Dragonfly Dreams

Collateral Beauty

noreply@blogger.com (Kalialani) — Fri, 14 Apr 2017 17:03:00 +0000

I haven't been here for a while, but felt the need to check in recently, as so much has changed. Quick update on life, if you don't follow me on Facebook and/or Instagram-I have a niece, Amina, who is 7.5 months old now. She's brought a new joy to my life that I never thought was possible. With that, came more triggers that I fully expected...but I'm managing pretty well, I think. I have a new(ish) partner named Lucien, who I've been with for over two years now. I have a new(ish) job at a different university not far from my last. I've been there for over a year now. I'm applying to graduate school and should start in the fall, assuming I'm accepted. Nursing or medical school has always been my dream, but financially, I couldn't make it happen. Therefore, my plan B is to move up in higher education and my graduate degree will help me to advance in my field. This last year has been a clusterfuck of emotions, so I've been all over the place, but I'm starting to feel like everything is settling down...for now. Lucien and I bought tickets to Thailand for September, so I'm definitely looking forward to that. It will be my first real vacation outside of the country. I don't count my few hours in Canada to get a tattoo and the Caribbean cruise I went on a few years ago. This is a big step for Lucien and I, considering I've never traveled outside of the country with a partner before. I guess you could say it's getting pretty serious. We introduced our families to each other and traveled to the other side of the country together to visit his, so I'm definitely invested in this man. I look forward to making new memories together and going on many more adventures with him.

Yesterday, Lucien's car was broken into for the second time since we've been together. After a messy weekend last week, I decided to give up alcohol for a while, but that decision didn't last very long. I wanted to cheer up Lucien by having a movie and wine night. We got an extra large bottle of red wine (2-in-1) and began our movie night with Collateral Beauty. As a baby loss mom, I knew what I was getting myself into, but I probably shouldn't have chosen this movie while I'm attempting to cheer up my boyfriend. I cried the ENTIRE movie. Full on, ugly cry. There was no hiding the tears that left my eyes last night. Lucien couldn't wipe my tears fast enough, but cracked enough jokes to make me laugh through my tears. I don't want to spoil the movie for anyone that hasn't watched it yet, but have you guys seen it?! I highly recommend it, if you're looking to have an ugly cryfest like I did.

Memorial Day weekend

noreply@blogger.com (Kalialani) — Mon, 27 May 2013 23:33:00 +0000

This has always been a difficult weekend for my family...

11 years ago we lost a VERY important person in my family. My Tutu (grandma). She was the free spirit, loves everyone, speaks her mind, makes friends anywhere she meets type of person...there truly is no one like her. I was only 12 when she died and I can remember the last weekend we saw her like it was yesterday. Memorial day weekend 2002, we all decided to drive to Washington to surprise my Tutu Nui (great grandma). That weekend was truly a blessing for us. The whole family was there. We all shared stories, laughs and most importantly, love. We went to the cemetery, where Leila is now buried, to visit my Auntie Tammy. She is my Tutu's daughter who had passed away in a car accident when she was just 6 months old. Like me, my Tutu was also a baby loss mama. She never spoke about her baby, my auntie, until that weekend. At the cemetery we had a conversation about death that day. My Tutu said something like, isn't is crazy how people just know they're going to die? It's like they don't know, but they're spirit knows somehow. We all talked about the moments before death and how the spirit knows how to prepare for it and that sometimes people wait to die until they've seen the people they needed to see before they die. I've thought about that day many times after she died. She was a long-haul truck driver so we saw her whenever she had a break from work and could come through town...or if she was driving through town to get to her destination. It was her idea to have us come up to Washington for Memorial Day weekend. I think about how her spirit must have known it was time for her to go soon and that we all needed that one last weekend with her. She died the day we drove away from Washington to go home. I used to curse God and ask him why took her and not me instead. I blamed myself. I know it was crazy to think it was my fault, but I did. We all stopped at a gas station to get has before the 11 hour drive home. My Tutu asked us if we wanted anything from inside and I asked for a hot chocolate. She gave it to me and we kissed goodbye. That was the last time I ever saw her. My mom told her to have a safe drive home and I never said it. I know it's silly, but I thought because I didn't say it, that's why she died. Remember, I was 12...

Anyways, I'm not sure why, but the 11th anniversary of her death has been the hardest for me since I was a kid. I miss her so much and can't even believe she's still gone. It feels like just yesterday that she passed away. I remember feeling like somehow I'd forget her since I was so young...and I thank God everyday that I haven't. I remember so much about her. I also remember watching my mom & stepdad's wedding tape after she died over and over again, just so I could hear her sing. I watched her facial expressions as she sang the Hawaiian wedding song--her smile...the way her eyes opened so wide when she got to a certain part in the song. God I miss her...

Going private soon, send me emails!

noreply@blogger.com (Kalialani) — Wed, 30 Jan 2013 17:07:00 +0000

I'm making my blog private soon. If you'd like to keep reading you can send me an email at kalialani.cruz@gmail.com with your email address, message me on facebook.com/Kalialani or just comment with your email address on this post.

Just like that

noreply@blogger.com (Kalialani) — Wed, 23 Jan 2013 17:54:00 +0000

The world comes crashing down on me again...just like that. Grief has ahold of me today. Nearly 3 years later and this news still affects me just as it did when I first lost her. I thought I could handle it, but I can't. I try to be happy for others but my grief just won't let me. Just like that I'm back at square one trying to sort out my feelings and come to a conclusion. One of these days I just want to be at peace with everything and everyone around me. I hate this feeling of jealousy, envy and just pure sorrow. At the end of the day I have to realize I still don't have my baby and it will be long before I ever do again. She's never coming back no matter how hard I wish it to be true. No matter how hard I try to stay positive I just can't see the light at the end of this tunnel. It hurts so bad I can't even describe the pain I feel. All the love in the world couldn't make me feel better today...and that fucking sucks. Days like these I wish I could just sit at her grave and wail so loudly and forget the fact that people think I should have moved on by now. I just need to be near her. My heart aches today...so bad. On that note I have nothing more to say...

I feel you in my dreams

noreply@blogger.com (Kalialani) — Sun, 28 Oct 2012 18:02:00 +0000

I had a dream last night. I was walking to school with an urn, I'm not sure whose, but I thought it was my daughter's (even though she is buried). Then I was walking with a baby girl in my arms. At first I wasn't sure whose it was because I couldn't remember being pregnant a second time, but she felt like mine. I squeezed her tight and cried so hard. I was talking to an older couple with this baby in my arms when something huge had just flown by. I didn't get a chance to see what it was when something else landed on my nose. It was a big beautiful butterfly. Then I looked over and realized the other flying thing was a beautiful dragonfly. It was in one place, only a few feet away..like it was just looking at me. I cried so hard and laughed at the same time. I told the couple, "it's my daughter, I can't believe it." She sent the butterfly and dragonfly to say hello and let me know that everything would be alright. I can't describe the joy I felt in that moment...and once again she reassured me that she is always by my side. Some might think it was just a dream, but I know it was more than that. I've been waiting to feel her again and finally my dream came true.

Leila baby,

Mommy has been waiting to feel your presence again. I know you're always with me, but it feels good to get a little reassurance every once in a while. Thank you for coming to me in my dream. As always, it's a priceless moment I will never forget. I miss you so much. Your Daddy and I have been reminiscing a lot about the good old days when his Cookie Monster was still here. It's almost Halloween again and we wish we were taking you trick-or-treating. I hope you're having fun up there with all your baby friends. I love you so much!

Love always,
Mommy

Miss you

noreply@blogger.com (Kalialani) — Sun, 05 Aug 2012 20:05:00 +0000

I can't believe I haven't been here since your birthday. I've been meaning to write to you so many times, but I never take the time to do so. I've been missing you SO much lately. Well that has never changed...but still. Your daddy and I have been talking about you and thinking about what you would look like by now. It's always been something I'd wondered about. Anytime I see a little girl (toddler) I think of you and how you would be talking and holding my hand skipping as we walked in the grocery store. It's so weird to imagine how different life would be with a toddler now. I wish I knew. I just wanted to say hello to my little princess and let you know that I miss you SO much. I love you. You'll always be my little girl...

Love,
Mommy

Happy 2nd Birthday Leila!

noreply@blogger.com (Kalialani) — Fri, 23 Mar 2012 01:02:00 +0000

I had been preparing for this day for a while now...I guess you could say as soon as her 1st birthday was over I was thinking about the next year already. I knew it would come fast, I just didn't expect time to fly this fast. I had planned to go to the cemetery with Mustafa and his family yesterday. It was a nice trip and I'm glad we did it together. Last night though, I was a mess...it came all of a sudden when I didn't really expect it. I'm usually OK around this time...February is the month that's hardest for me for some reason...I guess the anticipation of this day hurts the most. This year though was pretty hard all around. Last night I fought the tears for the most part...until morning came. This morning I couldn't believe she turned 2. I decided that I would make cupcakes and get a sandwich platter and take them to the NICU. Yesterday I called the NICU that Leila was in to make sure it would be OK for me to come and bring food. A woman named Grace answered the phone and sounded like the sweetest, most appreciative person I know. Mustafa and I took the elevator up to the West NICU where the level III NICU was. Apparently they had moved and we were told to go down one floor. Grace greeted us at the door with a smile and plenty of thanks. We talked over the phone about Leila and her turning 2...but I hadn't told her she wouldn't be joining us today. She told the other nurses about Leila and how we were so sweet to bring stuff for her birthday and that she turned 2 today. Then she asked where she was. I told her she passed away and she gave me a big hug. They were even more thankful we were there. That made me feel good. Grace was nice enough to walk us around both NICUs and showed us the changes the hospital was making. They're remodeling the West NICU where Leila stayed, so there currently were no beds or babies in there. She took us in anyways and walking through the door I immediately looked to the corner where Leila's isolette was. It was like I was back there 2 years ago. Even though I never wanted us to be there, I was glad to be back. It's always felt like a second home even though we were only there 18 days. It was where I spent all my time with Leila and where Leila spent her whole life. She walked us around the current West NICU where all the babies were. I glanced in each room at the tiny little babies and their families visiting. I looked over at a mom with a tiny little bottle feeding her micro-preemie. I immediately broke down. Grace looked over at me and took me in her arms. She said she hoped it wasn't a bad cry...but it was a mixture of both. I was so happy that they were making such positive changes in the NICU for the families, but I was sad for us. I wish we got the chance to make it out of there with our baby alive. I wish we were one of the lucky ones. But then I remembered that all the love Leila brought to our lives and all the amazing people I've met because of her...and then I smiled. I was still sad for us, but happy for these other families. One thing I was upset about was that they got rid of the Butterfly Room where we spent private moments with Leila after she died. It was still called the Butterfly Room, but they painted over all the pretty butterflies with plain white paint. I don't know what the point of that was, but all the nurses were upset over it as well. Grace told us we should complain about it...and I will! This time though I want to suggest a purple dragonfly room. :) I hope they will at least consider it. We'll see. Anyways, overall I'm very happy Mustafa and I went to the NICU. Grace told us we were always welcome to visit anytime. I'll take her up on that offer for sure. Even though it's hard, I love being there.

This is the dragonfly Mustafa and I found for Leila yesterday. The wings glow in the dark and I love it! :)

We found a dragonfly balloon at the store we got her flowers at. We had a pretty dragonfly balloon for her 1st birthday too. We always get lucky with those :-)

Oh I forgot to mention...unfortunately Kristin (our fave NICU nurse) wasn't there, but Grace gave her my contact info and talked to her about me coming. She said Kristin remembered us. I always knew she was genuine, but I think it's so sweet that she remembers exactly who Leila is and has so much love for her still...and always will. I hope I can see her again.

Leila baby,

I can't believe you're two years old today! Mommy misses you SO SO much and wishes you were here with us. It was definitely hard to go back to the NICU without you, but being able to walk around there again and talk about you with the nurses felt good. Even though you're not here with us I'm sure you were looking down today and smiling. Today was a very sad day for your mama but also a reminder that you have so many people who love and adore you. Thank you for choosing me to be your Mommy. I can't wait for the day that I can hold you again and sing Happy Birthday to you in person.

I love you sweetness. Happy 2nd Birthday baby girl!

Love,

Mommy

I'm ashamed to say...

noreply@blogger.com (Kalialani) — Wed, 22 Feb 2012 01:44:00 +0000

Very few people know the true meaning of family anymore. I'm over everyone at this point. I haven't learned my lesson yet and I probably never will. I expect too much from people apparently. My auntie died this morning (my stepdad's sister). She may not be related by blood but she is my family. My parents and I are trying to find a way to get everyone to North Carolina (from Oregon) this weekend for the funeral and just to be there for our family.Period. The few people I've told (who are close to me) have told me that my stepdad should be the only one to go since it's his sister...and "wow that's going to be expensive". Is this what people truly think is important? If it were to happen to their family by blood or marriage, would they just think of how inconvenient it would make their own lives? Is the immediate family affected by this loss not important? My Grammie & Grampie (stepdad's parents) have just lost their oldest child...do they not think that we should be there for them?! How fucking inconsiderate can people be? WHY do they have no compassion? No.fucking.empathy.whatsoever. I can't express enough how ashamed I am of such selfish people. I would spend my last dime (and will) to get my family out to N. Carolina whether I can be there or not. I would drop any responsibilities I have to my job or school to be there for my family. Maybe that's just how I was raised though. Maybe that's not the norm for other people...but shouldn't it be? I don't know. Who cares...all I know is this makes me angry.

Leila,

Baby, please send my love to Auntie Mindy. Knowing death is a possibility doesn't make it any easier to lose the ones you love. If I had been able to raise you, I would teach you that family is everything to us and family does not mean you have to be blood related. Grammie & Grampie have just lost their first baby like I lost you. I will never understand why some children die before their parents. I wish it wasn't so. I wish I never felt this pain and I wish my grandparents never felt this pain. It's not fair. I miss you.

Mommy loves you

:'(

noreply@blogger.com (Kalialani) — Tue, 07 Feb 2012 07:34:00 +0000

FUCK ME! My cousin who is pregnant is having a girl. I didn't think it would be such a big deal. No I did...that's the whole reason I blocked her from facebook. I can't handle this. I want to curl up in a ball and die. It's just not fair why some people can keep their babies and others can't. WHY couldn't I keep my baby?! Why do I have to live through this? Why couldn't He take me instead?!! I would much rather have her live and I die. UGHHHHHH!!!!! I wish my Tutu were here. She is the only BLM in my family who I would ever be able to talk to...but even she's with her baby now. It's not fair! I have nothing more. These pages will be filled with curse words if I keep going. I'm going to cry myself to sleep now. I can't handle this...

Please forgive me

noreply@blogger.com (Kalialani) — Mon, 30 Jan 2012 03:44:00 +0000

I was reading an article that was posted on facebook by another BLM. It was about a photographer that took pictures of babies that have passed for their families. It took me back to the morning you died. They asked (before you died actually) if I wanted to bring in NILMDTS to take pictures for us. I looked over the pamphlet and contemplated for a second. Your daddy told me it was up to me, but I made a quick decision based on what I thought other people would think of it. I didn't know I'd long to stare at your pictures. I didn't notice at the time that I didn't have a picture of me holding you where you could see your face. I've regretted this for the longest. I wish someone would have told me I'd want more of you...that I'd need more of you after you were gone. The nurse also asked if I wanted her to cut a piece of your hair off. Your daddy wanted to, but I said no. All I could think about was how I wanted you in one piece. I didn't want that nurse touching you at all. I already had to leave you in the ground alone...I didn't want to take your hair from you. Now that I think about it I know that it's just hair and that I'm sure you wouldn't mind if I took some to remember you by...but I couldn't bring myself to do it that day. Who can make decisions like that under such a stressful time? We didn't dress you in more than a diaper and a blanket...I should have put you in that little preemie giraffe outfit that I love so much. It's still hanging. Sometimes I lay it against my chest imagining you in it laying on my chest. All of these things break my heart everyday. I miss you. I wish I would have known I'd feel this way when it was happening. I hate myself for it. I just want you back in my arms. I want the chance to do things over. I hope you forgive me. Because I can't forgive myself. I love you my baby.

Love,

Mommy

Rainbow

noreply@blogger.com (Kalialani) — Sat, 28 Jan 2012 09:05:00 +0000

I'm getting baby fever again. My friends are going on having their first and some even second babies now...and here I am minus one and wanting so badly to have another, but not having the means to do so. It absolutely kills me. It's so easy for other people to say "you're young, just have fun for now" or "it'll happen, you just have to be patient"...ugh! I don't want to be patient. I've been patient for almost two years now. Yes I've wanted to get pregnant as soon as possible after Leila died. I saw doctor after doctor asking questions about future pregnancies and how we would get to that point. I was ready. I am ready. It's just disappointing and heartbreaking to think I have to wait even longer. I want my rainbow already. I LOVE pregnancy and everything that comes with it. I loved the anticipation of seeing that black and white image of my baby on the screen. I loved feeling little kicks inside my belly. I loved giving in to my cravings. I loved shopping for my baby. I loved the anticipation of a natural birth and bringing that baby home. I loved thinking I'd have many sleepless nights which meant alone time to cuddle with my baby. I hate this...and I miss her.

Unreal

noreply@blogger.com (Kalialani) — Tue, 24 Jan 2012 08:39:00 +0000

I'm not even sure what to write about since my issue this time is something I want to keep private...but I felt the need to write something today. I took a trip to urgent care this morning and ended up spending about 4 hours being examined and getting blood drawn, then running to the pharmacy for meds and back for more testing because this silly woman made a mistake with one of the tubes she filled with my blood. It was a pretty emotionally and physically exhausting day. My fears haven't been 100% confirmed, but I can feel it in my heart that it's exactly what I think it is. I'll find out tomorrow for sure tomorrow though. It just seems as though anything that can go wrong will go wrong. Maybe it's my negative energy that's bringing all of the bullshit my way, but it doesn't seem to get any easier with positivity either. If what I have is what I think it is, it's manageable...but should I even be in this situation? :-/ It makes me SO angry to think things could have been different. I blame myself though. My body hates me. That's what it is. That and my poor choices is what got me in this predicament. I hate myself for it...but it's too late. I can't change it now. It's done. It's just unreal to be honest. I spent the past few weeks in this dark pit because I miss Leila so much it's physically putting my mind and body through hell, but now this has been weighing heavy on my mind yesterday and today. It's just another thing to add to the list of why I hate my life. I have a feeling it will affect my future and trying to have more kids. At this point I'm probably shit outta luck. I don't know anyone that would want to be with me ever...I'm fucked up. My long list of issues would scare any potential husband away. I'm only 22 and I feel like my life is over. I know it might not be realistic, but that's how I feel. Most women I know that have lost a child/children already have husbands and/or other children. I am not comparing one grief to another, but I feel like if I had these I would at least feel like I have something to live for...but this? I feel like I have nothing. The things that were important to me don't feel so important anymore and the things I want in life aren't coming anytime soon if at all...and that part kills me. I wish I knew the secret to being happy again. People keep asking me what I think would help me feel happy again, but that's the thing...I don't know. If I knew I would have obviously done it already. I think time will just have to work it out for me. I'm just an inpatient person, so maybe the first step is trying to be more patient. What a feat for me!...we'll see how this works out.

**added in a little later** Oh I forgot to mention that the CNA that helped me after I delivered Leila (who happens to be M's friend too) messaged me the other day asking if I'd be willing to be interviewed about my suffering after Leila. I agreed. She's in nursing school and is currently taking a Suffering and Death class. I've always been open about how I grieve and I think it would be good for "D" (the CNA) to learn about how we as BLM try to cope everyday and feelings we experience after our losses. I don't know the questions she will ask me just yet, but I plan on being brutally honest. I hope she learns something from it!

1.21.12

noreply@blogger.com (Kalialani) — Sat, 21 Jan 2012 17:53:00 +0000

I'm sorry I haven't written in my blog for so long. I start a post and then I never finish it. I'll try to get better about posting more frequently, 'cause Lord knows I need it.

Life without my child has a been a hell hole. I'm not going to lie. I've changed so much. It will be two years in just a few months and I still don't feel like I've gone anywhere with this. I don't cry as much as I used to and I'm able to go through stores and actually look at kids and smile...but my grief still remains the same. The difference is I've started seeing someone for it. I actually like talking to her, but so far it hasn't made a difference...will it ever though? I don't think so. I'm not really sure the point of it actually. It makes me feel better for the time being, but then a few days or weeks later...it's back. I can't shake this dark feeling I've been having lately. A couple weeks ago I got a tattoo on my wrist of Leila's name and that night is when I realized I'm pretty sure I'm depressed. I've been acting differently...I don't know how to explain it, but apparently my mom and cousin can see it too. I'm distant. I feel it too...I just don't want to do anything to change it I guess. I just want to be alone. The rest of my life I suppose. That's a lonely and sad life if you ask me, but I don't want to bring anyone else down with me. I think I'm depressed..but I'm not sure. I'm able to function on a daily basis...I can get things done. I can even feel happy on certain days, but overall I hate my life. I feel no hope. No motivation to live. Don't get me wrong I would never kill myself, but I do think about if I were to die today...I would be happy. It sounds strange and morbid, but I'm not afraid of death that's for sure. I'd almost prefer it to this feeling of emptiness in life. I feel completely empty. I feel like life and people are pulling me in all different directions until they can't pull anymore. I feel weak and stretched to my limit. I'm tired all the time and just want to sleep my days away. I broke up with M back in July and that has taken a toll on me. I thought many times I would get back together with him, that now is just not the right time...but now I don't even want to be with him. That kills me. I feel like another person has died. Only it was our relationship and the last direct connection to Leila. Last night he and I went to the movies. He held my hand and told me he was happy we had her. Tears came down so fast I couldn't stop them. It took a lot of energy to try and keep my feelings inside but I just wanted to scream. I hate that she died. I absolutely hate it. There's this big lump in my throat that I just can't swallow anytime I hear of a new person pregnant in my circle of friends or family. I'm not happy for them. I hate myself for it. But I hate that I can't have my baby even more. I just wish I could change everything...obviously I can't change what happened, but I can change the way I feel about it right? Maybe I just don't want to. I don't know...I really don't. I don't get pleasure out of the things I used to anymore. Or maybe I find pleasure in things that I never did before and that's the problem. I'm self-destructive. Not because I want to be...I think. None of this is even making any sense. That's why it's all so frustrating to me. Nothing makes sense anymore. WHAT am I supposed to learn from all this? I just need some direction. Turning to God didn't help me. I wish it did. I thought church would help but I know that the institution of church just isn't for me. I'm not religious, just spiritual. I choose to have my own relationship with God outside of churches, priests, bibles, etc...but it hasn't changed the way I feel about my life. I just hate it. On top of that, I'm tired of people telling me what I should do. It's MY life and if I make certain decisions and eventually learn that they were the wrong decisions, DON'T tell me "I told you so". That shit just pisses me off...Anyways I think that's enough complaining for one day. Here are the pictures of my tattoo and Leila's grave I visited last weekend...

I love her stone now just as much as I did the first day I seen it.

Leila,

I wish I could have held you a little longer and took more pictures than I did. I wish I would have known what I know now. It kills me everyday to think I could have had more if I would have known. I could have had more memories if I had written more about you when you were in the NICU. I could have had more pictures to look at now if we had taken more while you were in the NICU. I wish I would've had more support while you were in there. Maybe if I'd had more hope for you in there, you would have lived. I love you so much I can't stand that you're not here with me. I know I'm selfish because you're in the best place you could ever be...but I want to be there with you. I'm jealous that you're with some amazing family members up there and not with me. I'm jealous that I can't be one of those Mommies that watch their babies grow. The most amazing feeling I will never forget is holding you against my chest. I can feel your warmth now and wish you were there again. I miss you more than words could ever express. It's true, I swear. It breaks my heart each day I wake up and you're not there. I miss you SO much. I hope I see you soon. I know it won't be soon enough though.

Mommy loves you!

Christmas Eve

noreply@blogger.com (Kalialani) — Sat, 24 Dec 2011 16:21:00 +0000

Sorry all for not writing for so long...life has been so crazy it's just been really hard to keep up with my blog anymore :(

Today though I felt I had to write...facebook has this new "timeline" profile where you can easily go back and look at all the past posts, comments, pictures...everything you've ever posted on facebook before. It's a gift and curse all in one. Of course I was curious to look back at my posts from when Leila was born. I thought it was a good idea at the time...but it only made me feel worse. I had so much hope for her, for us...and then on April 9, 2010 that all came crashing down. I remember not wanting to post anything about her dying that day...so I waited. Then people started asking me for an update with her and I finally had to post something on the 13th. I remember this chunk of time like it was yesterday...how I felt, what I was thinking, what people said to me. I was crushed to say the least. Looking at those posts honestly ruined the holidays...not that they were so spectacular to begin with, but Christmas is my favorite holiday. Now that Leila is gone and I have no other children, it's so hard to be really excited for the holidays. All the presents I'm buying for other people has got me thinking about how I should be buying them for my baby instead. I'm not buying clothes or toys for her this year...only things in memory or in honor of her...and I.Hate.It.

I miss her so much.

Leila,

I'm sorry I haven't written to you in so long, but I think about you daily, no lie...and even more than that. I've seen you in my dreams recently and I'm so grateful for that. I wish I could see you more than that, but I know I can't be selfish. I can't believe your second birthday is coming up so fast and I'm not really sure what to do this year. Your mom has been so caught up in trying to keep busy, that I haven't even been able to sit down and just breathe for a minute. I hope to be able to get back to doing things I love...mostly crocheting...but we'll see. I know your Daddy and I aren't together anymore but we plan on coming to see you together. I hope you know we both love you SO much and think about you constantly. You are never forgotten, my baby.

Mama loves you sweetie.

Why do the good die young?

noreply@blogger.com (Kalialani) — Sun, 26 Jun 2011 16:34:00 +0000

I haven't posted here in a long time but I wanted to do a quick update...hopefully quick

On May 26th my mom and I were called and told my Uncle was in the ICU. He had just undergone kidney surgery and had some heart problems during the surgery. We rushed to Washington as fast as I could where we spent three of some of the longest days of our lives. There was always someone holding my Uncle's hand at all times. On May 28th my cousin asked me if I wanted to hold my Uncle's hand. I sat next to my Uncle held his hand and rubbed it hoping he would wake up and smile at me but he was under a medically induced coma and couldn't do anything like that even if he wanted to. The nurse noticed something wasn't right and checked for a pulse, they couldn't find it. We were told to leave the room while they tried to get him back. The minutes seemed like days. We finally were called back into the room but were told that with all of the cardiac arrests he'd had the past few days, the strain on his heart was too much to handle now. As a family, we decided we had put him through too much the past few days. He went to heaven on May 28, 2011 around 7pm. That was the day after my Tutu's (his sister) 9 year angelversary. This would be the second death in my family after Leila. I can't even begin to tell you the hurt I feel after the death of my Uncle Kimo. I never thought this day would come so soon. I was JUST with my Uncle a couple weeks before...I don't understand why the good die young...

When my Tutu died my Uncle kind of took over as the "dad" and "grandmother/father" my mom and I were missing in our lives. He was with us through every important event in our lives...and even the not so important ones. He was there when Leila was born. He drove 3 hours each way just to see me and Leila. He brought dinner to the hospital for the whole family. He was there when Leila died. He was there for weeks afterwards. He was always there. My heart is still so heavy...especially for my cousins and auntie who are now missing a Daddy and Husband. He was the best Daddy anyone could ever ask for...I just can't believe he's gone...and I was the last person to hold his hand while he was still alive :(

His funeral was almost 2 weeks after. For the last two funerals I recited the Lord's Prayer in Hawaiian. This one I would do the same. It brought me all the way back to 9 years ago when I first recited it at my Tutu's funeral. I couldn't keep my composure. This time was the worst as far as anticipating the funeral. I was so nervous I could vomit. To get up in front of hundreds (yes there were hundreds) of people at his funeral and recite the Lord's Prayer in Hawaiian...I didn't know if I could do it. I prayed so hard beforehand for Leila and my Uncle to give me strength. I got through it just fine. I almost felt numb during the whole funeral. It was a beautiful service if there ever was one.

Now it's almost been a month and it hasn't gotten any easier. I watch my cousins as they sit quietly thinking about my Uncle and why this has all happened to him. I know the feeling. I would never wish this on anyone but I wonder why him? I'm going to be honest...why couldn't God take someone else? Someone who has done nothing but torment my family endlessly and laugh in our faces when someone we love so much dies? :( I just don't understand...

I'll leave with that...

Leila,

I can't tell you how jealous I am that most all of my favorite people are now in Heaven...I wish I was there with you all. I know you guys are all happy & healthy and I can't imagine you guys miss it down here...but I miss you all. Please give Uncle Kimo the biggest bear hug from me and tell him I miss him so much. I miss all of you. I love you all to pieces and hope that someday we will all be together again. I love you my sweet baby.

Love,

Mommy

Dead baby joke...

noreply@blogger.com (Kalialani) — Sat, 04 Jun 2011 03:39:00 +0000

I love how my own cousin makes a "dead baby joke" on her facebook. When I comment with "lovely" sarcastically of course...she "likes" my comment. THEN I get a text from her saying, "My post wasn't anything towards you. Sorry if you took it the wrong way, and thought it was to you, it wasn't my intention whatsoever. Just know my posts are never directly to you, unless I say so. It was an inside joke, and I really shouldn't have to explain myself what it was for. But yeah, again; I'm sorry." Um notice the part I put in bold...how would you take that? Because I take that as her saying FUCK YOU for being offended, get over it...Am I wrong? I want to slap the shit out of her...excuse my "french" I am pissed! UGH *#&$(*&^%$#$%^&*&^%$#$%^&^%$#$%^!!!

Mother's Day #2

noreply@blogger.com (Kalialani) — Sun, 08 May 2011 20:06:00 +0000

I'm sitting here hugging Leila's blanket and staring at her picture. I hate this holiday...I really do. I'm not really a mother anymore...at least I don't feel like one at all. People walk past me and don't see a child in my arms...they don't see me as a mother and neither do I. The first Mother's day I had was exactly a month after Leila died. It goes without saying that it wasn't easy at all. I guess I thought it would get easier...who was I kidding? I'm sitting here bawling my eyes out feeling so sorry for myself again...and here I go again asking the same questions...why did MY child have to die? Why her? Why ME? On top of that most of my own family doesn't recognize me as a mother :'( That hurts the most, but I get it. They either don't feel comfortable saying it because they think it'll make me upset..or they don't think they should say it because I'm NOT a mother anymore...either way it's all shitty. This is #2 of MANY to come...devastating...I'm devastated, heartbroken and emotionally drained. I don't know how I've made it this far and knowing I have many more to go (unless of course something happens to me unexpectedly) just kills me. Why does anyone have to go through life with their child/ren dead? It doesn't make sense...never will. No matter how many times I try to rationalize it, it never.gets.easier...never. My biological dad just added me on facebook...random and weird...and do you think he'll say Happy Mother's Day to me? Fuck.no. I'd roll over and die before I'd expect to hear anything from him acknowledging Leila...but does it hurt my feelings? Hell yes it does.

Mustafa gave me a kiss this morning and told me Happy Mother's Day before I went to work. He's a sweetheart and doesn't really know what to say to make me feel better, but I appreciate the acknowledgement. My family and I went to breakfast this morning...of course everyone was there for Mother's Day. Mothers and babies EVERYWHERE...I shouldn't have gone but it was for my mom that I went. My uncle called my mom to say Happy Mother's day to her and I. I just started bawling in the restaurant :'( I seen one lady stare at me as I burst into tears and do you think I gave a fuck? NO. I really don't care anymore who feels uncomfortable with what I do or say about my baby dying. I'm over it. Anyways...wishing babyloss mamas everywhere a peaceful Mother's Day and wishing I could give you all a hug in person. Love you guys, thank you for being my rock.

Leila,

Mama hasn't been here in a while. I haven't forgotten about you of course. I'm sorry I didn't come see you while I was in town yesterday. :'( I really wanted to but no one could make time to take me over there. I'm really sorry sweetie. I miss you SO much and today hurts my heart knowing that I don't get to spend it with you. You are all I want for Mother's Day and I can't have you. It just isn't fair. I hope Tutu and Tutu Nui are taking good care of you up there and I don't doubt that they are. I only wish it was me being able to do all those things for you. Please wish Tutu & Tutu Nui a very Happy Mother's Day for me baby. I miss you all and love you with ALL my heart.

Love,

Mommy

4.10.10 your funeral

noreply@blogger.com (Kalialani) — Sun, 10 Apr 2011 23:04:00 +0000

I had plenty of time to get ready, but I didn't. I couldn't put on make-up and curl my hair for your funeral. Maybe that was my way of saying fuck you life. (excuse my language) I didn't give a shit about anything but you. I held you instead of getting ready. I felt like there was a lump stuck in my throat the whole day. Uncle Josh had come to town from Idaho the night you died but I only seen him the morning of your funeral. I didn't want to leave you in the room alone. I came downstairs, saw him and cried in his arms. I couldn't believe he was here for my daughter's funeral. How did we get here? The kids (your aunties and uncle) hadn't seen you and didn't even know you were in the house. We didn't want to freak them out, so we didn't tell them. We were getting ready for the funeral and the kids went with Uncle so we could take you with Tutu and Grampie in their car. We picked Uncle Jordan and Chris up on the way out. I could barely look them in the face. On the way to the funeral was extremely stressful. I cried the whole way. We finally got there where everyone was awaiting our arrival. We were late...like always. I stepped out with you and Auntie Nani & Uncle Makoa wanted to see you. They gave you a kiss on the forehead. Auntie Nani is a softie and so is Uncle Makoa so they cried really hard as soon as they seen you. I could see that your death really affected them even though they hadn't met you until now. I sat with you on the chairs set up around the hole they had dug for you. I was the only one sitting. It was awkward as hell sitting there with you as everyone stared at me. I didn't want to be there...well of course I didn't. Daddy, Uncle Waled and Uncle Haythem took you and prayed over you as they laid you in the ground. Daddy had never been to a funeral his whole life. His daughter's was his first...how fucked up is that? Papa shoveled some of the dirt and put it over you. We watched until the whole grave was covered. They stuck an ugly gold plaque to mark where you placed. I'm happy (and not) to say that that ugly thing is replaced with a beautiful grave marker now.

The first year after your death is now complete. Do I feel any different than I did the day you died? In some ways yes and others no. I still can't believe you're gone and I hate to accept it, but I have (sort of?). I've changed...a lot. I've matured a lot but I'm also a much more bitter person...unfortunately. I still can't look at a pregnant woman and be happy for them. I still get jealous when I see moms toting their babies around in stores. I still hate that I walk past the baby section and am not getting anything for you. I hate that all of my friends are starting to get pregnant for the first time and I have to see their bellies grow (no offense friends), I hate that no one really gives a shit anymore about me being sad, they're over it. I hate that I feel pity for myself...is this me being pitiful? who knows...I could name tons more but I'm out of energy being so negative.

Today was not a good day. Matter of fact, it might have been the worst along with the day you died. I just miss you so much. What more can I say?

I love you Leila.

the day you died 4.9.10

noreply@blogger.com (Kalialani) — Sun, 10 Apr 2011 22:36:00 +0000

I've gone over this day a million times in my head. It's been a year and still the details of this day are engraved in my memories. That morning they showed me the results of your x-ray...I knew what the outcome would be, I just didn't want to believe it. I thought there could be some other solution...but there wasn't. You were too young to even attempt surgery on your intestines. They told me you wouldn't survive. But really I thought, how could they know? They thought you wouldn't survive even being born and look at you then...You were doing so well. I accepted their answer though. I didn't want to put you through anything more than what you already had been through. Even though I want to believe you could have survived the surgery, I don't think you would've. It's not that you weren't strong enough...you were. You had strength beyond anyone's imagination. It was your body that wouldn't make it. I don't blame it. It was my body's fault you were born so early anyways. I blame my body. I walked to your bedside and cried. I thought maybe a miracle would happen. Maybe your intestines would heal themselves by some miracle and maybe your brain hemorrhaging would leave no damage. That would only happen in a story book though. Not in real life. I had to accept the fact that you were going to have to leave us that day. Your body was weak, I could tell the fight was over. Your daddy and I sat by your bedside and just stared at you. We had no words. None of us ever thought this day would come...even knowing how low your chances for survival was. Daddy hadn't got to hold you yet. Today he did. The nurse took a few of your IV's out and handed you over to Daddy. He held you and cried so hard. I watched the tears stream down his face as he looked at you and touched your tiny fingers. I don't even recall how much time had passed, I only remember it went fast. It wasn't too long before your heart beat started slowing down. We knew it was time for you to go. Daddy handed you to me and I held you. Time didn't slow down at all. I whispered in your ear and told you it was OK to go and kissed you goodbye. Your eyes opened one last time and it was like you went to sleep...peacefully. They turned off the ventilator helping you breath. I felt your fingers and they were already cold. The color from your face started to leave. I knew you were gone. I walked with you in my arms past other babies, mothers and nurses. They looked at me because they knew. I was crying so hard carrying you. They put the picture of the leaf with a drop of water on the door. I knew that was the sign for don't bother the grieving family in the room. I hated that sign. Hours went by in the Butterfly Room. You died at 9:31am and by the time we were done in the room, it was close to 4pm. Daddy washed your body with Uncle Haythem while I went to the NICU waiting room to see our family. Sitting in that room was absolute torture. I watched families come in with Congratulations balloons waiting to see the newborn babies. I couldn't believe I was there. How could I be sitting in that room while my dead baby was in the other room?...and I was still alive. How could I be "ok"? Why didn't I die with you? I still don't know how I survived that...how I'm surviving it. I can't even begin to tell you how much my heart aches for you. We tried to make it to the funeral home an hour away to have you buried that same day. I couldn't bear leaving you at the mortuary by yourself...we ended up taking you home for the night. I treated you like you were still alive. I looked at you, kissed you, held you the whole time. If I didn't hold you, Tutu held you. I don't even think I took a shower. I remember pumping that night. I had waited to pump for too long, so my boobs hurt. It was like life's sick way of torturing me even more. Reminding me that you wouldn't need that milk. Daddy and I stayed at Tutu & Grampie's house that night...well so did you. You slept right next to me...and surprisingly I got a lot of sleep. The next morning is when it hit me...

4.8.11

noreply@blogger.com (Kalialani) — Sat, 09 Apr 2011 02:37:00 +0000

This time last year I was holding my child. We took a nap together. I spent hours in the NICU that day just dreaming of the day we'd be able to take her home. That night was NICU parents pizza night. I wanted to go and meet other parents and see how they all were coping. It was good for me. I was the first one there, so I had a long talk with the woman who planned the gathering. She had 3 kids, all born premature. Her youngest was born at 26 weeks. She survived and came out with only a learning disability. That was when I held on to my hope, despite what the doctors told us. All the parents talked about how they went into labor and what was going on with their babies now. One of the ladies had twins. I kept thinking how rude she was when I heard how she was talking to another parent. I don't remember word for word what she said, I only remember her telling the other mother that she was lucky that all her baby went through was such and such...at least he/she was still alive. One of the mother's twins died...that day I thought how rude. Now I understand. She was in pain. Of course she was, she was a BLM...only I had no idea how she felt...until the next day. When it was my turn to talk I told our story. You were the youngest out of all the babies. Everyone was amazed you survived. They told me they'd pray for you. I was so thankful and walked out of that room feeling so much better about the decisions I had made. Knowing there could be a chance you'd live and live a "quality life" even if that chance was so little...I'd take it. I went back to the NICU around 9pm to say goodnight to Leila before I went back to my parents house to sleep. I would have spent the night at the NICU if I could. Anyways, when I got back is when things started going downhill. I took one look at her and knew something was wrong. Her stomach...it was distended, hard and it was clearly turning purple. Her toes were turning purple. I asked the nurse what was going on and she looked perplexed. I could tell she knew something though. She told me she wasn't sure but when she came in for shift change, she noticed something different as well. She ordered x-rays to be taken immediately. They had an idea of what it was but wanted to confirm before they worried me. I stood back as they took x-rays of her belly. All the while I was praying that everything would be OK. That night is when everything changed...

Leila,

I'll never forget that day. You were so peaceful in my arms. I held you so close and loved every single minute of it, not taking any of the minutes for granted. Had I known you'd get sick that night, I would have stayed. I had no reason to leave you, I only wish I knew that sooner. I wish I would have had more time. I don't know if you knew you were going to die and only waited for me to be able to hold you or what...all I can do is hold on to that moment for the rest of my life. I don't want to ever forget how I felt holding you in my arms for the first time, and then again the very next day. Those two days were the most amazing days I spent with you in that NICU. I hope you know that I love you more than anything baby girl. Mommy misses you.

Love,

Mama

Remembering 3/31/10

noreply@blogger.com (Kalialani) — Fri, 01 Apr 2011 07:20:00 +0000

So...right now I'm EXTREMELY emotionally drained...I wasn't going to do this update til later on today, but I just can't sleep...or choose not to I guess. Dr. called me this morning (3/30/10) and said they did the ultrasound on her brain...it wasn't good news. They found a LOT of bleeding and he wanted me to come in (with my family he said) I immediately think the worst and start crying. I asked him "what does this mean?" He wouldn't tell me over the phone, he insisted that we come talk to him in person. We come in, sit down, he explains to us that she has hemorrhaging on the left and right side of her brain. The left side has a grade 2 hemorrhage and the right has a grade 4, which he says if this was the case in an adult it would definitely kill them...the only reason why she isn't dead is because she's a baby and her brain (skull) hasn't closed up yet thus relieving the pressure that the bleeding would normally cause in an adult brain. The bleeding in her brain is not really the concern though, it's what the bleeding leaves behind (scar tissue)...the bleeding will eventually work itself out, but because there was so much blood this causes fluid to fill the ventricles expanding them and damaging important functions of the brain...neurons need room in this part of the brain to fan out and "talk" to other neurons...the less connections these neurons make, the greater the possibility is for brain damage...anyways there is just SO much information we were given today...NOTHING I wanted to hear. The Dr. basically told me again 2 options: choose life and fight as hard as we can to "save" her which just means they could put in her brain what's called a "shunt" (a small hole in the brain that allows the fluid to be drained)...this doesn't mean she's "fixed" by all means...they still are not in charge of what damage has already been done...that's up to God. Doc says that after this there is almost no chance that her quality of life would be a "good one"...not exactly in these words, more tactfully put of course BUT that's basically what was meant. Quality of life meaning she may have a disability like cerebral palsy, epilepsy, she may never do things "normal" babies do such as walk, talk, crawl, eat, etc...she may be mentally retarded...there were SO many things that could happen I can't begin to list them all...I'm sorry so back to my options...number 1 was choose life and number 2 is basically take her off life support right now...well I can tell you this much, I will NOT be taking her off life support...if she was meant to die right now I believe it would happen whether she's on life support or not. She's still functioning @ this point, she's taking her feedings, pooping, I mean everything a baby should do...no she can't breathe on her own but if she was meant to die the machine just wouldn't be able to help her stay alive regardless...that's what I believe anyway...Sorry if I'm rambling I just want to make sure I get everything out :/ like I said before, there was SO much information given to us today it was overwhelming...I don't really feel like reading over what I wrote because it's just too much but I just really need to pray on this...I need some guidance as to what I should be doing...I don't know if I am/ have been making the right choices for her. I mean of course I want to believe that by giving her a chance to live that WAS the right choice but if this turns into her "quality of life" not being "good" at all then I'm just not sure...I just want her to be healthy first and foremost and then HAPPY...that's all I want...I don't understand why all this is happening. I really wish I knew. If anyone had a preemie baby with brain hemorrhaging please just tell me your story...good or bad I just need to know how everything worked out...do you feel you made the right decision?? Anyways...everyone I know I always say this but PLEASE PLEASE PLEASE pray for Leila!!!...all I want is POSITIVE prayers though. I don't want anyone thinking about anything bad happening because I believe when you think about those negative things you attract them to you...
Thank you all for listening to me rant!
~Kalialani

(part 2)
So today was REALLY not a good day for me...I'm SOOOOO SAD I'm REALLY tired of my baby's nurse telling me the same crap the Dr. told me...yes, thank you, I know my daughter might have ALL these disabilities and she might be a vegetable...well she might not! so how about you tell me that too?...I can handle the bad news...well maybe I can't, but they make it seem like I'm not fully understanding...I'm NOT STUPID, I understand the situation, I'm just under a lot of stress right now because OF COURSE I want my daughter to live...who wouldn't? and OF COURSE I don't want to hurt her! but who are we to say that she doesn't deserve to at least TRY to live and fight? We've already come this far. I can't say "pull the plug", HELL NO, I won't!
Today or maybe it was yesterday?...(all the days run together for me now :/ ) they tried to put a PICC line in :/ They STILL can't get it in (her veins are too small) they said there have been smaller babies that they could get them in (it's not about her size) it's just about the size of her veins...so they're going to wait a few days to give them a little time to grow and then they will try again...I REALLY hope they get it in soon because they said that IV for her nutrition needs to come out because it looks like an infection will start to form around her belly button where the IV is. It's turning a little red so they're keeping an eye on it and cleaning it with alcohol but it really needs to come out!
They've increased her feedings to 4mL every 2 hours. She had a little residual I think because it's gone up pretty significantly kind of fast, but they're keeping an eye on it. They have her in a more upright position so that if she spits up it won't go back into her lungs (I believe that's what they said) :/ anyways I think that was all for today...First and foremost I need to pray that her veins get bigger so they can get this PICC line in and take out the IV in her belly button because if she gets an infection she probably won't survive it
PLEASE PRAY FOR LEILA!!!
Thank you all SO much!!
~Kalialani

Remembering 3/29/10

noreply@blogger.com (Kalialani) — Fri, 01 Apr 2011 07:20:00 +0000

So today the nurse says Leila is back on oxygen rather than breathing room air :/ It's OK though I know she'll be back on room air as soon as she's ready! Her feedings are now 2mL every 2 hours rather than every 3 hours. I really think my milk is helping her! :) and by the way her skin looks GREAT! If you would have seen her the day she arrived compared to today, her skin looks SIGNIFICANTLY better :) She's getting more pigment to her skin and it doesn't look so transparent like it did before. They say the bag that is around her will probably come off when she's between 2 to 3 weeks. I'm pretty excited for that to happen. Then I can see her body and she won't look like she's just wrapped in a trash bag :/ She's back on insulin, but that's expected to change pretty frequently...one day she'll be on it, the next she's off!...One of her tubes that was in her artery checking her blood pressure has come out, so now the only tube in her belly button is the IV that gives her nutrition :) Once that comes out and she's off the ventilator then I can hold her :) (God willing) I think that's pretty much all that's gone on with her today.

Thank you guys for reading!
~Kalialani

This REALLY Hit Home spoiler alert

noreply@blogger.com (Kalialani) — Fri, 01 Apr 2011 05:42:00 +0000

Did it anyone catch Grey's Anatomy tonight? I called it. Don't read if you haven't watched it yet and don't want to know what happens...

I knew they were going to get into a car accident and end up delivering the baby early. 23 weeks...Can you say WOW?! This episode REALLY hit home for me tonight. Leila was born 23 weeks 6 days. The baby was tiny...1lb 1oz...Leila was bigger at 1lb 7oz, but still tiny...I held my breath as they carried the baby out of Callie's belly and tried to revive her. When she took that first breath I let go and the tears did not stop flowing. It was SO overwhelming. It brought back so many emotions of having to give birth to Leila so early and so little. It's starting to feel like "remind Kalia she has a dead baby week". So many triggers, let me tell you. Oh and when "big" Grey is telling Derek how fucked up (excuse my language) the universe is, I nodded in agreement and laughed. She's SO right. I can't find ANY reason the universe chooses people randomly to let suffer...maybe I haven't gotten to that stage where I can understand and appreciate what I've been through like some others I've seen...I'm just not ready yet. As far as the baby goes...I have no faith she'll survive. It sounds heartless and cruel, but I already know the ending to so many stories like mine and so many others'...how can you possibly believe she'll live? Callie will end up being a BLM just like us. :'( I know she's not real and she's just a character in a story, but we're SO alike you just can't help but feel connected to her. I absolutely have to watch next week. It's like I want to relive my experience. I just want to feel normal again...like I'm not the only one that this has happened to...like I'm not the only one who feels the way I did about having a micro-preemie. So many emotions...

On another note, today I met THE sweetest woman. For my senior capstone I decided to take a Lesbian and Gay class. I said something about my family and at the end of the class one of the women came up to me and told me how brave I was for speaking up. It was about the Hawaiian people and how (haole) Americans have stolen our land and completely disrespected our culture and values...anywho, we got to talking about how my cousin recently "came out". My auntie texts me the other day and said she feels like she "lost her son". I, actually having lost a child, & understanding how this feels, can tell you that having a child whose gay does NOT compare to having no child at all. I explained to the woman I met how I HAVE had a baby and lost her and how much of a slap in the face it was to hear my auntie completely take for granted the son that she STILL has. She's so worried about who he decides to love, that she can't appreciate that her child is still healthy and ALIVE and that's what really matters most. She needs to accept him for WHO he is and stop worrying about shit that he did not choose. Anyways, this is getting off topic, what this is really about is how sweet the lady was to me and how much we connected. She hugged me, rubbed my back and was genuinely sorry that I had lost my child. We talked for much longer after that and I can definitely say I've found a friend in this 60 something year old woman. She's the sweetest "stranger" I've met in real life. Thank you L for your kind words today.

Leila,

Did you WATCH that episode with me tonight? Oh my goodness all these thoughts went through my head about when they tried to revive you. Did it take long? Who was there? I don't even know the answers to these questions because they took you away so quickly and I was out of it. Why didn't I even think to ask these questions? I wish we could have that happy birth moment every parent dreams of having when they're pregnant with their 1st child. Now my only thoughts from here on out will be is he/she alive? It's terrible, I know. I hope Mommy can one day be that naive mother I once was, but I don't think that's ever coming back...

I miss you little one...you can't imagine how much...Even though you're gone I still look for ways to keep you near me...things to buy that I can remember you with...things to do in memory of you and it seems that every single thing I do these days IS because/for you. Ya know, one thing I've realized today is that you've made me a much more passionate person. I think about what I want, and I imagine myself doing it/getting it and eventually, I will. I have so many plans for the future, which is pretty silly considering we all know how much those don't work. All this is kind of vague, but I think you know what I'm talking about. Oh about today, was that you? I seen that book called "Roses" by Leila something in the bookstore a few weeks back and today I seen it again in a lady's hand on the MAX. Is that you saying hello? :) I smiled when I seen it because it felt like you saying hello. :) Sweetie, will you come to me in my dreams tonight?? I've missed you so much and have been waiting to see you again. Mama has to sleep now, but I hope we'll see each other again soon.

Mama loves you baby girl!

Remembering 3/27/10

noreply@blogger.com (Kalialani) — Mon, 28 Mar 2011 03:07:00 +0000

Each day I will be posting my updates from this time last year while we were in the NICU...just as a reminder of our time with Leila and to remember how hard she fought.

Today my family and I went to see my daughter Leila. She looked really good. It seems like everyday her skin is starting to look better and better. It doesn't look as red as it used to...seems like she's getting more color. They took all of the junk off of her so I can see her beautiful face now :) There are still tubes and everything just less tubing around her face...She is still on the ventilator. They tried to put the CPAP on her the other day but it only lasted for a few minutes until she got tired and had to be put back on the ventilator. They say they'll try again when they feel she might be able to handle it better. I hope that time is soon...but no rush Leila! ...you do everything on your own time! My mom and I brought a picture of us to put near her bassinet. Unfortunately the nurse made us put it pretty far away from the bassinet but I think she knows we're there regardless...it seems like none of the other babies in the NICU have pictures or anything near them :( Easter's coming up and my mom and I plan on decorating around her bassinet lol I think we'll be the only ones but...whatever! :D Leila will appreciate it! OH today my mom and I met the sweetest couple! Their baby Andre is my baby's neighbor! Pretty much the same thing happened to her (Vicki)...she went into pre-term labor for no apparent reason...she was only 8 weeks early though. Her baby was born at 4 lbs and I can't remember how many oz. Looking at him and then looking @ Leila he seems HUGE, but of course he's also really small too compared to the "average" baby. I mentioned the couple because I wanted you all to pray for their family as well! They are also learning to deal with their new lives and trying to cope with not being able to bring baby Andre home with them...I hope they are able to take him home sometime soon!On another note let me tell you a story!...not a good one but none the less a story I guess...today while SO and I were visiting with Leila he saw something on her face...it was almost like a scar/scab...because apparently one of the nurses was taking the tape off of her chin (from the chin strap they had on her) and since her skin is so delicate it is easy to rip/tear...WELL this woman DIDN'T take off the tape properly and basically ripped my baby's skin off!!!!!!!!!!! UGH I was SO angry I can't believe this happened and NO ONE even had the decency to give one of us a phone call...another nurse told us about it and said that nurse hasn't dealt with babies this small or this early (I can't remember which one it was) but if that's the case then WHY THE HELL IS SHE AROUND MY BABY?!!! This is NOT acceptable...I'm calling her Dr. tomorrow and letting him know how upset we are...I know it was an accident but we can't afford to have "accidents" and if there was one we should have AT LEAST been notified...my SO was SO upset :( he kept telling Leila how sorry he was and that he wouldn't let anyone hurt her again. UGH this makes me feel SO bad just talking about it...On a happier note...today while SO was visiting, the nurse told him that he could change her diaper!! :D he was too scared though...he didn't want to hurt her :( I was kind of upset but I understand...he will try next week though! BUT he was able to take her temp. and rub Aquaphor on her body to keep her moisturized...after that he said the nurse should have let him rub Aquaphor on her body first because now he feels like he can do anything! lol I took pix! it was SO adorable while he was doing it and he was talking to her about how he would do it all the time for her to make her comfortable...WELL I think that's all for today...until next time!

Take Care everyone,

Kalialani

I remember this day like it was yesterday...I'm sure I will say that about everyday I remember your days in the NICU. It's all still so fresh in my mind. The warmth of your skin, the tight grip of your tiny little fingers, your daddy's toes, all of that hair, your little whimper...it all seems so familiar. I miss you like no other, my sweet baby.

Love,

Mama

3/22/11 Happy 1st Birthday baby girl

noreply@blogger.com (Kalialani) — Wed, 23 Mar 2011 23:26:00 +0000

I didn't really have time to write yesterday, but I wanted to update on Leila's 1st birthday. First of all, I can't even believe so much time has passed already...where does the time go?? The day before her birthday was worse than the actual day itself...which was weird for me. I went to work like any other day (3/21) and a simple question was asked..."how was your weekend?" I started bawling telling my boss how shitty is was. Poor him. I felt bad for making it awkward for him, but I couldn't help it. He told me I could take a minute to myself if I needed it. I definitely took advantage of that. I have yet to believe that this is truly my life. It's just a slap in the face everytime I think she should be here and she's not. Mustafa drove me to work the other day and all I could think about was the fact that Leila should be in the backseat buckled in her carseat...why isn't she then?...

On her actual birthday we went to the cemetery to visit her. I was SO happy her gravemarker was placed finally a few days before (which I forgot to post a picture of...remind me please). We stopped by Safeway to pick up some flowers, where I actually found the PERFECT dragonfly balloon. Or should I say it found me?...or like Ann says, "Leila wanted that and made you get it for her." :) I like that reason better. We all got her like 3 cards each because I just could decide on one, I swear they were all so perfect. Again, she probably wanted those cards for her birthday :) We put everything in her area and took pictures. My little sister (10 yrs old) started bawling :'( I wasn't crying at the time, but seeing her cry touched my heart and I just couldn't hold it in any longer. Oh p.s. I just wanted to give HUGE thanks to everyone that acknowledged Leila's 1st birthday and even those who didn't publicly, but thought of us on that day. I swear they made all the difference in the world. We got SO much support from all of our BLM (Leila's Aunties) and a few other people. I just can't thank you all enough. We weren't able to light sky lanterns last night like I wanted to (since it was raining), but we plan on doing that as soon as the weather allows us to.

Leila,

My sweet, beautiful, little BIG girl...I can't believe you're 1 year old already. I just know that you were thrown a HUGE party...with all your cousins up there...there is bound to be some trouble ;) Did you read Tutu's poem she wrote you for your birthday? Doesn't she always know the words to say? She truly has a gift, I'll be sure to post that soon so everyone can see how much you're loved and remembered. :) I keep wondering how you look now. Are you walking yet? Did your hair get long and curly yet like I imagined? Did your Tutu Nui throw you a party up there? She's always the life of the party :) I hope my Tutu Nui danced hula for your party. She couldn't wait to be up there to "dance with the girls" again. I miss you sweetie. You mean everything to me and I want you to always know that. Each year when it seems others might have forgotten your special days, just know that your mama will always remember and celebrate your special days...and SO many other people will for that matter. You've touched SO many lives in your short time here and even after you went to heaven. I'm still getting messages from people that have followed your story from the beginning and continue to think of you often. Thank you "N" who messaged me today. You truly made my day with that message. I promise I didn't think you were some weirdo lol :) Mama loves you Leila and I hope you had the BEST birthday ever. I can't wait to celebrate WITH you someday. Miss you baby girl!

Love,
Mama

Dragonfly Dreams

Collateral Beauty

Memorial Day weekend

Going private soon, send me emails!

Just like that

I feel you in my dreams

Miss you

Happy 2nd Birthday Leila!

I'm ashamed to say...

:'(

Please forgive me

Rainbow

Unreal

1.21.12

Christmas Eve

Why do the good die young?

Dead baby joke...

Mother's Day #2

4.10.10 your funeral

the day you died 4.9.10

4.8.11

Remembering 3/31/10

Remembering 3/29/10

This REALLY Hit Home **spoiler alert**

Remembering 3/27/10

3/22/11 Happy 1st Birthday baby girl

This REALLY Hit Home spoiler alert