Don’t stand so close to me
Jeremy, Jonah and I live in Brooklyn, NY, friends and family
are curious and worried about our situation here.
I don’t know that I feel any different than the rest of the
country. NY has been hit hard; we’ve lost more people to COVID then on 911. I
see the same news that you do and it’s true, the bodies are piling up. I often
take a walk through Greenwood Cemetery for the fresh air and serenity. There
are new graves being dug on a daily basis. I have walked by numerous services,
families standing in clumps 6 feet away from the next family. Shivering in the
cold and not able to comfort each other. The officiants voice barely audible to
those that can’t get close enough to hear. I keep my head down low, trying to
be invisible, thinking about the path that lead us to this point.
I take back my first sentence. I guess I do feel differently
than people in many parts of the country. I see and hear that not all counties
are responding to COVID with the sense of urgency that New Yorkers are. I hear from friends and family living in rural
areas that people are for the most part not afraid of COVID. Well you should
be. As of now I have three friends that have lost a parent to COVID. You might survive COVID, but the loved
one you spread it to might not.
It has been really hard working from home and trying to
adapt to a new schedule. Jonah thrives on routine; he thinks that since he’s
not at school that he should be watching t.v. all day. I have already seen a change in his speech.
He’s not enunciating his words as well; you can tell that not having speech
therapy has taken its toll. I worry excessively about how much he’ll decline
without school for 6 months. He is taking classes on zoom now with his
teachers. Jeremy sits side by side and helps Jonah to maintain a routine and
not lax on the homework.
I don’t have the words to articulate what Jonah’s
brain is like. He’s losing the concept of time; I stare hard into his eyes as
if I look hard enough, I can see into his brain. I listen to him ask me the
same question over and over and over again, at least 250 times a day he asks us
if he can watch. I tell him not until Friday, he asks well what is today? I say
it’s Tuesday, he responds is Tuesday today is today Friday? It is bloody
depressing.
He’s so serious when he asks, like it’s the first time he’s
asked. Jeremy writes out Jonah’s school schedule for him every day. Jonah is
actually getting better at telling time, but does he understand it… We tell him
Yoga doesn’t start until 9:00, he asks what time is it? I tell him to tell me,
he says it’s 8:45, I look and it’s 8:39, I’m so impressed that he’s that close!
He turns around and asks for his ‘talker’ so he can zoom with his class for
Yoga. Again, I say not for another 15min. This is when the frustration begins
and the aggression rears it’s ugly head. Jonah turns from Bruce Banner to the
Incredible Hulk, running at us pushing us up against the counter punching at
us. He runs back to the other room and throws the kitchen table chair. It takes
us 20 minutes to talk him down. I wish I can get into his head and patch up the
dendrites that aren’t passing the messages through his brain cells and out the other
side into a synaps (the message) to be caught by the next working brain cell.
It hurts so bad to see him struggle, Jeremy and I know the boy that is in his
soul, we can see him. We know Jonah can’t help himself, the Hulk controls a
part of his brain. It’s been really hard, the change in his routine has really
thrown him off. I want the Hulk out of his brain. The Hulk being a metaphor for
Sanfilippo.
Mari’s big brother Antonio is recovering from COVID. During
isolation, Antonio got to thinking about Jonah and all the people that suffer
from terminally ill diseases. All the attention on COVID and the scientists
furiously racing to create a vaccination. Antonio thought about the people who live like we
are now; but do so everyday of their lives. Antonio made a selfless gesture to turn his
struggle to recovery from COVID into a fundraiser to raise awareness for
Sanfilippo syndrome.
I’m frustrated and out of sorts, I have lost control over my
daily schedule, I want a change that will fit the times; one that will gratify
the rage that I am feeling. A new Tattoo is off the table.
I’m going to shave my head too! I’m going to shave it on May
5th, actually I’m going to let Jonah ‘attempt’ to shave it. He can
at least cut the ceremonial ribbon, in this case lock of hair.
May 5th is kismet timing. Mine and Jeremy’s anniversary
is May 5th, MPS awareness day is May 15th, Jonah was
diagnosed with MPS IIIC May 10th and Mother’s Day is on the 10th
this year too.
The Kismet part is that the powers that be have decided to
bring Giving Tuesday back NOW for the not-for-profits that are not receiving
the funding that they normally would during this depressing and unpredictable
time. Giving Tuesday is happening on MAY 5th.
The shaving will happen live on FB at 3:00pm Eastern time,
12:00 Pacific and 8:00pm for Europe.
BTW if you have ever loved a red head you will be close
enough to know how vain we are of our red hair. It’s our pride and joy, it
makes our day when someone says I love the color of your hair. Which they do
quite often, we all think to ourselves I know my hair is amazing. So, you know I
do not take this endeavor lightly. I’m a little nervous that I’ll feel ugly and
that will depress me even more. I’ll think about all the funds I raised for a
cure for Jonah and our good buddies. https://www.facebook.com/donate/222359589064057/
