This morning, I am feeling robbed. I went to sleep thinking of how to make Ruby's little birthday celebration special on Thursday, and dreamed about it all night. But I woke up thinking about how it will never be what I want it to be, because she is not there. It's all I want. It is all I want for FOREVER.
I look at picture of myself from January-August 12 and I feel sick to my stomach. I look so happy. So content. Even with a very sick child, I am content to have her. To have both my girls in my arms. I wonder, will I ever feel complete joy again? Will I ever be content again? It is like a life sentence, this grief. It is just something I will carry for my whole life, and that is that. But truthfully, if I can't have her, I need to grieve her.
Kate talks about Ruby all day. I am so happy she thinks about her, and wants to talk about her like we do. She often prays, "Please bless us that Ruby can stay." It use to make me so sad to hear those words, and think that Kate didn't understand. But, I really think she does understand, and I like to think she is talking about her spirit that we want to stay with us every minute.
I told Kate yesterday that it was Ruby's birthday next week, and she got so excited and ask, "Will there be cake? I love cake, mama."
I am thankful for my Kate. I am thankful for her innocent and pure little testimony of our forever family. I am thankful for Ruby, and that she has instilled into our hearts everything that is important.

Why

Deciding to open this blog to the public was a very hard choice for me. I wasn't even blogging very often, we were so busy with Ruby and everything going on. One day, I had the strongest feeling that I needed to open it to the public, and I needed to start writing about our journey. I questioned this feeling, and stewed about it for a long while. But, I know that the feeling I had was something that could not be ignored.
Blogging about Ruby was very hard. Being honest about her struggle, and how sick she was, was something that was extremely hard to do, and took a awhile to share more openly. I thought at first that I needed to write to help other families that might go through what we were. I was hungry for a real life account from someone else, that had gone through, what we were. But, I couldn't find it.
As Ruby became more and more ill, it seemed like the reason for blogging changed. Being at the hospital full time with Ruby, and a lot of time alone, left me wanting to vent, and write down my feelings. It became therapy for me. I didn't need to pay for it, I didn't need to leave Ruby for it. It helped.
As people started to learn about Ruby and follow her story, I didn't feel so alone. The comments would come in on my phone throughout the day, and it would give me hope. I also felt like Ruby was giving hope to people who hadn't had it for a long time. I would get emails from people who had never prayed, who had never believed in God, saying that they had started, because of my girl. I felt like it was the only thing I could do, for her. I could write, and I could tell her story, and I could ask people to pray for her. It's all I could do.
I remember a particular day, a month or so before Ruby passed away. We were in the hospital, and she was sleeping in her crib. The thought came to me that I needed to write down my feelings for Ruby, while I could still use the present tense. I instantly thought what a silly thing to think, but I did it. I wrote about her, and I got to use the present tense. Something I didn't get to do for very much longer.
Another day, not much longer, I started writing about my new perspective. I never left Ruby awake in her crib. I was always holding her, playing with her, loving on her when she was awake. But that day, when she woke up, something told me to keep writing. I remember the guilt I felt as I put on a Baby Signing Time for her, and kept typing. That post was something that I needed to write for myself. Being a grieving woman, but also a mother to a 3 year old, I needed that reminder. And still do.
In the end, I believed that the whole reason for my blogging, was because we needed that audience to be able to find her donor. If I had never blogged about her, we couldn't have asked for help. Those final 3 people that showed up, gave us hope, until the last minute. Something that Heavenly Father knew we needed as parents to Ruby.
And now? Sharing how I feel, how I grieve, how I survive? Not fun. If you have been around me in the past 4 months, you know I don't like to talk about how we are REALLY doing. I write a lot. And sometimes I choose to share those feelings on my blog. Every time I do it, I wonder why. Every time, I am reassured by a comment, or email that it helped someone.
It's not fun blogging about this. I don't like it. But, I was asked to do it, and I have. And I really believe that I have been blessed with friends, experiences, and love that I wouldn't have, had I chosen to ignore that prompting that day.
There were a few blogs that I have followed since I became a parent. Each of these mother's had lost a child. I feel in a way, they prepared me. After I lost Ruby, I felt so grateful for these mothers for sharing their feelings and stories.
And now? I hope the more people that can learn about Ruby, the more lives will be touched by her sweet spirit that is so strong that it can be conveyed somehow on these pages.
I hope that her story will continue to inspire, and continue to save lives.

Running for Ruby

January 7th
Santa Margarita Ford
Check in Starts at 7am
10k: 8:30
5k: 8:40

We are really excited for the first Run for Ruby. We would love for everyone to come out and support us, and the Foundation. We are so passionate about raising awareness of organ donation. Register here:
http://www.imathlete.com/events/RunforRuby

We are having a blood drive at the run as well. If you would like to sign up for an appointment, here is the link:
https://www.givelife.org/index.cfm?group=op&step=2&opid=932001

Be the Match, the American Red Cross, and Donate Life will all be there. We are all trying to save lives, and it is so exciting that we can do that in Ruby's honor.

Please come!

I need her.

I want to go back.

Sometimes it is hard to not feel picked on.
Sometimes it just hurts to bad, and so deeply, I wonder how I can keep myself breathing.
I know Ruby is so close to me, but I just yearn for her to be here physically. I want her to burrow her head into my neck. I want to give her a bath. I want her smell, her touch, and her giggle.
I want her back, and I want it so bad, it is hard to fathom that my pain and love are not enough for that to happen right now.
I don't want to be the girl who people look at and feel sorry for. Or the girl people admire because I am holding it together. I rather be the boring mom out in the hall at church with a crazy baby.
I want to be planning a first birthday party and watch my baby enjoy it. I want to be Christmas shopping for two sweet daughters.
I want, I want, I want...
And I don't want to wait. It just seems so far away.
It's not alright. I know it will be alright someday...but today it just isn't ok that she is not here.

Update

We have been keeping busy, and we wanted to update everyone!

Service Opportunity in S. CA:
There is an Angel of Hope statue at "Ruby's Place", and every December 6th, there is a candle light service for friends and family of angel children. We will be going that morning and cleaning up the headstone, and leaving a flower for each angel child. It would be a nice surprise for these families when they come to visit that evening to see their child's place looking beautiful. We need a lot of help. This is a great project to bring children to. If you can attend, we will be going on:

Tuesday, December 6th, at 11am.
El Toro Memorial Park, Lake Forest, CA

We are looking for flowers to be donated.
Please bring baby wipes, a grocery bag, and maybe a little broom.
Email me for more information.


Service Opportunity in Utah:
At the Angel of Hope in Ogden, UT, there will also be a candle light service. The cemetery will provide the flowers. It would be very nice to have the headstone looking beautiful here as well.

Tuesday, December 6th
1875 Monroe Boulevard
Ogden, UT

Email me for more info.


Run for Ruby 2012
We have been working away trying to ensure this is a fun day to celebrate Ruby, and to spread the word about organ donation. We would love to see you all there! Registration is open, and just take a minute to do.

January 7th, 2012
Rancho Santa Margarita, CA 92688

http://www.imathlete.com/events/RunforRuby



And to keep up on the latest with the Foundation:

1. Please "like" our Facebook page:
http://www.facebook.com/pages/The-Ruby-Jane-Foundation/163486743725357

2. Visit our website:
http://www.rubyjanefoundation.org/

3. Follow us on Twitter:
https://twitter.com/#!/RubyJFoundation

It's the destination that matters

I use to have my life perfectly planned out. It was a naive life. There was no pain, and no suffering. It was headed down a road that was safe, and pretty, and happy always.
And then real life hit me like a train.

I woke up, and my life was not so naive anymore. There was pain, and suffering. And a lot of it.

It seems like I should be headed down a different road now. It seems like the EXIT for LOST CHILD doesn't exists in this world. On that exit, all painful reminders of my new life do not exist. Target wouldn't have a baby section. There would be no medical shows on TV. The baby toys out at Costco for the holidays would be gone. Everyone would acknowledge my loss. Everyone would know what to say, and how to act. That road, doesn't exist.

I am forced down this same road with a new perspective, nothing else changed, but me. We are traveling with people who are still naive, like I once was. They think big problems are poopie diapers, messy houses, and money. And I can't blame them.

My perfectly planned out life has changed. It's not always safe. The road is unsure and not pleasant at times. But, I am learning that we are all headed in the same direction. That is what I am focused on. Instead of planning out the journey, I am now planning my life for my destination.

My Sunshine

My thoughts are all over this morning. I am learning how to avoid thinking about certain things, and how to distract myself easily, but sometimes, it just takes me over.
This morning when I woke up, it felt so cold, but it was sunny outside. It brought me straight back to last winter. I had both my little babes with me every morning. We would come down stairs and immediately turn on the heater. I would lay Ruby down in her bouncy seat, and then turn on the cartoons for Kate. Then I would opened up all the blinds. The sun was always shining right into our living room. Ruby loved the sun on her face. I would get breakfast, and meds, and change diapers, and get everyone dressed for the day, and then go upstairs to put Ruby down for a nap. When she was tiny, I would nap her in her bouncy seat. I would swaddle her nice and tight, and then rock her and sing to her, and get her very sleepy and then situate her in the bouncy. I usually put her in the sunshine in my room, and she would fall right to sleep.
It makes my heart hurt so badly to think I use to have a perfect sleeping little Ruby upstairs sleeping away in the sun. Little baby.
I am not quite sure how to get through these holidays. I am not quite sure how to get through time, period. I dread moving forward, because it means she is further behind. I dread staying stuck here, because it is painful, and it hurts, and I know I need to progress and better myself, and look forward to the day I can hold her in my arms again.
It still feels like a dream. A terrible dream that I can't wake up from. I know she is so close to me now, and that helps a lot, but there are moments of complete despair when the reality really hits me. Usually when I go into her room, and see everything untouched by my baby. Her empty crib. Seriously? An empty crib? How is that fair? And then I usually find the peace that I long for flood my heart and mind.
I know where she is. I know she is perfect. I know she is happy. I know she is close to me, and looking after our family. I KNOW I will see her again, and have her for all eternity.
I am trying to feel happiness as the memories flood my mind, and not just feel sadness that they are only a memory now. I need to learn that the sun shining in my windows should be a reminder of the sweet little sunshine that we had in our home and in our lives.
And that she is always here.

I miss my girl.

The foundation and the run have been a good distraction from the pain, but when I step back, and realize why I am busy, why we are starting this, my heart just sinks.

Her blanket doesn't smell like her anymore. There is a closet full of clothes with tags on them that she never got a chance to wear. Her sling is hanging in the coat closet, and hasn't been used in over 3 months. There was a little dust on it, and it made my heart break a little more.
I hate that it has been 3 months since she has been in our home. I hate that her bottles are getting pushed further and further back in the cupboard. I hate that the shelves that use to be hers for medical supplies, now shelve bread, and glass vases from all the flower deliveries, and odds and ends.
Want me to be honest? I just want her back. Everyday is just a struggle. If Kate were not here to pull the covers off me every morning, I would still be in bed. I find myself trying to find ways to keep her alive in our home. I want to talk about her. I want her to be talked about. I want her to still have a place in this family, and play a part.
I am not looking forward to the holidays. I secretly want to just hibernate until February. Last year we were preparing to move into our new house, a house that had room for another baby. I was 8.5 months pregnant. I remember thinking how next year I could not believe we would have a baby crawling and maybe walking around, and a 3 year old on Christmas morning. I was so worried about when Ruby was going to arrive. I was worried if it was too close to Christmas that no one would come to her birthday parties in the years to come. We were worried about tax returns, and insurance. Seriously? It makes me sick to my stomach that I was worried about those kinds of things.
I remember turning into a crazy lady about finishing Ruby's room. I was waddling through the mall, during the busy Christmas rush, looking for the perfect curtains, and shade of pink for her lamp shapes. I wanted it to be done and perfect before she arrived. Looking back now, I know that if I had not done that, her room would have never been finished after she was born. I am so thankful every time I go into her room. It was a perfect nursery for her. I loved rocking her in there, and nursing her, and putting her into beautiful girly outfits. Her room is a little piece of heaven. I feel so peaceful in there.
I miss Ruby. I miss her everyday. I miss her smell, her blue eyes, her smile, and her giggle. I miss holding her, and brushing her hair, and changing her diaper. I miss having two happy girls in my home, and two happy girls that need their mother's attention. Instead of planning a huge event, all I really want to be doing is making baby food, cleaning bottles, singing silly songs, and loving on my girls.
For now, I have the next best thing. I have Kate who needs me more than ever. And I have a great cause to put my extra energy into.
I found this in my photobooth. Forgot all about these pictures. I am inhaling her. I am so glad I did that. Every part of pictures with Ruby are so meaningful now.
I see a tired mom from being up all night. How lucky I was. I remember putting those jammies on her, and they were a little too small, but looked to cute on her.
In her left hand she is holding onto her PICC line. Little stinker always did that. Her right arm is on my shoulder. Makes me cry to think of that little hand just resting on my skin. I also see bright yellow stain on her right arm. Her vitamins were that color, and she had thrown up that morning. The flower on the table? Those are from a trip that Kate and Ruby and I had taken to Lowes together. I see the excersaucer I had gone out to buy just a week before. She went in it twice.

RJF Website

We would like to finally announce The Ruby Jane Foundation website. We are very excited about it. Everything is now in one place! Please check it out, and let us know what you think!


We want to thank Tyler Jorgenson of BIZNINJA for helping us with the website, and to Ashly Lark for the graphics!

*fixed the links!

Run For Ruby!

Just a week or so after our sweet girl passed away, the idea for this run started to turn into a reality. It seemed so far away, and so hard to pull together, but we have done it!

This Run for Ruby has really given us something to work for, and look forward to. It has been a great event to plan, at the same time helping us heal. We are so thrilled that it is getting so close. As her first birthday is getting closer and closer, my heart just aches for my baby. I wish I was planning a first birthday party, and in a way, I feel like I now am.

We wanted so badly to have the run in our hometown. When Ruby was home from the hospital, we were always outside, enjoying our community. We spent a lot of time at the lake, the parks, and walking on the trails. The run will be on a trail (paved) that we walked on with Ruby. It will also pass by our home.

There will be a 5k, and 10k race offered. We are going to have the Red Cross truck be there for those that would like to donate blood. Be the Match will also be there with their kits to screen potential donors for bone marrow. The goal of this annual run is to raise awareness about organ and tissue donation. With the help of our family, friends, and community, we can safe lives.

We are planning on having fun booths, great music, and a fun day celebrating Ruby’s first birthday!

REGISTRATION is now OPEN!

http://www.imathlete.com/events/RunforRuby?z=1320187410691

If you sign up before Saturday, Novemeber 5th, you will be entered into a giveaway for a photography session!

All you need to do is:

1.Register for the race.

2. Share the link on your Facebook.

3. Comment on our RJF Facebook page when you are finished.

If you are unable to run/walk with us, and you would like to volunteer, please let us know!

We can’t wait to see everyone there!

Get running!!!

(I hate running, like a lot...but thinking about my Rubes, keeps me going. If I can do it, YOU can do it!)

Her Leaves

I have not loved the changing of the season. I knew it meant it was just that much further away from us seeing her, and that upset me, but I knew it was something more than that.
This morning, I was pulling out to take Kate to preschool, and the leaves were being racked up in my front yard. At that moment, I knew. Those leaves were leaves that Kate, Ruby and I laid under during the hot summer. Those are the leaves that shaded us in our backyard planting while Ruby sat in her bouncy. Those are the leaves that she watched while laying on the couch. Those are the very leaves that we walked under when I took her outside to get her to stop fussing. It took a lot for me not to run over and explain just how precious those leaves were to me.
We have big, tall windows in our family room. We moved in this winter, and the trees were bare. I remember coming home from a 2 week stay in the hospital in the Spring, and the trees had tiny light green buds all over. It was symbolic for a lot of things for me. It seemed like every time we would return after a hospital stay, the leaves were the first thing we noticed. They were always greener, always bigger. Maybe since my baby was getting weaker, and sicker, perhaps that was a little hope for me. I don't know, but I have an attachment to those leaves!
At the park the other day, I had the same feeling. We spent a lot of time at that park. I sat on the bench, under the trees, nursing, and watching Kate play. The leaves will all fall. And new leaves will come. But those leaves have never watched us play. Those leaves have never seen those sparkly blue eyes. They have never created the shade that danced across her face. They aren't hers.
I know this must sound so strange. But, it is how I feel.
I feel the same way when I toss out food I bought when Rubes was with me at the grocery store. Or when I emptied the bottle of shampoo I used at the hospital. Even buying a new shirt, I feel like, Ruby never got to see this shirt! I guess these are all just signs that life moves on. The leaves change. Food goes bad. Who knew those things could be such a trigger?
I would be forever content rewinding to those hot summer days, laying under the trees with my girls.

When I vacuum.

Everywhere I turn, I am reminded that she is gone. I can't escape the constant reminders.
When I am vacuuming, I get to the spot where her swing was, or her bouncy seat, and my heart breaks.
I was cleaning out my pantry last week. In the back of one of the lower shelves, I found all her baby food, and puffs I had bought before she was even born. I was so excited for her to come to our family. Bananas were her favorite, so kept one in the cardboard, it just felt right.
Every night when we tuck Kate into bed, my stomach is just doing flips. I use to have two kids to tuck into bed. I use to nurse Ruby and get her into her jammies, and rock and sing her to sleep, while Matt got Kate all ready. Then we would have family prayer together, and Kate and Ruby would snuggle for a little while. It is just so obvious that she is not there.
Doing the laundry is strange. Ruby went through a lot of outfits in a day. The amount of laundry is so much smaller, and a lot less pink. I miss folding those tiny onesies.
Kate started preschool. When I signed her up 6+ months ago, I was excited to have that one on one time with just Ruby. Every time I get into my car after dropping Kate off, my car seems SO empty. I think, "What am I suppose to do now?" That is always the moment when it is very obvious that my life is not what I thought it was going to be.
Family outings are getting hard for me. Kate always declares, "Family HUG!" or says, "the whole family!" And my breath catches. It feels strange to be able to be out all day, and not worry about naps or bottles, or TPN, or meds. I WISH we had those things to worry about. Being spontaneous is not very fun anymore.
I know she is with us in spirit. I really think that she is around us all of the time, and participating in things we do, and making memories right along side us. BUT, I want her there physically as well. I want her in my arms. I want to be busy and stressed out, and tired and have spit up in my hair.
I see mothers everyday that look so upset and unhappy.
Do you know how lucky you are to have spit up in your hair? Do you know how lucky you are to have TWO crying babies in your cart? Do you know how lucky you are that you get to buy diapers? Do you know how lucky you are to have circles under your eyes from being up all night with your baby, and not from crying all night from missing your baby? Do you know how lucky you are that you get to nurse your baby? It takes everything in me not to walk up to mother's and just make sure they know!
Even though Ruby was just a baby, she had such a big place in our lives. I like that. I like that there are reminders around our home of her. It is painful, but it helps me feel like she really was and IS a part of our family.

Wristband and Picture Notice:

We apologize for the delay in shipping out wristbands and pictures. Due to the overwhelming response we ran out of wristbands and had to order more which are scheduled to arrive around the 18th. At that time we have volunteers coming to help us pack and ship them. So again, sorry for the delay and you should have it by the end of the month! Thanks!

Between the lines

There are certain conversations that are just very painful and I just want to scream and pull my hair out. But I just breathe and breathe, and then I don't feel like I am dying after while. I give the answers they are looking for, but inside I am having a battle with myself because I want to pour my heart out and make them understand.

Long story short, our insurances use to pay for massages on our old plan, and I had some I never used because I was pregnant, and had to use them up by a certain date. So, for the past 3 weeks, I have gone weekly. The massage therapist always asks me, "Are you hurting any where in particular?" UM YESSSS!!! And then comes, "Are there any injuries I should know about?" YES, A TERRIBLE INJURY! Then I spend the next 10 minutes taking deep breaths and trying not to cry. I just want to be a lady who comes in and is sore from lifting her children and pushing on them on the swings all afternoon. I want my injury to be my leg or arm, or anything but my soul.

I just got off the phone with someone in the medical field. She said, "And you had a neonatal death, correct?" Well, my beautiful, sweet, funny, and amazing daughter passed away 8 weeks ago today. She was 7 months and 1 week old. Is that what you were referring to? And then she later asked me how many weeks I was when I miscarried. I CARRIED HER in my ARMS! She was 7 months and one week old! And then went on to ask how many pregnancy I have had. Two, a 3 year old, and Ruby. "So you only have one child?" NO! I just told you. I HAVE TWO.

I have two children. I have a deep and serious injury that may never ever heal. Can someone make me a shirt?

9 Months

My little Rubes would have been 9 months old today. I can't help but wonder about what her tricks would be this month! I think she would have had a lot more teeth. That girl had 3 teeth, and was going strong! If one of those liver would have worked out, she would have been home and healthy by now. I think she would have been sitting up, and maybe trying to crawl. She loved applesauce and bananas, and by this point, I am sure she would have been eating lots of other yummy things. She was a pretty good sleeper when she felt good. I think she would have been sleeping through the night for sure. Baby girl loved to nurse, and I am sure she would be still loving that.
You know what stinks? It stinks that I have to wonder about these things. It sticks that she is not here in our home to physically see and watch, and laugh with. It just plain stinks. I don't want anyone under the wrong impressions that I am doing this well. It is SO hard. It is hard for 99% of the day. There are a few moments, sometimes only one, that I can understand. I am thankful for that relief in the grief.
Ruby, you are truly amazing. Everyday I am still learning from you. I know you are hard at work on the other side, and making sure your family and friends and being cared for. I know you are our little angel, and touching our lives in more ways than we understand or notice. I love you so much Rubers.