November is an amazing month. Here in the south, it’s when autumn really
begins. The humidity and intense heat leaves us, putting us all in better moods
(not to mention having better hair-ha!). We
watch football, and make family time. There
are school plays and special church dinners, and so on and so on. Even Facebook lightens up in November. The trend for the last few years has been to
post a status, one on every day during the month, to remind others what you are
thankful for (and hopefully reading other's statuses will remind people what they themselves
have to be thankful for). November is special. We think differently. We feel differently. We’re better, happier people.
I’ve been thinking about this lately, and how funny it is
that we vow to be more grateful once November makes its appearance. For the entire month, there is this internal
battle (at least with myself) on how I know I should be openly grateful all
year because it feels good, but sometimes, especially in our different kind of
family, I don’t always feel like being grateful. Bad things happen. Money runs tight, children get sick, things
break, important things are lost, people leave, words sting. It can’t always feel like November but the
thing is…that shouldn’t ever matter.
Gratitude is required of us. Every single day.
I’ve also been thinking a lot about teaching our children to
be grateful, and talking with them about what they are most grateful for. During this, I’ve wondered many nights what Ava would say
if she could answer that question on behalf of herself. 1 Thessalonians 5:18 tells us “Give thanks
in all circumstances; for this is the will of God in Christ Jesus for you.” So what would a severely disabled 5-year-old
girl have to be thankful for? Plenty! And I have no doubt in my mind that Ava sings His praises every day, even when her eyes are too tired to open. Even though she can’t
speak. In fact, in her quite and simplicity she probably finds Him easier than
most us who act like we can barely make the time.
With the help of my eldest children, we came up with a list of things that Ava is probably thankful for. Some may seem funny (this is kids we’re
talking about here), and some of them have completely changed my own sense of gratitude
for my life.
Ava’s Thank-you’s:
-
Ava is
probably thankful it isn’t 1801.
This one came courtesy of her big brother Dylan. “If you think about it,” he told me one day a
few months back, “if she was born in 1801 she wouldn’t even be alive.” This is so very true, and I have actually
thought about it a lot during her life.
Chances are she wouldn’t have survived past eight months old, when she
could no longer eat without the assistance of a tube in her stomach. Not to
mention, the diagnosis of her syndrome wouldn’t even exist for another 150+
years. Ava may be sick, but she’s so
fortunate to have been born in a time when, so far, every scare or threat on
her life has been saved by technology and much advancement in medical knowledge. God put me, and her, on this earth at a wonderful
time. Bless the hearts of the mothers
who lived back then with daughter’s whose lives were taken because of this
syndrome, and probably never even knowing something was wrong until it was too late. At least Ava has more of a chance, and
knowing that was completely in God’s timing should make all of us feel
overwhelmingly grateful.
-
Ava is
probably thankful for cool duct tape.
This little gem came from Connor, and I will go ahead and admit I’m
overly grateful for this as well. Ava
has a special blue rubber chair that she’s had since the first year of her life. I don’t know how to explain what it means to
her other than to say it’s her own Aicardi version of a security blanket. She prefers to sleep in it, eat it, even
seize in it (what a preference for a 5-year-old to have!). As a toddler, she
would get upset and then self soothe the moment I placed her in the blue
chair. She’s learned to “escape” from
it, building her muscle tone tremendously.
It’s been used in the bath tub.
It’s made the cut in almost every home picture of her. It’s where she’s safe. About a year ago, the chair began to fall
apart. Our insurance wouldn’t cover the
purchase of another because she already has a wheelchair and like anything she
requires, those things don’t come cheap.
Every morning when I would put her in it I would pray that it would last
a little longer until we found something else, or that she would just learn to
live without it. Two months ago the
seams and edges of the chair began to split so fast (and were so sharp) it didn’t make me feel comfortable to even put her in it. Her
legs stay scrunched in it because she has grown so much, and we have long since
removed the safety belts because her growing body is too big to allow them to snap
comfortably. Regardless, Ava wanted to
be in her chair. I called our medical
supply company and told them to get me another as soon as possible, whatever
the cost. That’s when they let me know
that the chair she has now is in its largest form. They could have ordered a new one, but it
wouldn’t be worth the money because soon she will completely out grow it
anyway. I was devastated. I know how
much security and comfort her seat gives her, and in a child with severe
multiple disabilities, it can sometimes take a life time to find something like
that for them. That’s when I found the “pretty”
duct tape. It isn’t much but its holding
her chair together and looks so Ava-ish doing it. This tape is buying me the time I need to
help Ava find her new place of security.
It’s not just duct tape…its completely kept Ava’s world from changing
too quickly. That means everything to a special needs kid.
-
Ava’s
probably thankful for Facebook. This
idea is all on me. I am officially
addicted to Facebook because I enjoy being connected to people I care about,
but most importantly, with the entire world of Aicardi families. Before Facebook, we were connected to many,
many families through email, but nothing short of living next door to someone
can take the place of being able to discuss questions, fears, or even celebrate
achievements in real time. Pictures and
video make Ava’s Aicardi sisters even more real to us, even though they may be
on another continent. I love these girls and their parents as if they are our
own family. Years ago when she was first
diagnosed, I couldn’t help but feel fear of the unknown and anger that she was
given a disability so extremely rare. I
didn’t know how I could do it on my own, without someone who’s “been there,
done that” to help keep me going.
Facebook has allowed that. Say what you want about the idea of social
networking, but evil can be found in anything.
I am just so very grateful that our small group of Aicardi families has
been able to use it in the way that we have.
I bet Ava is, too.
So you see? Every
one, in every circumstance, has something to be thankful for. Even Avabug.
I am grateful for her.
I can’t say enough how much my whole world has changed because of her,
and even her diagnosis. I often feel
like her suffering has opened my eyes in such a way that I want to hug her every
day and thank her for making the sacrifice so that I may continue to grow. I’m
thankful for my husband, Drew, who did not meet Ava until she was two-years-old,
yet has fit so comfortably into her special world that you would never know
it. He provides for her, loves her,
entertains her, and allows himself to learn from her, too. I’m thankful for my oldest step-son Dylan, who
has never let another child speak harshly of Ava without defending her, yet
still finds room in his heart to help them understand her better, even
after. I’m thankful for my youngest
step-son Connor, who is the dream maker for Ava. He believes in her in ways I never thought
to, and she has blossomed so much for it.
I’m thankful for Ava because she is THE best teacher I’ve ever had. She is changing the world and I’m the first
one in line to experience it. I’m
thankful for my dad, whose own heart aches for Ava as much as mine ever has. It’s nice to have someone you love so much
share the load with you. I’m thankful
for my mom, who has never once failed me when I needed her, and who is the
first person I think of when someone tells me I’m a good mom. I had to learn it from somewhere! Most of all, I am thankful for it all. I’m thankful for all of the love and good
people in my life…all of the “November” days…and I’m thankful for all of the
bad days that pop in between. I am so
thankful He gave me this life and that she’s teaching me how to live it.
