Miss you my baby!

I'm dying inside today my beautiful girl. I struggle to breath and to keep it together. I've had some people that I never would have thought to be there for me and are and they are giving me hope and encouraging me to go on and smile, just like you would have wanted me to. It's funny how people struggle to find the words to say to me, but it isn't that hard and if they do not have words, just a hug and an acknowledgement would be fine. I've joined an online support group called MISS Foundation. There are many parents on this site that are mourning the lose of their child/children. The only downside to this is that it doesn't seem to get better in the sense that I will always miss you dearly and I will continue having good days and bad days.

Daddy and I are trying to keep it together. Your Daddy is having a very hard time. He misses you so much, as I do, but his days are so hard right now, because when he gets up in the morning to get kids going, he expects to see your door open and you strolling out with your eyes half shut. We feel helpless and there is such emptiness that we don't have energy to do much of anything. I have days that I am in disbelief and I don't know if subconsciously I think you are coming back or what, but when reality hits its painful. It's almost like I'm reliving your death every time this happens....over and over again.

We are scared to forget your beautiful smile, humor, your facial expressions, your touch, your kisses, but we have pictures to remind us; Although, there aren't enough to satisfy me. I had to delete the ones I took of you on the beach, because those make me so sad. It takes me back to the day your fever started and the pictures show how you weren't feeling well, but you still put that smile on your face which amazes me! Those were the last pictures I took of you and it makes me sad. Your aunt Vicky took some of you when you were in the hospital, because the kids couldn't go in to see you. The other day when I was in my robotic mode, I decided to look at them to remind me that you are never coming back and it was hard to do, but I know I have to remind my robotic self of this often. Daddy is getting all your VHS videos that we have of you performing in your school plays. I can't wait to see them again....it's been awhile.

I look for signs of you, but I know that I have to be open to them in order to see them. At night when it's dark, I have my eyes open and I'm looking around to see if I can see you. I do see many different lights in waves...not sure what that means, but that's when I get scared and close my eyes. I'm going to see a medium sometime soon. She tells me she has already received messages from you and I can't wait to hear them. Please come by and visit me in my dreams. I'll be waiting for you. I love you my beautiful Elyce!

The Pit

Good timing for this post.

"The day my child died, I fell into the pit of grief. My friends watched me struggle through daily life, waiting for the person I once was to arise from the pit, not realizing "she" is gone forever.

The pit is full of darkness, heartache and despair, it paralyzes your thoughts, movements and ability to ration. The pit leaves you forever changed, unable to surface the person you once were.

Some of my pre-grief friends gather around the top of the pit, waiting for the old me to appear before their eyes, not understanding what’s taking me so long to emerge. After all, in their eyes, I’ve been in the pit for quite sometime. Yet in my eyes, it seems as if I fell in only yesterday.

Not all of my pre-grief friends are gathered around the top of the pit. Some are helping me with the climb out of the darkness. They climb side by side with me from time to time, but mostly they climb ahead of me, waiting patiently at each plateau. Even with these friends I sometimes wonder if they are also waiting for the pre-grief me to magically appear before their eyes.

Then there are the casual acquaintances, you know the ones who say, "Hi, how are you?" when they really don't care or really want to know. these are the people who sigh in relief, that it is my child who died and not theirs. You know ... the "better them, than me" attitude.

My post-grief friends are the ones who climb with me, side by side, inch by inch, out of the pit of grief. They have no way of comparing the pit climber to the pre-grief person I once was. You see, They started at the bottom of the pit with me. They are able to reassure me when I need reassurance, rest when I need resting, and encourage me to move forward when I don't have the strength. They have no expectations, no memories and no recollection of how I "should" be. They want me to get better, to smile more often and find joy in life, but they also accepted the person I’ve become. the "person" who is emerging from the pit."

Only you........

On my drive home from work, I have all the time in the world to think and mourn your death. Tears pour down my face uncontrollably and I wonder if strangers can see me crying. As I get closer to home, I think about not stopping and driving forever. The thought of going home and not seeing you is painful. You loved your home and you loved spending time at home and having your friends and family over. But what kind of home is it without you there? When I open the garage door, I hold my breath and hope the kids don't think to come out to help me carry my bags and stuff. I know I would lose it and get upset at them, because they never did that. You were the one to greet me when I arrived from work. You were the one that helped carry my bags and stuff. You were the one that had a smile and twinkle in your eyes when you would see me. It was you and only you that welcomed me home every single day! It was you that called me every morning to wish me a good day and tell me you loved me. It was you that always brought a smile to my face just by looking at you. So nobody can take your place, because you were the one and only that has loved me unconditionally and I will treasure it for the rest of my life.

I love you so much and miss you every second of every day!

Signs

When we moved to Temecula in 2006, we relocated because we wanted a better school for Elyce and an opportunity for Shane to change his career where we can afford to live on one salary. On August 28, 2009, Elyce had been sick and stopped wanting to eat. All those who know Elyce, know this is not something she would EVER do. So we knew there was something wrong. She was drinking lots of ice water, which she never liked drinking water period. I spoke to Elyce’s teacher, Hallie, that afternoon asking if she was eating at school, etc. Hallie confirmed that she wasn’t eating as much as she would normally eat and suggested that I get her checked for diabetes. Hallie mentioned her friend had similar symptoms and it turned out she had diabetes. I took Elyce to the doctors and next day was waiting on the results, when Elyce wanted to throw up after drinking an entire Jamba juice. Shane was at the fire station and I was alone. I started panicking and decided to call the doctor. As I was talking to someone trying to find my doctor, the other line rang and it was the nurse calling me. The nurse said she received Elyce’s test results and her blood sugar the day before was 789. She said, I need you to take her to emergency right away. I started crying and panicking and told her, I don’t know where emergency is at. She told me where to go and off I went crying and trying to get a hold of myself, while trying to get a hold of Shane. It never fails that of all days, Shane left his phone at home and I had to go through it to try to figure out where to reach him. Go figure he had the station’s number under a person’s name and thank goodness I remembered that guy’s name. So I get a hold of him and am hysterical and he tells me to calm down and he says he is on his way.

After a 5 day stay in the hospital to get her acidosis out of her system and sugar levels back to normal, we went home to try to manage this diabetes we knew nothing about. I questioned the fact of being able to move forward with Stephanie’s and Noe’s adoption that was scheduled to be finalized in October. My baby girl Elyce had type 1 diabetes, and I couldn’t see myself being able to take this on and still adopt the kids. We decided to put the adoption on hold for a few weeks so we can decide what would be best for our family. If we decided not to move forward with adoption, they would be sent back to foster care, which was painful to even think how screwed up they would be. We were their 5th house and they were with us already for 1.5 years. After discussing this for a few weeks, we decided to move forward with adoption.

Seven months later, Elyce is diagnosed with Celiac. By then, diabetes was easy in the sense that we had her well controlled that she never required insulin with every meal. She only required 7 units of lantus at night, because she was still honeymooning. So now we are hit with another autoimmune disease we know nothing about. After hours of researching, we figured out how to make it work, so we thought.

After a few years of Shane volunteering in the fire station and finishing his academy, he started freelancing and substituting at the school to allow time to take Elyce to the doctor. Economy was slow and the firefighting jobs were on hold. Shane kept applying to different places and when he was offered an EMT job, the hours were not going to allow the time to take Elyce back and forth to the doctors, specialist, blood test, iron infusions, blood transfusion, endoscope, etc. Most men would struggle with this fact of not being the main bread winner, but I always said there is a reason Shane is the one with the flexible hours. As a Mom, I was always to anxious and Elyce would feed off of me. I’m the Mom who wanted to smack the nurse when she couldn’t get an IV in and Elyce is crying. I’m the Mom who panics with any bad health news and fights to get control at all times. So this worked for us, and how many people are fortunate to be able to live off of 1 income while still owning their home. Not too many these days, but we were.

So back to the present: Elyce has been gone for a month now and jobs start coming in. Shane is offered a full-time job with the schedule that works for us. If this wasn’t destiny, I don’t know what is. I’ve always believed that there is a purpose in our life and things fall into the place they are destined to be. . I believe Shane’s inability of finding a full-time job was for this very reason, to take care of Elyce. I THINK I’m starting to believe that we are all given our allotted time that we are going to be in this world and regardless of what is happening in our life………when our time is here, it’s here. In Elyce’s case, she was given 21 years, 2 months, and 18 days.

Everyone knows how many countless hours I spent trying to CURE my daughter, but everything I did and had the doctors do, was never enough. Internal Medicine, Gastroenterologist, Naturopathic doctors were all stumped and they couldn’t figure it out. We looked at other underlying diseases that can mimic some of her symptoms, but we were chasing our tails to no prevail. When I look at everything that has happened in the last 3 years, there were signs that we were headed this way. Everything seemed to be getting a little bit worse every time. I do believe it was God’s way of preparing us for the worst day of our lives. Death

Not So Happy Birthday

Birthdays for me were something I have always looked forward to. Shane used to tease me and say that he never knew anyone who celebrated their birthday for the entire month.....but this was the old me.

Every birthday, I would have to act surprised when I opened up my gifts the kids and Shane bought me in case they didn't know Elyce already told me what was in the gift bags. I loved that about her....she was always so giddy and happy to celebrate me or celebrate her Dad and siblings, that she would blurt out what was in the gifts bags. We would always tell her she had to keep a secret and she would say, "ok ok ok".

The new me is no longer excited or wanting to celebrate birthdays. Why would there be a celebration? What's there to celebrate? This is the new me that hasn't accepted the cards she's been dealt. This is the new me that smiles so people think she is ok. This is the new me that can't wear makeup, because it will smear in less than 5 minutes from all the crying. This is the new me that is starting to get angry at others, because their lives seem to be so perfect and they have healthy kids and have no idea how it feels like to lose a child. This is the new me that wants to scream at God and say, "Why Elyce....what did she do to deserve this!". This is the new me that lost her drive and determination to make a difference in this world. This is the new me that no longer subscribes to places like Downs Syndrome International and gives advise to the new parents. This is the new me that doesn't know what the future holds and is scared to death that I will never know. I don't necessarily like the new me, but this is who I am today.

A few days before my birthday, I came home to a gift bag on my chaise. It had already been a difficult day and I literally cried all the way home. I couldn't wait to get home and go to bed and cry. Shane could see right through me and came upstairs to find me in a the fetal position crying. I asked him to please not bring up the fact that my birthday was a few days away. I asked him to please ignore my birthday this year, because I can't bare the thought of not having Elyce here to celebrate with me. I asked him to please tell the kids not to say anything on my birthday, so I don't get anymore emotional on this day. All this to try to spare me from being depressed on my birthday...but it's like walking on egg shells for everyone including myself. I guess I just need to go head on and accept the fact that this day will be a not so happy day. :-(

Sorror

You cannot row it away
Not this sorrow,
you cannot drape it
over sand dunes
hoping it will blow into the atmosphere,
not this sorrow...
and the slow sound of the word
sorrow
sorrow
sorrow
begins a keening cry
soft and solid, loud
and languorous,
stretching pain until
it begins to wear thin in spots,
and the tears that watered rain forests
now collect in lakes, and
those who know this sorrow
plant a tree,
a magnificent tree.

-Ruth Ann Meyers Kulp

Dear Elyce, Today you would have....

My Beautiful Elyce,

Today (August 15, 2012) was the first day of school and it was very hard not to get your things together for school. On the first day, I would have taken time away from work so that I can go to your class and meet any new assigned aides/coaches/teachers. I would have met with the teacher and reiterated the school procedure to avoid getting you sick with other people’s food items. I would have made sure you had 1-2 aides/coaches that knew exactly what you could or couldn’t have so that there is accountability. I would have also taken all your medicines to Connie and Lisa and met with them. Connie and Lisa would have reassured me they would look after you like they have always done. After all these years, we still struggled with the teachers and the aides/coaches and their ability to monitor and keep you safe. Everyone that helped you meant well, but they just didn’t understand the severity of it all. This was part of our world and boy do I wish I was doing this today!

You absolutely loved school and every time you stepped foot in the classroom, you made everyone smile and lite up the room with your presence. Everyone loved you and you had many helpers that looked over you. Many of your friends probably forgot you were older than they were, because you are short compared to them and they liked to take your by the hand as if you were their baby. You never got upset at them and you appreciated everything they did for you. The aides/coaches wanted to do the same, but we had to remind them that you were very capable of doing it yourself, but they just wanted to help you, because they loved you. You were a magnate to many and I completely understand why….you are an Angel and they felt your spirit and love.

Noe started Kindergarten today. You would have reminded him to behave and if he didn’t, you would tell him he would get pow pow. You would have said, “Come here” and you would have hugged him and rubbed his head like you used to always do. I wonder if he will ever know how wonderful you were. I wonder if he appreciated you and if he knew how lucky he was to have lived in your world while you were here. Noe started crying the other day and when daddy asked him why he was crying, he said, “ I miss Elyce and it makes me sad when Stephanie cries. It reminds me Elyce is in heaven”. He had never cried before and I assumed he didn’t understand it, but now know he does.

Stephanie started third grade today. You would have told her to have fun and you would have said, “you can do it Stephanie”. You would have hugged her, then wrestle with her like you used to do often. You would have gotten her all wound up and she would have been giggling like crazy. Both of you would have been sweating from the wrestling and chasing her around the house. She did realize how special you were. She cries for you almost every day. She says she misses you. I try to convince her that you are in heaven and that you are happy. I wonder if she realizes when I say that, I’m trying to convince myself of the same.

You would have come home today at 1 p.m. with that big smile and your great strut. We would have asked you how your day was and you would have said, “good” with the biggest smile. You would have taken all the paperwork, lunch, and any other items from your bag pack and would have done your daily routine (go potty and wash your hands) like you always have. You would have taken your supplements and then ask for food (boy you loved to eat). When the kids would get home, daddy would have had all three of you on the dining room table doing homework and would always include you, even though you didn’t have any.

Yes, today would have been another beautiful day with you. The day I wish I had. If only I could have a day with you....just one day!

I’m starting to get angry. I read the book; Heaven is for Real, in hope that it convinces me that there is such a thing. When I read this book, I wonder why this little boy survived and you didn’t. He went in the hospital in bad shape, just like you did. So why is it that he survives to tell his story, but you didn’t? Many say it was your time to go to heaven, but what was going on in heaven that they desperately needed you up there. You are needed here with us, not in heaven. Now all I have are the memories. I hope these memories do not fade and hope I can easily recall all those wonderful stories I have of you, so that I can continue your legacy.

Mommy loves you very much, but I don’t have to tell you, because you know already. You will continue feeling the love I have for you each and every day of my life. Mommy is waiting for another sign from you and I hope you send one to me soon. :-)

Letter to Elyce

My Sweet Beautiful Elyce,

Today marks 3 weeks since you have been gone. The week you were in the hospital is a blur and I know I’ve been numb ever since you’re passing. It finally hit me last week that I will never see you again. Telling myself I will not see you ever again is what kills me inside. There is such emptiness in my heart that it feels like I’m not alive anymore. I’m like a robot. I am doing things, but my mind is elsewhere and in a fog.

People say your service was beautiful, but was it? Did it do you justice? I don’t think so; you had so much life and love in you that it’s hard to explain to others that didn’t know you very well. Although, most people who attended loved you very much and they had good stories about you that always made them smile.

Every morning and night I tell you “good morning /good night my beautiful girl”. Do you hear me? I’ve been talking to you every day and have been telling you to give me a sign that will tell me you’re ok. I even give you specific things to drop or move, but I have to understand you will send me a sign when it’s time. That day came on August 9, 2012. I got out of my car for some food and left the driver’s side open while Shane waited outside. I had been driving on this particular trip and as soon as I got back into the car, I noticed the feather on my seat. I believe that was you telling me you are ok, right? It had to be, because there weren’t any birds or trees around.

Mommy cries when I relive the moments in the hospital. Especially when you were crying and said, “I want to go home”. I wish I could have taken you home, but you were in so much pain that I couldn’t take you with me. When I think of the last time I seen you alive, I remember you asking me to stay the night with you in the hospital. Why didn’t I stay? I wish I had stayed with you and I decided to sneak out so you wouldn’t be upset. Daddy always stays with you and I thought this was going to be another one of our visits that you would come back home. I thought I was going to bring you home and Daddy and the kids were going to be waiting for you with balloons and flowers. Daddy would have carried you out of the car and taken you to your bed, just like you liked it. That’s how it should have been, just like prior hospital visits.

Mommy remembers how much you love your grandma Rose. Are you with her? Every day you would ask for your Grandma. I remember I used to tell you that you will see her when God decides it’s your time to go to heaven. Do you remember what you said to me? You said, “I don’t want to go to heaven....I want to stay here with you”. Mommy cries remembering that, because I know you wanted to stay with me. In the hospital you fought so hard to stay with us, but my baby, God needed you up there to liven up the place.

Mommy cries when people ask me how I am doing. I want to yell and tell them I think about leaving this world so I can be with you, but I bite my tongue so they don’t feel bad. When people tell me, “Elyce is in a better place”. I want to tell them; NO….the better place would be with me.

My beautiful Elyce…..I will try to be strong like you were, but I’m realizing I’m not as strong as I thought I was. I cry at work, in the car, in the store, at home, and other places. I haven’t been able to go into your room yet. I will one of these days, but I know I will end up staying in there and won’t want to come out.

Love,

Your Mommy

My Brother's Eulogy for Elyce

As mentioned before, most of us can never be prepared to write a eulogy for their daughter or family members. Since Shane and I didn't think we would be able to deliver it at the church, we asked the best next person, my brother Manuel. I'm sure it was a very stressful thing for him to do, but boy did he do an excellent job and he made me proud. Since many of you missed the service, I'm adding this for all to read.

Her Arrival:
The day was May 2nd, 1991. It was a Thursday evening in San Jose. La Familia Ruiz was giddy with anticipation as the first grandchild was on her way. I was 15 and had never seen my father as excited as he was this day. It was a side of him that he didn’t show often. Tender, caring, eager. The family tree he had started was growing a new branch. She was as beautiful as any baby we’d ever seen…in our eyes perfect in every way. Within a few days we were told Elyce was indeed special but not in the way we had imagined. She had been born with Down Syndrome. We were shocked of course but more so because we really didn’t know what this meant. What kind of life would she have? So we did what all good catholic families do…we went to church and we prayed for her well being.

Her Progression Through Life:
As a baby Elyce became the light of our family. The person that always lit up the room. The incredibly photogenic sweetheart. To us she was never different in anyway. She was just Elyce. Even as a baby she always had personality. She had that something special that you just couldn’t ignore. Obviously Elyce’s path through life was going to be more challenging than most kids and would require special parents.

Kity’s Determination:
For those who know Cristina well know she too is incredibly unique. I personally have never met a person so driven, so determined and so stubborn in my life.
All of those qualities combined to make her the ideal mother for Elyce. She taught Elyce to play the hand she was dealt but never, EVER settle for anything less than what she wanted. She taught Elyce that if she was content, it wasn’t good enough, she should be happy. And if she was happy, it wasn’t good enough, she should be ecstatic. What Cristina preached to Elyce, she practiced herself. Through Cristina Elyce learned that she could fight, fight and fight some more and that would lead her eventually to get what she wanted out of life. My wife Susana works with developmentally disabled children including down syndrome children. One of her most effective strategies with the parents is to simply describe the type of mother Cristina is. This serves as an effective motivator to other parents that they too can help their children realize their full potential. That their children ARE capable if you teach then to never accept status quo. Kity…you truly are an amazing mother.

Shane’s Impact On Her Life:
But in all fairness Cristina hasn’t done this completely on her own. 8 years ago Shane not only took Cristina’s hand in marriage but also Elyce’s. And when he put that necklace around Elyce’s neck as a symbolic gesture that he was committing to be the man in both of their lives, he absolutely meant it. Since then it’s been crystal clear that Shane is head over heels in love with both of these women And Elyce was completely in love with him. It came to a point that Shane knew everything you can imagine about Elyce. Her favorite games, favorite shows, favorite foods. I can't remember how many times Cristina would start a story about Elyce and Shane would finish it with the kind of detail only a committed father would know. Thank you Shane. My family thanks you and we all love you very much.

How She Embraced Her Siblings (Stephanie, Noe, Exchange students):
As the Leivas family grew Elyce immediately embraced whoever entered it. Noe and Stephanie were instantly welcomed to the family and Elyce eventually became a second mother to them. If Stephanie or Noe acted up she would never hesitate to give them a point and a stare. But she loved them immensely and she loved everything else in life. And that also applied to the exchange students Cristina and Shane would take in. They always treated her as a little sister. And I will never forget the last time she visited us. Elyce was in one of the bedrooms with Alba. I walked in the room and the stench was unbearable. The kind that hits you like a brick wall halfway down the hall. Yet they were both sitting there as if nothing in the world was wrong. And that’s exactly what Elyce did to you. She was so infectious that you could easily overlook these things. You could even grow to love it…gas and all!!

The Reality of Life and What She Has Taught Us:
Today what I most remember and what I most want us here to focus on is that Elyce can teach us so much about life. Someone once said “you should live each day as if it’s your last. Certainly someday you will be right.” Death is the ONLY certainty in life and we shouldn’t be afraid of it. Instead we should treat it as an opportunity that each hour on this Earth is precious. Learn from Elyce. She taught us to fight for what you want. To savor life. To truly find joy in everyday activities.

Don’t forget that smile, don’t forget that pure laugh, Don’t forget her infectiousness. And most important don’t forget to remember her. Today it may be difficult, but tomorrow don’t be afraid to let her stay with you. The best way to honor her memory is to approach life as she did. With a zest and joy which was completely genuine.

- YOU'LL ALWAYS BE WITH US, ELYCE!

My Eulogy for Elyce

How many of us would have ever thought we would have to prepare ourselves for a death of a child? I'm sure most of us would have never imagine. What parent would ever be prepared to write a eulogy for a child and to capture all the key points of her beautiful life. The eulogy is a great way to help others know who Elyce was and why she was so special. I hope I did her justice, because words can never explain how beautiful and full of life my Elyce was. So here goes it.....the eulogy I wrote for her service and was too emotional to read. I was fortunate to have my sister read it to family and friends who were present.

My Elyce

I remember when Elyce was first born and her genetic doctors coming into my room to let me know that my daughter was born with Downs’ Syndrome. Downs’ Syndrome I ask? Yes, trisomy 21 they say. I absolutely had no clue what that was….. I mean who really would know at age 23. First few days I was scared to hold her, because I thought she was going to die, but once I held her, I never stopped! I know deep down inside there was a lesson to be learned. That lesson for me was not to be afraid of the unknown or the things you believe you are scared of. I was afraid of intellectually disabled children that I seen at the fair when I was younger. It’s the unknown…..nobody really talked about it and I was too scared to ask what was wrong with these children.

Once I accepted that she was Downs’ Syndrome, I never looked back. I took full control of the situation. I asked myself, how do I teach her so she can learn for herself and be successful, and I went full steam ahead with the help of my wonderful family. Every little achievement didn’t go unnoticed. These achievements, whether it was learning to crawl, walk, brush her teeth, get dressed, tie her shoes...etc were applauded like she just won a gold medal. To us, each achievement was just that and more.

Teachers, aides, principals, helpers, buddies, all loved her at school. As a Mother I always felt so much pride when I was with her, because Elyce was always the life of the party and she always found a way to touch the hearts of those around her. I do not think I really realized it until now, the impact she has had on many people’s lives.

She has left so many good impressions and taught so many people the meaning of strength and love. As a family we’ve had the pleasure of hosting exchange students. All of students fell in love with Elyce, but never too the magnitude that Alba did. On day one, Alba had a instant connection to Elyce. Together they had an unconditional love for each other. This included accepting those kisses Elyce loved to give when her mouth was full of gunk from food; or when Elyce cleared the room when letting out some air. As Elyce would say, Alba……my twin. Elyce taught Alba how to be strong when life throws you a curve ball. No doubt Elyce taught her and many others strength. Little did we know, Alba would need that strength to fight for her own life. I truly feel Elyce and Alba were meant to cross paths so Elyce can help Alba through her fight.

Elyce has played many roles in our lives, the most recent role is our cheerleader on the tennis courts. She would sit on the side lines and watch my teammates and myself play tennis and cheer us on. She always would say, “you can do it or you have to believe”. She would melt people’s hearts, because for someone with this so called disability, she just gets it! She may have been delayed academically, but socially she got it. She was so uplifting to all those she got to know and love.

Not only did she watch and cheer us on, she also loved to compete and compete she did for over 12 years. She competed in tennis, soccer, softball, basketball (even when she was the shortest kid), golf, and track & field. She’s won over 25 medals. The funny thing is that she was never satisfied with coming in 2nd, 3rd, or 4th. She was an over achiever....not sure who she took after on this skill....HaHa! There were times when she wasn’t feeling well, and her drive to continue showed her drive to live her life to the fullest.

My baby girl was heaven sent. She was an angel living amongst us. Every person she touched never forgot her. She had a laugh that was contagious, that beautiful smile that brought you in every time. My only solace is that she is in heaven with her Bacah, Frida, Ebony, and Frijol and isn’t alone. I’m sure she already made a good impression on all the other angels there beside her. I can still hear her voice telling me, “It’s alright Mom....relax…..it will be ok” or telling me “you got to believe”. This is what’s giving me the strength to keep going. She would have wanted her mommy to be happy. She loved me so much and she told me every day, like I told her every day how much I love her. There are no regrets here……I loved her with everything I had that it hurt. This was her purpose in life and she accomplished it with flying colors!

You go on my beautiful Elyce……take your wings and fly and watch over us. Until we meet again……………..

The Things I Missed The Most

As I sit here and reflect on everything that has happened, I want to focus on the positive things today. The things I miss the most and the smile and joy it brings
me.

Her singing - that singing you do in the car where you don't care who hears you;
Her contagious smile that make others smile;
Her laugh - especially that belly laugh that I was always able to get her to do;
Her sense of humor;
Her holding my hand just because;
Her expressions and the way her eyebrows move with each expression;
Her falling asleep and fighting it - never want to miss out on anything;
Her hugs that never get old;
Her kisses that she gives without hesitation;
Her morning calls to say "Good Morning Mom....I Love you";
Her texting crazy gibberish things;
Her telling me she loves me every day;
Her shaking her booty when she dances;
Her performances and the applauds they bring;
Her competing in Special Olympics and her dedication to be the best she can be;
Her coming to work with me and helping me out;
Her cheering me on at my tennis matches;
Her cheering on my teammates;
Her cheering on the kids in soccer;
Her excitement for her birthday, holidays and our birthdays;
Her scribbling and rainbows she would draw.....think I know now why the rainbows;
Her daily special food requests;
Her written recipes she would leave on my desk;
Her keeping mom in check;
Her keeping kids in check;
Her having my back and always agreeing with Mom :-) ;
Her love for movies;
Her love for Disneyland;
Her love for her friends and family;
Her telling me everything will be ok;
Her telling me it's much better, even when its not;
Her smell;
Her welcoming me home every day and carrying my bags in the house;
Her will to fight;
and
HER UNCONDITIONAL LOVE!

I wish all Mothers get this kind of unconditional love that I was fortunate to be blessed with, even if it was for only 21 years.

Oh How I Miss You!

Reality is setting in this week and it has been so difficult to accept reality. I'm still hoping it was a dream, but as time passes by without seeing my beautiful girl, it's more apparent that this hasn't been a dream, but rather a nightmare.

Today I cried buckets for my baby girl Elyce. As I use the word "baby", I can hear Elyce saying, "I'm not baby, I'm Elyce"! She was such a sharp girl! She just got it!

This week I longed to hold her like I used to.....sometimes she would hold me when I needed it. Those hugs and kisses that are given with No expectation and given unconditionally, because of the love we had for each other, is what I miss the most. She wasn't your typical young adult/teenager who would feel embarrassed when Mommy hugged and kissed her. When I would wrap my arms around her and kiss her, it was like it was the last time I would see her and she would say "ohhhhhhh mom" with a sigh as if it soothed her. She felt all the love that I had for her, as I felt the love she had for me. We were joined at the hip and I loved every second of it. A child's love is the biggest love of all and nothing can match it.

It makes me smile thinking of the love we had for each other and now that she is physically gone, my heart is empty....like if there's a hole in it. My husband has big shoes to fill and so far he doing pretty good job in filling them :-)

How Did We Get Here?

One minute you are living life as normal as possible and the next, you don't know what hit you. When I say living life as normal as possible....I literally mean normal in our sense....which means keeping Elyce away from eating gluten, dairy, soy, corn, nuts, grains, etc and giving her over 12 different supplements to help her heal her gut. That was our norm and I would take it back in a heartbeat today if I only could.

In May 2012, Elyce's albumin blood levels was very low again and we ended up admitting her to the hospital. This was our 5th visit and 4 out of the 5 visits had to do with the same issues, low albumin and malnutrition. Elyce wasn't absorbing the food she was eating, due to the inflammation of her gut. As usual, they put her on lasix to release the water she was retaining and gave her albumin to bring her levels up. The albumin is only short lived, meaning it only stays in your body for about 2 hours. This visit we knew we had to probably get her on TPN to provide her with the nutrients she needed. TPN is administered through a PICC line that goes through the large vein in her arm and extends all the way to her chest. This process of getting the PICC line in, is done under a sterile process, because of the sensitivity of it all.

Right before our 4th of July vacation, we considered removing the PICC line so that Elyce can enjoy herself and swim in the pool. We second guessed ourselves and decided to leave the PICC line in. We thought the longer we leave it in and administer the TPN, the better her albumin levels will be. We had a great vacation and Elyce was able to enjoy the pool with a PICC line cover we purchased. This was one of the few vacations that we weren't stressed. We had packed all her food, microwave, TPN, and we basically had everything in the hotel as if we were at home. Elyce normally complains about not having something each time we are on a trip, but this trip was smooth and she was happy. Never complained about anything, which made our vacation less stressful and made her happy.

On July 13, we decided to take the kids to the beach. That morning Elyce had a dentist appointment in San Diego that Shane took her to in the morning, and I decided to stay back and pack everything up and meet them there. Shane mentioned Elyce didn't sleep the night before, due to the TPN machine going off all night long. He said she wasn't happy and would be grumpy. When I seen her, she just looked tired to me and she decided she wanted to take a nap, which is not the norm for her. We thought it was due to her inability to sleep the night before. After she slept for about an hour, I decided to check her and she seemed warm to me. I later told Shane that we should probably head back home. Once we got home, her temperature was 104. I quickly gave her Tylenol and soaked her in the bath. She requested I make her sopita (chicken soup)....her favorite when she isn't feeling well. Her fever was up and down, but that night her voice sounded funny and Shane woke me to tell me he was taking her to emergency. In emergency, her fever came down and they said she was dehydrated. They did a ct scan to check her lungs and everything looked fine. They put her on iv and then released her.

Saturday she woke up fine....she had energy and it seemed like she was getting better. Shane took her to Kaiser urgent care, so they can look at the PICC line. We thought maybe there was something wrong with it, since machine was going off and when they put her on the IV the night before, it seem to get blocked up. They checked her PICC line and it worked perfectly as if nothing was wrong. Her fever started creeping up again that night, but it was manageable. On Sunday, her fever stayed at around 99 and she started saying her side hurt. She had a little bit of loose stool and she felt like throwing up. We thought she had the stomach flu, which would make sense with all her symptoms. Sunday night her voice seemed hoarse and I told Shane that that can't be normal. It was late then, so we decided I would take her to Kaiser in the morning on Monday.

By Monday morning, Elyce was complaining about pain in her side stomach and her legs. Her voice was the same and she was urinating normal. I checked her in to emergency and they got her in right away. We all thought it was her gall bladder giving her problems and the pain she had coincided with pain you would normally get. They did a bunch of labs and put her on the IV to give her fluids. By the time 12 rolled around, she was moaning and had more pain. Her urine at that time was super yellow. They connected her to antibiotics and the doctor said he can give her morphine for the pain. In between that time, they did some x-rays and then decided to do the nuclear scan that can really tell us if it was her gall bladder. This scan took about an hour and trying to keep her calm while having some pain was unbearable for me. We finally made it through this process. Later that day the ER doctor said they will admit her, because her lungs looked cloudy and it looked like she had pneumonia. Her nuclear test came back inconclusive. They decided to wait another hour and take more x-rays to see if the dye went through. At this point they seen inflammation around the gall bladder and it looked like her bile duct had something. Further testing would tell us more.

Monday night, Shane finally arrived and they moved her to ICU. The pain seemed to be getting worse and they had to keep increasing her morphine dose. They also put her on oxygen, which she hated and kept wanting to take it off.

In all the hospitals stays, Shane will always stay the night with her. Elyce always asks me to stay instead, but I've always been such a wimp and I don't help the situation, because Elyce can sense when I'm going to loose it. So that night I snuck out so she didn't see me leave. Little did I know that was going to be the last time I seen her alive........

Tuesday morning I got up and went into work for a few hours. I checked in with Shane and he basically said she was the same. The pain had finally gone away with the high dose of medicine and she was sleeping. The plan for that morning was for me to get some work done and head to hospital around noon to relieve Shane. Right before I was heading out, I received a call from Randy (Shane's cousin) starting to explain that they had to do something to Elyce. I didn't understand him, because I completely freaked out and asked where is Shane and to put him on the phone. Shane came on the phone and said, sweetie....I need you to stay calm. They had to intubate Elyce, because she was starting to take the oxygen off and she started turning blue. I had no idea what intubation meant.....so he explained. I was a wreck. He asked me if I needed someone to come and get me, but I said no. I told him I will get it together and drive to hospital. After about 15 minutes of crying, I got it together and drove straight to church to pray. I prayed that God gives her the strength to get through it. I prayed that if God has decided it was her time, then to please take her, but without putting her through more pain. I begged him to get her through this. The church had holy water there and I decided to bring some to Elyce.

Once I arrived to the hospital, Elyce was swollen with a tube sticking out of her mouth. How can anyone go through so much? How can any Mother stand seeing their only biological daughter in that state? I was so scared. I think I knew down deep inside that this wasn't good at all. The doctors didn't seem to be saying much at this time....just that it looked like she had a bacteria in her blood (sepsis). That same day, her kidneys started failing and they put her on a catheter and said they will start dialysis from there.

The next days were a blur. We were lucky enough to have a room with 2 twin beds, bathroom, and a sitting area in the hospital for all the days we stayed there. We tried to get sleep and tried taking supplements to help our stress levels. Every day I would go talk to her and play her favorite songs. I was too scared to stay in the room with her for a long period of time. It was just unbearable to see my daughter in that stage. On Friday morning, was the day her eyes weren't dilating and her oxygen levels came down.

There were plenty of signs that there was something wrong with her PICC line, but there weren't any physical signs around her line that would tell us she had bacteria. Her PICC dressings were changed weekly and no signs of anything being wrong. Just like that.....one day you are living and the next day your daughter is fighting for her life. All this, because of the TPN that was supposed to be helping her by providing the nutrients her little body needed. It was right there.....but how did we know something like this could have happened. Nobody said this was a possibility....only thing they stressed was to look for irritability around the PICC line. How can we not want to blame ourselves for not having that PICC line removed? How?

Pure Beauty

Worst day of my life

It was Friday, July 20….woke up in the morning after sleeping a few hours in the hospital.  Shane had gone downstairs to check in on Elyce.  As usual, I asked him how she was doing, but this time he said she had a little issue last night.  Elyce's oxygen fell and they needed to bring her oxygen levels back up from 75 to 85.  I thought ok....just another bump on the road.

Coincidentally, there was another mother of a Down ’s Syndrome 18 year old that went into the hospital with sepsis and similar symptoms.  He had been there for 1 month and they finally removed the tracheal intubation and was on a oxygen mask.  On day 3, the doctor introduced her to me and she told me it would be a long bumpy road.  She advised me to try not to get on the rollercoaster ride.  She also said there will be less than baby steps in progress, but then there may be a big setback.  This was part of the process in getting Elyce back to good health.

Elyce was diagnosed with septic shock.  Her kidneys and lungs were failing, but they started the dialysis and she seemed to be responding well.  She was also intubated and they also had to paralyze her so she gives her body a rest and doesn't fight the intubation. 

So that Friday morning, I got dressed and went downstairs to talk to Elyce and play her favorite song, "U Smile".  Shortly thereafter, they lowered the oxygen to 80 and I thought to myself, she can hear me.  I told her to be strong so I can take her to Spain to see Alba.  I told her how I was so very proud of her and how much I loved her.

Shortly after, I went into work for a few hours then thought I would head home to pick up some clothes from home.  On my way home, Shane texted to tell me her eyes were not dilating and there can be 2 reasons for this.  1) medicines or 2) water in the brain that would require surgery.  Once I heard that, I went straight to the hospital, but not without talking to God again.  I told him that I know Elyce has always been heaven sent and if it's her time to go then take her, but don't make her suffer.  I begged him to keep her here, but I also knew that I would not want to see her suffer anymore.

As I arrived to the hospital, Elyce was having her 4 hour dialysis.  The plan was to finish that up, stabilize her and take her down for a CT scan of her brain.  Doctors came and told Shane the results were in.  Shane came to tell me and said, I don't think this is good news.  He asked me if I wanted to go talk to them and I said, no.  My aunt went with him and as I suspected, Shane came back in tears telling us that Elyce was already brained dead.  As we fell to the floor and wept, things needed to be decided.  As we have always said, we don't want her to suffer anymore and we knew that the only decision was to take her off life support.  We called my siblings and we decided to wait until her aunt Vicky and Mara arrived from Thousand Oaks to say our final goodbyes……..