Sometimes, after my husband and I slip into bed at
our usual 9:30 bedtime, I purposefully avoid going right to sleep so that I can
revel in the silence. The daylight hours in our home are a constant flow of
noise and movement, often making it difficult for my mind to be creative or
focused. In contrast, nighttime is so peaceful, quiet and somber. I relax into
the utter stillness of the house, listening to the breathing of all three men
as it fills the airwaves around me. Once their breathing is heavy and
unrestrained, I know I am alone in my thoughts. They are all asleep. Any
evidence of the day’s stress slowly begins to melt away, but as my thoughts
develop, another evil begins to creep in…..worry and fear.
As a Mom, it’s my predisposition to worry. Every Mom worries. I suspect that some of my
worries and fears are similar to other Moms; like worrying when my kids are
sick, or worrying about a kid bullying them, or worrying if I am spending
enough time on priorities. There are
many common worries among Moms. But, as the Mom of two sons born with a genetic
cognitive disability, I know my worries and fears are somehow different.
When our sons were very young, I had plenty of time
to worry and obsess over a solution to many challenges we were facing at the
time due to the fact that our youngest didn’t sleep through the night until he
was 7 years old. I distinctly remember lying
awake at all hours of the night worrying that our sons would never do simple
little things like drink from a straw, or say their first words. Anything to do
with the mouth was a huge worry, as is the case with many kids affected by
Fragile X Syndrome.
Another worry was whether or not our sons be able to
participate in fun things or would their days be dictated solely by
appointments to therapists, doctors or structured learning?
I came across a reminder of that challenge with
Joe. It was a newspaper article written about the special-needs basketball team
that he and our older son did and still do play on. When this article was
written some 13 years ago, Joe had only recently even been able to participate
in certain aspects of the game. It took us two long years to get him to even
want to be a part of basketball and to help him want to play. These poignant
photos reflect his inner conflict that was so evident to us at the time….him
painstakingly going through the emotions of something that was bitterly
difficult for him, but at one moment he was able to turn and gaze lovingly up
into the stands to emulate a kiss to his Dad—such symbolism that still rings
true today in some of the life challenges he faces on a daily basis.
Then you had other worries and fears;
Would our sons ever be able to learn, grow and be
successful members of their community?
Would our sons ever have joy?
Would behaviors be the only thing that people saw
when they looked at or met our sons? Would those behaviors keep them from
living a full life? Would behaviors always be a part of their life?
Without verbal language, would our sons be able to
have friends or relationships, or even communicate their needs?
And finally, the worry that plagues every single
parent of a child with a disability….who will love them when I am gone? Who
will care for them when I can no longer do it? That’s a doozy. That’s the thing
that keeps many, many people awake night after night after night with seemingly
no answer.
When my sons, now 27 and 29 years old, were young, I
didn’t choose to enjoy the peaceful
quiet of the night, I was forced to lay awake waiting for the next need to
arise. This seemed to reaffirm my theory that
nighttime was the best time to solve all of the world’s problems. That is…until
I learned to admonish those worries and fears and shift my thoughts to
problem-solving mode.
At my core, I consider myself to be a very
analytical person with a robust desire to think things through rationally then
come up with a plan to resolve whatever is plaguing my thoughts. That doesn’t mean that my strong Motherly
instincts didn’t keep me from years of allowing those wicked worries and fears
to stifle my sleep until I could rationalize my thoughts. This core desire is what lead me to find
people that could help me. There is no way that I could continue the path of
sleep deprivation and still be able to be an effective Mother. No. Way.
I’ll go out on a limb and say that husbands and
Fathers don’t worry the exact same way as Mothers. At least my husband doesn’t. He is a “fixer”; a “doer”. He lies awake some
nights thinking about how he can fix a situation. He wants it resolved
lickety-split and he’s just the man to do it! Sometimes, he thinks that if he
raises his voice loud enough that, like magic, the desired result will appear. With
our sons, the fact that it doesn’t materialize that way, can be quite
frustrating for him.
I know in my heart that worry is not productive unless you
act to resolve those worries—but, putting this philosophy in motion is much
harder.
Many years ago, my husband and I met some amazing
experts who took us under their wing and taught us things that saved more than
my (our) sleep. They taught us how to
problem-solve with a whole “tool box” full of methods and approaches that me
and my husband could apply to our sons. Do you know how empowering that kind of
knowledge can be? It’s life-changing.
They taught us specific things like calming and
coping, a method called “ready-not-ready”, video modeling, side dialogue and
many others that we could utilize whenever we needed to. Along with basic
therapies that incorporated speech and occupational therapy, they used a
combined approach to motivate our sons. As positive changes occurred, we found
ourselves more motivated than ever to want to learn more and to implement these methods in our everyday lives!
We had waited years to see smiles on our sons’
faces. They were able to be calm and focus on simple things that we had been
unsuccessful at engaging them in. It was magical.
The amazing ladies we are talking about are Tracy
Stackhouse and Sarah (“Mouse”) Scharfenaker and team at a one-of-a-kind Denver-based
non-profit called Developmental FX (DFX).
Every single day this team wakes up and gets to work changing the lives of
families all across the world! They have a very unique combined approach that
treats not only children (and adults), but the families as well. They help parents just like us to know
what to
do; to feel empowered and filled with the knowledge that we need to
help ourselves and our children. Do you have any idea what that kind of knowledge
is worth?????? We. Do! As a Mother of two significantly affected
sons with a challenging cognitive disability…I DO!
This kind of knowledge is the difference between worry
and action. I remember an evening many
years ago after the boys had gone to bed, we started to reminisce about the big
growth curse the boys were on.
I looked at my husband and said, “What do you think
about the idea that every single thing we have grieved about, every single
thing we have been fearful of, and every single worry we have had; it’s all
been about us?”
He looks at me like I have two heads and says, “What
do you mean?”
“I mean that, these boys were born with Fragile X
Syndrome. They do not know any difference. They do not know the fears we know.
They do not know worry the way we do. They only know what we project and what
we show them.” By now tears were streaming down my face.
I continued, “Look at what they are capable of if we
project confidence. Look at what is possible if we commit ourselves to teaching
them and helping them. Everything to this point has been about our own grief,
not about what they are capable of.”
This revelation has been the pinnacol in our
lifetime of learning and continues to drive us to want to know more. It keeps us searching for answers and
resolution to worries and fears that we face.
Some fears are ongoing and continue to show up at the top of the “to-do”
list—the resolution too scary for us to face, i.e., “who will love them
when we are gone?”. But, it must be done. An answer must be found,
eventually.
So, we continue to reach out to those amazing, dedicated,
Fragile X whispers called Developmental
FX to help us sleep peacefully at night and not allow those evil fears
to dominate our thoughts. That’s why I, personally, have dedicated the past 15
years of my life to helping them spread the word about the incredible work that
they do. It’s worth that much to me. I want every family I know to have the
same benefits that I have had.
*So, today I want to ask you to consider how much
this kind of peace is worth?
*Is it worth $10 or $20 or $100 to have THIS
organization continue to give peace to families?
*Consider a world without them…..
To have access to people who know what you are going through; to have a solution; to allow you
to help your own child; to help you see joy on your child’s face; to give you
as a parent the confidence to deal with just about everything that comes your
way, or to be able to call when you can’t….this is what DFX does. That’s what
they have done for us.
Today, we feel like we have the basis of knowledge
to be able to cope with whatever fear comes our way, whatever challenge comes
our way, whatever life throws at us
…..it’s a good thing because 5:30 a.m. comes early
and quick.
To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers
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