Visions of the Future....

Have you ever fantasized about your future? Or where and what you will be doing a year from now? I think about all of this all the time. Last year on the 4th of July, my mom, Myla, and myself watched the downtown fireworks from the top of the parking garage at Riley. I had envision that next year(this year) would be different....Jenna would no longer be in the hosptital and she would be watching them with us this year. I envisioned her getting her transplant and learning to live life as a normal child. I envisioned finishing up school, having a job, and just enjoying every minute of my life with the little loves of my life. Everything I envisioned last year, looks completely different as I reflect on last summer. Every day I relive moments that happened last year...Jenna being taken off the vent, coding and going back on, biopsys, cardiac caths, insurance phone calls, transplant meetings and signing the papers, wondering what infection or how high a fever was. Life as a NICU parent was definately by far not easy. I learned so much in a short 9 1/2 weeks, met some awesome nurses and friends. I owe a lot to them for their support and for taking care of Jenna.

As I go through this summer visiting memories from last summer, I'm envisioning how this next year will be and what next summer will be like. I've learned that I need to look at the positive in everything. My life is far from perfect, I am working on changing some parts of my life. I really think that it has helped to be back in school. I am now in my second qtr back and only have 2-3 more left until graduation. Going back has helped me re-direct my focus and help in many aspects, social and professionally. I envision next summer to be a summer of celebration....celebrate a milestone in my life of graduating college, Myla starting school, and maybe have a new love in my life, a new job, a new place to live, a new car.....a fresh start at life!

I know that no matter what Jenna will always be with me, she is my guardian angel. I have a counselor that I talk to and I lay it all out there to her. Being that I have decided that I need to start looking at the positive in everything, she told me the last time that I talked to her "You have such a great outlook on everything and such grace to get through everything that you have been though! You are amazing and I am in awe of you!" To hear that from a grief counselor feels amazing. I know that in the midst of a dark storm, there is always going to be something good that comes from it...no matter what the situation.  I look at my divorce and look at it being a second chance to be happy and in love again and to start fresh. With Jenna, I learned that no matter how much you are hurting inside, at least you know who your angel is and I can always have my Jenna time when I watch the sunsets.

But most importantly, I think that it is important to know that as much as it may help to always look at the positive in everything, and figure out what you need to change in your life to make sure you are happy, you need to remember that you will hit bumps in the road and life isn't always going to be unicorns and rainbows.

***With all of that being said....I've hit a lot of bumps in the road in the last year. My life hasn't gone like I was hoping or had envisioned it. I had a hazy period where I hated to be alone and did everything I could to not be alone. I have had a few lulls of depression where I didn't want to talk to be around anyone, not that they did anything wrong, or that I didn't appreciate what everyone has done for me and my family, but one thing I learned about myself is that when I am depressed I tend to not talk to anyone or go do anything....and I know that between Thanksgiving and New Year's I hit a bug bump with that. It was the first holidays without Jenna and all so very overwhelming. New Years was the worst for me, reality set in and I didn't want 2011 to end. During that time frame, I lost a few of my closest friends that I miss dearly, and wish that we could re-connect. It has taken me almost a year to come back around full circle and get back to a life of normalcy again. I miss my girlfriends, and I miss that girl time. I can't even begin to to express how much I appreciate everyones support and help since last June. From the very bottom of my heart I am forever grateful for everything that was done for myself and my family....from close friends to people I've never even met!! I can't even express how much it means to me! And I hope that I can re-connect with friends again and that we can continue our journey with awesome friendships again! I'm coming back around on things, please don't give up on me! :) ***

As I come up on Jenna's first angelversary, I am lucky enough to be able to go on an all expenses paid vacation with my best friend of 16 years to the Cayman Islands in a few days. I have decided that I think I couldn't be happier than to bring a tiny piece of Jenna with me...1) so that she can come with me and 2) assuming I can bring my self to do it, I will spread that tiny bit of ashes into the ocean of paradise at sunset. I think this is a perfect opportunity for a new beginning and to celebrate my daughters first year as a beautiful angel! Also on August 17, I plan on doing a balloon release at sunset to send her some more kisses!


"Wake up every morning with the thought that something wonderful is about to happen!"

A new year....

As a new year starts, every one likes to start fresh. I think any one would agree with me that 2011 was the worst year of my life. It was all about change and adjusting. Adjusting to a new way of life through a divorce and being a single mom, adjusting my time and life to be at Jenna's side as much as possible, adjusting to only having one child and learning how to change the way I dealt with life and certain days. I planned 2 funerals instead of a first birthday party, I've had to explain over and over again to Myla why Jenna isn't coming back. I knew that I was going to have to explain it to her over and over again before she understood it, but I was hoping that every time I did it would get easier, but it was just the opposite. She would ask me and catch me off guard, and on a day that I was doing ok, and then all of a sudden a wave of emotions would come over me.

When my divorce started, I knew that life was going to be tough being a single mom of 2 kids, one being special needs...I didn't think it was going to be this tough and that I would have had to deal with losing a child. As time goes on, I have learned to keep myself busy. The hardest times are when Myla goes to her dads (yes I know, time to my self should be quite enjoyable), as much as I enjoy the short break I miss my little bugger like crazy, and that is when I find myself missing Jenna the most. I think it's because when Myla is around she keeps me occupied, but when she isn't around I actually have time to sit and reflect, which is when I feel lonely and lost....almost like my whole world has fallen apart. But, I do have some awesome friends that are there for me, keep me company, and always ask how I am doing....and I can't thank each one of them enough or explain to them how much they mean to Myla and I.

I like to take time every new year and reflect on the past year and see what I can change to make the new year better, and this year, it won't take much! I am finding new ways to cope with losing Jenna, getting into a healthier lifestyle and to feel good about my self and body, de-clutter and re-organize my life (and house), learn to enjoy every day of life, and most importantly find a new normal and learn to be happy again. It's going to take time, but it will be worth it. There are things that happened last year that I can't change, and there are things that I changed last year that had positive and negative aspects, but we all learn from our past and that is the only way we know how to change it.

I have been through many firsts this past year and there will be many more to come this year. All being important dates or holidays. Counting Wednesdays and ironically looking at the clock at 10:42am, the 17th of each month, Jenna's first birthday, what would have been her second halloween but really her first since she was in the NICU in 2010, the first thanksgiving, Christmas and New year without Jenna. And as much as I hated 2011, I'm honestly scared to go into 2012....I feel like I left my child behind and if I go back in time I can have her back, even though I know it doesn't work that way. I am not looking forward to August this year at all, but at the same time I do like to embrace the strength I have gained from what I have been through and the lessons I have learned. I will always honor my Jenna bear no matter what. Yes I wish I could hug her, kiss her, tickle her, listen to her giggle, or just watch her kick her feet again, but those are all memories that I will never let go of.

I will make the best of 2012, and learn to love, trust, and be happy again. I know that Jenna is in an absolutely wonderful place where there is no more hurt or pain. And knowing that, I need to learn that as painful as it is and as hurt as I am and as much as I miss her, she wants me to be happy and feel the same way, but it is definitly easier said than done! But that is going to be part of the strength I work on that will take lots of time

Happy New Year my sweet angel!!!

 He will wipe away every tear from their eyes, and ideath shall be no more, jneither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”  ~Revelation 21:4

Stealing Cinderella

As Christmas gets closer and closer, the more it hits me that I don't have Jenna, nor do I have to buy or wrap presents for her and it makes me so sad that I feel like I am leaving one of my kids out of my favorite holiday. As I was sitting here the other day wrapping presents I was listening to music and a song came on and I just lost it! I was listening to the words....and as I was listening to them it just hurt more and more. I will never see my little girl running through a sprinkler with a popsicle face, ride her first bike, playing with her big sister, meeting the boy she has a crush on, or watch her get married. There is nothing I can do to change any of this but as I watch Myla grow I can;t help but think about Jenna and what she would be doing right now. She would be 14 months the day after Christmas, would my girls be chasing each other? Would Myla be "reading" her books? Would she be walking, crawling, talking?

 I miss cuddling with both of my girls and watching Christmas movies, I miss dancing with both girls in the living room to music, I miss that I can't yell at Jenna to leave the tree or ornaments alone LOL, or that Myla would try to unwrap presents and would blame it on Jenna.

On 12/17 it was 4 months since I held my baby girl in my arms, touched her, hugged her, kissed her, snuggled her, and watched her take her last breath as I told her I loved her. As painful as it was to watch her all summer I would go back in a heart beat and wish that I would have and could have held and held that little girl more. I would have done anything I could have to make it all better, or at least better than it was. I hated seeing my little girl in pain but I miss her looking at me with her sweet eyes just telling me that she wants me to be with her!

I can't avoid the holidays, but I can embrace the time that I did have with her and do things in her memory. I will donate toys to Riley every year in her honor, I miss our Riley doctors and nurses. I did have a love/hate relationship with them (i loved to hate them, but hated to love them...in the words of Dr. Ackerman) and a few of them be came very close to my family and was there for us every step of the way. Jen, Nataline, Kristine, Dr. Ackerman, Spree(Angela), Rosie....I miss every single one of you ladies!! You will never know how much you mean to me.

As I work on getting through my first Christmas without Jenna and being divorced, I see 2012 being a great year. I have some personal goals that I WILL accomplish and will do for Jenna and her battle with congestive heart failure.

Here is a link to the song that I was listening to while wrapping presents....http://www.vevo.com/watch/chuck-wicks/stealing-cinderella/USRV50700031?source=instantsearch

And here is a song that I always cuddled my girls to and would sing and dance with them, and Myla and I still do and end it with "we love and miss you everyday Jenna".... http://www.youtube.com/watch?v=w_DKWlrA24k&ob=av2n

"Merry Christmas my sweet angel! Some people only dream of angels, but I got to hold one in my arms"  I love you and miss you ever second of every day!! Love Always, Mommy

Jenna has a friend...

While we were in the PICU, I was blessed to have made some wonderful new friends. Friends that understood what I was going through because the were going through the same thing, even though our babies had different problems. It would be these meds, this infection, or that procedure/test. It was nice that we had each other to talk to, or go get coffee with. The day Jenna passed away and I could finally stand up and feel "ok" to get up for a moment, I went to my friends room to tell her the news, and her sister was there, but sent her to my room as soon as she got there. Kay was the last person I saw in the PICU before I brought Jenna down to the hurse. She hugged me and prayed for us and Jenna and I was so happy that I was able to see her before we left that unit for good.

On 9/11, Kay and I met for dinner and we talked for hours on end about everything. She was preparing to take Emma home for the first time ever the next day. Emma is a precious little girl, I could totally see her and Jenna being best friends. (I actually gave Emma one of Jenna's "outfits" I made her) I could not express how happy I was for Kay and Aaron to be able to bring home their child for the first time after spending almost 9 months in the hospital. After 9 days of being home, Emma was brought back to the hospital where later on that day she received her wings.

A parent should never have to go through burying your child. It is something you never plan on doing, or finding an outfit for. But the feeling of knowing that your baby is no longer in pain and doesn't have to fight and be miserable and uncomfortable anymore, brings peace to my heart. I always try to think of a way that I can get Jenna back but I know I will never get her back, but I know that I will see her and we will be reunited one day.

In the meantime, Jenna and Emma finally got to meet and I'm sure that those two angels are sitting there having a blast and connecting like Kay and I did. They have a special bond and experience that they share. If it weren't for our amazing daughters, I never would have met Kay or Aaron and I thank God everyday that I met them and that they are in my life! I know it will be hard for me to attend Emma's funeral this weekend, but I know how important it is to have that love and support and to see the people that have a special place in your heart.

Jenna and Emma,
Dance as though no one is watching you, Love as though you have never been hurt before, Sing as though no one can hear you, Live as though heaven is on earth.  You precious angels are in our hearts forever and we can't wait until we get to see you again!!

It's the little things...

It's the little things in life that you start to miss the most once they are gone. The waking up in the middle of the night, getting bottles ready, calling the dr, shots....I have really been short fused lately, I'm not sure if it's all the stress and greiving and not really knowing what to do or think anymore. I see posts all over about "my baby kept me up all night, is teething, walking/crawling..." and all I can think is I would be more than happy to be up all night with my baby again or I wonder how many teeth Jenna would have or if she would be crawling or where she would be. I find myself pondering the "what was I supposed to do today?" all the time, I don't have an dr appts for Jenna, I don't have to drive to Riley anymore....all I find myself doing is spending time with Myla and getting things ready to go back to school.

The other little things in life to me are sunsets and my new wind chimes. I love having my patio door open so I can hear my wind chimes and think of Jenna playing and kicking her feet while giggling telling me "momma, it's ok! I'm all better up here, just remember we will see each other again some day!"  And every night, I go outside and watch the  sunset from the stairs of my apt building and think of Jenna saying "Goodnight mommy, I love you! I'll talk to you tomorrow(through the wind chimes of course! lol)." And as I am writing this with my patio door open, the wind is blowing and my chimes are going crazy, all I can think of is Jenna kicking those darn feet!!

I caught myself looking for something last night and came across her diaper bag. I haven't touched that bag or cleaned it out or anything since the day I took her into the ER. I found her onesie, pacifier, headband and all of that in there. I just can't bring myself to clean it out or do anything with it yet. Just like I really want to scrapbook all her pics because I think it will help me, I looked at stuff today at a store and couldn't bring myself to get anything because I'm just not ready to cry a river as I put it together. baby steps.....


"Twinkle twinkle tiny light, little eyes that shine so bright, a precious baby from heaven above, fills our hearts with so much Love."

I love you sweet Jenna!! Hugs and kisses, I'll see you again some day!

Baby fever sucks!!

I'm starting to have the biggest case of baby fever....but I want MY baby!! I want to hold her, listen to her babble, cry, snore, giggle, anything. I want to just be able to pick her up whenever I want to and cuddle her and play with her and see her smile and be Jenna again.
Yesterday, Myla and I went to Brown County for some mommy n me well needed time together. I've been giving her all my coins and we came across a fountain that she threw 3 coins in and made wishes. As we were walking back to the car she looked at me and goes "Mommy, wanna know what I wished for? I wished lots of times for Jenna to be safe and happy! I really miss her mommy, can she come home and play yet?" As sweet as she is, it broke my heart because my baby will never come back home, but it makes me happy to know that she is in a better place, happy as a can be and with no tubes!!

I have been thinking a lot about what to do now with my "free time" and when it is to soon for certain things. I have decided that I will be going back to school and the qtr starts the week of Sept 12, and I'm debating on if I want to look for a part time job on the weekends that Myla is by her dad. The other thing I have decided that I want to start doing is to be there for support parents who have a long road ahead of them in the hospital, greiving the loss of a child, help with funeral planning, making a memorable slide show as well as some type of memorablia for the service, or anything else any one may need. I think by doing this, it can help them as well as myself with the process and for us to know that we are not alone.

One of the cards I received from her service had an awesome little saying and I think about it every day when I have "Jenna moments"....."Long before we're ready, we sadly say goodbye. But there are those in a far more beautiful place who are saying 'welcome home' "

 I love and miss you every minute of every day my sweet Jenna, I can't wait to see you again sweet baby girl!!!

Jenna's life story

Jenna Rose DeBruler was born on October 26, 2010 in Indianapolis, Indiana. At birth, Jenna was in the NICU at St. Francis for 3 1/2 weeks due to respiratory issues and feeding issues. Over time she battled bilateral clubfoot, congenital clasped thumbs, and poor weight gain which put her as failure to thrive. On June 17, she had an episode at home where she was dry heaving, heavy breathing, pale skin and very lethargic. On June 20, Amanda took her to her pediatrician who then sent them straight to Riley Children Hospital Emergency Room. They did a chest x-ray thinking that maybe she had pneumonia, but came back saying that she had a severely enlarged heart and they were worried about Congestive Heart Failure. She was then admitted into the Pediatric Intensive Care Unit where she was intubated to help her with breathing as well as a feeding tube placed. She had an Echo done to see how little her heart was working and if there was anything else wrong.

She was then diagnosed with dilated cardiomyopathy. Her heart was only pumping at 22% and took  up the whole left side of her chest. She was on a few different medications, two that was supposed to help her heart pump a little stronger, as well as a blood thinner that kept her from getting a blood clot that could cause a stroke.

Cardiomyopathy is a chronic illness in which there is no cure. There are a few different causes, viral, genetic, coronary, and idiopathic. Jenna's situation was narrowed down to genetic and idiopathic. There are 3 outcomes that could come from this disease, medications for life (or until a transplant is needed), a heart transplant, or not making it.

As time went on and she continued to fight she was then approved by insurance to be put on the heart transplant list. She had fought several infections, had 10 blood transfusions, and several high fevers. She reached a temp of 106.5 and heart rates around 225 several times. Because of these infections and her chronic fevers, she was never able to be listed. She fought very hard, and was the strongest little girl. Precious Jenna received her wings all on her own on August 17, 2011 while in her mother’s arms.

 She was such a delight to all of the PICU team and an overall very happy child. Because of Jenna, her family has added a few of the nurses into their lives. No matter what kind of day Jenna was having she was always kicking her feet and putting a smile on everyone’s face. 

Do not stand at my grave and weep.

I am not there. I do not sleep.

I am a thousand winds that blow.

I am the diamond glints on snow.

I am the sunlight on ripened grain.

I am the gentle autumn rain.

When you awaken in the morning’s hush

I am the swift uplifting rush

Of quiet birds in circled flight.

I am the soft stars that shine at night.

Do not stand at my grave and cry;

I am not there. I did not die.