Sunday, February 14, 2016

Butterflies, Angels and Adorabelly on Valentine's Day

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Noah's little brother was exceptionally excited for Valentine's Day this year.  His awareness of holidays has increased now that he's older and realizes that holidays are gift giving days.  Luke's excitement fuels Noah's excitement and he reads his little brother's energy in anticipation of fun.   Luke is still in a phase where he wants to wear identical clothing to Noah.  It's really cute on how much he really wants to be like his older brother.  He'll search his closet to see if he can find something that matches Noah.   So it was really cute that a business called Adorabelly Design made matching Valentine's Day shirts for the boys.  One shirt with a blue truck and the other with a green truck each hauling hearts.  They were perfect for Valentine's Day.  Adorabelly also does a lot of other custom items, and specializes in G-tube covers.  You can check out the store at this link.

Noah was gifted with the sweetest butterfly cookie holding a heart from the Butterfly Fund and Mia's Cookies and received Valentine's Day cards from Angels Sending Hope.   Both were the most touching gifts.  There are days... most days in fact where you feel that you and your child not on anyone's mind.  So when something like these beautiful packages of love find their way to us, it's really a reminder that someone out there cares.  And we need that.  Most importantly Noah needs that.  To have a severe disability like Noah has, and to be non-verbal and be cognitively aware and essentially trapped in a body that doesn't work for him, is understandably frustrating at times for Noah.  I can read it in his eyes the yearning to play with toys that his brother has, or aches for the world to see him, like the world views his typical sibling.  As Noah grows older I fear he feels like he's in the background, even though he's very much front and center to us. 

So when he's thought of and can help open a package that arrived just for him, he understands and I think it really brightens his days, and brings him a spot of sunshine.  We had wanted to do something really special to celebrate the day.  We contemplated dinning out, but knowing that the crowds would have done Noah in, and that it's germ season that was out.  We opted for dinning in at home, and his grandmother found the boys these cute little individual heart cheesecakes at the store for desert, which was perfect for Noah since he demands cheesecake after dinner, nightly.   That's the tough thing, I always think big, and then have to reel myself back into realize a lot of these things just aren't realistic for Noah.   If it's too cold or windy, we're indoors, if there will be too many people and crowds or long waits of any kind the game plan is out.  But sometimes the best plans are the ones unmade. 
I am always trying to keep gifts for the boys equal.  I found these chocolate heart suckers at the store and knew that Noah could suck on his with assistance.  It is often hard to keep things the same when you have children that have different physical abilities.  But, I'm trying.  I don't want either boy to ever feel left out of experiences just because of the hand that life dealt all of us.  I paired their suckers with a Lion Guard bath towel for Luke that I found on clearance and and a Disney book for Noah.

Noah is really into books at the moment.  He could have someone read to him non-stop all day long and not get tired of it.  He's also make great efforts to learn how to spell on his AAC device.  Who would have ever thought Noah would learn to spell words.  But we are working on a literacy program and of course reading books with him as much as we can will help him to learn to read and spell words.  I kind of wish there was a an adaptive chair that was made for a parent and a child to sit in together.  We sit Noah on our laps but he slouches and I can tell sometimes the way we have to hold him might bother his hips and sides of his legs, he arches to re-position himself.  It would be neat if there was a couch designed for families like ours where we all could sit and cuddle together comfortably and read.  But even if something of that nature existed I'm sure it would cost as much as a new car, and wouldn't have an insurance code for funding. 

I watched Noah's daddy read to him nestled up in the same recliner chair that we used to use when we bottle fed him as a baby in his nursery, today.  And I love my spouse, my partner, Noah and Luke's daddy more and more for the person he has been all these years and the incredible love and devotion that he has.   I couldn't do this without him.  And I genuinely mean that.   Noah takes the very best of the two of us.

I love you
for all that you are
all that you have been
and all you're yet to be.


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