Tuesday, July 23, 2013

A Journey With Wings

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There has been so many things going on in Noah's life in the last month.   In early June, Noah's friends at 501st Mountain Garrison invited him to Comic Con.  We really had no idea how big and popular Comic Con truly was going to be, but were so excited to be asked to be included in the 3 day event.   Noah loved it.  It was the first time I think we have ever taken him anywhere where he was completely happy and content for an entire five hour stretch.  And with 61,000 people in attendance we were so surprised that Noah was capable of handling such an event. It was truly wonderful as all of our 501st friends made it so comfortable for Noah, they even gave us stormtroopers who had the built in speaker systems in their costumes to guide us through the busy crowds and making a way for Noah's wheelchair.    They also surprised us with meeting Peter Mayhew, (also known as Chewbacca in Star Wars).  He was the most loving and kind person you could ever imagine.  And he genuinely cared and loved Noah.  Truly a gift and and a dream come true both for Noah and his daddy.   Peter even donated to help Noah with his therapy costs from his foundation.   501st has always made us feel like we are such a part of the world, they include Noah like he's just like everyone else.  It is the most amazing feeling of love and inclusion you could ever imagine.    There are so many hugs and so much understanding.   They have filled our lives as a family with such joy.   They have become a huge part of our lives.  We have connected with so many people that will be forever friends in Noah's life. 

Noah Meeting Peter Mayhew

Noah & Daddy at Comic Con 2013

Noah & Family with Peter Mayhew at Comic Con 2013

We took a little break from Noah's once a week school efforts, but hope to resume soon. It's still really a touch and go kind of thing for Noah.  He is still fighting a tremendous sensory gag reflex about attending - even for small amounts of time which cause him to throw up time after time, and the only thing that stops it is when we leave.  I can't quite tell what the trigger is - if it's the excitement of other children, if they approach him too fast, or if he gets excited and doesn't know how to process things.  I just don't know.  I wish I did so I could help him through it.   His teachers and classmates are beyond understanding, and are filled with unlimited patience which makes it easier to come and go as we need for him.   We're all trying to help Noah the best we can with everything. 

This last weekend Noah's family from Texas and Boston came to town in order to spread his great-grandmother's ashes in Estes Park.   It was the first time Noah had met his cousins and he really loved being with them.  They were so loving, attentive to his needs and sweet.  He rather adored their attention.   It was a lovely thing to witness.  Noah did fairly well on the drive up and back. Sometimes Noah has a tendency not to travel well, but we were able to get him a new pediatric car seat which I think significantly made the difference in being able to travel with Noah a little easier.   It was a little tricky pushing Noah up the mountain side in his pediatric wheelchair stroller, thank goodness that they gave us all terrain tires on it, the bumps made Noah gag slightly and throw up a couple times, but over all he handled it well.  His daddy held his hand and helped him spread his great-grandmother's ashes.   His great-grandmother truly loved Noah very much and I'm blessed that he was a part of that moment.   We all took turns talking about our memories of Nana... and even though Noah couldn't verbally participate I'm sure he was thinking he remembered the time when she let go of his wheelchair and turned her back to admire a flower at the Butterfly Pavilion sending him down a little incline and he almost went into the small pond area... he thought it was funny.   It was a run-away wheelchair moment that sent me into a fast chase. This was the first time our family has spread ashes, and I must say emotionally it was easier than a funeral service.  There was so much peace about the experience.

Noah spreading his Great-Grandmother's Ashes
It has been a difficult month for me, as Noah turns 4 1/2 and I continue to do all that I can for him.  There are days of course where I feel I am not doing enough, struggling to provide for Noah all the chances for recovery, battling behind the scenes some difficult circumstances that most don't yet know about.  It's a constant struggle to continue to find ways to pay for all of Noah's out of pocket costs and needs which isn't getting any easier the older he gets.  But life is a journey with wings - we all have wings that need healing, even me, as I continue to grieve the loss of what should have been for Noah - even years later.   My heart is wounded, my soul forever struck.  They say there is purpose in the pain, and I am always searching for that purpose.  A greater reason behind all that we experience as a family with a severely disabled child.   I'm much like a flower trying to learn to bloom where I've been planted at the moment.  But as long as I have Noah I know that my roots will grow strong.  All I have to do is look at him and know that every decision I make I'm doing for him.  And I know that God will provide because I'm giving this everything I have.

Now that which was of the earth, lies here in these few ashes. These we now return to the earth, into the cradle of life, the womb of the world from which we were all brought forth. Life is a process in which we are all linked. We merge and reemerge. That which was earth returns to earth. That which was air returns to air. That which was water returns to water. That which was fire returns to fire. We cast these ashes that they may start life anew.  
In Loving Memory of Norma Jean Brannan (Nana).


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