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.