So again we face the same stupidity, and the story goes on. Now our 3 year day nurse completed her WTF list with various no shows this week. We have been supportive and have tried to cope with her... being special. I mean, if you call then we know something is up and then we can handle things. Deedee's weekdays are not for play. Lesson learned: First Deedee then anyone else. We are so tired, so burned out, so everything.
I am very tired and frustrated and annoyed and sad. In our daily fights it would be nice to find at least some sympathy of other people besides the so-called professionals that come here. Asking for help, yeah, we do that to a limit... but it would be nice if any kind of help (even just calling to say hi) would happen out of other people's will. We feel drifting in a Twilight Zone, drifting away even further and further... Our daily life goes fast, months are going running through the calendar... seasons come and go... And we feel so sad deep inside... Sad because we feel forgotten. We try to make a happy life with what we have... but the loneliness is overwhelming. No friends and no family to come over and give a hug. No friends or family to come over read a book or poem to Deedee, or to help take Kali to eat some ice cream. No friend or family to come over and surprise us and share some memories on special days... We wish we could make memories for our girls, but it is very difficult when we have to deal with handling all the daily serious matters that go on behind the curtains (phone calls for follow ups, writing letters, searching for information for maintenance and improvement of Deirdre's life, searching for people who can help us get the tools she needs... Then searching for answers to OUR situation... how to work... how to move... how to find a place where to raise our kids AND where services for Dee are maintained...) Ugh! No one close by, not even an acquaintance, that would like to come be with us SINCERELY and just because... We have survived almost 4 years this way... It is taking its toll.
We are so tired! No one outside understands and can possibly imagine how tired we are... We must remain strong, and going... No thoughts about it, just doing. All has been about just doing. There is no stopping. There are no breaks. There is no respite, there is no real help. Always monitoring, always planning, always looking, always doing... There is no moment to stop and do nothing... there is no moment to enjoy the simple things in life as while we try to do so we also have to wrap ourselves around precautions and inconsistencies.
Yeah, we need a bigger place. Yes we need another set of hands to help us... We can't go beyond things right now, and we can only try to cope with what we have (period). It is frustrating and unnerving when people act without taking into account our life... what we have to face all the time, at all hours. We are so tired of people talking, bashing us, giving their frickin opinion and saying things as if we did not do all the callings and all the trying to get out of the hole. Especially since we do. I do. I am on top of EVERYTHING. The problem is... some things ARE a wait.. and a chance... and all is very uncertain. We are trying our best, but our best is not enough. We need another person to help us pick up our pieces but there is no one else...
The blah-blah of family... They are just names that can't help and or won't help. So many excuses not to be in touch with us... Everyone is afraid of our asking for money as money is all they seek... We don't want money. We want time. We want laughs. We want experiences. But no... This is the land of all work, time passing and no memories. Sad, very sad...
The blah-blah of friends... Truth is, the only friend who includes me daily in his life is Sti. Besides Sti, there are no longer any real friends, just ideas of friends. Everyone is so caught up with their little lives that they don't see what I need, what my family needs... Everyone gives opinions from far, staying far... and think that an email or message or phone call once every three-four months is enough to "keep the friendship alive". I am the afterthought. I am the one they think of when there are no other alternatives, or when they are really pissed at life, or when they need real advise... But I am no longer considered for anything fun, for a "just because". All my life I have been there through thick and thin for all who I consider my friends. No one besides Sti has returned that kindness.
Just like Garrig, I smile... I sigh... I go on... My heart smashed to pieces, my feelings deeply hurt. My soul feels like crying non stop, the loneliness feels so unbearable. But I put a sock on it, don't even start any tear, and go on facing each new because even if I don't have any motive for living, Deirdre needs me. And I can't do anything for her feeling as I do, and showing it.
Swallow hard... Live the life of the clown... Make other so happy, even if your heart drowns. No remedy for this... No cure for this sorrow. No end to this curse.
TO LAUGH WHILE CRYING by Juan de Dios Peza
Watching Garrik – an actor from England -
the people would say applauding:
“You are the funniest one on earth
and the happiest one…”
And the comedian would laugh.
Victims of melancholy, the highest lords,
during their darkest and heaviest nights
would go see the king of actors
and change their melancholy into roars of laughter.
Once, before a famous doctor,
came a man with eyes so somber:
“I suffer – he said -, an illness so horrible
as this paleness of my face”
“Nothing holds any enchantment or attractiveness;
I don’t care about my name or my fate
I die living an eternal melancholy
and my only hope is that of death”.
- Travel and distract yourself
- I’ve traveled so much!
- Search for readings
- I’ve read so much!
- Have a woman love you
- I am loved
- Get a title
- I was born a noble
- Might you be poor?
- I have riches
- Do you like compliments?
- I hear so many!
- What do you have as a family?
- My sadness
- Do you go to the cemeteries?
- Often, very often.
- Of your current life, do you have witnesses?
- Yes, but I don’t let them impose their burdens;
I call the dead my friends;
I call the living my executioners.
- It leaves me – added the doctor – perplexed
your illness and I must not scare you;
Take today this advise as a prescription
only watching Garrik you can be cured.
-Garrik?
-Yes, Garrik… The most indolent
and austere society anxiously seeks him;
everyone who sees him, dies of laughter;
he has an amazing artistic grace.
- And me? Will he make me laugh?
-Ah, yes, I swear it;
he and no one but him;
but… what disturbs you?
-So – said the patient –
I won’t be cured;
I am Garrik!
Change my prescription.
How many are there who, tired of life,
ill with pain, dead with tedium,
make others laugh as the suicidal actor,
without finding a remedy for their illness!
How often we laugh when we cry!
Nobody should trust the merriment of laughter,
because in those beings devoured by pain,
the soul groans when the face laughs!
If faith dies, if calm flees,
if our feet only step on thistles,
the tempest of the soul hurls to the face,
a sad lighting: a smile.
The carnival of the world is such a trickster,
that life is but a short masquerade;
here we learn to laugh with tears
and also to cry with laughter.
REÍR LLORANDOescrito por Juan de Dios Peza
Viendo a Garrick -actor de la Inglaterra-
el pueblo al aplaudirlo le decía:
“Eres el más gracioso de la tierra,
y más feliz…” y el cómico reía.
Víctimas del spleen, los altos lores
en sus noches más negras y pesadas,
iban a ver al rey de los actores,
y cambiaban su spleen en carcajadas.
Una vez, ante un médico famoso,
llegóse un hombre de mirar sombrío:
sufro -le dijo-, un mal tan espantoso
como esta palidez del rostro mío.
Nada me causa encanto ni atractivo;
no me importan mi nombre ni mi suerte;
en un eterno spleen muriendo vivo,
y es mi única pasión la de la muerte.
-Viajad y os distraeréis. -¡Tanto he viajado!
-Las lecturas buscad. -¡Tanto he leído!
-Que os ame una mujer. -¡Si soy amado!
-Un título adquirid. -¡Noble he nacido!
-¿Pobre seréis quizá? -Tengo riquezas.
-¿De lisonjas gustáis? -¡Tantas escucho!
-¿Qué tenéis de familia? -Mis tristezas.
-¿Vais a los cementerios? -Mucho… mucho.
-De vuestra vida actual ¿tenéis testigos?
-Sí, mas no dejo que me impongan yugos:
yo les llamo a los muertos mis amigos;
y les llamo a los vivos, mis verdugos.
Me deja -agrega el médico- perplejo
vuestro mal, y no debe acobardaros;
tomad hoy por receta este consejo
“Sólo viendo a Garrick podréis curaros”.
-¿A Garrik? -Sí, a Garrick… La más remisa
y austera sociedad le busca ansiosa;
todo aquel que lo ve muere de risa;
¡Tiene una gracia artística asombrosa!
-¿Y a mí me hará reír? -¡Ah! sí, os lo juro;
Él sí; nada más él; más… ¿qué os inquieta?
-Así -dijo el enfermo-, no me curo:
¡Yo soy Garrick!… Cambiadme la receta.
¡Cuántos hay que, cansados de la vida,
enfermos de pesar, muertos de tedio,
hacen reír como el actor suicida,
sin encontrar para su mal remedio!
¡Ay! ¡Cuántas veces al reír se llora!
¡Nadie en lo alegre de la risa fíe,
porque en los seres que el dolor devora
el alma llora cuando el rostro ríe!
Si se muere la fe, si huye la calma,
si sólo abrojos nuestra planta pisa,
lanza a la faz la tempestad del alma
un relámpago triste: la sonrisa.
El carnaval del mundo engaña tanto,
que las vidas son breves mascaradas;
aquí aprendemos a reír con llanto,
y también a llorar con carcajadas.
