Wednesday, May 7, 2014

Ashlynne's Army

I feel like the most common question I get asked by people is how do I keep up with everything... How do I do it?  How do I keep up with the activities of all 4 kids, work 40+ hours a week, maintain friendships and relationships, and care for Ashlynne's Ichthyosis on top of all of it?  The answer is... With a lot of help.  I couldn't do what I do without an amazing army of support behind me.  I have a very understanding husband, who gets that he can't always be the center of attention, and that we both have to make a lot of sacrifices to make our life work.  He stepped right up to the plate from the second he met us, and took on me (which is a chore in itself!) and took on Ashlynne's care without even batting an eye.  Financially, he has helped care for her in many ways and has helped provide things that I couldn't have on my own, and emotionally, I don't even have any words for what he has provided for the two of us.  I have very caring, understanding friends that get it that we can't always drop everything and go, like the average family.  Every evening has to be planned well enough to fit in Ashlynne's bath and skin care routine.  And we have definitely been blessed, because a lot of our friends will come to us if they know we are planning a late night!  Some of my girlfriends will even step up and start lathering lotion on Ash's back to make it go faster so we can both get back to the group.  Because everyone knows Ashlynne definitely does NOT want to miss out on anything!  We have a good friend, Bobbie, who has helped us figure many things out as far as insurance, and medical care.  We have been blessed with AMAZING teachers who have taken a very keen interest in Ash, and have done their best to help her physically and emotionally.

But most of all, I am blessed with an incredible family.  My parents picked up the slack from the very beginning.  When Ash was born, it took me a while to get my head above water and even wrap my mind around the disorder that affected her.  During this time, it was my mom that was researching every product and finding every support group she could. She has always been there to help give me a break if I just need a weekend away, and for a shoulder to cry on on those days when it starts to feel like too much.  And my dad has always been that guy that let me get the tears and anger out on those days where I ask myself "why her?", but has always been strong enough to tell me that it's time to put my big girl pants back on and get through the tough times. Neither Ashlynne, or I would be where we are at today if it wasn't for all of the unwavering love and support they have shown us on this journey.
Our rock
My, and Ashlynne's biggest cheerleader

It is because of all of these people, and many others that I have not mentioned, that we have been able to give Ashlynne as "normal" of a life as possible.  Thank you to every single one of you for your support, for being a part of our lives, and for sharing our story!

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