Author: Ana Camelo Jackson

Anabella:

This blog is about our journey with Eliana, and you are an indispensable part of it.

You came into our family to balance our lives.

We have a lot of hard days, days were we feel sad and overwhelmed because sometimes we don’t know how to help Eliana, sometimes the answers are not clear and it’s a very lonely road, but you have managed to make us laugh every single day (even the hard ones).

Watching you grow has been one of the most amazing things I’ve experienced. I LOVE your personality.

To be more specific:

I love your sense of humor.

I love how caring you are, specially with Eliana. When she is sad you get really upset.The other day she was crying cause she was in pain, and you came and kissed her head and told her it was going to be ok, it was very hard not to break into tears, you make me SO PROUD.

You cheer for her when she takes her medicine (cause she hates doing so). You are always making sure she’s ok, you give her a hug every night.

Today is your birthday and you got a basketball set from your Godmother, you went and put the ball inside the basket and then said “Eliana’s turn” even though Eliana was in therapy and not with us, this is an example of how you are constantly thinking about her even when you’re not together.

You are also Eliana’s favorite person, NO ONE makes her laugh as much as you do, and when she is scared and your dad and I can’t seem to comfort her, you can, you always make her feel safe and she loves you beyond measure.

You are so kind and have a heart of gold, I love seeing pictures of you from school and sometimes in the background you are helping out/playing with one of your friends with different needs, and I will say it again YOU MAKE ME SO PROUD.

I love that you like dinosaurs and that your favorite color is brown. I love how sassy you are, you don’t like dresses but you can’t leave the house without a bow.

I love your obsession with apple sauce and how much you like eating.

At night when I am getting you ready for bedtime, there’s a moment were you are standing in front of me while I’m putting your PJ’s on, our eyes meet but we don’t say anything to each other, and it’s my favorite part of the day, looking into those big pretty eyes and trying to take it all in, cause you’re growing so fast. I love the big hugs you give me before you go to sleep and how you tell me every single night to sleep well and how much you love me.

In our meeting with your teacher she told us that you were so secure and knew how much you are worth and you don’t let anyone else make you feel otherwise and it made me cry so much… I hope you always feel that way, I hope no friend or loved one or anyone in this world changes that, I hope you always know how incredible you are.

You have such a good personality balance because even though you walk into every room like you own it, you are still humble and sweet and kind, and you don’t feel you are better than anyone else, and thats something that most adults can’t seem to understand.

You are so passionate and full of life, you love dancing and singing, and I know no matter what you decide you want to be when you grow up, weather it’s a scientist, or a teacher, an artist, an engineer, a dancer or a stay home mom you’ll be AMAZING you have a fire inside of you and I hope I am lucky enough to be able to presence the wonderful things you’ll do.

You have impacted my life more than what you can imagine, and if I was asked today, who would I want to be like, the answer would be YOU.

I want to be fearless, I want to laugh and dance more, I want to be as kind and loving and caring, I want to be as original and unique as you are.

I hope you read this some day, and it reminds you how wonderful you are, because you remind me every day how wonderful life is.

I love you so much. Never forget that.

Anabella:

Este blog es sobre nuestro trayecto con Eliana, y tu es una parte indispensable de él.

Viniste a nuestra familia para equilibrar nuestras vidas.

Tenemos muchos días difíciles, días en que nos sentimos tristes y abrumados porque a veces no sabemos cómo ayudar a Eliana, a veces las respuestas no son claras y es un camino muy solitario, pero has logrado que nos riamos todos y cada uno día de nuestros días  (incluso los más difíciles).

Verte crecer ha sido una de las cosas más increíbles que he experimentado. Me encanta tu personalidad.

Para ser más especifica:

Amo tu sentido del humor.

Me encanta cómo te preocupas, especialmente por Eliana. Cuando está triste, te preocupas mucho. El otro día lloraba porque sentía mucho dolor, y viniste y le besaste la cabeza y le dijiste que todo iba a estar bien, fue muy difícil no llorar, me siento TAN ORGULLOSA DE TI.

La animas cuando toma su medicina (porque odia hacerlo). Siempre te estás asegurando de que esté bien, le das un abrazo todas las noches.

Hoy es tu cumpleaños y tu madrina te regalo una canasta de basketball, fuiste y metiste la pelota dentro de la canasta y luego dijiste “Sigue Eliana” aunque Eliana estaba en terapia y no con nosotros, este es un ejemplo de cómo estás constantemente pensando en ella incluso cuando no están juntas.

Eres la persona favorita de Eliana, NADIE la hace reír tanto como tu. Y cuando esta asustada hay veces que ni tu papá ni yo la podemos consolar, pero tu siempre logras hacerlo, la haces sentir a salvo y te ama TANTO.

Eres tan tierna y tienes un corazón de oro, me encanta ver fotos de la escuela sobre todo cuando estas en en el fondo de estas estas ayudando / jugando con uno de tus amigos con discapacidad, y lo diré de nuevo ME LLENAS DE ORGULLO .

Me encanta que te gusten los dinosaurios y que tu color favorito sea el café. Me encanta lo atrevida que eres, no te gustan los vestidos, pero no puedes salir de la casa sin moño.

Por la noche, cuando estas por ir a la cama, hay un momento en que estás frente a mí mientras te pongo tus pijamas, nuestros ojos se encuentran pero no nos decimos nada, y es mi parte favorita del día, mirar esos ojos grandes y hermosos tratando de grabar en mi memoria estos momentos porque estás creciendo tan rápido.

Me encantan los grandes abrazos que me das antes de irte a dormir y cómo me dices todas las noches “que duermas bien” y cuánto me amas.

En nuestra reunión con tu maestra,  nos dijo que eras una niña muy segura de si misma y sabes cuánto vales y no permites que nadie te haga sentir de otra manera y eso me hizo llorar tanto … Espero que siempre te sientas de esa manera , Espero que ningún amigo o ser querido o alguien en este mundo cambie eso, espero que siempre sepas lo increíble que eres.

Tienes el perfecto equilibrio en personalidad porque, aunque eres muy segura de ti misma y sabes que eres espectacular, sigues siendo humilde, dulce y amable, y no sientes que eres mejor que nadie, y eso es algo que la mayoría de los adultos todavía no podemos lograr, todo el tiempo compitiendo con los demás en vez de simplemente brillar sin preocuparnos de comparaciones.

Eres tan apasionada y llena de vida, te encanta bailar y cantar, y sé que no importa lo que decidas ser cuando crezcas, si una científica, una maestra, una artista, una ingeniera, un bailarina o  una madre de familia serás INCREÍBLE y espero tener la suerte de poder presenciar las cosas maravillosas que harás en tu vida.

Has impactado mi vida más de lo que te puedes imaginar, y si hoy me preguntaran como quien me gustaría ser, la respuesta sería como TÚ.

Quiero ser más relajada, quiero reír y bailar más, quiero ser tan amable y cariñosa y afectuosa, quiero ser tan original y única como tú.

Espero que leas esto algún día, y te recuerde lo maravillosa que eres, porque tu me recuerdas todos los días lo maravillosa que es la vida.

Te amo con todo mi corazón. Nunca lo olvides.

I was looking at my phone when an old photo of Ryan, Eliana and me popped up, and the words “On this day” were written on it.

I recognized it immediately, it is a day I will never forget.

We where at a wedding, and we had already gone to the geneticist and were just waiting for the results of the Karyotype (this was on a Saturday and we got the results on a Monday)

I remember SO VIVIDLY how I felt while I danced with Ryan and Eliana, my heart was aching so much because I knew we were getting the results soon, and quite honestly I was terrified that they wouldn’t be what I had been hoping for and therefore our life would take a very painful and unexpected turn.

I wanted to hold on as tight as possible to that last hope that the results would come out normal.

I hadn’t had the courage to listen to the song we danced that day again. Music has always transported me to stages of my life and I just couldn’t bring myself to look back on that Saturday, because I just missed having that hope and it just seemed painful to re-live.

But today I listened to it. I cried (a lot), I closed my eyes and there I was, on the dance floor, dancing with my (incredible) husband and my sweet 3 month old baby.

I had never paid attention to the lyrics of the song before, but they just seem so perfect today.

“Heart beats fast
Colors and promises
How to be brave
How can I love when I’m afraid to fall
But watching you stand alone
All of my doubt, suddenly goes away somehow”

“Time stands still
Beauty in all she is
I will be brave
I will not let anything, take away
What’s standing in front of me
Every breath, every hour has come to this”

I WILL BE BRAVE, I WILL NOT LET ANYTHING, TAKE AWAY WHAT’S STANDING IN FRONT OF ME, and what’s in front of me today is a beautiful, kind, affectionate 3 year old who has stolen my heart and has made me want to be a better person every day, and although our life is very different from what we thought it is still so wonderful and that is all that matters.

Estaba viendo mi teléfono cuando apareció una foto de Ryan, Eliana y yo, las palabras “En este día” estaban escritas sobre ella.

Lo reconocí de inmediato, es un día que nunca olvidaré.

Asistimos a una boda, y ya habíamos ido al genetista por lo que estábamos esperando los resultados del cariotipo (esto fue un sábado y obtuvimos los resultados un lunes)

Recuerdo TAN VIVIDAMENTE cómo me sentía mientras bailaba con Ryan y Eliana, me dolía el corazón porque sabía que pronto tendríamos los resultados, y honestamente estaba aterrorizada de que no fueran lo que había estado esperando y que nuestra vida estaba a punto de tomar un giro inesperado y doloroso.

Quería aferrarme lo más posible a la última esperanza de que los resultados saldrían normales.

No había tenido el valor de escuchar la canción que bailamos ese día otra vez. La música siempre me ha transportado a etapas de mi vida y simplemente no quería pensar en ese sábado, porque echaba de menos tener esa esperanza y me parecía doloroso volver a vivir ese día.

Pero hoy lo escuché. Lloré (mucho), cerré los ojos y allí estaba, en la pista de baile, bailando con mi (increíble) esposo y mi dulce bebé de 3 meses.

Nunca le había puesto atención a la letra de la canción, pero hoy parecen tan perfectas las palabras de èsta.

“Corazón late rápido
Colores y promesas
Cómo ser valiente
¿Cómo puedo amar cuando tengo miedo de caerme?
pero viendo que estas sola
Toda mi duda de repente desaparece de alguna manera”

“El tiempo se detiene
Bella es todo lo que ella es
Seré valiente
No dejaré que nada me quite
Lo que está frente a mí
Cada aliento, cada hora ha llegado a esto ”

SERÉ VALIENTE, NO DEJARÉ QUE NADA ME QUITE LO QUE ESTÁ FRENTE A MI, y lo que tengo frente a mí hoy es una niña hermosa, dulce y cariñosa de 3 años, que me ha robado el corazón y me ha hecho querer ser una una mejor persona todos los días, y aunque nuestra vida es muy diferente a la que imaginamos que seria, es maravillosa y eso es todo lo que importa.

Every parent that has a child with disabilities, whether physical or intelectual, goes through different things and emotions.

But there is one feeling we all have in common : Loneliness.

At the beginning, when your child gets diagnosed, you get many calls, texts and visits. But as time goes by, all that disappears, as if what you are going through just goes away and it’s not a constant struggle.

Even when you know other moms with kids with disabilities, everyone’s schedule is crazy, so you don’t see each other frequently. Your friends who would invite you to playdates or the park stop calling because 99% of the time you tell them you can’t go, because you have to see so many specialists + therapies. But it still hurts.

Doctors (at least in Eliana’s case) don’t seem to know much and it’s more like a guessing game.

So it’s impossible not to feel lonely.

That’s why I want to write about the Rise School of Austin.

I would like to start by saying that I think their logo (the sun) is PERFECT, because that’s what Rise feels to me, like the warmth and happiness the sun brings.

In the mist of sadness and loneliness we found this AMAZING school that has given us so much.

As parents it has taken away that feeling of being lonely because they really care. They care about Eliana, about her development, about her feelings and about us.

A couple of weeks ago we had a meeting with Eliana’s lead teacher and her PT, OT, ST and Music Therapist (from school) and we talked about her and about her goals. To have such an amazing group of professionals working with us just made my heart SO HAPPY. They were so genuine in their interest to help Eliana achieve her biggest potential.

That same morning I had received her latest OT evaluation and I was given a piece of paper with an enormous list of things Eliana couldn’t do. It’s pretty hard to read those. When I arrived to Rise I had to stay in the car for a little bit and catch my breath because I was just feeling very sad.

But when I walked into the Rise meeting it was such a different experience. Her evaluations said all the things SHE COULD DO and instead of writing down the things she couldn’t do they wrote: “ELIANA IS READY TO.” It made a big difference. Words are powerful and this wonderful group of people know that. They take care of every single detail to make you feel cared for .

Everyone is so nice. I adore all of my girls’ teachers, therapists, the directors, and Kori on the front desk. They are just such wonderful people and I know they really care, and they are trying to change the way we see disability.

Eliana is in amazing hands, and I feel so blessed that we found out about this school through her developmental pediatrician. She LOVES going to Rise. She’s made amazing friends and her development has bloomed so much thanks to all the efforts her teachers and therapists make.

But not only has this school been amazing for us as parents and for Eliana. Anabella’s life has been enriched so much from it too. I love how she cares about all of her friends. I love that she is not even one and a half and she already has a sense of empathy and such a kind heart. But most of all, I LOVE that she doesn’t see her friends differently. To her all of them are fun to be around. She won’t have to change her mind about disability because she doesn’t see it. She just sees wonderful kids her same age playing with her. And that’s such a beautiful gift.

Another thing I love about this school is how I see parents every day, some of them with kids that develop typically and some with kids with disabilities, and the way we look at each other. Not with pity — for me it’s the worst kind of look — but with a “you’ve got this!” look. Without saying anything, we say, “I know it’s hard but we are in this together.” It’s such a beautiful experience. I’ve had the chance to talk to some of the moms and I cannot explain how wonderful they are. I love absolutely everything this school has given us as a family.

Rise School is not a school for special needs children, it’s a school for EVERY KID and that’s a big difference. It’s a school where everyone’s lives will be enriched, were every child shines regardless of their abilities.

I don’t think my words do enough justice to the school.  So here is a video of a family I adore and goes to Rise:

If you would like to make a donation to this amazing school you can click here.

You can also follow them on Facebook, Twitter and Instagram.

I hadn’t written in a while because I wanted to keep this blog on a positive note and I was finding it very hard to do so.

As Eliana grows things keep getting tougher, we face new challenges every day and it’s just been really hard. On top of that there were hurricanes, fires and earthquakes and so much hate in the world, so much division and everything seemed to be spinning out of control.

I was feeling hopeless, there was a constant pain and pressure in my chest and I kept asking myself,  “What kind of world did I bring my daughters into?”

Never did I imagine that two toddlers would bring hope back to my life.

Their names are Ephie and Hilton. They are in Eliana’s classroom and they opened my eyes and showed me that there is still hope, and kindness and so much love.

A couple of weeks ago when I went to pick up Eliana from school she was wearing a neckless and I was told by one of the teachers that her friend Ephie had made it for her and she sent me the following pictures:

When I got to the car I broke down in tears. I realized that while yes, there are a lot of bad things happening in the world… There are also two year olds making necklaces for their friends and holding their bottle of water when they are thirsty:

I cried again when I saw this picture of Hilton and Eliana, it’s just so sweet and it spoke volumes to me.

We seem to think that in order to change the world we need to do big things, but it’s the small acts of kindness that make a difference.

Both Ephie and Hilton are typical learners, and they showed me that they see Eliana for what she is, a sweet and affectionate 2 year old.

And just like that, I was given hope.

I will be forever grateful to them, their parents who are raising them to be such wonderful human beings and The Rise School of Austin for providing an environment where every kid is loved and respected.

____________________________________________________________________________________________

Hace mucho tiempo que no escribía porque cuando comencé este blog me prometí a mi misma siempre mantenerlo positivo, pero con todo lo que esta pasando en el mundo me parecía muy difícil mantenerme positiva.

Las cosas se han puesto mas difíciles últimamente ya que a medida que Eliana crece, también crecen los retos que enfrentamos y encima de eso parecía que el mundo se estaba acabando entre huracanes, terremotos, incendios, actos de terrorismo, y odio… En fin. Todo parecía estar mal.

No pude evitar perder la esperanza, sentía un dolor y presión en el pecho y me preguntaba, “¿a que clase de mundo traje a mis hijas?”

Nunca imagine que un par de niños serían los que me regresarían esa esperanza que parecía perdida.

Sus nombres son Ephie y Hilton, son compañeros de clase de Eliana y me hicieron abrir los ojos y darme cuenta que todavía hay esperanza, bondad y mucho amor en este mundo.

Hace un par de semanas cuando fui a recoger a Eliana a la escuela, traía puesto un collar y una de sus maestras me dijo que su amiga Ephie lo había hecho para Eliana y me mando las fotos que pueden ver en este escrito.

Cuando me subí al carro no pude evitar llorar. Me di cuenta que aunque si, hay muchas cosas malas pasando en este mundo, también hay pequeñas haciendo collares y niños deteniendo botes de agua para su amiga.

Lloré de nuevo cuando vi la foto de Hilton con Eliana, para mi esta foto dice TANTO.

Constantemente creemos que para cambiar al mundo necesitamos hacer cosas grandes, pero son los pequeños actos de bondad los que de verdad logran un cambio.

Tanto Ephie como Hilton tienen un desarrollo típico, y me mostraron que ellos ven a Eliana por lo que es, una niña cariñosa y tierna.

Y fue así como estos dos pequeños me regresaron la esperanza.

Siempre estaré agradecida con ellos, con sus papas quienes los están criando para ser unos seres humanos maravillosos, y con su escuela Rise School of Austin, por proveer un ambiente en donde todos los niños independientemente de sus capacidades son amados y respetados.

Eliana’s baptism was a couple of weeks after she was diagnosed.

We went to Monterrey (Where I am from) to baptize her and had a party afterwards, were we enjoyed the company of our family and friends.

I asked everyone who was there to write a message with a wish for Eliana, and afterwards we would attach them to a ballon and send those messages to God.

As I walked around the tables I started to read some of the messages, I secretly wanted people to write things like “I wish you can walk” “I wish you can talk” but I kept reading “I want you to be happy” “I hope all your dreams come true” and I realized how wrong I was for wanting anything else other than that.

You see, there are people who have all of their chromosomes, but they are not happy. They can walk, they can communicate, but they live sad lives.

Happiness is not the result of having all of your chromosomes, or being in perfect health or not facing difficulties or having money.

Happiness in my opinion is being loved and having the capacity to love others.

So thank you to my family and friends for those wonderful wishes, and for making me realize that at the end of the day the most important thing is that she is always a happy girl.

I REALLY JUST WANT YOU TO BE HAPPY.

El bautizo de Eliana fue unas semanas después de que recibimos su diagnostico.

Tuvimos una fiesta en donde nos acompañaron nuestra familia y amigos.

Les pedi a todos los que asistieron que le escribieran un deseo a Eliana, el cual amarraríamos a un globo para mandarle todos esos mensajes a Dios.

Comencé a caminar entre las mesas, pensando como me gustaría que pidieran que Eliana pudiera caminar un día, que pudiera hablar… Pero me sorprendí al ver que todos los mensajes leían “Deseo que seas feliz” “Deseo que tus sueños se hagan realidad” y me di cuenta de lo mal que estaba en sólo pensar que cosas quería que lograra Eliana.

Hay personas que tienen todos sus cromosomas completos, y no son felices. Tienen todo el dinero del mundo, tienen la capacidad de comunicarse y caminar.. Tienen salud, pero aun teniendo todo esto no encuentran la felicidad.

La felicidad no es el resultado de tener nuestros cromosomas completos, ni tampoco de cuantas habilidades poseemos.

Para mi la felicidad consiste en ser amado, y tener la capacidad de amar a los demás.

Asi que gracias a mis amigos y familia, por desearle el mejor deseo del mundo a mi hija. Que sea feliz.

Por que eso es lo único que me importa Eliana, que siempre, SIEMPRE seas una niña feliz.

Te amo,

Mamá

A few years ago, I was a teacher for a girl named Sandra (she is a teenager now), and I had the fortune to get to know her whole family. Her mom is one of the loveliest people I’ve ever met in my life. She teaches Thanatology courses and helps families who lose their loved ones. I also met Sandra’s dad and brother who marked my life forever.

Memo was diagnosed with cancer in the bones a few months before Eliana was diagnosed with CDC. When Memo found out about Eliana he immediately let me know through his mom that he would be praying for her. It honestly surprised me so much since he was going through something so hard especially for someone his age, and that he would have the capacity in his heart to think of someone else in the midst of his own pain impacted me profoundly.

When we received the diagnose, I must confess that I was very angry, I did not want to pray, I did not know what to say, I just wanted to cry. Ryan opened a C.S. Lewis book and asked me to read a chapter that he thought would help me deal with my feelings. I started reading it explained how we are hypocritical at times and we tell others who are going through hard times to have Faith, to trust God, but in the moment that life hits us we get angry with God and we lose it. How easy it is to say these words, but will we follow that same advice when we are the ones who are suffering? For me, Memo was a living example of true Faith just like his mom. She, who had dedicated her life to help other people who lose their loved ones, didn’t lose Faith neither did she get angry at God when she found herself in that same situation, she didn’t stop praying, she didn’t stop believing.

Up to this day I cannot understand how a 16-year-old young man who had all his life ahead of him was able to have this attitude in the middle of adversity. How was he able to offer his pain and fear for my daughter to be well? That is the reason for the title of this post; Memo was Eliana’s angel on this earth and now sees her from Heaven where he is enjoying the presence of God.

I don’t have words to thank all of the people who have prayed for her, but with Memo and his family my debt is greater, because I think that their prayers had a large impact in Eliana’s life. How do you the deny the prayer of a young man who in the midst of his pain, fear and confusion had the greatness of thinking about my pain and my family’s pain?

Thank you Memo, as I write this I can’t help the tears in my eyes because Eliana is doing so well and you had a lot to do with that.

Thanks to your family for making sure my family was doing ok even though you were all going through your own storm. Thank you for teaching me with YOUR EXAMPLE that you don’t only have Faith when things are going well but ALWAYS.

When Eliana accomplishes things that the doctors said she would never achieve I look up and think of you. We were very lucky to have crossed paths with you and your beautiful family. And though I will never be able to repay you or them for the support that they’ve given me, I promise to follow your example and have Faith even in the hardest times. Above all, I promise that regardless of what I might be going through at the time, I will always have space in my heart to pray not only for my own family, but for all of those who are suffering as well.

Hace algunos años fui maestra de una niña (Ahora adolescente) llamada Sandra, y tuve la fortuna de conocer a toda su familia.

Su mamá es una de las personas mas hermosas que he conocido en mi vida. Ella da cursos de tanatología y apoya a las familias que pierden seres queridos. También conocí a su papá y a su hermano Memo quien marco mi vida para siempre.

A Memo le diagnosticaron cáncer en los huesos unos meses antes de que a Eliana la diagnosticaran con CDC.

Cuando Memo se enteró de lo de Eliana inmediatamente me hizo saber por medio de su mamá que estaría rezando por ella. Honestamente me sorprendió muchísimo pues el estaba pasando por algo tan difícil sobre todo para alguien de su edad, y que tuviera en su corazón esa capacidad de pensar en alguien más en medio de su dolor causo un gran impacto en mi.

Cuando recibimos el diagnostico debo de confesar que estaba muy enojada, no quería rezar, no sabia que decir, solo quería llorar. Ryan abrió un libro de C.S. Lewis y me dijo que leyera algunas páginas. Comencé a leerlo y explicaba como a veces somos hipócritas y le decimos a los demás que pasan por situaciones difíciles que tengan Fe, que confíen en Dios, pero en el momento en que la vida nos da un golpe a nosotros nos enojamos con Dios y perdemos la Fe. Pues si, que fácil es decir esas palabras…. ¿Pero vamos a seguir ese consejo nosotros mismos cuando nos toque sufrir?

Para mi Memo es un vivo ejemplo de verdadera Fe al igual que su mamá. Ella dedicando su vida a ayudar a personas que pierden seres queridos no perdió la Fe ni se enojo con Dios cuando se encontró en esa situación ella misma, no dejo de orar, no dejo de creer.

Es fecha que no logro entender como un joven de 16 años quien tenia toda su vida por delante, pudo tener esa actitud ante la adversidad. Como pudo ofrecer su dolor y su miedo por mi hija para que ella estuviera bien.

Por eso el titulo de este escrito, Memo fue el ángel de Eliana en la tierra y ahora la ve desde el Cielo en donde goza de la presencia de Dios.

Yo no tengo palabras para agradecer a todas las personas que han rezado por ella, pero con Memo y su familia mi deuda es grande, por que pienso que sus oraciones tuvieron un impacto muy grande en la vida de Eliana, ¿Como negarle una petición a un joven que en medio de el dolor, miedo y confusion tuvo la grandeza de pensar en mi dolor y el de mi familia?

Gracias Memo, mientras escribo esto no puedo evitar que se me escurran las lágrimas pues Eliana va muy bien, y tu tienes mucho que ver con eso. Gracias a tu familia por estar al pendiente de la mía a pesar de que estaban pasando por su propia tormenta.

Gracias por enseñarme CON TU EJEMPLO que no se tiene Fe solo cuando las cosas están bien si no SIEMPRE.

Cuando Eliana logra cosas, que los doctores nos dijeron que jamas lograría, veo hacia arriba y pienso en ti.

Que afortunados somos de habernos cruzado en el camino contigo y tu hermosa familia. Y aunque jamás podré pagarte ni a ti ni a ellos el apoyo que me han dado, prometo seguir tu ejemplo y tener Fe aun en los momentos difíciles, pero sobre todo, prometo que independientemente por lo que este pasando en ese momento tener siempre espacio en mi corazón para pedir no solo por nosotros, si no por todos los que sufren.

My dad and I have always had some sort of special connection. He always knows what’s going on in my heart and my life, even when I don’t say anything.

The story I am about to share happened when I was 18 years old. (I remember it as if it was yesterday.)

It was a Sunday afternoon and I was talking to my mom in the kitchen, he walked in and out of the blue asked me if I wanted to go on a walk with him. I said yes, put on my tennis shoes and we headed out.

The house we used to live in was in front of a huge mountain, we started walking towards it and I was feeling a little confused but I just kept walking by his side… We started talking about all sorts of stuff and then we got to the mountain.

We started going up, and kept talking.. I’ve never been someone who exercises regularly so maybe 40min – an hour after we started climbing my face was all red and my legs were shaking uncontrollably.

I sat down on a rock and started crying and told him I couldn’t keep going.

To my surprise he told me “This is exactly what I was waiting for”. I felt really confused…

Then he said with an affectionate tone “Life is like a mountain, and if every time it gets hard you sit down and cry you are never going to get to the mountaintop, you need to just keep walking even when you feel your legs are shaking, so tell me when you are ready to start climbing again” I wiped off the tears my face and told him I was ready and we kept going and going and we continued taking about how you have to go through life with your head up, no matter the circumstances. I don’t even know where did I get strength from, but I remember when we came back home I laid on the floor without being able to move for hours, and although I felt a lot of physical pain emotionally it felt really good.

I constantly ask myself, did he know I was going to face a huge mountain later in life? Did he know deep inside I was going to have a special needs child and that’s why he took me there?

I don’t know.

What I do know is that last week I felt overwhelmed cause sometimes reality hits me like a ton of bricks and I just feel like sitting down and crying, and then I remember this story.

So now, thanks to my dad sometimes I might have to stop just to take a deep breath but NEVER to sit down and cry.

I love you dad.

Mi papá y yo siempre hemos tenido una conexión especial. Siempre sabe que esta sucediendo en mi corazón y en mi vida, aunque yo no le diga nada.

Esta historia que estoy por compartir sucedió cuando tenia al rededor de 18 años. (Aunque la recuerdo como si hubiera sido ayer)

Era un Domingo cualquiera, y me encontraba en la cocina platicando con mi mamá, mi papá entro y de la nada me pregunto que si quería ir a caminar con él. Le dije que si, me puse los tennis y salimos.

La casa en la que solíamos vivir se encontraba en frente de una enorme montaña, comenzamos a caminar hacia ella y me encontraba un poco confundida pero continue caminando a su lado mientras platicábamos de muchas cosas.

De pronto nos encontrábamos frente a la montaña y sin decirme nada comenzó a escalarla y yo junto con él.

Nunca he sido alguien que haga ejercicio con frecuencia, y a los 40min-1hr de escalar mis piernas comenzaron a temblar sin control y mi cara estaba sudada y roja.

Me senté en una piedra y comencé a llorar, no podia mas del cansancio.

Mi papá con un tono afectuoso me dijo : “Estaba esperando a que hicieras esto”. Me sentí muy confundida. Después continuo “La vida es como una montaña, y si cada vez que enfrentes un problema te vas a sentar a llorar entonces nunca llegaras a la cima. Avísame cuando estés lista para seguir escalando”

Me limpie las lágrimas del rostro, me tomó de la mano, me ayudo a levantarme y seguimos escalando y hablando como la vida se enfrenta con la cabeza en alto sin importar las circunstancias.

Honestamente no se como continue, de verdad estaba exhausta. Cuando regresamos a la casa me acosté en el piso y me quede ahi horas, con un dolor físico muy fuerte pero con una satisfacción emocional indescriptible.

Y ahora constantemente me pregunto ¿Acaso el sabia que dentro de algunos años tendría que escalar una montaña enorme? Tal vez en su interior sabia que tendría una hija con necesidades especiales y por eso me llevo ahí…

No lo sé.

Lo que si se es que la semana pasada me sentí abrumada por que a veces la realidad me golpea y siento que ya no puedo más, pero después recuerdo esta historia.

Gracias a mi papá tal vez algunas veces necesite detenerme para respirar profundo y continuar pero JAMAS para sentarme a llorar.

Te amo papá.

Illustration by Ryan Kidd

https://www.behance.net/gallery/31554247/Mountain-Illustration

Today I would like to dedicate some words to my mom, who turned 60 today.

I guess I should start by saying she is such a loving and caring mother and grandmother.

Quite honestly, now that I am a mother myself, I appreciate everything she has done for me more than ever.

I have never known anyone that loves like my mom does. She has always loved my dad my sisters, my daughters and I unconditionally.

It has been so amazing to have someone in my life who has loved me regardless of anything. There have been moments in my life where I felt that I didn’t deserve love, but that didn’t matter to her, because her love doesn’t depend on anything.

Not long ago we went to get some snow cones together, I got a pink lemonade flavor, and she got a blue coconut. I tried hers and I told her I liked the flavor she picked way better and without hesitating she gave me her snow cone. I know it seems insignificant but my life is full of moments where she has sacrificed herself for me and my daughters, sometimes in small ways like exchanging snow cones, and sometimes big sacrifices where she has put herself in second place to make sure we are taken care of.

Having her, has given me so much stability, security, and strength. She has ALWAYS seen the best in me, and when I do something or say something out of character she says “Annie you are not like that” instead of calling me out for doing something wrong she reminds me of the goodness inside me and that’s what I love about her, she always lifts me up.

It has been crucial in my life to have a love like that, and I want my daughters to experience it as well.

Eliana and Anabella can’t do anything that would stop me from loving them. I don’t care what they are able or not able to do, it doesn’t matter if they love me back or they don’t, I will always love them, and if I can love them like that, it’s because somebody loved me that way first.

I love you mom.

Me gustaría dedicarle algunas palabras a mi mamá quien cumple años el día de hoy.

Creo que debo empezar por decir que es una mamá y abuela muy amorosa y consentidora.

Honestamente ahora que soy mamá aprecio mucho mas todo lo que ha hecho por mi a lo largo de mi vida.

Siempre nos ha amado a mis hermanas a mis hijas a mi papá y a mi incondicionalmente.

Ha sido maravilloso tener alguien en mi vida quien me ha amado independientemente de cualquier cosa. Ha habido momentos en los que sentí que no merecía amor, pero ella siempre me ha amado lo merezca o no.

No hace mucho fuimos a comprar unos raspados juntas, yo pedi el mío sabor limonada y ella sabor coco. Cuando me dio a probar el suyo le dije que ese sabor me había gustado mucho mas, y me lo dio sin pensarlo dos veces y ella se quedo con el mío, y aunque parezca insignificante mi vida esta llena de momentos así, algunos pequeños como ese instante, pero otros en donde ha echo grandes sacrificios por mi y mis hijas.

Tenerla me ha dado muchísima estabilidad, seguridad y fuerza.

Ella siempre ha visto lo mejor en mi, y cuando hago o digo algo que no debería me dice “Annie tu no eres así” en vez de criticarme o decirme que estoy mal me recuerda de la bondad que hay en mi y eso es algo que adoro de ella .

Tener a alguien que me ame así ha sido algo tan importante en mi vida que quiero que mis hijas lo viva también.

Eliana y Anabella no pueden hacer nada que haga que las deje de amar. No me importa que puedan o no puedan hacer. No importa si ellas me aman de regreso o no, siempre las voy a amar incondicionalmente. Y si las puedo amar así, es por que alguien me amo a mi así primero.

Te amo mamá.

On January 12, 2016 I received a message from Jessica who found my blog while researching about 5p- syndrome.

We started messaging each other pretty frequently, and quickly became friends.

I have never met her in person but I can say with confidence she is one of the sweetest persons I’ve known in my life.

We have shared a lot of things, moments of happiness and moments of distress…  I would message her when I was worried about Eliana, and she would do the same… We talked about specialists, about sleep issues and all those things that come with CDC.

A little over two months ago I received a message from her that broke my heart. Her daughter Monroe had been diagnosed with a very rare type of cancer and she had been admitted to the hospital.

Her friends and family started a movement called “Moving Mountains with Monroe” I have been amazed by the amount of people supporting this family, auctions were made, donations, prayers, gifts, events.. You call it.  So when you think about it, MONROE DID MOVE MOUNTAINS. 

All I had seen lately was people getting together just to hate on others, because of their political or religious views, against some minorities, etc.

But this sweet 10 month girl got people together to pray, to love, to help, she moved mountains, she made people forget about their differences because there was something more important than that, LOVE. I doubt anyone that got together and was part of this group was worried about what religion the other people follow, or what their political views were. They all had one thing in mind, and that was to help Monroe’s family get through this difficult situation.

Last night she went to Heaven, and I haven’t stopped thinking about her and her lovely mom for one second.  Tears have been pouring from my eyes all day wishing I could help her mom carry this pain.

I went through all the messages and pictures her mommy and I exchanged,  and it made me realize you don’t need to know someone in person to be able to love them with all your heart.

I am saddened by this loss, because it’s not a loss only for her family and friends, but the whole world.

I am glad that she was able to spend her last days and nights on Earth next to the person that loves her the most, her mom. Who would not sleep cause all she wanted to do is hold her baby close and see her sleep.

At just 10 months of age, she was able to bring more love into this world than most people do in their lifetime.

Thank you Monroe for all the beauty your brought into this world, I promise I will always stay close to your mom and your brother and sisters and will do everything I can to make sure they are ok till they meet with you again.

We will keep moving mountains on your name.

Rest in peace sweet angel.

If you wish to make a donation to help Monroe’s family please click on the following link:

https://www.gofundme.com/2g5r5es