Day One: Talk about Organ Donation

Last year, exactly a year ago, on August 5th, we were celebrating Ruby's 7 Month Birthday.

We decided to celebrate by encouraging friend and family, to register as an Organ Donor in her honor. We had a goal of 200, and by the end of that day, it was more than double that. Look over to the right sidebar of my blog to see the current number. Currently 2494! (I those are just the people who have clicked on our poll. I know there are lots and lots more!)

It was also the day that she started to really make a turn for the worse, and was moved to the PICU to wait for her live saving gift.

One donor can save the life of 8 people, and help 50 other. I am so proud of my Ruby girl, and the people she touched, and continues to touch even still. 

I am a lucky mama to have her as a daughter.

Please talk about Organ Donation with your family today. It is such an important choice, and one that should be talked about as a family. 

If you would be willing to accept (an organ), are you also willing to give?

If you are from California, register here: http://register.donatelifecalifornia.org/RubyJaneTaylor
Out of state: www.donatelife.net 


 

Remembering Ruby

I have been dreading August 12, of 2012 for 11 months, and three weeks. 

A whole year with out my baby girl? Sounds WAY too long. Feels WAY WAY too long. I fear that people will start forgetting her. I fear that people will think I am healed because we hit this anniversary. I just don't like to think it has been a whole year since we have held her. 

We decided to spend all week doing things I think she would be happy about. We are going to celebrate her Angel Week. I think it will really help us get through it. 

Will you join us?

When Enough, is enough.

I thought that losing our daughter would be the only trial we would possibly be given this year. I thought that sounded like enough, and we would be busy trying to get through this very painful time in our lives, and given a little slack with the trials for awhile.

4 months ago, Matt called me in the late afternoon, and let me know that he had been let go from his job.  The company he had worked for for the passed 5 years was going under, and he had more or less expected this was going to happen a couple of weeks prior. Because he was let go on such good terms, there was no resentment, and I was surprised that the news did not upset me or him more. I did think, "Wow, ok, here we go...another trial...if we can survive losing a child, this should not phase us."

A couple weeks previous, my best friend, and one of the few that have really gotten me through these months, told me she was moving to Texas. I had a few conversations with my Heavenly Father, trying to understand His timing, and could I please have a different trial??? But, guess what? You gotta be careful for what you ask for!  I was at Target, shopping for Lemonade Stand supplies a few weeks later. My sister (my rock, and best friend) called me and just as I was reaching for the Country Time, and told me her husband had been offered a promotion, and that they would need to move. I thought I had handled it pretty well, until I got home, and was mixing the lemonade, and wondered why it was brown. I had bought Iced Tea!

Enough is enough, right?

As the blows keeping coming in, I have dealt with them in the best way I know how. I am pretty good at controlling my emotions. I have a fairly good relationship with my Father in Heaven, and I feel like I was able to talk these things out with Him, and feel peace eventually.

But it seems like every time I feel peace, and an understanding, then something else happens to rock my core.

A sweet little girl named Halle, that I had been following, just passed away from cancer. Another sweet UCLA child, Emily, passed away after a courageous fight, and left behind a very sad and grieving family. And then I found out that Ruby's little friend from the hospital was STILL waiting for his liver transplant, and had taken a turn for the worse. His pictures, and his condition, were so similar to Ruby's last little while here, that is evoked emotions I had not dealt with for a long time. I had hoped to be his donor, and had been in contact with the Living Donor Team. I thought that maybe this was just part of my story. Maybe I was meant to donate to him. Maybe the reason I couldn't be Ruby's donor, was because of this little boy. It was starting to make sense in my heart, and I was hopeful. And then this passed week, he joined Ruby in Heaven. After a very long and hard battle, he was just too tired. I plead to know why these things happen to babies. If he was going to return Home, then why did he have to endure all of that?

Yesterday morning I was woken up with a phone call, letting me know that our very dear friends had lost their baby, just a few short weeks away from her due date. My heart, which is usually very well guarded, was seized with pain and anguish.

Having been through the worse days of my life, I know all the pain, and suffering, and torture that comes. It is horrible to know that all those mama's and daddy's hearts will feel like mine did, and still does. I wouldn't wish it on anyone, in fact, since I know my heart and soul proved they could survive the torture, I wish I could just take it for them.

Last night I visited the temple. I was consumed in thoughts about Ruby, and these other precious babies. Tried to make sense of my year, and why I have been stripped of my child, and soon after the remnants of a normal life. I tried to make sense of it all. I asked for understanding. I asked for guidance. And I kept just thinking that it just did not make sense. I could not understand His plan.

This morning as I was vacuuming, it occurred to me that we are not suppose to understand His plan for us. We are suppose to have faith and trust and hope in Him, and that he has a divine plan for us. How could we possibly make sense of a plan that is so perfectly tailored for each of us. We have been given exactly the trials that Heavenly Father has sent our way. I think that I am slowly, being molded and refined with each trial that comes, into the woman that my Father wants me to be. He knows what I can handle. He knows the worth of my divine nature, and he knows how far I need to be stretched to become the person He knows I am, the daughter He created and loves. It doesn't lessen the pain, but what that knowledge allows moments of peace between the anguish.

As I vacuumed my way down the hall, I thought, "Who am I to tell Him, 'enough is enough'!?"  I am working on my faith. I am working on my trust. And I am working on my HOPE. Because that is all we can really do when nothing seems to be making any sense.

Understanding the reason for our trials will most likely not come in this life time. But I am confident that our Father in Heaven will make up for losses, and bless us with more than we can imagine.

My "Trying-to-make-sense-of-it" reading pile on my nightstand.

"What do I say?"

I have been asked for advice, a few times, about how to handle, what to say, and what to do for someone after they have lost a loved one. I for sure don't have it figured out, but I can share with you, what worked for me.

1. Talk about the person. The most important thing for me was to feel like Ruby is remembered. Hearing people talk about her, makes my day.

2. Use their name. I love to hear Ruby's name. I miss out on saying it a million times a day, like I say, "Kate". I am excited to use her name, and love it when others do as well.

3. Don't be afraid. Being afraid, and not saying anything at all, is worse than saying the wrong thing. I appreciate a family that I always make eye contact with at church, and they always give me a warm smile. It makes me feel like they know I am hurting, and they want to acknowledge that.

4. Be honest. I loved it when someone told me exactly how they felt. I remember a friend telling me how she really struggled with her testimony for awhile, because of what happened to Ruby. It helped me to realize that Ruby had a really strong impact on not only us, but the people around us. It made me feel more comfortable sharing how I felt, when other people told me how they felt.

5. Share how that person has touched you. Getting emails about an exact example of a way that Ruby has changed their life was the most meaningful things to me. Knowing that my friend put down her laundry, and decided to play with her children that afternoon because of my baby, meant the world to me to hear.

6. Don't minimize the pain. Yes, time is helpful, but it doesn't make it ever go away. I think time changes those left behind, and enables them to better cope with a loss, but doesn't heal it. Hearing, "Oh, you will be fine in a year!!" doesn't make me feel better. Don't say, "Well, you will have another child." Or, "At least you don't have a lifetime of memories to be sad about." What most people say is, "She is in a better place."Any loss is a great one. A miscarriage, a stillborn, a toddler, or a grandpa. There is always pain and sorrow involved. When people minimize the loss, it had made me feel like I should not be mourning so much.

7. Everyone grieves differently. Allow others to grieve how they are comfortable. No one can tell you how to grieve. People cry at different times. Emotions are triggered by different things. People take different amounts of time to mourn, and be depressed, etc.

8. Don't judge. One of the hardest part of grieving for me has been to feel like I am being watched. I remember the first time I laughed out loud after Ruby passed away, and I instantly felt guilt, and looked around to see who had seen me.  I might be broken and crying on the floor in the morning, but I get my self together, and can be a playful mom an hour later. It doesn't mean I have healed. It doesn't mean I have forgotten, or moved on. It just means I am having an ok moment! When I have had a break down, I have appreciated a little pat on my back, and a tissue discretely handed my way.

9. Don't ask, just DO.  Yes, I needed my bathroom cleaned and I was too tired to even lift my arm, but if you ask what you can do, I wouldn't have said, "Please clean my bathroom." It was more meaningful when my friend showed up, stormed through my protest, and cleaned my bathroom and then left. Drop off dinner with out asking what they want. They only thing they want is their loved one back, thinking about dinner is the last thing on their mind. Play with their kids. Mow their lawn. Replant flowers.

10. LOVE. If you love someone, and expect nothing in return, you can't go wrong. There has been so many acts of love and kindness to our family. It was physically and emotionally impossible to thank everyone, and express how much we appreciated them. But I knew that they didn't expect that, and it made the acts even more appreciated. Love is the only thing that can lessen the pain, and by expressing your love with acts and words of kindness, you will make a difference.




(I will eventually post a more detailed guide of what to do for a family in the hospital, and other things that are hard to know, unless you have been through it. )

Shhh!

This is Ani's sister, Danielle.  :)

You may remember that last August, I asked for you all to send me an email explaining how Ruby Jane has changed your life.  My plan was to compile everyone's messages into a book and give it to Ani and Matt, on August 12, 2012- the year anniversary of Ruby's passing. 

I am almost finished with the book and will be sending it in to be printed soon- but I wanted to give one last opportunity for people to email me- if you have any thoughts that you would like to be included in the book. 

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

It has been such an honor and privilege to read through your emails/messages and see the way that Ruby has touched peoples lives and hearts.  August 12th is going to be a hard day- but I hope that Ani and Matt will be able to feel peace, knowing how many people Ruby has influenced.  I sure miss that baby girl. 

Thank you!
(please do not leave a comment on this post- if you have any questions, feel free to email me at the address above)

Missing our Ruby

As we drove home for a little family vacation late last night, Kate woke up in her carseat crying. Her legs hurt, she had a bad dream, and then...through tears, "Mom, you know who I reeeeally miiiissss? Ruby." And then the tears fell faster. 

Once we got home, I got her into bed, and wrapped her up in my arms. She quickly fell asleep, peaceful. I watched that big baby of mine for a long time, just sleeping. She is a "baby" in so many ways. She still has round chubby cheeks. Her hands are still dimpled. She whines, and cries. She still uses a special blanket, Bobos. But tonight as I watched her asleep in my arms, I saw a very mature girl. I saw a girl who longs for her baby sister. I saw a girl who has experienced a lot in her short 4 years. I saw a girl who understands trials. I saw a girl who prays hard for her family, and our hospital friends. I saw a girl who understands the basic principles of the gospel, and knows she will see her baby sister again.

 "I want to teach her how to walk Mama." She told us in the car. "I want to help her crawl too." I am glad that I can honestly tell her, with all the faith and love in my heart, "Oh, you will Kate! Just as soon as we get to see her again!" Our faith in God's plan is more than just our hope, it is Kate's as well. It makes this terrible separation a little more "do-able".

As I watched my big baby sleeping last night I realized that this separation is hard for her, just as it is for us. I have been tricking myself into thinking that she is young enough to not really remember everything. She is young enough to not pick up on the deep absence of her sister....young enough that her heart won't ache as mine does. I was wrong. Of course I was wrong...

As much as it adds to my heartache, I am glad that Kate has such a strong relationship with her sister. I am glad she remembers her. I am glad she longs for her, as painful as it is. The only thing worse than the pain, would be forgetting. And how could you ever forget this little love? 

4th

Happy 4th Birthday to my Kate Bug! You bring so much happiness and joy to our lives. We LOVE YOU!!!!

May 2011

Tomorrow Kate turns 4. 

Last year, we had been in the hospital for some time. As we got closer and closer to Kate's birthday, I became more vocal about our plans to be discharged! I was determined to be home with my big girl. 

We had a big party planned, and we made sure the hospital staff knew we would be home by the 18th! We were discharged on the evening of the 17th. We packed our car, buckled in our Ruby, and went in search of her gift. I found a steal of a deal on a Barbie car, and when we went to pick it up, they did not want to honor the price I had seen advertized. I explained our whole situation, probably though tears, and after a few minutes we were headed home with the car. 

 Through my exhaustion I decorated for Kate's birthday, determined to stick with tradition. After weeks of sleeping on a chair, all we could think about was our own bed. We crawled into bed around 1am. At 3 or 4am, Ruby was running a fever.

Her doctors told us we HAD to take her to the ER. Not even home for 12 hours, and back we went. As I sat in the local ER with Ruby, I felt so guilty I would not be there for Kate's birthday morning. By some miracle, her fever subsided, her counts were normal for her, so Ruby and I headed home. We hit the donut store on the way home, and made it home just as our birthday girl was waking up! I had done it...I was there!!

That afternoon, I was just about to start Kate's Birthday dinner preparations, and just needed to hook Ruby up to her TPN. Her PICC line would not flush. I tried everything I could. I called to get advice from the TPN nurse, and our home nurse came and gave it a try as well. The only other option was to go.....TO THE ER. So, I packed us up, and off we went....BACK to the hospital. I couldn't believe our luck! I was so frustrated. After several tries to flush her line, there was talk about her being admitted to take her PICC line out and placing a new one. A sweet nurse knew of a NICU nurse, who had a trick for these types of things. She was paged just as she was about to leave for the night. She came in, and after an hour or two, she cleared her line! We were back in business. We missed her birthday dinner, but made it home in time for cake! I remember Matt falling asleep on the couch holding Ruby, while Kate opened presents, and I said, "Matt, we can do this! 30 more minutes, and we can sleep! We gotta power through this one!" And we did.

This year, things are different. I am here, busy and preparing for her birthday. I have a lot of extra time for those things now. I look back on last year, and realize that we were pretty much the super mom/dad that I wrote about last week. It is amazing the amount of strength that was given to Matt and I, to be there physically, and emotionally for BOTH of our girls when we really wanted to be.

 A tender mercy, indeed.

What I have learned about being a Mother.

I Needed to be Super Mom.

 

It had been seven months, to the day, since we had sent our seven month-old daughter back to Heaven. I was driving with my three year old in the back seat, when she said, “Remember when Grammy was my mom, and Grandpa was my Dad?” The tears welled up in my eyes, and a familiar sting returned to my heart. “Yes, Kate, I remember that.” Was it guilt? Was it regret? I tried to wrap my head around these emotions that I had not dealt with for seven months. As I made my way through traffic I recalled those long months in the hospital, of not only caring for my dying baby, but also trying to still be a mother to my sweet three year old.

I vividly remember Kate’s first day of swim lessons as if it was yesterday. Not because I was there, but because I wasn’t. I snuck out of Ruby’s hospital room, and Face-Timed Kate in a sterile hallway for a few minutes before her lesson started. Her hair was in braids, and she wore a little cover-up over her pink swimsuit. Her eyes were a little teary, because she was nervous about her first lesson. I found myself in a place, I never imagined, in huge hospital with a very sick baby down the hall, and on the phone was frightened three year old, needing to hear my voice and be reassured. They both needed me in that moment, and I had never felt so torn. Being a mom should come with the ability to be two places at once, because right then, I needed to be Super Mom.

I learned a lifetime of lessons on motherhood during those short months of feeling torn between my two daughters. I learned that I can’t always be the kind of mother I want to be, exactly when I want to be. I learned that no one knows my children like I do, and no one needs me like my children do. But the most important thing I learned about motherhood was to simply love my child, and that was something that I could do, no matter what my circumstances were.

I have the unfortunately perspective of losing a child. I wish my life was busy with two, little daughters, but instead, I have a new vision of what it really means to be a mother day in and day out. It is not just about the snotty noses, carpools and the endless demands for snacks. It is about loving my children. It is about giving my whole self to them. It is about forgetting the world, the expectations, and the “To-Do” lists. It’s about getting down on the floor, and really playing. It is about taking a few extra minutes to inhale your sleeping infant. It is about singing lullabies and whispering “I love you’s”. I have learned the difference between mothering, and being a mother.

My role as a mother has not been what I thought it would be. I needed to hand off my mothering duties for one daughter, as I painfully watched the second, slowly slip from this world. But I loved both children with everything that I had in me, and in turn, they have taught me what it is to love, and to fight, and to hope, and ultimately, how to be a mother.

Thank you Stephanie, for posting this on your blog! 

My Sleeping Girls

Looking back at my photos from July 18th, I can tell it was a good day. There are pictures of Kate dressed up in princess clothes, Ruby taking cat naps, and sisters watching cartoons together.

I appreciated those days to the fullest. I felt SO lucky to be home. I felt so lucky to care for Ruby at home. I felt so thankful to be with Kate full time. I was soaking in my life.

I remember that night very clearly. I was exhausted from that day. Caring for Rubes at home was a lot of work for me. Being home meant I had all the medical things to worry about, on top of being a mommy to Kate and Ruby. And a wife to my Matt. And keeping the house clean, and dinner made. It was a lot.  I remember walking down the hall to check on the girls before I fell into bed that night. I checked on Kate first.

  I took this photo:

 

And then I slipped into Ruby's room and took this photo:

 

I will never forget the feeling of complete contentment I felt as I walked back down the hall into my room. I know I must have had a smile on my face. I just felt so lucky. And so proud to be a mother to my daughters. It was such a moment of intense feelings, that I knew I would never forget it.

It was one of the last nights that Ruby spent in our home.

 Each night after I check on Kate, I still go into Ruby's room. I usually look into her crib, and imagine her laying there, like she was not too long ago. As I walk down the hall to my room, I remember the night I felt so content. I have a gaping hole in my heart where I know contentment should reside. But, what hasn't changed is how proud and lucky I am to have been chosen as a mother to my two beautiful daughters.

Ruby Jane Taylor

We have been very exited to share this short film with everyone. 

We miss our Ruby girl every minute of every day. We are so thankful for all the love we have been given over the passed year. We are grateful for the overwhelming support for Ruby, our family, and the Foundation, as we continue to fight for cause of organ donation in Ruby's honor. Everyone that has learned about Ruby, been inspired, made a change, and shared her story, has helped carry on her mighty legacy. We hope you will continue to tell her story, by sharing this video.

Background on the video:

In the fall, a motion photography production company called Nels-Ole, contacted us about filming a short video about Ruby. In January, they flew here from Minnesota, and we filmed "Ruby's Story". These amazingly talented people donated all of their time and talent in making this video. We are so excited to have her story recorded in a way that we can easily share it with many people. We hope that you will learn more about Ruby, and our family, and share her story!

Inspired by Ruby

On Janurary 7th, 2012, more than 1,000 people gathered in Rancho Santa Margarita, CA to honor Ruby. The first annual, Run for Ruby was held just two days after Ruby would have turned 1 year old. 

People were asked how Ruby has inspired them, and this was their response.

Filmed and Edited by: Nels-Ole Creative, a Motion Photography Production Company

My Kate

Ruby passed away just after midnight on a Friday. We arrived home, empty handed, sometime around 4 or 5am. We cried ourselves to sleep. Sleep was something I thought would never come, but 7 months of physical and emotional exhaustion forced our bodies to rest, if only for a couple of hours. Waking up that morning was the worst morning of my life. I was first confused to be waking up in my own bed. After I realized why I was at home, and not at the hospital, I could not breath. "My baby died...today."

I remember hearing Matt downstairs throwing things away...all of her medical supplies. I remember my sister holding me as I sobbed and wailed in my bed. I am not sure how I was able to get up, but I somehow did. 

And then I remembered I was still a parent. I still had a child here. I needed my Kate more than anything in that moment. I needed to feel her warm skin, and feel her breath against my cheek. My brothers brought her home that morning. Matt and I took her in our room, and told her about her sweet sister. I am not sure if she will remember that moment when she is grown, but it is something I will never forget, telling my daughter that her baby sister has gone to heaven...

The first few weeks were really hard with Kate. She had lost all of her trust in me. She was use to me packing her things at a moments notice, and dropping her off to my parents, as we quickly made our way to the hospital. We would go days, and one time, I think even a week without seeing her. Matt and I would trade off at the hospital, but when I was home with Kate, it was hard to enjoy my time, because I was so worried about Ruby. Kate was pushed to my back burner, and I  paid for it. 

All I wanted was to be needed by her. I needed to feel purpose as a mother. I felt beaten, broken, and striped of my role as a mother. When Kate would fall and cry, she did not want me. She would run straight passed me, into the arms of my mom, or sister, or a cousin. I didn't blame her. She had built her own little walls to protect herself from her unpredictable life.

I spent a lot of time reassuring her. I spent a lot of time praying that she would trust me again. But I was also spending a lot of time grieving. Grieving left me little energy to play dolls. It left me little motivation to make favorite meals, or even to speak while we ate dinner. I kept thinking about a post I wrote about "perspective". I was feeling guilt for not enjoying my daughter with a new found love and appreciation, and throwing everything aside to be the best mother. I just couldn't do it while grieving so deeply. 

Today things are a little easier, but my role as Ruby's mother is so emotionally draining, I have to fight to be there for Kate. I thought the feeling of being torn between my two girls would be over when we returned home. I was wrong.

 Every night I pass Ruby's room and go into Kate's room to adjust her sheets, and pull her covers up. Sometimes I lay down and hold her as she sleeps, thankful to have a healthy daughter, still here. My motivation to teach her the gospel, and about eternal families is a major priority. If my testimony has anchored me through this storm, I must give her the same knowledge to form her own testimony of our Heavenly Father's will. A lot is required of a mother, and I am slowly making my way toward being the mother I want to be.

Kate is a strong little girl. She, in a lot of ways, has saved me. I needed her, more than she needed me I think. She pulls me out of bed every morning, gives me the motivation I need to start my day, and reminds me that I am still a mother. She reminds me all day long, that I am not only a mother to her, but to Ruby as well.  She gives me joy.

I am thankful to my Father in Heaven, for placing Kate so perfectly into our family.

 He knew we would need her. And I think she needs us too. ;)

Ruby Girl, asleep in her Daddy's arms. Light pink favorite jammies on.

Looking back is hard. But, back is the only way I can look to remember her. Everyday I think about what we were doing a year ago. Where we in the hospital? At home? Was it a good day? Did I enjoy her? Did I enjoy Kate? Was I a good mom to my little girls that day?

 I am thankful that most days were good days for us. Even the ones in the hospital. Somewhere deep inside, I must have know. I must have known I needed to enjoy every moment of her...of my life for those months. I am thankful that the prompting I had, that we were going to lose her, was only the day before she left. I was always so hopeful, and it made our 7 months together enjoyable. I honestly did not imagine the worst. Of course, there were moments of overwhelming grief for our situation, and deep sadness for all that Ruby would have to endure, but I didn't fear for her life more than a few times.

Where were we a year ago today? We were home as a family. We worked in our tiny yard together.  Ruby hung out with Matt in the sling. Kate ran in and out of the house. I probably bathed her, and held her and nursed her. I probably played with Kate. Kate must have snuggled with Ruby on the couch. Matt held Ruby, and Kate was snuggled under his free arm. We were always so thrilled to be home, as a family. It was a rare perspective we had. We just longed to be in our home, together, just being a family.

It's hard NOT to look back, because it was a happy 7 months we had with Ruby in our family. But we are also looking forward. We are anxiously waiting to be with our Ruby again. We are anxious to have our little family all together again. We are moving forward, one step closer to Ruby everyday.

Family of Four

We had just pulled into the garage after a long busy day. The sun was just about to say "goodnight" as Kate would say. As Matt unbuckled Kate from her carseat, I made my way into the house, empty handed. Like a ton of bricks had just been dropped on my heart, I fell into pieces.

My mind quickly realized that I should be caring a sleepy Ruby into the house. I should be walking up the stairs, into her nursery and changing her into some cute jammies, and then putting her into her crib. It has been 9 months since I have done that, but it just seemed that night that she was so obviously missing from our family routine.

There have been times when I have felt her presence really strong. The temple is one of those places. It has happened a few times. My heart practically leaps with joy, and I want to just stay there forever. At the Run for Ruby, when Matt, Kate and I were just about to finish, I knew she was there with us. At my nephews baptism, I was practically looking around the room, I was so sure I would see her, because I felt her so strongly.

Last night we went to the park across the street at 9, way passed bedtime, because Kate wanted to play with Daddy. She has just been gifted a fancy light-up bouncy ball, and wanted try it out in the dark. Even with bare-feet on the cold wet grass, she giggled as she chased and threw her ball in her jammies. I jumped on Matt's back, and he took off running with me. We were all laughing, the stars were out, and I thought, this is pretty close to perfect....if we just had Ruby here. And then the thought quickly came to me, "Of course she is here, she wouldn't want to miss out on this fun family memory."And I was ok. I felt like I was ok to have fun, and not feel guilty of sad that she was not there. Because she was, I just knew it.

I think a lot of the times we are missing her the most, she is probably near us. I find a lot of comfort in thinking that she is a very active participant in our family still. I wish I could feel her more often. I wish I was more sensitive to feeling when she was close. I am learning that even though I might not feel her close, she is here.