so long 2009

you started out with a bang..my daughter in a bed all hooked up to wires, IV's and anything else that could be attached, as I cried when you rang in.. it seemed as if everyone was celebrating..everyone except us that were trapped in our hospital rooms watching our children fight for their lives.. I had a healthy daughter before you so rudely interrupted, and then a terminally ill daughter and then a buried daughter.. I am glad to see you gone.. I am praying I never experience the pain you brought with you as you stormed in.. you flew by in some ways and in others were quite possibly the longest most torturous year ever.. So I bid you farewell.. so glad to see you go..don't let the hypothetical door hit you on your way out..

there is a facebook app for my year in status.. this was mine..a very appropriate last sentence..

there was another for my year in photo's and this is what mine was.. I thought it was appropriate..

I am not so naive to assume 2010 will be perfect, but I honestly pray its no worse or even equally as bad as 2009 has been.. Happy New years to our caring and loving friends (new and old) and family..you all made 2009 a little more tolerable..

sweet baby girl....

I am so sorry about all the blood they took, I am sorry about the spinal tap, CT's and xrays that was done needlessly a year ago today, the IV in your sweet little head.. I am sorry about all of the monitors and leads all over your body.. I am sorry I was not stronger for you.. and I am sorry I could not do it all in your place and Ella, I am so so sorry I could not give my own life to save yours..

ear infection...oh how I wish....

A year ago today, I took Ella to the dr. She was not her happy smiley self..She had been diagnosed with a sinus infection the week before and was told this time that she had an ear infection..probably from the drainage and crud from the sinuses.. I took her home, expecting a full recovery and to return back to normal again..I had no idea what the night time would bring.. I secretly worried it was something more, but thought that was just me being paranoid and over protective.. I really am at a loss of what I feel right now.. naive to think that everything would be okay...guilty for secretly fearing the worst..I wish so bad it was just an ear infection.. I wish so bad I had my daughter here..I wish I could have the memories without the pain..

Ella and Wubby just a couple days before she got sick..we had been to target and she was sleepy, for some reason I just wanted to snap a few pics.. glad I did..

As far as I know...

We made it through and no one mentioned Ella's name, except Jay.. our brother and SIL and his 2 boys did not make it to Jay's moms Christmas morning due to weather and something was said about being 4 people short, Jay said "no, 5 people short" and that was it.. no one said anything else.. to my knowledge anyway.. I talked to my mom a little about it and I know it's hard to know what to say, no one wants to make us upset..I get it..and actually going into it, I thought it would be better if no one said anything, but man..it stung..watching the kids play(again) and remembering last Christmas telling Ella how "next year will be more fun for you".. I had no clue what this would mean now.. she did have more fun this year..she danced at our Saviors feet on his birthday.. I honestly believe this..I believe the scripture, that we will be raised up and meet him and Ella in the air one day.. I believe that God gives us what we need, when we need it.. right now though, it doesnt help..it doesnt sting any less.. and for the life of me I cannot figure out why in the world its just plain not enough..the lack of her name makes me feel like she is already forgotten, and to hear her name sometimes breaks my heart.. where is the happy medium? Where is the peace and comfort? we are 7 months without her, and it is a little easier.. I have less of the moments of panic/anxiety/loss.. I fear the day when she will be gone longer than she was with us..crazy right, because any time without her is too much, but that 8 month and the 30th day.. its so scary..

Anyway..we made it through Christmas..Cayden got some good stuff and so did we.. I have no pics or videos.. and feel just awful about it, but we just could not get into it this year.. the tree and all of the decorations are down and we are back to normal... as normal as it gets around here anyway..

Ella in the snow..

Thank you Lisa for the beautiful collage..thinking of you always dear friend...



I have kind of been in a funk lately.. I apologize for my very random postings, comments..just being absent pretty much.. not even just my blog..IRL, I haven't returned emails, texts, FB messages...I just haven't been in a good routine the last several weeks/months.. I still read all of your guys posts and comments, emails, texts, just some of the time don't find the right words to comment, respond..its not because I don't care..I DO care... and I am praying this funk passes with the holidays..Praying for each of my BLM's as always and my friends and fam in real life..I am sorry.. sorry I am pretty much a recluse for the time being.. I feel as though I am a downer most of the time, and find it much easier to just hibernate..just observe for now.. not sure if I will post before Christmas or not.. but merry christmas friends, IRL and Bloggers, lurkers and especially my sweet family.. and since I only ordered 50 Christmas cards..here is to the rest :)

"I don't know how you do it."

I hear/read this often "I don't know how you do it" I would be a mess, you would have to lock me up etc etc.. first off...nobody asked us, we didn't voluntarily give up our baby.. second..define "it"..what exactly is it that we are doing? Barely getting by? Having to force ourselves out of bed, because as much as we would LOVE for the world to stop, it doesnt.. it keeps going round and round, despite our broken hearts..despite our fears, our grief, our loss.. Is it the fact that we paste on smiles and act as though we are doing well, while we both know that inside we are dying to crawl back into bed and cry.. pass through December, pass through Christmas, pass through the pain of watching C open his presents while our daughter is not here.. Is it that after she had just passed, that I would pray that every headache was an anuerysm about to bust, so that I too could die.. to go to be with her?? Is it the not knowing what to say when my 9 year old asks if his sisters body is decomposing? no words, so I put off the conversation, and cry because I don't know how or what to say..He thinks about it..about awful things that 9 year old kids should never ever have to deal with.. so I guess he is doing "it" too, right??what is IT that I am doing? That my husband and son are doing..because honestly..we don't want to do it anymore.. we want to be happy again.. we want to be complete again..no body asked us, and quite frankly, it just pisses us off that we are in the position that we have no choice... but to wake up every day and do "it"...day after day after day..

finally in....

Headstone is in and set.. I am so relieved.. now if everything else would follow suit and get better, we'd be just peachy..
turned out beautifully, don't you think?

whats that you say?

You are feeling generous and are burdened to give to a charity this holiday season?? May I suggest the new Isabella Magee Research Foundation? Be the first to give towards a cure for this awful disease, also feel free to share the link on your blogs, emails, facebook, anything :)

Here are a few more in case you want options
Doing good in her name, Peytons mommy Kristin is helping raise items and supporting her local NICU

NILMDTS, we did not use their services because our sweet friend Mandi came over days before Ella passed and took pics

Tulsa Childrens hospital, our home away from home for several months, the people who kept us going and home the time we were able to stay home, this is still a very new hospital and could certainly use donations.. we love it.. and the people..check it out..

I have another post in the works and will post as soon as I get time to finish.. :)

Christmas in Heaven...

I was talking with my mom the other day about Ella and Christmas last year, and how much fun it would have been to buy clothes and toys for her this year.. I said something along the lines, of even if she could come back, she wouldn't..who would want to leave Heaven? and then I got to thinking about how glorious Christmas day must be in Heaven.. Christmas with Christ himself! who in the right mind would want to come back.. I smiled as I thought about this.. I miss her and always will, but I am so happy for her.. I am so happy that all she knew in this world was love, and now all she knows is our fathers love.. and best of all, she gets to celebrate Christmas in Heaven.. Can you just imagine?


My First Christmas in Heaven

I see the countless Christmas trees around the world below
With tiny lights, like Heaven's stars, reflecting on the snow
The sight is so spectacular, please wipe away the tear
For I am spending Christmas with Jesus Christ this year
I hear the many Christmas songs that people hold so dear
But the sounds of music can't compare with the Christmas choir up here
I have no words to tell you, the joy their voices bring
For it is beyond description, to hear the angels sing
I know how much you miss me
You know I hold you dear
And be glad I'm spending Christmas with Jesus Christ this year
I sent you each a special gift
From my heavenly home above
I sent you each a memory of my undying love
After all, love is a gift more precious than pure gold
It was always most important in the stories Jesus told
Please love and keep each other
As my Father said to do
For I can't count the blessing or love he has for each of you
So have a Merry Christmas
And wipe away that tear:
Remember, I am spending Christmas with Jesus Christ this year.
~author unknown

Five...

I know of 5 babies that have been taken too soon from this earth from Mitochondrial DNA depletion..

Our cousin and her husband Amy and nick lost 2 babies.. Bailey in 2004, she was 6 months old.. and Slade in 2005 who was 4 months old.. Amy and Nick are wonderful..Amy is my hero.. she is still such a wonderful mommy to these 2 sweeties, and they must be so proud of her.. I called her the other night just super upset and she did not try to rationalize, she just told me she understood and has been there (in a certain situation) and she did not make me feel like a head case, I love that she is so honest and still maintains complete faith in the Lord. She made a beautiful grave blanket that I am going to lay as soon as the headstone is laid this week..(Pics coming soon)..anyway I just love her and Nick and her mom and her sisters and even her dad.. I am sad that this is something we have in common, but glad it is her.. I am glad that I have someone in real life who gets it. I know I can talk to her and know its in complete confidence any time I need and I hope she knows I am here for her too anytime.. :) (if you guys want to email me pics of the kiddo's I would love to have them to post..)

Second is Lisa.. my friend from up north.. Thanks to the blogger world I have had to opportunity to get to know her and her family.. They have lost 2 girls and have 2 girls still with them! ( all of which are gorgeous!) She and I email back and it is nice to just write and talk to someone.. to hear from her on what is going through her mind..and to be able to unload mine..they often turn into novels, it is so good to have that..to have someone like her..she recently made a video to honor her daughter Rachel, and watching this just sent chills up my spine.. it is so familiar.. everything just rang Ella in my ears.. she doesn't blog here anymore, but she posted this video, go over and watch it, maybe have some tissues handy..

so we have
Rachel 2.5 months old -2003
Bailey 6 months old- 2004
Slade 4months old-2005
Amryn almost 2 months old-2008
Ella almost 9 months old-2009

while I am so thankful for these two, I am so sad of what brings us together.. this disease, this disease that has no treatment, and no cure in sight.. how is there a cure for wrinkles, a treatment for ED?, and not any kind of treatment for this disease? most with this disease die before they are 9 months..Ella almost made it.. 2 days shy of being 9 months..9 months, can you just believe it?? Ella was the "old" one in the group making it to 9 months.. its not right.. we must do something about this..

This is Karina, she turned 2 a little while ago and is quite the little fighter.. she is beautiful!We pray for them every time I talk to God..pray for a miracle for Karina, that she is the one who defies the odds for a very long time! She has a lovely family and is so blessed with a mommy like Melissa, she's the best... go check them out and remember them in your prayers too!!

regressing....

I am not sure if it is because of the holidays, the stress of going through the motions without her, the memories of posing her in front of the tree, knowing that at the end of this month, 1 year ago, is when our hell started....but I regress into my sadness...into the black hole of grief that once consumed me..

I am not sure if it is because of recent news of everyone and their dog are now expecting.. I don't know if I am feeling bad for not being happy for them, or if I am jealous that they just get to have a baby and not worrying about it being gone before its first birthday, or if it is because they assume that THIS can't happen to them?? I don't know if its because no one wants to share the news that they are expecting because they are afraid of upsetting me..they are afraid I will go to bed and cry myself to sleep, awaken through the night crying of jealousy, jealousy that they get to keep their baby and I am just stuck missing her.. I can't get up and go hold her, kiss her.. comfort her when she cries...again, I regress...back into my hole...at least for now..until I have to get out and fake a smile, fake that my heart is not broken..fake that watching Cayden without his sister does not burn a hole through my heart..I will pray for that peace, pray that I don't bust out in tears every time something reminds me of her.. pray for patience of others to be gentle and know that although they may not still be grieving her, we are..