Friday, October 10, 2014

Down Syndrome Awareness Day #10 - Why God?

I have been trying to go through and clean up photos from the past in hopes of never losing them.  Today I found a disk labeled 2008 Recovery.  This means that they already have been in jeopardy of being lost at one time.  What a better way to keep my favorites than to save them to my blog.  I seriously looked at these photos and felt as though this was my life just last month.  I look at these photos and realize how far we have all come.  I look at these photos and fear that I am not so slowly losing all my babies to a thing we all call life.  On days that I feel like throwing my hands in the air and questioning God as to how he can give me so much to handle, I really, really, need to sit and look through photos like I have done this morning.

There are days where I selfishly do ask "Why has God given ME so much to handle?"  Instead I know that I need to ask how I could have allowed so much time pass by without realizing, accepting and inviting in all the blessings and hardships that God has intended just for ME?  There are hard days, there are hard decisions, there are frustrations like I have never felt before.  Some days with the twins being non-verbal, having Down Syndrome, ADHD and Autism truly just does not feel fair to me.  Seeing other children their age (and younger) playing with one another, communicating, laughing, freely running around with the understanding of safety and not taking off into dangerous situations, and just all around being "normal kids" IS hard for me.  When thoughts like this run through my head I'm often stricken with instant regret for my feelings.  Its so easy to slide into the "oh woe is me" days.   And then..... I sit down for no apparent reason to look through photos and get the reality smack in the head.  We have five beautiful children, some are not so lucky.  We have hard times, but so does everyone else on the plant.  I know that God has chosen Tom and I to parent these five children and to do it with the understanding that He is our guide.  As the kids grow older and their likes and dislikes begin to navigate in different directions we can be assured that God has set this path for us and it is our responsibility to travel it with comfort knowing He is with us. 

My husband Tom has always been my rock when I begin to doubt.  There are times that we are at Children's Hospital about to let our children go into surgery for one thing or another and I am nervous and scared.  Then Tom will stop me with tears welled up in his eyes and say to me, we are so lucky to have these boys, we are so lucky that they are just getting this or that done.  Think of how many parents in this very same building are getting the bad news that their child was just diagnosed with this or that and may or may not be coming home.  That puts our day and situation into perspective.

Having a child with Down Syndrome is not a downer, its not a burden, its not a debt we have to pay for some previous sin, its not some sort of punishment or some freak of nature.  I read silly stuff like this all over the internet, its just nonsense.  Having a child with Down Syndrome is in so many ways just like having children without Down Syndrome.  We have three typical children who get in trouble for not obeying, who get hugs and kisses for doing something wonderful, who we love no matter what decisions they make but often remind them,  just in case, to make the good decisions.  I recently read an analogy on Facebook relating a four leaf clover and children with Down Syndrome.  They are both uniquely rare and to be cherished as such.  Having a child with Down Syndrome gives us that don't have Down Syndrome the opportunity to see how easy we have it, how instinctively we just understand things and how they work, how selfish we are and how much we really need to dig deeper for patience and understanding for that which we do not know.

As I sat down to share these photos I never thought I would type what I did, but I'm glad I did and I hope that sharing this will comfort those who have a newly diagnosed child with Down Syndrome or perhaps open the eyes of someone who looks at children like mine with sympathy or disgust.  People with Down Syndrome are people first with all the same wants and needs as us.  Love and Respect being the first things they need and deserve. 

I appreciate each and everyone of you who already does love and respect my boys for who they are and try to do what you can to communicate that to them.  Take a roll down memory lane with me to the year 2008.


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