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