Hello. It's another 2am
blog deposit here in my brain. As I lay in bed trying to fall asleep my mind
wanders all over the place. I look forward to church in the morning; think
about all that needs to be done, wonder who will be speaking, etc. I thought
about other people I should contact about our upcoming silent auction, and my hair,
bouncing all over the place. I read a blog recently; actually, I read two,
about adoption and supporting families after they bring their child home. They
brought up many valid points, things those of us that haven’t been through that
experience wouldn't think about. While I made mental notes, I also noticed the
commonalities. Our situations are very different and still have plenty in
common. I also read another blog from a parent with a child who has autism in
which she talks about how she would like her child to be treated (in which case
she pointed out that this child should be treated just like their sibling, and
like any other kid). It all brought up some very painful moments of so many
things people have said to me along the way. People can have the best
intentions and still say the dumbest things. I made plenty of mental notes.
Compassion is something that has always been very important to me. I make an
effort to see things from others point of view, to try to be mindful of what I
say and how it is perceived. I get irritated with people who don’t. I could
come up with a list of things you should avoid saying to a parent with a child
with severe special needs… Maybe I will get around to my own version of that
post.
Anyway, that rabbit
trail lead with our silent auction, which we are working on to raise money so
that children much like my son can receive therapy that is not currently
covered by many local insurances. I thought about how difficult it is to raise
a child with special needs, and how that difficulty compounds with the severity
of their developmental delays and health needs. I briefly allowed that door to
open a crack and think about the "why me?" not in a whiny fist
shaking at the heavens. But an honest, confused, God I could use some affirmation.
I believe that everything happens for a reason.
I used to believe that
my life was hard, and I have this child because I am being punished for my
mistakes. I feel this constant need to prove to the world that I am a good
person. I didn't intentionally do anything during my pregnancy to harm my
unborn child. It doesn't matter how many Doctors tell me that it isn’t my
fault. I feel like if I don’t prove myself everyone around me will think this
is my fault (yes because sometimes I blame myself as if I must have done
something wrong). Oh how easy it was to be a hamster in that never-ending
wheel! Thankfully, I am getting over that. Case in point: today I took two of
my three boys to the grocery store at 11am in their pjs because it was cold and
I didn't feel like getting them dressed. As if this job wasn’t hard, enough I
have to keep heaping all sorts of judgment and criticism on myself.
Here's the part
where we get real. Forgive me in advance. I feel/felt that pressure because I
hold others to the same judgments. I think some kids with special needs have
parents who are drug addict’s smokers neglectful or you name it. Whoah now
before you chuck stones at me. I don't believe that is ALWAYS the case, in fact
I KNOW better. I have met MANY wonderful people who have a child with special
needs. Whether or not it is the truth it is hurtful. Whether or not it is the
truth, what business is it of mine? At one time, it was thought that
Septo-Optic Dysplasia was a result of the mother drinking during her pregnancy.
Well great! I was 21 when I became pregnant with my son and there is a
possibility that I had a few drinks before I knew I was pregnant. It now
appears that this information is not accurate. If that were true, I suspect
there would be many more cases of Septo-Optic Dysplasia.
For a long time, as I
fought to understand what was going on, I was ashamed. I can feel God shaking
his head at me; I have it all wrong you see. I have to laugh because we are
caught up in a tangled web of lies and we miss the truth completely. As that
all unravels and I begin to see more clearly I let go of those misconceptions.
Before I just ran away. I could not believe in a God whose punishment to me was
to punish an innocent child. Keegan’s disorder is not my punishment. I can’t
explain it, but he is a blessing. If anyone else said this to me, I would scoff
at them. It’s something you have to see for yourself, kind of like throwing
those bible verse grenades. What I do know is how dramatically that little boy
has altered my life. The many things I’ve learned as a result of having him in
my life. I can see a small part of the purpose in all of this. The beauty of
God's love for me is more than I can understand, it is perfect, and something I
will never fully know. I make mistakes, but they are all woven into His perfect
plan. Each experience being a thread connecting one to another to create
something I cannot see yet. It is hard. We only see life through broken eyes,
it distorts reality. One day we will see with new eyes. Our heart will be
mended. I can only imagine the beauty! I try to picture seeing like a hawk with
so much detail. Or maybe a better reference would be to say seeing like Bella
as a vampire. LOL I just saw Breaking Dawn
Back to the point, why
me? While I don’t have a full answer, I know a little. Because that is exactly
what I needed to get to where I am right here and now. To share this story with
you. To tell you that no matter what you may feel, you are not alone! Maybe you
are like me. Maybe you aren’t. Like the adoption blogs I read maybe this will
provide insight for you that you can use to love another mom/kid/family better.
What I know is that it is more complex than I can understand, and that it may
seem like an earthquake ripped through my life a split my heart like the Grand
Canyon (at times). Nothing I face is remotely close to that of Jesus, and while
I am not insignificant I am not the earth nor am I the sun which it rotates
around. You know what’s funny to me… paradoxes; they keep jumping out at me. I
am but a grain of dust, but don’t take that to mean I am worthless, I (and
you!) are treasured and loved in ways we couldn’t fathom.
Another reason I
believe I am here, writing this blog is to share my journey in my relationship
with God and how that has been affected by having a child with special needs. I
believe there are many people out there like me that take that diagnosis, that
horrible earth shattering moment, and take that as their punishment and turn
away from God. How could anyone believe in a God that would do that? I believe
it is a natural response given the lies and corruption found in religion. I
want to share why I came back. How much better my relationship and my life is
since those lies have been removed. It is hard to put into words; it is an
overwhelming feeling of peace.
I think much of what
the pastor hit on in church this Sunday as he spoke about the kingdom, speaks
volumes. He asked the congregation to close their eyes and picture heaven, a
place with no hospitals, no illness. It reminded me of a time when I came to
the realization that one day in heaven Keegan will be able to see. Keegan will
be able to walk, run , and play. Keegan will talk to me! (That last one makes
me cry every time I think about it!) I understood that I couldn’t do that on my
own… No matter how much therapy, or how many doctors we see, or any other
treatment that hasn’t even come out yet… I can’t do that. So I said okay God,
I will give you my tiny little seed of faith and let you grow it! Because if
that’s what you have to offer, what
do I have to lose?
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