His Name is Blake
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| Rhyse and Maggey |
I am Maggey’s Mom. Blake is 8. My daughter is 8. Blake has
Williams Syndrome. My daughters’ brother, Rhyse, has Noonan
Syndrome.
The Blake stories began a year ago, in second
grade.
“Mom, I helped Blake down the slide today”, she would say.
““Mom, Blake was scared he was going to fall off the balance beam so I walked
next to him and kept telling him, “I’m here to help you, Blake. You can
do it.”” “On the swings Blake likes to go really high so I start him out with a
big push”, she says. “”He also likes to pretend to sneeze so I run back and
forth at him and say, “I’m the fake sneezing monster” just to make him laugh
and laugh and feel good about himself.””
As you can imagine, at recess Blake is too often subject to
bullying by the boys. If Maggey hears anyone making fun of him she tells
them, “don’t say those words cause it makes Blake want to cry and feel bad
inside.” And after recess she likes to protect him, escorting him to class via
the elevator because she knows the steps to the second floor are too much for
him.
Maggey knows he’s afraid of the dark. When the classroom goes
dark for a science experiment Maggey is always on the scene to reassure
him--she is his comfort zone.
My son, Rhyse, was born three and a half years ago. His entrance
into the world, like so many others with a syndrome, was nothing short of life
changing. In the early days of NICU I would come home from 10 to 12 hours
of rocking Rhyse in a crazy patterned, stiff rocker only to collapse in tears
by my bed. Every night. Looking back I wish I was stronger, that I
could have “put on my big girl panties” and braved the abyss of scary emotions
with valor. But I didn’t. And every night my daughter, Maggey,
would ask, “are you going to cry again tonight, mom?” And I would say,
“yes.” And then Maggey would ask, “why?” And I would say, “because
I had to leave my son in the hospital, and I love him like I love you.”
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| Rhyse and Maggey |
Throughout the past three and a half years my two daughters have
stood by and watched their brother endure all sorts of tests, sick nesses,
hospitalizations, and surgeries. And the mountain of diagnoses just
doesn’t end. Yet through it all they, too, have changed on the inside.
Often times we parents talk about how much our journey with our
kids’ challenges changes us on the inside. But I can’t see those changes
in me as well as I can see the changes in my older kids.
Many, many times Leah and Maggey have woken up only to find
Rhyse and I gone—making yet another midnight run to the ER. And it’s
traumatizing for them.
My girls feel lonely when I’m gone for hours, much less days at
a time, camped out in the hospital room--again. They feel left out
because of the massive amounts of attention their medically complex brother
demands, on top of the typical demands of a toddler. They watch in envy
as Rhyse acquires yet another gift (of distraction) on sedation days, or any
time he is hospitalized. And they don’t realize those gifts (another toy
car) are not a celebration or reward, but a small dose of feel good therapy on
an otherwise terrible day.
Kids can’t process emotions like adults. They feel the
same trauma, but they cannot understand outcomes. When I’m in the ER with
Rhyse I know the protocol. I know that when he’s stable we will go
home. I know that what labs will be run, and what results will require
admission. I know what levels of potassium, magnesium and chloride are
considered dangerously low, and what his “safe” range is for platelets,
hemoglobin and red blood cells. But my kids just know mom is gone again,
and Rhyse is sick and afraid and wants to come home.
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| Leah |
Leah and Maggey and Rhyse are siblings. They love each other
immensely, and have the kind of bond not always seen between brother and
sister. Leah, 12, knows how to distract by being her silliest, and making
Rhyse laugh with a laughter unheard at any other time. And
Maggey(8)—Rhyse’s second mom-- has learned the art of
nurturing him in a way that directly mimics me. She has endless patience
with him, at least most of the time! Rhyse depends on her to hold his
hand through his daily GHT shots, and be his stronghold when he’s scared of a
barking dog, or a loud thunder boom.
Having
a brother with Noonan Syndrome has, indeed, changed us all. But for my
daughters the journey has started young. And I’m so proud of how their
journey seems to have created in them a sense of knowing for others who are
different, who are in school one day and gone the next, who will never fit into
the mainstream—as we like to call it.
Blake loves Maggey for being his comfort when he’s scared, his
safety from falling, and his guard from the bullies on the playground—even
though he himself cannot express these things. I see him nearly every day
as he’s being walked to and from classrooms, or out to the parking lot to meet
his mom after school.
Maggey has found discernment and compassion and the ability to
speak up for those who cannot speak up for themselves. And every single
time I see Blake he asks, “are you Maggey’s mom?” And I smile and say,
“yes, I am.”
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