Our New Normal
After a year of no "real"
sleep and dealing with new situations that arise every day, life wasn't just
day by day, it was minute by minute. Often
dealing with the frustration of a child who is unable to communicate is just
pure hell. The constant screaming shatters
any semblance of calm. Frequent breaks to
step away for relief are necessary to maintain a sense of mental tranquility.
I kept asking why He allowed this
to happen to my little boy. I was angry
at God. It is a horrible cycle of
frustration, anger, guilt, and depression.
Fortunately, I didn’t have the luxury of feeling bad for long because
auto pilot would kick in and remind me that I had to determine to get through
this and only God could help me do it.
I'm not just saying that because it sounds noble or because it is the
"Christian" thing to say. I
truly believe it. It's just the human
side of me forgets sometimes…ok...maybe a lot of the time. And then I come to my senses, and there He is just
waiting for me to depend on His strength.
I never knew how much patience is
needed to raise a special needs child. My
mother used to say, "Don't pray for patience, pray for
understanding." So I did. I was praying, asking God to help me understand
what it was I needed to do to get through this.
Looking back on Beckett's first year was an eye opener…I had learned
many small invaluable lessons of life. The
small things you do are really stepping stones to a livable and purposeful life. To this day I struggle with my purpose. I'm a proud mom of 5, a wife and a teacher, and
still it seems that life throws things at you that you never expected. In a flash, you can lose the focus of your responsibility
to a child who utterly dependent on you.
My purpose
changes daily. To keep up with my
child’s ever evolving needs, I am learning sign language, impersonating physical
and occupational therapists, and as a result I am far more in tune with the
everyday challenges of special needs people.
My compassion and empathy is foremost as I observe those who cannot do
for themselves the most menial task.
I tend to come back to a statement
that was told to me by a very wise seasoned educator I work for. As I described some of my daily struggles, she
said "Monica, God gives us a new normal on occasion, we must trust Him to
get us through it and find ways to modify." She was right, I keep changing and adjusting
to my "New Normal." Thinking
like that helps me get through the hard times and knowing that it's only
temporary helps because the next "New Normal" is just around the
corner. Beckett himself has a new normal
every day. Every milestone he makes is
his new normal. We are all on this road
together but his path is bumpier than mine.
The second year of Beckett's life
was full of uncertainty. He was now in therapy through ECI (Early Childhood
Intervention) and making small motor skills improvements. He began using a
walker that helps lower body muscles develop. His therapist, an ex-marine, with
a demeanor and motivation techniques that do wonders. He is a stubborn, bull headed little boy and a
bit spoiled. Sometimes I thought she was too tough, but I
understand that higher standards are necessary for him to aim towards. Just because he was slow, didn't mean he
couldn't learn. Repetitive commands and
hand-over-hand demonstrate just what he can do on his own.
With concerns about motor
development came concerns about cognitive development. He had an occupational therapist and a play
therapist who worked with him weekly.
They taught him to hold a cup, turn pages of a book, and to use a crayon
and other simple motor tasks. A normal toddler typically imitates behavior by
watching someone with a toy. Beckett was
not interested in toys or even in watching cartoons on television. Most of the time he wandered aimlessly
around. It seemed like he was in his own
world, indifferent to the physical world he actually inhabited. He was on a different level than typical
children. At least that is what my "gut" was telling me.
Before long we became concerned
about his ability to learn. Processing a
simple task took him a long time. Not
just minutes, but sometimes days of repetition.
To serve as an echo chamber, I would repeat the same word a hundred
times a day. As a result, I think I
dreamed about "more" and "juice" and "milk" for
months after. Frustrated and discouraged
I often wanted to quit. But God knew
what He was doing because just when I wanted to give up, relief came when
Beckett would make a sign or say a sound that was close to the word of the
moment. With effort, after his first two
years Beckett had retained about 5 words he signed or sounded.
This required another avenue of
cognitive investigation and so began online research and contact with cognitive
specialists. But no one had definite
answers. I struggled with the idea of
him not ever being a productive independent person in society. Who would take care of him if something should
happen to my husband or me. Would he be
dependent on my older children? Would my
extended family be able to provide the time and therapy he needed? I had to let go of those thoughts and believe
that God had a plan to take care of him and that I would be included in that
plan. With worries like these, depression
was a constant visitor. But thankfully
sadness was short-lived because my brilliant boy would do something unexpectedly
encouraging, which would signal a return to hope and promise. It was going to be ok.
Never will I forget an afternoon
that gave much-needed hope and renewed faith that God listens to prayers. One afternoon, off I went to pick up the
twins from daycare, and there was Beckett sitting looking outside the glass
door that led to the playground. He
turned and saw me walk in and smiled…a big smile. He pulled up on the door handle and took a
step. First one step, then another and then
another as he kept walking all the way across the room to me. I dropped to my knees, crying. I grabbed and hugged him so close. To see my little boy walking was
extraordinary. His teacher, Ms. Claudia,
also wept. Her sainted efforts were also
a part of the many people helping him. The news and excitement spread throughout the
building and all his former teachers came to see The Magnificent Walking Boy. He was progressing! After
months of prayers God had heeded the call.
Beckett was walking at 22 months, exactly two months before his 2nd
birthday. It was a moment of pure joy
that will forever live in my heart.
These glorious moments – precious
few and far between – keep me going when I feel the pull of despair.
The year Beckett turned two was the
most stressful since we learned of his handicapped milestones.
Our pediatrician referred Beckett
to the Blue Bird Clinic at Texas Children's Hospital to see another pediatric
neurologist. The doctor expedited an
appointment for us. Instead of the six-
to nine-month wait we were seen within three months. In the meantime, we kept chugging along,
going to therapy and working with him at home.
He was making very little progress and it seemed that new skills were
coming at a snail’s pace. At times I cried
myself to sleep. Some nights I would get
barely 3 or 4 hours of sleep and then work the next day running on fumes. The
emotional toll was also showing at home and at work. I needed answers! I was growing impatient with a simple answer
to our question that never came. When
will a doctor tell us what to expect in Beckett’s future.
At long last we got an appointment
to see a doctor at the Blue Bird Clinic.
It was a relief just to be in the waiting room. But that feeling soon faded into worry and
more anxiety. I showed up with my
husband, Beckett and Pyper, his twin in tow. We waited in an exam room with two chairs, a
patient table, and a computer. You try
keeping fussy 2-year-old twins occupied for 30 minutes in a sterile examination
room…I dare you. FINALLY a knock at the
door and a woman peeks in and introduces herself as the Physician's Assistant.
I was glad we were tended to, but disappointed it wasn't the Main Man neurologist.
I should be grateful but the
frustration of unanswered questions had gotten to me. After the introductions she was taking
detailed notes and making close observations of Beckett while he was itching to
get out of there. The anxiety level rose
as she recommended genetic testing and an MRI under sedation. Several genetic tests, I knew, were for rare
disorders that could cause a child to have fatal consequences or that would require
round-the-clock care for the rest of a child’s life. These tests were suggested merely to rule
them out. Because some of his symptoms
were associated with these disorders the question of affliction lingered, and
we needed to know one way or another.
The genetic test I feared most was Rhett’s test. This is a fatal genetic disorder that,
however mild, can reduce a victim’s life to 10 years. The other tests scheduled were for Fragile
-X, along with about 129 genetic metabolic disorders and a chromosomal
karyotype. Aside from a dreaded positive
result, my husband and I cringed at the thought of how much these tests were
going to run and the very real prospect that the insurance company would deny claims.
We waited almost 3 torturous months
for the genetic results to come back.
During this time I spent untold hours researching genetic disorders. I was looking for answers that never seemed
to come. I would cry at school and cry
at home praying for the tests to be normal. Meantime, we were still waiting to get a
MRI. Beckett was continuously sick with
a cold or ear infection. After 3 attempts
to get him an appointment at Texas Children's for an MRI, we succeeded. But I hated that day too. He had to be put under anesthesia for a
conclusive view of his brain. I myself almost
passed out when they gave him the drugs that put him under. My husband was holding him while they
administered the drugs. He fell limp,
which was painful to watch. It was a
successful scan and the results would be ready in 3 days. Again, 3 very long days.
That day finally came, the moment
of truth! We had the results of both the
genetic testing and the MRI. The PA
called and said all the genetic tests were all NORMAL! I felt my chest sigh in relief. The neurologist looked over Beckett’s records
and related some of the best news I’d had in a long time. He said that there was a discrepancy in his
MRI. He explained that the myelin, or white matter in his brain was at
50%. A typical 24-month-old has
approximately 90%. Myelin is the plastic
covering that insulates an electrical impulse wire. This disorder makes it
difficult for him to make connections.
My heart then fell again. The emotional roller coaster is exhausting. Hope then returned when the doctor said that
with extensive therapy and lots of patience, there is an 85% chance that Beckett
would be fully functional by the age of 6 or 7.
This mother dreams of that hopeful
prognosis every day. This is a potential
result I won’t forget and I pray that this time – this time – the doctor is
right.
We will see, because there are
changes every day, good and bad, but for now we choose to hold the most
positive light before us.
