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."

-----------------------------------------------------------------------------

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.







---------------------
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. 

Day Seven-Serve

This post needs more time than I have to give it right now. The service that we have been the receiving end of, has been so overwhelmingly amazing. I have read every card, note, text, comment, etc. (Except from the days right before, and the days right after...those are tucked away, waiting for the stronger me to emerge to read them someday.) I have learned so much about service. It is about love. It is about doing something, anything, to show your love and concern. Ruby was given so much service by everyone around. It was so humbling to witness. 

Today, please take a minute, and do a good deed for someone. I know it would make Ruby happy, and it would make our hard day tomorrow that much easier to know that good deeds are happening all around, in honor of Ruby. 

And...wear pink so you don't forget!

Day Six- Play, really play with your kids

I remember driving to the hospital on a Saturday afternoon. It was the last time we would make that drive up with Ruby. As we passed the lake by our house, I saw families out on the paddle boats, and started crying. I so badly wanted to be one of those normal families. I wanted to have just one normal weekend with my whole family home, doing normal family things. As hard as we tried, having a picnic outside of the cafeteria with a big IV pole, just wasn't super normal! 

I, like every mom out there, was guilty of feeling overwhelmed in those first few months before we knew Ruby was sick. I longed for a nap. I longed for quiet. I longed for a minute to myself. Some computer time, some time away, and a trip to Target...ALONE! It only took a few hours into our journey of hospital life to realize that what I really wanted was what I had had. Being home, day in and day out with my kids was perfect. Waking up at night, and being tired seemed like a walk in the park. I just wanted my normal life back. The thought that I would have that back someday, really gave me hope. We had a few weeks here and there...and it was really heavenly. I appreciated everything about my role as a mother and wife, and homemaker so deeply. I wrote a post about my new perspective, and it has helped me remember that time. I am guilty of falling back into some of my old habits of being frustrated as a mom. I know it is normal, but I think I should know better...I know how lucky I am to have Kate. I think I wrote that post so I could remind myself. 

 I miss Ruby so much, and wish so badly I could make memories with her now, but that will have to wait until we are reunited. She taught me to enjoy each day to the fullest. She taught me that I have the greatest job on Earth to be a mother.

Reposted.....

Monday, August 1, 2011

Perpective

The old me thought I was tired and stressed out. The old me was unsatisfied with my clothes, my weight, and my ugly carpet. The old me dreaded hearing the babies cry over the monitor, too early in the morning. The old me was bored watching cartoons, and folding laundry. The old me hated making breakfast, and pour endless sippy's full of milk every day. The old me dreaded running errands with two kids to get in and out of car seats and into shopping carts. The old me did not think it was a big deal to spend a Saturday at the beach, or paddle boating around the lake. The old me was tired and grump from walking up the hill to our house from the lake. The old couldn't wait until nap time, when I could have some time to myself. The old me hated doing dishes, and checking the mail. The old me rushed bedtime and skipped pages in bedtime stories. The old me sang lullaby's quickly, and was relucted to sing, "just one more."

What was the old me thinking?!
My heart is literally aching right now to have my old life back, but with my new perspective. What I would give to have my whole family home on a rainy Sunday morning, making breakfast, and delivering chocolate milk on a fancy platter to my little Kate. I want to forget about the dirty dishes, and get down on the floor with my girls and play, play, and play. I would be thankful for that cheap carpet, because it beats none at all. I dream of the day that I get to wake up in my bed, and hear BOTH girls waking me up early in the morning. I will make them whatever they want for breakfast, and turn the music up loud and dance while I make their pancakes (because I know that is what Kate will want.) I will get them dressed and spend time gently combing and doing their hair, and breathing them in. I won't rush them. What is the rush about anyway? I'll load them in their carseats, and give them kisses while I buckled them in. I'll be happy listening to Disney songs as we drive to Target, or McDonald's, or the park. I'll chase them, and tickle them, and push them on the swings. We will spend our evenings playing outside, and cooking dinner together in the kitchen. Bath time will be long and drawn out, just like it should be. Bedtime will have lots of cuddling, and a few bedtime stories read slowly while doing the appropriate voices for Papa Bear, Mama Bear, Baby Bear, and Goldilocks. Matt and I will fall into bed exhausted together, and thank Heavenly Father for this new perspective on life and what is truly important and ask that we might be able to always remember.

Drawing sent to us by a cute little girl! It is Kate and Ruby in their beds at home. I love this.

Day Five!

If you live in CA, register here:

http://register.donatelifecalifornia.org/RubyJaneTaylor

If you live outside of CA, register here: 

www.donatelife.net

Day Four- Enjoy a "Ruby Sunset"

I get that homesick feeling every time I watch a sunset. Actually, in the evenings, when baths, and jammies should be happening for two girls, I always get that lonely feeling. When the sunset is extra beautiful we always call it a "Ruby Sunset". Kate will always tell us that Ruby sent it to us. I think she is right. It is hard to feel sorrow, when there is such beauty. It is a constant reminder that Heaven must be near.

Day Three- Share Ruby's Story

Nothing could be more meaningful than to have Ruby's Story told as often and to as many people as possible. I felt very strongly after she passed away that her mighty mission here on this Earth was to touch lives, change perspectives, and inspire those around her to do better. It has not been easy to share my tiny girl, but I feel like I am helping her little legacy live on. She has changed me forever. She has taught me more than I could imagine was possible. I love this little peanut. I am so happy to be her Mama.


In January, a wonderful couple flew here from Minnesota, to film Ruby's Story. It was the most generous gift I have ever been given. To have her story recorded in a way that we can share it easily, has been amazing. We are truly so blessed and thankful to have new friends like Jami and Adam Olson, that we would have never met, had Ruby not brought us together. You can check out more of their amazing work here: http://www.nels-ole.com/

Please feel free to share this video on your Facebook Page, Blog, Twitter, etc. The more people that see it, the more people will know about my Ruby and Organ Donation, and I think that could change some lives.

Day Two: Family Night

If I could do one thing, it would be to have a Family Night, with my WHOLE family. 

Ruby's physical absence is very obvious every Monday Night, when we have a special family night. We know she is close to us, but we sure miss her cute chubby cheeks, and contagious laugh. 

We have had the tradition of ending our "Family Night" with a family prayer around the ottoman. After, we each put our hands in for our family cheer which goes, "Families are Forever, Families are Forever, GOOOOO TAYLORS!" 

It is kinda silly, but Kate loves it, and Ruby thought it was amusing! It is a tradition that I love. 

One of my favorite memories is from our Family Night in 2011, close to Valentines Day. We each wrote on little cards what we loved about each member of the family. I am so happy I kept them. This year we re-read them, and we all giggled at the ones from Ruby that Matt and I took the liberty of filling out for her! But, the best part was reading what specific things we each loved about our brand new family member. We made a treat while dancing to some fun music. Memories are so precious.

Dance Party!

Sisters on Valentines Day

Fun making a treat together

Little Love Bug.

There is nothing more important than families. There is nothing more meaningful that being with your family, and spending quality time making memories and drawing closer to one another. 

I hope you will have a special Family Night, tonight, and teach your children the importance of Eternal Families. Also, take the time to tell each family member how much you love them, and why. 

 

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!