Tuesday, June 21, 2016

Say a Prayer, Send a Smile, Make a Difference

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The C.O.L.E.'S Foundation has been an important part of our journey with Noah for many years.  I'd tell you that finding C.O.L.E.'s all those years ago was just chance, but nothing is just chance.  It was as if something much bigger led me to find them.  Through the years, C.O.L.E's Foundation has been faithful in posting encouraging and loving words on Caringbridge blog posts (Noah's companion blog that I maintain for his original followers), and has never ever abandoned us when we needed prayers or a virtual hug.  Many foundations have come and gone in Noah's life, very few wanting to be involved continuously.
There have been days when I've felt so down and out, flat on my back with the weight of the world on my shoulders and I sure enough someone from C.O.L.E.'s faithfully leaving me a loving message of hope, faith and courage to lift me up in some of my saddest hours.  It's rare when people don't move on and onto other things in their lives, leaving you behind when you have a child with special needs.  My trust in strangers and people who care have diminished to almost nothing now, I question everyone's intentions who walk into my life knowing it won't be long until I never hear from them again.   I've grown into a pattern of someone introducing themselves by name, and me not making an effort to even retain the name in my memory because I know that the likelihood of me seeing them again is slim to none. 

C.O.L.E's has been the exception to this and for countless years they've never gone away, they have always been there, waiting for me to speak up about a hard day, quick to catch me with kind and loving words to support me in my time of need.  Very few people in this world will do that.  I have very little supports in my life that care enough to even give consideration to how I'm doing or how we're all doing as a family or more importantly how Noah is doing. People check in time from time almost as if they are outsiders casually taking a certain pleasure in the the train wreck called your life, few genuinely have an interest in helping you put the pieces of the wreckage into perspective and reminding you that although you are bruised and hurt and mangled often beyond recognition that you're still living, and how important that fact is.  Because tomorrow holds the hope of a new and better day.

If Noah isn't doing well, C.O.L.E.'s is one of the first places I go to ask for prayers.  They are so responsive when I just need someone to hear me, pray for Noah and send him well wishes.

This month C.O.L.E.'s Foundation featured Noah and our family as their family for the month.  For the entire month C.O.L.E's supporters from around the world send Noah cards with notes about themselves, prayers, wishes, love and tenderness.  These cards have been particularly special to me this month, as I've had weeks recently where I just feel like the world has turned its back on us.  I've been hurt by treating providers that haven't been truthful with me, repair contractors that disappear and never show up again once they lay eyes on the little boy on the floor, emails that are curt and less than caring when it comes to services your child needs, inquiries about even taking Noah to Bandimere to be in the tower so he could watch races with his dad and being told unless an organization requests it on his behalf it's a no..., I have been distressed to say the least about so many things that I have no control over.  That's the hardest thing - to feel helpless over situations that I wish I could change and I can't.  And those helpless feelings of feeling like I'm falling short for Noah sting like the longest sword is being driven through my heart.  And in my spare time I convince myself that I don't want anyone else's heart to bleed like mine does so I attempt heroic efforts to help other special needs families navigate various problems in their own lives.
Inevitably this all takes it toll on my energy, my hope, my faith, and trust in my fellow man.  Each letter, which have come daily from the C.O.L.E's foundation has felt like a reminder at the end of the day that while things seem hard (and they are), that at the end of the day - somewhere out there - (just like the theme song from the movie An American Tale with little Fievel the Mouse....https://www.youtube.com/watch?v=dan6g5a3Dgg) someone is thinking of you.  And some days before you go to bed you really just need to know that. 

Thank you C.O.L.E's foundation for sending us a team of prayer warriors, people dedicating precious time from their busy day to stop and hand write a note, put it an envelope and mail it to us with such love and kindness.  Faith and prayers unwavering.  Hope being sent like beams of sunshine.  I have felt every powerful written word this month, and I hope to bottle up this feeling of being loved so that it carries me through all the days ahead.
For those of you wishing to make a meaningful difference in the life of a special needs family like ours, you can always sign up to support their Say a Prayer, Send a Smile, Make a Difference Program.  I can tell you from personal experience that it's such an important program to remind a family that they aren't in this alone and that they are cared about. http://www.colesfoundation.org/


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.