"Courage to Surrender Control"

So, today in our Journeys meeting, we discussed the chapter in the book we are studying, Another Kind of Courage titled Courage to Surrender Control.  The moderator asked what it means to surrender in our situation as special needs parents.  Surrender in our situation is somewhat confusing and contrary to what we need to do on a daily basis.  If anything, we need to be in absolute control of a multitude of things like coordinating various therapies, making sure the child receives all medications or supplements, adhering to a special diet (which can sometimes be very strict), advocating on behalf of our child in the community among people who may view us like aliens and even with educators who don't even have a education plan for our child - no, we need to make that up ourselves through the IEP.  So, surrender to God, surrendering to his Will all sound like things we as Christians need to do, and at some theological level we may do so, but on a day-to-day basis, we absolutely cannot surrender control and let things fall apart.

 The closest I have come to surrender is what I would phrase as acceptance of my son's condition. For a brief period after his diagnosis, I was so fired up about getting the right supplements, the right specialists, the diet and therapists in hopes that he would get better and not have a disability.  This just couldn't be happening to us! We are good people! We don't deserve this fate!  But, now I have come to accept his condition as being permanent, life long and a big determinant of what will shape our lives in the future. But, I have not resigned myself to believe it will be all doom and gloom.  He may not become the CEO of a Fortune 500 company or become the valedictorian of an ivy league university but I know there are gems of beauty waiting for us in our future.  Something immeasurable by the world's standards but only felt with the heart.  Beauty that can only come from deep love and compassion.  I so look forward to experiencing this and honoring Lucas' journey.  God doesn't look down on him say say,"oops, I guess I made a mistake there".  God shaped and formed him for a purpose so unique and different from others but no less worthy and I intend to honor this sacred contract we have with Lucas and with God.  How would he feel if only he received pity for his condition?  No, there is honor in his disability and in him being on this Earth. As time passes,  I look forward to God unraveling the mystery of his purpose.

The one thing I have learned from this chapter about surrender is that, for my own mental health, I must absolutely surrender and release the dream I had for Lucas before his diagnosis .  What wasted energy in pining for what could have been...Recently, an article was published by Autism Speaks about how there is so much hatred in the autism community.  Parents are lashing out at other parents, comparing their children in terms of who is more high functioning, the debate over vaccinations, bashing the direction and purpose of the leadership of Autism Speaks, etc etc..I have witnessed some of this negativitiy myself in my own Dup15q community and have decided I want no part of it. I don't judge these parents,  They are hurt, angry, bitter for the loss of their dream for their child.  It isn't fair. But, their suffering doesn't excuse the bad behavior.  Perhaps,they never have gone through the proper stages of grief and mourn the loss of a dream in a healthy way and are now  left with callouses so ugly in their hearts.  Not all parents have a spiritual discipline and I wonder how they manage to not let negativity suck out all the goodness and sense of gratitude in their lives.  I can't imagine treading this journey one step without a spiritual foundation based on Love and the knowing that a divine God is on my side.

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On another note, Luki has recently decided he wants to be a night owl and party it up all night. A few days ago, he went with 3 hours of sleep in 30 hours and he didn't seem tired. He has had episodes when he didn't sleep at night but he never went this long without sleep! Fortunately, he wasn't fussy but giggled the whole night and pretty much enjoyed himself silly.  Luckily, I had my melatonin at home and crushed a third of it and gave it to him.  He stayed home for three days after as it caught up with him and he was fussy and feeling sick.  This weekend, we went to Whole Foods and bought liquid melatonin,1 mg, just in case we need to use it in the future.  I told Gabriel to sleep in the nursery as he has work the next day. The following morning I was such a grouch with him (I hadn't slept all night!)  Poor Gabe....

He climbs everything!

He received his angel wings.