Thursday, April 23, 2009

dates in history.....

I will always remember 9/11, where I was, what I thought, the fear.. I will always remember March 30,2000.. I met him for the first time and was sooo in love.. I will always remember his first day of pre-k.. I was so scared.. he was so brave.. so many dates in my head.. its like someone hit the "record" button on my internal DVR..

I have so many.. so many for Ella.. I wish I could keep some forever and go back and enjoy the moments MORE, stay in the moments longer... and then there are some.. I want to delete.. erase the feelings that rush me when i think of them..
just to name a few~

April 2nd, 2008- found out we were having a girl.... complete.. that is how I felt...
May 27th,20008- saw her face on 3D ultrasound for the first time and melted.. oh.. those cheeks.. that sweet face...
Aug 21,2008- Saw her sweet face in person and knew I was whole....nothing was missing.. I was truly 100% happy...my husband, my son and now.. MY DAUGHTER..so beautiful....
Dec 30, 2008- we thought she had a virus and needed to rehydrate.. then no..its meningitis.. I wish it were just meningitis...something in me told me to worry.. my stomach was sick and I cried all day.. I knew there was something more... I had no clue it would be SO bad..
Jan 4,2009--something is wrong..its not just meningitis?? she is so sick...
Jan 10, 2009...met Dr Kayser for the first time.. things dont look good.. he doesnt smile..he doesnt humor us with "its probably nothing" I think I hate him...
Jan 14,2009 She had her liver and abdominal muscle biopsied.. I felt so nervous.. I literally thought I was going to die while she was back in surgery...
Feb 2nd, 2009--the day part of me died...I hate this day... we got the final diagnosis.. Mitochondrial DNA depletion.. I am SURE I hate him... is it really him or the diagnosis??.. I knew he was just someone to be mad at.. He was just the messenger...ugh.. my heart literally hurts..

everything from there is just a blur.. her face, her eyes, her smile..its all I see.. now that she doesn't smile often, doesn't talk, barely opens her eyes.. I feel sad .. I think I was in denial.. as long as she was doing all of these things, I could ignore it, pretend she was just "behind" developmentally.. now.. I cant pretend anymore.. its too real.. its too much.. I don't know how to be okay anymore... I smile when I need to, I TRY to have hope..it is SO HARD to see her this way.. We are suppose to protect our children and we cant.. we cant help her.. we cant protect Cayden from worry or the heartache he is already enduring.. and I know there is a greater plan.. I KNOW this.. and I pray that it is revealed to me sooner than later..

does any of this make sense? is it just mindless rambling..does anyone still read this even?


this is from Easter..she woke up from her nap and he went in to tend to her.. he loves her so much..

11 comments:

Erin said...

I'm so sorry that you feel this way and it seems so unfair for a parent to have to go through this. I'm always praying for you guys and praying for some kind of hope. I love you! Erin

Kina said...

I can't even imagine what you and your sweet family are going through right now. When you wrote, how it our job to protect our kids, but you can't protect her. As a mom, this is exactly what you want to do. My heart breaks for you I am praying for you and your family, I pray that God's strength, His peace, His goodness overwhelms you!

Annie said...

Oh Jen- I am so sorry you and your family are going through this. Praying goes peace and mercy over you, your family, and of course beautiful Ella!

Keisha said...

Oh Jen! Please know that people are reading and praying and hoping and crying right along with you!

Anonymous said...

Jennifer,
This is the most heart wrenching blog I have ever read. I'm not going to say "I know how you feel" because I don't. I can not fathom the brokenness that you and Jay must feel. However, I do know that God said his mercies are new every morning and by His stripes we ARE healed. Remember to keep clinging to Him in the time of need. You are the strongest person that I have ever met and I know that this journey will only make you stronger. In God's time all of the answers shall be revealed. Until then I will pray that God strengthens you. I love you my best friend!

Keyla

rhonda said...

Jen, i read this everyday... No parent should have to go through this.... I pray for Ella, you, Jay and Cayden everyday... I just remember at work, how we waited so long for you to have her, she is such a blessing.... I love you, and miss you very much at work... I miss my awesome owasso coder/buddy setting behind me....

Katherine said...

I can't even imagine what you're going through. Just know that there are so many people you don't even know that love you, and ella and your entire family so very much. Keeping you all in my thoughts every day....
And the picture of Cayden and Ella is precious...bless their little hearts....

Shelley Magee said...

Jen< I love you and am so sorry you are facing this ugly disease. The only thing I can think to tell you is; to smell Little Ella so Long and Deep that you think your lungs will burst. Her scent is a gift you don't know you have until you don't have it anymore. Jen, please don't give up HOPE. God may still have a miracle for our Ella. To lose hope is to despair. I don't know how anyone can face each day with despair. We will continue this journey with you. We will take the rain with the sunshine. Your feelings are normal. Love always. Shelley

dg darling said...

Just wanted you to know that I pray for you all daily....

Kim said...

I am so sorry this is happening to Ella. It is so hard to have our children go through illness and not be able to help them. I too believe that there is a plan and reason for these things and I also hope they are revealed sooner than later. Hoping and Praying that Ella does prove the docs wrong and gets better.
Praying for Ella, you and your family.

love305715 said...

i want you to no that my friend just lost a baby she was days before having ella that was her name too, she was beautiful just like your baby and a friend of hers posted your link on her facebook profile and i went to it and i have read every single one of your posts and all about ella and cried so many times already, i am now going to pray for you all everyday you are so strong..