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. ;)