Monday, July 26, 2010

1 day old Till Six month. My chunky Monkey


joshua's journey from yesenia castillo on Vimeo.

Sunday, July 25, 2010

One day at a time

so it has been in a bit since i have written, where have i been ? well i have been reflecting and meditating. if you have read my previous post you can obviously tell i have been through my all time deepest depression. I never thought my first son would pass away, and never thought, our life with him would have been spend in the NICU, and although six months in the NICU is a very long time, me and jonathan were used to it, it was our home, we would come home to sleep and that was about it, if you needed us all you had to do was call childrens hospital get transfered to the NICU and then asked to be transfered to joshua's room, there we were. The nurses became our friends, and the dr's became our friends, we would walk in scrub down and put our things into our locker with all the nurses walking past us saying "hello yesenia Hello jonathan we heard joshy had a good night" every person greeting us. When joshy passed away it was like our life did a 360, our home was gone, our baby was gone, our friends were gone. These past few weeks were spend for me, thinking back about the last few days of joshua's life, that wasn't my son, he had already started slipping away and was hanging on because of the love he felt for me and his dad. I know i will never feel okay with joshua's passing, EVER there will always be a whole in my heart that will never be filled, but every morning i wake up and in my nightstand is my keepsake box my preemie mom's got for me, inside all the letter's from his family his nurses his friends, his neonatologist. i look at it and it is a constant reminder that joshua's life was not in vein, i wont let it be, i want to spread awareness of NEC, i want to help NICU's i want more people to know that prematurity happens in 1 out of every 8 births, and last i want to become a NICU nurse. I spend the day last week reading back on every single one of my post and i read a passage were i had written how " this kid is going to be famous" well joshua, you are! So many people know about your story, and so many people were affected by your life, in a positive way. Each and every day is a struggle to get to know the new me, the mom of angel, the mom of joshua, but i think i finally am coming to peace with keeping your memory alive not by being depressed or crying everyday (yes i still do cry because i will never stop missing my monkey) but by remembering how you were so special, how you amazed all the dr's, how all the nurses loved you, how one tiny person caused such a BIG impact on so many lives.

Joshua, my angel, my king, you are and will always hold a big piece of my heart a piece you took with you the day you left, and a piece that you will return the day were reunited, what will you look like ? will you be just like i remember you, will you have beautiful big wings with a beautiful glowing halo ? will you be older ? for now i will keep your memory in my heart of you smiling and holding on to your monkey binky.

Friday, July 2, 2010

meet my new best friend "gateway"

Today is one of "those" days, the days where every little thing reminds me of joshy but in a sad way, those days where you want to hide in a rock and never come out. The days when i think when the heck is this going to get easier, all things are doing are getting more complicated and all i feel is more pain. My gateway computer has become my bestfriend, i can rely on her to be here for me to express myself and write about my feelings and she wont look at me like i should be in a ward.

I have been thinking about what to do with joshy's clothes. After all they were HIS clothes when i would order online or go to stores i would pick out the clothes just for him. I have had a couple of thoughts, thought 1. donate some of the clothes to the NICU, thought 2. make little gift bags for parents of boys in the nicu with a letter from joshua. thought 3. save the clothes for a future baby boy...........hmmm i dont know. How would joshy feel sharing his clothes with his brother ? he never was much of sharer he was spoiled and ALWAYS got what he wanted, ask the nurses. I guess for now they can stay in the plastic container kept away with all his other items like his crib which is still in a box in the garage, his bassinet still in a box in the garage. That's not including his NICU items that are at his grandparents house, they took them there the day he passed because they thought it would be to much for me to have them at home. I cant even think about going through all those items, his blankets, HE HAD A TON for those of you that have had a NICU long term baby you understand that sometimes the only way to make your baby's crib feel like HIS is giving him his own blankets. The nurses always joked that all the other babies were jealous of joshy because his mommy would decorate his crib the with every little detail, his sheets ALWAYS matched. he had his wall of pictures and his toys for every holiday that passed. My brother in laws (who's like my dad) grandma (who is like my grandma she's seen me grow up and i call her grandma_) has offered to make a quilt with all of joshy's clothes and blanky's but first i need to go through his things and i cant even do that yet.

So i know some angel mom's will understand me and some might not, and i know that "normal" people might not get me at all but here are my confessions.
I can't stand seeing babies, it makes me think about how unfair life is and why i couldn't have my joshy. I cant stand seeing pregnant women complaining about their pregnancy do they have any idea how LUCKY they are to have such a precious gift and your complaining about it! yuck. I confess that i have thought about suicide and i confess i was close to doing it,but i know well although im in a scuffle with GOD and my religion and am questioning everything about faith, i have taught i will not end up with my son but rather in limbo, thinking about NEVER seeing joshy makes the thoughts go away, they come back, but its a day by day. I confess that every second of my day is thinking about joshy, wishing that there were wishes and that joshy was here with me. and finally i confess that i feel guilty when i am having a good day with Jonathan or my family because i feel like i should feel shitty ALL the time, i feel like i made my baby go through hell by bieng poked and stabbed and messed around with because i wanted the dr's to do everything to save his life, but then i think im proud i was so involved with joshua's care, i was there all day asking the dr's questions looking up things on my own coming up with my own ideas of how joshy could get better, when i wasnt in the nicu i was re-searching what can the dr's do to help joshy. I confess that i MISS the NICU, i miss the nurses the staff the RT's although i spend some horrible times in there but it was HOME for six months and it taught me one thing, I think my calling is to be a nurse a NICU nurse to be more exact. hmmm interesting you would think i would never want to see the inside of a NICU again but everything seems so familiar so HOME, and i feel like i would have joshy next to me protecting the babies im helping.

you will and forever be the love of my life, yes daddy is my love, but YOU, you my angel are my heart you are my PRIDE, you made me such a proud mommy, you were such a perfect baby, all the nurses loved you and all the dr's did too. You had an energy about you that people were drawn too, they just wanted to hold you and be around you. I'm sorry for crying every day and sorry for maybe making you think your causing mommy so much pain, it's just that mommy LOVED you so much that she would of done anything to save you. Joshy i know your looking over dad and I but i hope your having fun if any baby deserves it YOU DO MY LOVE. i know you loved mommy A LOT i know that's why you held on FOR six month and gave the BEST fight any dr or nurse had seen in a long time. for that and for choosing me to be your mom i will forever be grateful and proud to say you ARE my son. How many mommy's get to have a son that did so much in just six short months of life? not many but i did Joshy, you were a MIRACLE from conception and you will and forever be the other man who hold my heart, although you might have futre brother's and sister's they will know how there brother was AMAZING and how they have a big brother that looks down on them and protects them. i love you, forever, for always, untill i hold you again.

Thursday, July 1, 2010

no it's not a's my actual life.

So i have been having been trying to be a bit more positive in life in general, since joshy passed away i became a very angry and secluded person, for those of you that know me, the secluded part is not new the angry part yes. when Joshy was born it's like i became a whole new person, which i did i was a MOM i loved it,although joshy was in the NICU it was like everyday was a new adventure that i looked forward to, seeing my little munchkin growing everyday, it's like the world had just been re-born. I looked at trees differently flowers,the sky, everything i couldnt wait to share this life with Joshua. well six month of joy (yes joy even though there were EXTREMES up's and down's) turned into what is now my life,my new life, my new life without joshua. Seeing everything in a whole new light. a very dark light that i wish and hope one day will become bright again. Joshua brought so much joy not only into my life jonathan's life but everyone around him. Everyone looked forward to meeting my little MIRACLE this little man that had been fighting so hard for life and time and time again had overcome obstacles that dr's said he wouldn't. Through these last few day's i have realized that although i am mourning my only son, so are the rest of my family, because my mom was looking forward to finally being a grandma, my sister a aunt, and everyone else seeing my miracle grow and thrive. I have been reading other angel mommy's blog's and see that they're the only ones that can relate and not read this and say WOW she's crazy, because to other people yes i may be crazy right now, but people have to understand that i have lost my one and only pride and joy, every person deals with grief differently and i know there's no right way but know the way im handling joshy's passing some days isn't right. now i feel like im just rambling on and on............okay so for now i think i'll just leave this post as a ramble and try to get all my thoughts together. moving on-

last week there was some drama going on concerning joshua's site. turns out there was another baby that was going to be burried next to joshy. My heart goes out to that family. well on wed i get a call from my friend scarlet who was visiting joshy with her son tai, they always go and bring him toys and sing to him, I KNOW HE LOVES IT, well she calls me to tell me there was going to be a service that day and they were moving joshy's belonging and throwing them into a box, I WAS LIKE WHAT ! cypress lawn (his cementery) didnt even call me to tell me so i could have his toys and stuff removed, i got so mad, i called the lady who handles the services and she said that there were some issues with how much stuff was in joshy's site, that he had to many belongings and to many flowers and we were only allowed three items including flowers, are they freaking kidding me! i have seen tons of sites with WAY more then three items and they're picking on JOSHY a baby. i was so mad, it was my sister's birthday dinner that night and all i could think about was how joshy didnt have his flowers or toys and they completely disrespected him. well the next day me and my sister went down to talk to the lady and we spend THREE hours negotiating what was able to be in joshy's site. might i add that NO WHERE IN THE CONTRACT does it say that there is only three items to remain at a buriel site. so they tell us it's just a rule and that they try to enforce it on every one WHATEVER there are tons of sites with way more things then joshy had, well i told them that because of what they had done i had, had a panic attack (which is true) and that this is my only son who only had passed away two months ago and they were taking away the only thing that was keeping me from becoming suicidal, being able to come to joshy's site and decorate it and be with him. well after three hours and my sister saying that this was so important that we would get lawyers involved. They had to call the superintended to review joshy site. conclusion to the story, i cant believe that they put me through that, or that they would put ANY family through that, i understand if a site is unkept and is overflowing to the fact that it's going into another persons space but joshy's site is very tidy, me and jonathan go three sometime four times a week to make sure his site is clean and all his dead flowers are thrown away. well joshy's site is back to normal and i hope it stays that way or else cypress lawn will have a very big lawsuit!

with my angel, the only place i can smile.

daddy making sure joshy's site is perfect.

His first set of ears ( im a disney fanatic and always pictured him with his first mickey ears)


His kingdom

all his gifts.