It’s been over a month now, but still, it seems surreal. It
still has not quite sunk in.
We completed a neuropsychological evaluation with Ava. We
were hoping to gain more information on how to best help her be the best she
can be. Much of what we learned we already knew. Some of what we learned was
new information. And some of what we learned we knew, but we had been trying
not to know.
The official diagnosis we have currently is Borderline
Intellectual Functioning, but only because our Neuropsychologist is a “purist”
– her words, not mine – and felt there were some scores in the functioning
range that kept her form giving the Intellectually Disabled Diagnosis. She did
note in her report as well as in our consult that she expects Ava’s scores to
dip in the next few years as she gets older which means the ultimate diagnosis
it Intellectually Disabled.
Borderline Intellectual Functioning
Intellectually Disabled
It really didn’t matter; the news was the same. We heard
from someone’s mouth for the first time that they did not expect that Ava will
ever be able to live on her own without support. And we were warned with what
we have already known – we will have to protect Ava fiercely from those who
might want to take advantage of her. We sat and talked about things that no
mother of a 10 year old should ever have to think much less devise a plan.
I can’t say that we were totally blind sided. We knew it was
a possibility. But hearing it. Seeing it in black and white. It took away our
last bit of hope. Don’t get me wrong, with Jesus we always have Hope! It wasn’t
that Hope that we lost. It was the hope that the things we saw were just
delays. It was the hope that we would go in and they would tell us “It’s all
going to be ok.” It was the hope that they would say, “She may have some
delays, but she will function on an independent level at some point.” Those
were the hopes that were gone.
I wanted to write about it then…when it happened. But I knew
I would short circuit my computer with the tears that refused to be contained.
I would hold it together until the last child was dropped off for school. Then
the damn would break and the tears would flow. I would cry until I didn’t think
I could cry anymore….then it would start again. I would text John because I
couldn’t call. He would never have been able to understand what I was trying to
blubber. I would pull myself together before everyone came home…then start it
all over the next day. That went on for about a week.
I struggled with struggling. I mean, anyone who knows Ava
loves her! We couldn’t ask for a more wonderful daughter…how could I be so sad?
There were some days that it was just a totally selfish grief that overwhelmed
me. The thought that I will never be an empty nester. I mean we already knew we
would be ancient by the time we got the kids raised, but there was that hope of
10 good years after that to travel, do missions, REST! But the new news meant I
will never be able to go on a vacation without making sure someone is watching
our Ava. I told you it was selfish….but it’s real.
I have settled in my innermost being that God is good. We
have been through enough in our family that battle is won and settled. So I
didn’t get angry at God. But I did wrestle some more with the fact that her
disorder is in her DNA! It IS how she was knit together in my womb by God
almighty! It means that how she is now is her fearfully and wonderfully made.
It means that how she is now includes ALL she needs for the plans and purposes
God has for her. So can I even pray for healing? Should I pray for healing?
Does she need healing? I haven’t settled those yet.
I have two friends who have always inspired me on their
special needs parenting journeys. I had no idea God had been preparing me for
the journey myself…still sounds weird…special needs parent. One of these
friends shared a post a couple weeks ago that summed up all I had been feeling
perfectly! She called it “special needs parent grief”. She is WAY further down
this path than me, and her daughter has challenges that require much more of
her as a mom than my daughter ever will me – so to compare would be insane. But
she spoke of how it hits you when you least expect it. We were in the van and
everyone was talking about what they wanted to be. I hear Ava’s sweet voice
blurt out, “I am going to be a doctor!” Before I even know it the tears are
spilling over onto my cheeks, and I have to feign something in my eye to not
upset the kids who notice the water works.
Then the Sunday after we got the news, I was bawling my way
through worship. I look over where the kids stand, and I see this…
Ava fully engaged in worship! Eyes closed, hands open ready
to receive, fully basking in the Glory of her Heavenly Father. And in that
moment the first sense of peace I had since the news. I have no idea what Ava’s
future holds, but as we have always said, I know Who holds her future! I have
no idea what it means for me as a mother, but I know the One who promises to
provide me with ALL I need to do ALL He has given me…and He gave me Ava!
Then at a night of worship we had, our youth pastor gave an
amazing Word that he received for Ava. He shared how he saw her dancing in a
field of flowers GRACEFULLY! That means the jerky motions are gone. The
instability is gone. The dystonia is gone! Pastor Ben said he believes we will
see her dance that way in the physical, that it was not just a spiritual grace!
So God continues to be faithful. He continues to provide
encouragement and give us His Hope for our Ava….His Ava!
Now I have to have that conversation with myself several
times a day some days….and some days I just get stuck in the sadness of it all.
We are still working through it all. But one thing that has never changed….I am
blessed to be that little girls mom! I am ready for many more adventures with
Ava!
