Saturday, January 11, 2014


Bookmark and Share
Being a special needs parent is often tremendously lonely.   I've been naive to think that people would share the same priorities that I do.   I have a tendency to feel a deep sense of disappointment with expectations of others as it relates to Noah and our family.  But at the end of the day,  you just have to shake it off and realize that people will either get on your train or you must depart without them. 

I went to the grocery store today, and the cashier asked if I was back to work yet after the holidays.  I explained I likely could never go back to work in the traditional sense as I care full-time for my severely disabled son.  She was from another country, and was trying really hard to comprehend what cerebral palsy meant.  She thought it was a temporary condition.  Which, gosh I wish it was.   But once I explained that Noah was much like having a five year old baby that could not care for himself, she said that he was very lucky God gave him to me because where she comes from they are not permitted to live.  And she wasn't kidding.  She said unspeakable things happen that no one mentions. 

I know that some people have a really had time with phrases like "God doesn't give you more than you can handle,"  or "God chooses special parents for special children."  But those types of thoughts don't upset or bother me.  Because it's rather true, without God knowing the type of person I am and that I'd go the distance for Noah and his needs, where would he be?  In a nursing home because people think he's a family embarrassment?  Adopted because no one thought they could go the distance? Or born in another country where a "damaged" child was deemed not worthy of the gift of life?   The cashier also reminded me how lucky we are to have money, and fresh water, and a safe place to sleep.   How we come from the land of opportunity - which often causes people to do nothing more than wreck themselves and forget what their priorities should really be.   There are some people who inflict upon themselves unnecessary evils and pains who have the power and influence to change their own reality.  Noah doesn't have that luxury.  He cannot change the circumstances of his brain injury.   I cannot forget my purpose and how blessed Noah is to be alive ever.  Every time I look at Noah it is crystal clear where my priorities are.   I suppose we all have to pick what our priorities are - and I can't force or expect someone to join the most important aspect of my life.   Each person has their own lives to live however they see fit. 

After a very challenging day, that cashier gave me a lot of perspective.  I know what defines my life - my authentic self.  The person I am at the very core.  And I'm okay with the idea of God blessing us with allowing Noah to stay because he knew I would go the distance. 

This is an excerpt from the Velveteen Rabbit that tugged at my heart today, giving perspective on what it means to be loved.

Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'

'Does it hurt?' asked the Rabbit.

'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.'

'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?'

'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.”
Margery Williams, The Velveteen Rabbit


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