Monday, March 31, 2014. That is the day that
changed our lives. We waited 5 months for this appointment and on that gloomy and
gray day, Lindsey was formally diagnosed with Autism, ADD, ADHD and a host of
other acronyms. Her health didn’t suddenly fail or a new condition appear, but
for us in a moment where we had only flirted with the idea of Autism, it became
very real. We, like so many other families had always skated through life with
things like this happening to someone we knew- not actually happening to us. I
remember being shocked for two reasons, the obvious that it was “real” but also
because during the entire assessment, I was unaware that the doctor was
completing an assessment, I thought we were simply doing new patient questions
for a new doctor that specialized in pediatric development. You can imagine my disbelief;
my heart was pounding and hands shaking as this doctor expressed, we needed to
simply “love Lindsey for who she was”. The doctor told us so many things in
that moment but the words I will never forget are “She likely will not talk
again, she will not have friends, she will not be able to do sports-, she will
not be able to express her feelings…”. I didn’t know very much, only enough to
feel scared and it was terrible.
While we were shocked by the delivery
of the diagnosis, we were not shocked with the news. We were keenly aware that
something had been off for a while. Since her 18-month shots she had regressed –
we needed to know what was wrong and where to start. Fortunately, God had a
plan for us. We met parents quickly that guided us to her recovery and
encouraged us on the good days and most importantly on the bad. Our story- our journey,
is something I am very proud of. What she has overcome is amazing. It is now
that we are standing at our 5-year anniversary that I find myself drifting back
so often to that day. I wonder if I had the chance to tell myself what lay
ahead what I would tell my 5-year younger self.
I would like to think my first
words would be “it is going to be ok, it will be hard and sometimes the
progress will be so slow you wonder if you are doing enough or if you are on
the right path. You will find your way, God has a plan and Lindsey will
recover.”. I recognize that those are the exact words that I also need to hear
again right now in 2019. Lindsey’s victories are immense and there are so many
things to be proud of, but for now and for a long while ahead I imagine she
will be trying to “catch up” academically, socially and medically. We are so
close to neurotypical, but not across the finish line yet. Our history shows me
she will prevail, but oh how I would love to hear from my future self to have
the peace of knowing 5 years from now she is ok!
I wouldn’t shy away from talking
about the emotional rollercoaster, the hard days where you FIGHT for your
child. The moments where you feel completely alone and no one can understand
the internal struggle. The moments where your fears overcome you. The moments
where you feel lost. The moments where you cry by yourself. But then I would
also share that those are the moments that help you rebuild your relationship
with God. And those are the moments that allow you to feel more pride and love
than you thought imaginable. Those hard days allow you to see the small
victories and recognize that NO victory is “small”. The loneliness allows you
to appreciate the family and friends that “step up”. The internal struggle
paves the way for a bond that is indescribable.
I would tell myself “you don’t have
to know everything, you will learn along the way”. This journey of recovery is
overwhelming but do-able. I would also tell my younger self that doctors-
especially in this field- do not know as much as you do, follow your gut.
Lindsey will express her feelings, words and thoughts, Lindsey will have
friends, compete in team sports and be a light in the lives of everyone who
meets her. And my final thought would be “just never stop, never stop trying,
learning, sharing or loving”.
I do find myself reflecting back
with each new parent I meet, I can instantly remember the swirl of questions
and fears. I can relate so much better than they will ever realize. Each
conversation I have I starts with “it is going to be ok”. If you are a parent
that just had your world turned upside down please hear these words “IT IS
GOING TO BE OK”. Read our story, read others stories of success and join groups
of encouragement and enlightenment. The most intelligent, wise and diligent people
I have ever met are parents of kids with special needs. They don’t give up and
they fight for knowledge, truth and solutions. Meeting these parents because of
like circumstances might mean that your life has challenges, but it also means
you are among true warriors and you will gain strength being with them. God has
not left you behind, he has promoted you. Take this opportunity to lean on God,
let him give you peace, love and purpose.
I am eager to see my post 5 years from now and look back on this moment in time. I wish I could see your story in 5
years too! We chose to celebrate this anniversary because it shows us where we
started and gives us the chance to relive the moments where we beat the odds. I
encourage you to find celebratory moments and really enjoy the steps to
success.
#autism #autismhope #hopefaithandautism
