The thing about waves is that they continually come in.
Sometimes the sets are huge, and close together, other times they are small and spread out. But they are always there.

I feel like I am standing right on the edge of the water. Sometimes the tides come up, and I feel panicked, and scared. A huge wave hits me, and I am drowning. She is gone, my baby. I have to live a lifetime without her. How will I do this?

Other times, the tide is out a ways, and I see my toes in the damp sand. The pain is there, but not taking me over. I can enjoy the beauty of the ocean, and the small waves that barely reach my feet. She is always mine. Families are forever. I have 7 months worth of precious memories.

Standing at the edge of this vast ocean is something I have never experienced before, but have been preparing for my whole life. I can swim. I won't be swallowed up, even if it feels like it. I have the faith in my Savior and faith in the Plan of Happiness. That gives me the strength that I need to swim when I am drowning, and to enjoy the beauty when I am not.

Do I wish I wasn't standing in this place?
Yes.

But, I know that my Heavenly Father has me just where I should be.

Waves

Waves of pain and grief and agony seem to keep rolling in.
It seems to be the little things that set the waves into motion. Looking in the backseat of the car, and seeing only one car seat. Tucking Kate into bed, and then sitting in Ruby's empty room. Looking under the kitchen sink and finding her Burt's Baby Bees baby wash. One week I am bathing my sweet baby in my kitchen sink, and now she is gone. My mom asked me to drop my grandma off at the airport at 11am, and I automatically thought it was nap time. It is just impossible to wrap my head around. She belongs here. She belongs with me fussing and caring and loving her.
Usually when you are going through a hard time or trial, it seems like you can proactively help yourself to get though it, and then it is over at some point. I know that this missing will have to last a lifetime. That is a long time. There is no way around it, just have to go through it.
Ruby was so time and labor intensive, that it just seems too quiet around here. I went from constant go go go go, to nothing. I am trying so hard to be the mom I need to be to Kate. She took a backseat to everything for 7 months, and I know I need to gain her trust again. It is a process. This whole new life is a process. I am trying to just take it hour by hour. And most times, minute to minute.
Breath in. Breath out.

The Ruby Jane Foundation

Hi, this is Mike again. Ani and Matt have started the official movement of Ruby's legacy, "The Ruby Jane Foundation."

The foundation has a goal of promoting organ donation awareness, enacting legislation to enable families to make informed and educated decisions regarding organ donation, and to raise money to support the cause.

We have started planning a "Run for Ruby" that will hopefully take place each year on Ruby's birthday. We couldn't be more excited about this and feel like it is a great way to keep the fire burning that our little baby started. We anticipate having a 5k, 10k, and half marathon. Proceeds will go to the foundation and help us to enact the legislation we believe is necessary to help save thousands of people.

Join the movement. Join with us and help make a difference. Visit our page on Facebook and click the "like" button to receive news and updates about our mission.

Go Rubes!

Or click here:

The Ruby Jane Foundation

Last week, exactly at this time, I had the nurse moving tubes and wires and making way for me to lay down next to Ruby in her bed. I had been wanting to so badly, but thought it wasn't possible with everything going on. I was so excited to be able to snuggle up to my baby girl. I carefully climbed up into the bed on her right side. It felt like heaven to be so close to her when she needed me the most. I held her tiny swollen hand with one hand, and rubbed her warm soft tummy, and chubby legs with my other hand. Sometimes a girl just needs her mama, and sometimes a mama just needs her girl. It was a tender mercy. I am so thankful for those moments so close to my Ruby, because 12 hours later she would slip away.

Wrist Bands and Pictures

This is Mike. I have taken the responsibility to oversee the rubber wristbands and pictures of Ruby for my sister. A lot of people have asked so here is the information:

1. Rubber Wristbands: If you would like a Ruby Jane rubber wristband with her name on it you need to sign up to be an organ donor here. Once you are a registered donor in your state visit aniandmatttaylor.blogspot.com and click "yes" at the top right to indicate you are a donor. Once you have done that please email: rubyfoundation@gmail.com and indicate you have become a donor and indicate size (small or large) and color (gray or pink) and your mailing address. If you have requested one and it has not arrived please email us and let is know. Obviously a lot of emails from last week got lost in the shuffle with everything that occurred and probably will not get answered. The best way now is to email rubyfoundation@gmail.com and place an order.

2. Photo of Ruby: At the service we discussed Ruby's beautiful life and and her mission. We recognized that she changed us all and we want to remember that. We have printed copies of a beautiful Ruby picture that we have asked everyone at the service to take home and frame to serve as a reminder of all Ruby did and to remember her legacy. That is all we are asking to receive a picture. Ani has asked that we extend this to all, not just those present at the service. If you would like your own 4x6 Ruby picture simply email rubyfoundation@gmail.com and indicate you would like the picture and your shipping address. This will be sent at no charge to you.

Thank you so much and please help spread the word! Questions: rubyfoundation@gmail.com.

A lot of healing has taken place over the past few days. Yesterday was just what we needed. The amount of love and respect for our sweet daughter was so awe inspiring. Ruby loves being outside, and loves the sunshine on her face, so that is what we will be doing today. We are taking a "Ruby Day".

my arms are so empty. so, so empty. 7 months i held that baby in my arms, and now they are empty. it is such an awful feeling. no words can describe the pain my heart feels. a few days before her passing, i was trying to think of words to describe how my heart felt watching her suffer, and the only thing i could think of was my heart being dragged over hot coals. hot coals sound pretty good right about now. there is just no way to write out the anguish i feel. not only does my heart just ache and hurt beyond expression, but my whole body.
all day long i am in a constant battle with myself. one moment being overcome with grief and sorrow, and the next feeling complete comfort in the Plan of Salvation. i have to keep reminding myself of what i know to be true. it is what i cling to. oh, i am so thankful for eternal families.
the spirit was so close the day she passed on. i knew it was coming. i tried to convince myself otherwise, but it was whispered to me so clearly.
nothing really fell into place with her health. it was one road block after another. she was not meant to make it through her struggle. when the "what if's" and the "if only's" creep into my mind all day and night, i have to remember the prompting from the spirit. my father in heaven knew that i needed that. i fought so long and so hard for my baby, and i needed to hear that last day that He needed her Home with Him.
my arms will continue to long and ache for my daughter, but at least i know that she is in the loving arms of our Father in Heaven.

CORRECTION

We incorrectly listed the address of the chapel for tomorrow. Here is the correct one:

30522 Via Con Dios

Rancho Santa Margarita, CA 92688

how has Ruby changed your life?

This is Ani's sister, Danielle. Over the last few months, I have heard story after story of how little Ruby touched so many people's lives. I am working on putting a book together- where all of these precious memories can be in one place. If Ruby has helped you, is some way, will you please send your thoughts to me?

It can be anything big or small... I have heard stories of how people have started praying again, have gone back to church, have committed to a different lifestyle, have stopped doing dishes/folding laundry and snuggled their kids instead, have taken an extra minute at bedtime to read another story and give an extra kiss. For me, I made a promise to Ruby that I would be more patient and gentle with my children. Every day, I remember my promise to my niece and I am committed to not letting her down. If you can take a moment and send those thoughts to me, I know that Matt and Ani would love to read how their little baby has changed your life. Ruby was an example to us all and I know that she changed more lives in her 7 months, than I could ever hope to in my lifetime.

You can send me a message on facebook: Danielle Bewsey Edmonds
or email at: dne29@hotmail.com

There will also be a table set up at the service on Tuesday- where you can write your thoughts down.

our hearts are broken. yesterday morning when i woke up, it was so quiet. too quiet. all i could hear was the clock ticking. i am so thankful for my knowledge of eternal families, and that each second that goes by brings me closer to being with my sweet baby girl again.

Celebration of Baby Ruby

This is Mike. I can't express how much all the positive comments and thoughts have helped my dear sister. I have one more request for everyone: If you have been influenced in some way by baby Ruby come show your support as we celebrate her life this coming Tuesday. Let us make this standing room only and a show of overwhelming support for the Taylors. I can tell you that each person that shows up lifts the burden in some small way.

Service
The Church of Jesus Christ of Latter-Day Saints
30522 Via Con Dios
Rancho Santa Margarita, CA 92688
Tuesday, August 16th, 11:00am

Interment
El Toro Memorial Park
25751 Trabuco Road
Lake Forest, CA 92630
Tuesday, August 16th, following the service

Our sweet Ruby Jane went Home to be with her Father in Heaven last night. We both knew that her mission in this life was completed, and it was time for her to go Home.

we have another offer. it sounds like a child. they will need to be able to split it. ruby needs to stay stable. she has had some questionable stats today, so they are watching very closely. keep the faith. keep the prayers coming. this has got to be it!!!!

Living Donor

This is Mike. The response has been overwhelming from family and friends on the living donor front. We are truly grateful for this but need to make sure we are not working against ourselves. UCLA has one coordinator working on Ruby for living donors and our concern is that she is being inundated with calls and is having to work through all of the messages and losing time. My intent with this post is to clarify who would be eligible and therefore reduce the amount of calls that wouldn't be a match based on the criteria we know up front.

1. Small frame and body-There is no exact body or weight ratio they are looking for. All we can say is that our cousin we thought would be match was too big at 5'4" and 115 pounds. Fit and healthy donors are always preferable.

2. Cannot be breast-feeding

3. Must have healthy liver (no heavy drinking, smoking, drug use, disease)

4. Blood type must be A or O positive

5. Age-younger the better, must be 18 at least.

6. They would like to avoid young mothers, although this will not preclude you from donating

7. IMPORTANT-Please spend some time educating yourself on the surgery. This is not a simple surgery and comes with a fair amount of risk. 20% of the cases end in complication. You will spend 6 hours under for the operation, two days in the ICU, and another 7 days in the hospital (approximate times). Women will not be able to become pregnant for 12-24 months. Risk of death is negligible as that has occurred only once since 1985. Here is a link that explains some of the components. Please visit this page and explore the info available:

http://transplants.ucla.edu/body.cfm?id=66&oTopID=37

8. Lastly, for ethical reasons, the family cannot answer questions about the process or specifically if you would be a match. Please go through everything above, make the decision if you would like to proceed, and call the coordinator at UCLA at 310.794.3223. Her name is Karen. Most likely you will have to leave a message and await a call back. However, if you meet everything above and want to proceed it's worth noting on your message why you are a good match (i.e. small body and frame). Karen has been going through hundreds of calls that have come in trying to determine who could be a match. Keep in mind once a phone interview has been conducted and passed the living donor will have to come to UCLA and undergo many more tests such as MRI, CAT scan, physiological testing, etc.

Again, thank you so much for considering doing this.`` Hopefully the above provides some answers and allow more informed decisions to be made.

Ruby is somewhat stable right now. She is on a breathing tube, as well as constant dialysis. They are hoping the dialysis will remove all of the fluid build up and stabilize her enough that they would feel ready to take her to the OR if an offer was available.
She is at Status 1B right now. She had two calls yesterday. One was too big, and the other was positive for Heb B. We are hoping that tonight or tomorrow we get the perfect match for her. This girl needs it fast. My cousin was not a match.
It has been the longest, ugliest, most frightening 24 hours of my life thus far. There was about an hour where Ruby was literally fighting for her life, and we held her head and whispered into her ear the whole time. She is amazing. She is strong, and she is doing this. Pray that she can keep fighting this fight long enough to get a new liver into her.
Would you please also pray for us? We are struggling.