Organ Donation

Imagine holding your three month old child, and hearing the words, “Liver failure.” It was the worst day of my life to that point. I waited to hear the plan. I listened to hear what medications would cure her. I braced myself to hear the hefty cost of treatment. I even imagined the list of surgeries she would need, as a team of 15 or more people filled our hospital room one cool afternoon in April. I had been nursing Ruby when they walked in. They didn’t waste much time in sharing the diagnosis, and as it sounded more and more serious, I felt myself wanting to tuck Ruby deeper under my nursing cover. Only seconds before I had been looking into her eyes, dismissing the yellowish tint, while reminding myself, “Bad things don’t happen to good people.”

It didn’t take long to notice that most of the white coats in the room had the blue words, “Liver Transplant” embroidered under their names. They must have the wrong room. Transplant? As in an organ transplant? I listened, and learned, and felt my heart break into a million pieces as it was explained that our tiny daughter would need a liver transplant to make it to her first birthday. No cure? No medication? No treatments? She needs a liver transplant to survive. As a parent, it is our sole purpose to keep our children safe. It is our responsibility to provide what they don’t have. Looking at my sick daughter, and realizing that I was completely useless in making her better, was one of the darkest feelings I have ever felt.

Some comfort came when we learned we could be tested to be a living donor for her. That comfort was quickly replaced with anger and frustration, as myself, my husband, and a few others were tested, and all turned away as a matches. The small portion they would need from our livers, were each too large for her tiny body. She needed a child sized organ. So we waited. And waited. We waited mostly while in the hospital, our small family trying to stick together through the hardest of times.

We waited for a call. We waited for someone to come into our room, and say, “We found a donor! Someone is giving Ruby the gift of life!” We were waiting and praying for someone to make a hard choice, in an even harder situation. We didn’t know who they were, or what terrible events would leave them with the choice to donate their child’s organs to Ruby, but we prayed so hard for them in their grief, and that they would say “yes”.

We waited for 4 months, until Ruby’s little body grew too tired, and too sick to keep fighting. She passed away one week after she turned 7 months old. No one said, “yes”. No one was willing to donate to our sick, tired, and sweet daughter. There was a cure for Ruby. But we couldn’t pay for it. We couldn’t find it in a foreign land, tucked away in a tropical jungle. We couldn’t beg, borrow or steal for it. We couldn’t even ask for it! We just had to wait. Wait for a stranger to decide to say “yes”, and save our daughter’s life. I never imagined, even in my nightmares, that we would run out of time. I had so much hope.

The time to learn about organ donation is now. Making the choice to donate a loved ones organs needs to be made before being placed in the awful position to decide.
If we would be willing to accept an organ to save our life, shouldn’t we be also willing to give?

For more information please visit this website: Donate Life 

If you live in California, and would like to register as a donor, you can do so through Ruby, HERE!

Ruby on Small Fry Blog

Ruby's story is being featured on the amazing blog "Small Fry" today. 

I share my feelings about organ donation and about struggling with finding a donor for Ruby.

 April is Donate Life Month, a perfect time to register, if you haven't already. 

You can register here.

Ruby's Place

Her "Place" as we call it, was painful to visit in the beginning. It was heavy and depressing and I would spend a lot of time crying there. I would often visit alone, while Kate was in preschool, taking advantage of the quiet time to ponder my grief. I would bring a blanket, and would roll up like a burrito and lay down next to her special spot on the hill. 

When we would visit as a family, we would leave frustrated because Kate always chose that time to be hungry, tired, thirsty, or have to go to the bathroom. It seemed like we were always telling her to "stop crying and just be quiet for a minute!" Looking back, of course she must have felt our heavy sadness that was hard to hide when we visited. It was her way of dealing with being in a place that  made her parents visually sad.

Her place began to take on a new role in my grief after about 6 months. I began to look forward to, and enjoy my time there. It was somewhere I could go, to feel close to her. It was time I could take out of my day that was just for Ruby. It was also the only place where I felt like I could physically care for something connected to her. 

As our hearts began to be lighter, her place became happier. We started to share favorite memories of her, sing songs together, and enjoy the sunshine on our faces. We would often visit on a Sunday afternoon, and would lay on the blanket together. Kate started to feel more comfortable there, and even "adopted" a few other Angel's Places to care for. She would always make sure the leafs were swept off markers, and potted plans turned upright after a windy day. 

One day, after an afternoon of sun and swimming this Summer, Kate and I decided on a whim to stop by to check on Ruby's Place. I was just going to jump out of the car to put a few things up, but Kate decided she wanted to get out as well. She was barefoot, and still in her swim suit, and even had goggles on her forehead.  There happen to be a hose nearby that was spraying water through a sprinkler attached to water some dry grass. Kate looked at me, and then looked at the sprinkler, and then back to me again. I looked around the grounds, and when I realized we were the only visitors, and that the spot was unused and free of any markers, I gave her a nod, giving her permission to run around in the sprinkler. I sat on a bench in the shade, and watched my little girl feel perfectly happy and content to be playing in a cemetery. It made me giggle at first, and then tears filled my eyes as I realized that Ruby had to of been running right along side her sister in that moment. I was so glad that Kate felt comfortable there, because I know that this is where she will come to feel near Ruby as the years go on as well. 

Today Kate and I visited again. It is a cool crisp day, and under the shade of her tree we cleaned up her spot, and hung the flag with her picture on it. Kate pulled me into the sunshine, grabbed my hands, and we sang "Ring Around the Rosies!" and turned in circles laughing. We had a race down the hill and back, and ran around her tree chasing each other.  When my lingering morning sickness crept up on me, I suggested we get going, but Kate said, "Not yet! I like it here!"

We have picnicked there. We have done service projects there.  We have met life long friends there. We have cried and laughed and sobbed there. We have attended candle light services, and even a few funerals there.  We have prayed there. We have learned there. We feel Ruby there.

"Ruby's Place" is our place now. It feels like an extension of our home. Of course, every time I enter through the big green gates I silently hate that we are there in the first place, but  I am happy that it has become a place of peace for our family. We have some of the darkest and loneliest of times there, but also some of the most spiritual and peaceful of times as well. 

I know that Ruby is near when we are there, with her mighty and beautiful spirit feeling sorrow and joy and yearning right along with ours.

I am a registered organ donor.

Our daughter, Ruby, died waiting for a life saving liver transplant. She died because there is a massive shortage of organ donors. 1/3 of over 100,000 people waiting for an organ will die as they wait. I never thought we would be victim to that statistic. I am a registered Organ and Tissue Donor in honor or Ruby and to give HOPE to those waiting to be saved. 

If you live in California you can register in less than two minutes here: http://register.donatelifecalifornia.org/RubyJaneTaylor

If you live outside of California, you can register here:  

http://donatelife.net/register-now/

Two

I know these pages have been quiet lately. It is not that I don't have anything to share, I have just been in a different place in my grief.

There were a few months of terrible morning sickness, and my grief simply went on hold. It wasn't that I didn't think about my Ruby, but from sun up, to sun down, I was in a nauseous ball on the couch. I knew that grieving, on top of being physically so sick, was too much for me. It was kind of a nice break to be truthful. I still thought of her and missed her, but my mind would not allow me to go beyond that. I started to miss my grief, and prayed to feel better for Matt, for Kate, and to have room for Ruby too.

Sometimes if feels good to grieve. Grief is a physical aching. When all things physical about Ruby feel gone, the grief is a welcome guest sometimes. To be honest, it feels like she is with me a lot. Sometimes if just feels normal that I can't see her, but I know she is close. I think I have so much faith in the plan, and really truly believe that Heaven is all around us, making it that much easier to deal with.

But there are painful, reminders every so often that she is physically not here. These moments come at unexpected times. They come with full force, and wreak havoc on my heart. On her birthday, after we had finished cleaning up the Run for Ruby, I was exhausted beyond exhausted, and was driving home when I realized I didn't have anything to take to Ruby's Place later that day. I was about to pass the cupcake store and thought I would run in and run out with a cute little cake for her. I picked out a strawberry cupcake with light pink frosting, and white sprinkles. It was the same cupcake I picked out for her last year. The same cupcake that would go uneaten.... I paid the cashier, and she said, "Have a good day!" Her comment instantly stung my heart. I wasn't expecting it. It just came in like a rushing river of daggers. Have a good day? Do you know that I just picked this cupcake out for my dead daughter and later we will sing happy birthday to her at the cemetery!? 

I quickly made my way out of the store, and crossed the parking lot with tear-blurred vision. I could feel the pain building, and knew I needed to make it back to the privacy of my car before my emotions went to the next level. As I closed the door, the daggers ripped deeper, as the reality of the day sunk in. It was my daughter's 2nd birthday. We should be getting ready for her party. I should be putting a cute party dress on her, and be excited about giving her gifts. Thoughts of Kate's second party filled my mind. Smiles, laughs, cupcakes, singing, candle blowing, friends... I hated the little brown box sitting in the passenger seat. It contained a pretty pink cupcake that would sit at her place, and eventually be drenched with water from the sprinklers, and then removed and thrown in the trash by the grounds workers.  In that moment it represented my loss. All I wanted was Ruby. All I wanted was Ruby, here to enjoy her second birthday with us.


I sobbed and sobbed, and let it all out in the safety of my car. Once I thought I was stable enough to drive, I started my car, and made my way out of the shopping center, and passed the park. I knew that we probably would have had her party at this park. I saw a family setting up some table clothes, and noticed balloons, and I wanted to stop and make sure they knew how lucky they were to be having a birthday party today. Surely, they could not know how lucky they were.

There have been a few moments in the past 17 months that I could imagine exactly what we would have been doing, had Ruby been alive still. Last July, Ruby would have been 18 months, and it would have been her first day of nursery at church. When we left for church that day, I looked at our front porch and thought, "If she was here, I would have made us all late by getting a picture of Ruby on her special day in the usual "special day" spot on the porch."  It almost seems like if I wished it hard enough and close my eyes tight enough, I could see us there on the porch. There have been a couple of birthday parties that she would have been invited to, and seeing the pictures of the other party go-oers makes me miss my Ruby so much I could burst. When the nursery kids walk by on a walk, I am missing her from the group. I know that in our old life, she should be there, in those situations. She should be in those pictures, she should be at that park, she should be in that playgroup. But she is missing.

It is in those moments that her physical absence is so obvious, and the hurt just hurts, and there is nothing to take it away.

We ended up bringing her balloons from the Run for Ruby, and met up with some family to have a picnic at her place. When it was just the 4 of us left, we sang happy birthday, Kate blew out her candles (wishing for Christ to come back again soon with Ruby, like she always wishes) and we each had a bite of her cupcake. We thought she would have wanted to share. :)

And then there were 5!

We are really excited that this family of 4, will soon be a family of 5! 

We are expecting a healthy baby girl at the beginning of July!

It has been a long road getting to this point, but we couldn't be more happy about the addition of another girl to this family. It makes my heart really happy to think that this new baby is being sent fresh from Heaven, right where her big sister, Ruby is. 

Matt is thrilled that it is a girl, he loves his daughters to bits. Kate said she wanted a boy, but when we found out it was a girl, was excited thinking about dressing her up, and teaching her how to walk. Me? I knew we would be send exactly what our family needed, and a third daughter sounds perfect.

There are so many emotions involved, but the thought of a new precious baby, is really pretty joyful. 

Kate keeps asking if it is Summertime yet... I wish Kate! It can't come soon enough!

Run for Ruby!

 

We have spent the last 6 months planning Ruby's run. Last year it was the perfect thing for us to pour our grief into. When my heart ached, I would sit down and make plans for the run. This year it has been more fun planning it, and making it be a day of celebration. The Run for Ruby comes on her 2nd Birthday this year. I know it will be hard, but I can't think of a better way to spend it. We will have friends and family all together, doing something to make a difference in honor of our girl. 

I realized this morning I haven't posted anything on my blog yet about this year's run, and it is only a week away. 

I know a lot of you do not live near, or are out of state, but we wanted to make sure to let everyone know they are invited. It is January 5th, in Rancho Santa Margarita, CA.  If you are close, please come! We have a 5k, 10k, and a Kids Run. Red Cross will be there doing a blood drive, Be the Match adding people to the bone marrow registery, and of course Donate Life, to register people as organ donors. We have a radio station, AMP 97.1 coming to play music and do giveaways, and we have bounce houses, face painting and an awesome raffle! 

If you live far away, and can't come, you can still participate! If you register as an "Out of State Participant" we will mail you the Run for Ruby T-shirt, the medal, bib number, and some goodies from the bags next week. You can run on your own, or with friends that day, and send us pictures that we can post on our Facebook page on on here! Last year we had about 50 people do this, and it was so fun to see pictures from all over of people running for our Ruby girl. 

Blog readers can use this Promo Code: BLOGREADER to get $10 off registration making the 5k: $30, the 10k: $40 and the kids run only $5.00. Out of State would be $15, but the cut off to register out of state is the 1st. We will then need to mail these out in time for the 5th!

This is our main fundraiser for the year to make sure we can keep putting on our events, and most importantly raise awareness about organ donation, and to help families that are waiting, weeks, months, and even years on end waiting for transplants.

Holding her

The first days were filled with thoughts of Ruby suffering. In the weeks that passed I tried desperately to train my thoughts to skip over those awful days. As the months went on, I was more in control of what I thought about, and what I skipped over. 

 

It had been a long time since I have let myself go to that place. I was laying in bed, trying to go to sleep. I was missing my little baby, and thinking of her sweet face and happy eyes. I remembered that right before she was to be intubated, I asked for a few minutes that we could hold and love on her. Once intubated, it would make it very hard to hold her, and I knew she would be sedated, and sleeping. I figured it would be a little while before we saw her awake again, since she would be intubated through this rough time, and through her transplant and in the days after. 

I remember walking over to the side of her crib, and she reached for me. She had never done that before. She grabbed my fingers and squeezed them. I held her and loved her and she looked so deep into my eyes. The was the last time I saw her awake. That was the last time I held her living.

These memories first came sweet to me, but were then followed with the hours and days after our sweet moments with Ruby. Each flash of a memory felt like a brick dropping onto my chest. One after another, relentlessly. I had not been to this dark place for so long, and I was untrained for the heaviness and hurt that these memories were inflicting on my soul. 

After I could take no more, I asked God to help me. Please take this pain from me, it is just too much. I got out of bed, and walked quickly into her room, thirsty to be reminded of her existence in our home, and in our family during happy times. I curled myself up in her rocking chair, and wrapped myself into one of her blankets and looked around her sweet room. A sticky smudge of Tylenol on her dresser, her clothes from the hospital, still not put away. I could see her in each of the outfits, and it brought happy memorials back into my mind, of dressing her each morning... of laying under the trees at the hospital... and showing her off to the hospital staff. Sometimes, just going off memories alone is not enough. I need to see the physical evidence that she was here. It happened. She was my actual daughter, in the flesh. I cared for her, I touched her, I nursed her, I mothered her. Those things in her room remind me of that. 

After wiping my tears with a burp cloth I kept in the pocket of the rocker, I felt peaceful again. Sometimes going through such a dark and deep grief can leave me feeling closer to Ruby. I am beginning to think it is necessary every so often to just let down my guard to my thoughts and emotions, and let the hurt sink deeply in. It is a good reality check. It puts my perspectives back into place. I reminds me of what is most important, and confirms my testimony of eternal families, and a plan that God has created for my family. I don't like it right now, but I have hope that one day it will become beautiful to me.

Service Project

 If you are local, please come help us!!!



Info for Service Project on Thursday

Date: Tuesday December 6th
Time: 10am-when we are finished!
Where: El Toro Memorial Park
5751 Trabuco Road Lake Forest, CA 92630
What: We will be cleaning, and placing a flower at each of the angel’s places.
Please Bring: Watering can, washcloths or towels, scissors, a potting shovel, and a grocery bag.
This is the perfect project for children to help with. Hope to see you there!

Last year we were in a lot of pain, having lost Ruby only 4 months earlier. We found a lot of comfort in visiting her "place" as we call it, at the El Toro Memorial Park. We also found a lot of peace when we found ourselves doing service as well. When we learned about the Angel of Hope ceremony, we thought it would be the perfect opportunity to spruce up each of the children's markers, and leave a flower for their families as our first official service project for our newly formed Ruby Jane Foundation. Having lost a child, one of the hardest things to deal with is feeling like your child will be forgotten. Some families do not live close enough to visit often, and we wanted them to find their child's place looking beautiful. We hoped that we could lessen the sting of the families coming to visit that night, and help brighten their day knowing that their child is not forgotten, and their “places” were cared for.

Last year was our first year attending Angel of Hope Ceremony, having just become parents of our Angel Baby, Ruby. We were nervous it would be painful and too hard to see so many families in the same position as we were; one family member short. As we pulled into the gates of the cemetery, we were overcome with peace. We saw so many families, just like ours, holding candles, and surrounding the beautiful lit Angel of Hope monument. Losing a child can feel very lonely at times, and that night we realized we were not alone. It gave us the strength we needed to see all of the other families that had made it through such terrible grief and could still function. 

Florida

I recently went on a trip to Florida to watch my brother participate in the Ironman. He had told me a few weeks before the event that he was doing it for Ruby. I wanted to be there for him from the start of his training, but when I knew it was for my girl, I wanted to be there even more. 

A few days before the event, I was getting ready for the day when my sister-in-law Megan called me and said, "How fast can you pack your bags?!" An hour later I was on the way to the airport. I was so thrilled, but also a little sad to be leaving Matt and Kate, and traveling alone for the first time since before I was married! It didn't take me long to realize that I was definitely not alone. I know Ruby loves me, and is always watching out for me, whenever she can. 

 

My brother did amazing during his race. It spent so much time preparing for the Ironman, but it was still going to be a big challenge. I knew that Ruby had to be there to help him when he needed it most. Shortly after he finished he told me that a few times it was so hard he did not know how it was going to finish, but knew that Ruby was with him in those moments. It made my mother's heart so happy to know Ruby was there, looking out for her uncle when he needed her. I was so glad I was able to be there and to witness such an amazing accomplishment, especially when it was dedicated to my girl. 

I was surprised by how many shells, especially sand dollars were all over the beach where we were staying. There were TONS of broken sand dollars. It was my goal to find a whole one before we left. 

We all searched, everyday, and never found one. The day of Ruby's 22 month Birthday, I walked out to the beach, and saw my mom standing knee high in the water. Right before I reached her she started jumping up and down, having found a whole sand dollar! She said it was Ruby, and gave it to me. It was so sweet! That day I searched and searched, and found many beautfiful shells up and down the beach, but still thought at least Ruby could help me find one of my own! I might have even asked her to send me one! Just before I was about to give up my search, I thought I would grab a few broken pieces, just to show Kate when I got home. I looked down, and reached for a large piece under the clear water, and pulled out a whole sand dollar! I couldn't believe it. I guess I just need to ask her for those little signs more often! I found it only about 30 seconds after asking her to help me find one! 

It wasn't perfect, it was rough around the edges, and a little dull in color, but it kinda reminded me of myself. I knew that Ruby was with her mama, even in Florida, and that made me feel really happy. 

A little dream

I have had very few dreams about Ruby since she passed away. The other night I dreamed about her, and it was so real, and so clear that I wanted to record it before it escaped my memory. 

I had left a room for a second, and was coming back when I saw a little toddler. I did not see her face clearly, but knew she was mine. I remember thinking how tall and slender she was. And she was walking! I quickly started clapping with excitement and said, "She is walking!" The other person in the room looked at me like I was crazy and said, "You never knew she could walk?" I remember feeling really confused and embarressed. Well of course she can walk, she is nearly two, but why was the this first time I had seen her?! 

When I woke up and started to replay the dream in my mind, I knew it must have been Ruby I was dreaming about, and it all made sense. 

I am so heartbroken that I have to wait, what seems like an eternity, before I get to see her again. I can't wait to watch her walk, and play, and smile and giggle. The dream gave me a little boost and reminded my gently that she is never too far away.

“I will not leave you comfortless: I will come to you."

"Because of Him, even our Savior, Jesus Christ, those feelings of sorrow, loneliness, and despair will one day be swallowed up in a fulness of joy."

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I am thankful. 

As a member of the church of Jesus Christ of Latter-Day Saints, I believe in modern day prophets. We have one, on the earth today, his name is Thomas S. Monson. I believe that God would never leave his people without his voice guiding and directing His people, and His church on the Earth again. Each October, and again in April, instead of going to our church services on Sunday, we stay home and get to watch what is called General Conference on TV. The leaders of our church take turns giving inspirational talks about topics that relate to the struggles that we are having in our day. We also learn more in depth about gospel topics such as the atonement, repentance, and eternal families. Since I can remember, I have always felt like these speakers, speaking to literally millions of people, were talking directly to me. This passed General Conference was no different. 

There are 4 sessions, the first of which starts on Saturday morning. I was busy getting dressed and ready to head out to Kate's soccer game, and listening while I applied my make up when I heard the words, "I would like to speak to those who have lost a child and have asked the question, “Why me?” or maybe even questioned your own faith in a loving Father in Heaven." I thought immediately, "Heavenly Father knows me." He knew I needed to hear what this man is going to say. I was glued to the screen."

Now, I have read any and all books I can get my hands on, relating to this topic as it relates to the gospel. I have read my scriptures, talked to very spiritual and knowledge people, and most importantly have pour my heart and soul out to my Father in Heaven who listens and teaches over time, through the Spirit. I thought that maybe this man, Elder Shayne Bowen, was going to teach me something I had missed. Something big even. But that did not happen, per say.

What I did learn, was that I was not alone. As he related his very personal experiences and feeling of losing his 8 month-old son, I felt like he was reading the words written in the deepest, darkest parts of my own heart. I realized that is okay to feel that way I feel, and not be doubting the Lord, or His blessings. I can feel angry, and hurt, and disappointment and fear, and still have a testimony of His plan, and his mighty gospel. Having the gospel does not make this terrible trial, "OK", it just means it has a happy ending...one day! 

After a really great day as a family, I conveyed my frustration to Matt that is just never would feel totally perfect. There was just always going to be something missing. RUBY is missing, and how could we ever had a perfectly joyful and content day, when she is not in it. We have come pretty dang close, but I think that day will be reserved for our great reunion. The next day, when I heard Elder Bowen speak, he said, "Sometimes people will ask, “How long did it take you to get over it?” The truth is, you will never completely get over it until you are together once again with your departed loved ones. I will never have a fulness of joy until we are reunited in the morning of the First Resurrection."

I wanted to share a few of my favorite quotes from Elder Bowen's talk, and I hope it speaks to those who have lost any loved one, especially a child:

"As I felt the guilt, anger, and self-pity trying to consume me, I prayed that my heart could change. Through very personal sacred experiences, the Lord gave me a new heart, and even though it was still lonely and painful, my whole outlook changed. I was given to know that I had not been robbed but rather that there was a great blessing awaiting me if I would prove faithful.

My life started to change, and I was able to look forward with hope, rather than look backward with despair. I testify that this life is not the end. The spirit world is real. The teachings of the prophets regarding life after death are true. This life is but a transitory step forward on our journey back to our Heavenly Father."

 

"I have learned that the bitter, almost unbearable pain can become sweet as you turn to your Father in Heaven and plead for His comfort that comes through His plan; His Son, Jesus Christ; and His Comforter, who is the Holy Ghost.

 

What a glorious blessing this is in our lives. Wouldn’t it be tragic if we didn’t feel great sorrow when we lose a child? How grateful I am to my Father in Heaven that He allows us to love deeply and love eternally. How grateful I am for eternal families. How grateful I am that He has revealed once again through His living prophets the glorious plan of redemption.

Remember as you attended the funeral of your loved one the feelings in your heart as you drove away from the cemetery and looked back to see that solitary casket—wondering if your heart would break.

I testify that because of Him, even our Savior, Jesus Christ, those feelings of sorrow, loneliness, and despair will one day be swallowed up in a fulness of joy. I testify that we can depend on Him and when He said:

“I will not leave you comfortless: I will come to you.

“Yet a little while, and the world seeth me no more; but ye see me: because I live, ye shall live also.”⁵

I know I have not been left. I have been comforted. I will have my Ruby again, and then too, I will also have my fullness of Joy. 

Sometimes and Always.

Sometimes I wish it hadn't happened to me. I was sitting on my sister's couch last weekend, and I looked in her kitchen and saw Ruby smiling down from the fridge. And then I thought, "Dangit, why does that have to be MY baby that people hear a sad story about?" It was much, much easier to hear the sad stories, than to BE the sad story.

Sometimes I wish it hadn't happened to me. When someone asks how many children I have...I wish I could happily reply "TWO!", and not get awkward when I am asked their ages. The words, "Our youngest would be turning 2 in January...but..." hurts, every time. Sometimes I don't feel like explaining to strangers, so I just leave out the "but" of the explanation. It was easier to reply "2 and a 1/2 and a newborn" with a big fat smile on my face!

Sometimes I wish it hadn't happened to me. When I look at pictures from when Ruby is here, I long for my old life. I long for the old me. There are times when I feel like a bystander in my own life. Times when I know something should make me laugh and or bring me joy...and I just can't feel it. I wish I would have been protected from the reality of just how fragile life is.

Sometimes I wish it hadn't happened to me. I find an image of myself holding my baby girl close to me. Her tiny hand resting on my arm, my shoulder, my face, or my own hand. I realize that I had her, she was real, I use to hold her and nurse her and love on her! I could touch her? It seems so foreign to me now. I walked into my house after a busy afternoon and looked at our family picture on the wall, and Ruby almost looked photo-shopped in. It was the strangest feeling. It just looked so odd to see my husband HOLDING Ruby.

Sometimes I wish it hadn't happened to me. I wish I didn't feel resentful towards mothers publicly complaining about their children. It's normal to complain about your children, yes!, but when I am aching for my own child to just BE, hearing about teething, pooping, messes, and sleepless children makes me a little crazy inside. Do you know how lucky you are? No. I really do not believe anyone can realize what they really have until it is gone. I know that I didn't. If I had known, OH, if I had know!... I would have never put that baby down. I would have taken a thousand more pictures. I would have taken video,  after video, after video! I miss her mean cry. I miss changing diapers, and I miss sleepless nights. I miss well checks, and the 10 seconds of crying after a shot! I wish I had my two here, and that I was stressed about all the small things. I wish I was the mom complaining, because it sure beats having none of that to complain about.

Sometimes I wish it hadn't happened to me. But it did. It happened. It HAPPENED. My child, my daughter, my baby; died. She was here, and then she was not. In an instant, her heart stopped beating and just like that...she was gone.

Always? Always I am grateful she is mine. It would have been worse to not have had her at all. I am constantly amazed at her far reaching influence. It is a confirmation to me, that she did in fact live, and that she did in fact fulfill her purpose of touching the lives of those who learn about her. I am always, always thinking about her, trying to better myself, trying to become more like her. Ruby? She is always. She is always mine, always around me, and always will be. And that makes a little more do-able.







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For those of you that do not know me in "real-life", I feel like I need to explain something. This blog use to be a place for me to record the stories of my family. Since Ruby came, and went, it has slowly become a blog about her. For right now, it does not feel right to post my feelings about her, and then the next day blog about a fun vacation or a TV show, etc. I have gotten a few emails from sweet people wishing I would feel happiness at some point. I want you guys to know that I DO! We are happy most of the time. We sing, we dance, we laugh! A LOT! We have spent a lot of this year traveling, spending time as a family, and finding joy in the things that we have around us. For some reason, when I am feeling down, this is my place. I feel like Ruby is known on these pages, and it feels appropriate to chronicle the continuation of her legacy here and also my journey of grief. This, oddly, is my safe place.

Ruby Jane Wristbands

 

 

A few months before Ruby passed away, we had these wristbands made for people who wanted to show their support for her. It has become a little something more now. I love wearing my wristband, and hope everyday that someone asks me about it, so I can tell them about my girl. We send them to whoever would like one, for free. We only ask that you will consider becoming an Organ Donor, and you take the steps to become one if you decide it is right for you. We also ask that you share her story as often as you can. Ruby was here for such a short time, and I know that she was meant to touch people, and give them a different outlook on life. She may be gone, but she is still touching anyone who hears her courageous story. 

We chose Romans 12:12  which says, "Rejoicing in hope; patient in tribulation; continuing instant in prayer;" For me, it was my motto while she was sick. It gave me hope that maybe she would be healed, encouraged me to have patience that the time would come for her transplant, and solidified my faith in prayer, and that I was being heard. The scripture takes on a different meaning to me now. I have a hope that I will be with Ruby again someday. I am encouraged to be patient through this trial and until I am reunited with her again, and to not give up.

If you would like a wristband, please fill out this quick form with your information, and what size and color you would like (we also have grey). We will be sending these out very soon.

  

Form found here: CLICK!

Forgetting for an instant

In the first weeks, and months her absence was seen everywhere. Swing in the corner, binkies in my purse, bottles in the dishwasher,  stained onsies in the hamper. Not only was her absence seen everywhere, but it was felt constantly, all day long. In that first week or two, several times during the day, my breasts would quickly sting, and I would think, "Time to nurse!" only to realize there was no baby to nurse. I remember waking up and thinking it was odd I had not heard her cry yet. Only to realize I would never hear that cry again. After I tuck Kate in at night, I longingly stare at Ruby's crib while lingering in the doorway. I used to walk in there, looking for a baby to re-swaddle for the night. When she was here, I was use to getting sleep when it might come, and once I was awake in the morning, I hit the ground running. Meds, TPN, nursing, naps, diapers, Kate, baths, doctor appointments, etc, etc. In the weeks after she left, it was so quiet. I didn't know what to do with myself. So much of who I was, was burried with my daughter. The daughter and sister that our family had adored more than anything, and centered our life around, was gone. She was so obviously gone. 

Those feelings and thoughts of forgetting she is gone have mostly subsided, so it surprised me the other day when those familiar feelings pained my heart once more. It was a Sunday afternoon. Kate was taking a nap for the first time in months. I was waking up from my own nap on the couch and looked at my husband still snoozing. The trees were blowing outside, and the thought of what a perfectly happy Sunday afternoon it was, crossed my mind. In my mind's eye I saw Kate and Ruby both napping, knew Matt would be asleep for awhile, and I was content to start browsing my recipes for a dinner idea. It occured to me that she was gone, almost the exact second that I forget and thought she was still here. 

A few minutes later I was standing over a steaming pot, mindlessly stirring its contents, when I happen to glance at the time, and again, I forgot. I was just about to say, "Hey Matt, can you go get Ruby up from her nap." It surprised me. It surprised me, and it hurt, and I am sure my dinner was a little extra salty from some rogue tears, but I was also happy. I am happy that her presence is felt so strongly, that it practically feels like she never left at moments. I savor that feeling. I savor the feeling that she is here, that she is still part of this family, forever. 

As unpleasant as it is to forget and then remember that my child has passed away, that second of forgetting is pretty amazing.