOU for the prayers.
-Alex (Lils Mommy)

7 comments:

  1. Knowing you IRL I would never think you were doing it for attention. I am grateful for your updates on precious Lily, and for the opportunity to educate myself on her dx.

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  2. Dear Alix, We are the ones blessed to see your posts that keep us informed about little Lily. They are very inspiring and we marvel how much faith and courage you all have. We love you all and I always keep you in my heart and prayers.

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  3. God bless you. Some of those (((hugs))) from across the pond in the UK xxxx
    Keep being a great momma xxxxx

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  4. I totally get that. My virtual space isn't super enlightening like yours, but I struggle allowing myself to share my dumb world with others even to the extent that I do. I hope you haven't been receiving negative feedback -- your purposes seem SO obvious to me just having read the updates. I think I speak for most of your readers in saying that we are just grateful for the chance you have given us to know your amazing little family. It's totally awkward to have strangers, minor acquaintances, and your grandma's pet monkey know your life inside and out, but we appreciate the sacrifice. Just love that girl of yours!

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  5. I love hearing about Lily! I keep her in my prayers on a constant basis. Because of her, and you, we got a mystery diagnosed. For that I am forever greatful.

    She is happy, you are doing something right :)

    Jes W.

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  6. A friend shared your page today....as a mother of two children lost to mito, I want to send my prayers of support and strength. I blogged my daughters journey as well and know exactly how important that it can be! Will be thinking of you!

    You can read my blog at livingwithalpersaveriestory.blogspot.com

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  7. Here it is another night with insomnia and I spend it reading and rereading your inspiring post and viewing the precious photo of my little hero and her very heroic mother. Thank YOU for your strength, for your example, for your testimony, for your precious and enduring love. I know you and Lily have touched hundred of lives. You have certainly touched mine! THank you sweet girl!
    Aunt Terry

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