Wednesday, August 29, 2012

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."

Monday, August 27, 2012

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!




Friday, August 24, 2012

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



Wednesday, August 22, 2012

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. :-(




Tuesday, August 21, 2012

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

Monday, August 20, 2012

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. :-)


Wednesday, August 15, 2012

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