to hold her one more time..

I've had moments that I regretted putting Ella's wubby in with her when she was buried. She was attached to this bunny and always snuggled it and kissed it..I have had moments where I wished we would have kept it, like she snuggled with it, so if we held it, it would be like we were holding her.. what I wouldn't give to hold her one more time..one more smell, one more touch of her soft sweet skin..

About a month ago, our local news ran a clip about Tynsey's miracle bears..I instantly got online and decided we needed one..Here is the kicker though, it meant we had to find something of sentiment, but something that could be cut up and used for the bear..Gag..maybe it was a bad idea..I can't do this..they are precious to us..how can I let them go? But I am not letting them go, this way they will be with us forever right? so here are the bears, We ordered one and my MIL ordered one. I have two more to send off for my mom and Jays granny.. but they were done so fast and I am so glad we decided to do them..to hold tight to when we are missing her too much...the pics were taken with my phone, sorry about the quality..

this one is mine, notice the arms? I blogged about this onsie here..the other is pj's and the feet and ears are a bib we took..

this is Nancy's..I loved the little flowered pajamas on her..she wore them all of the time..the other was  a little romper we had..

I am glad we did it, they turned out beautifully.. right now it sits in her room..if/when we get a placement, (see the journey to foster/adoption tab for updates) we'll put it in ours so it doesn't get torn up..

Have a second?

Take a minute to go ooohhh and ahhh over Ambers sweet little kiddos :) and read this great post she had today...

you won this battle, but believe me when I say, the war is far from over....

~Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.

~Each year, 1000 to 4000 children in the United states are born with a
mitochondrial disease.
 
I've been thinking alot lately about mitochondrial disease and how it has changed us. How 2 years ago, we really didn't even know what it was. We knew it had something to do with the liver and is extremely rare, and even though Jay's cousin lost 2 darling children to it, it was not something we had to worry about..Wikepedia describes rare diseases this way- A rare disease, sometimes known as an orphan disease, is any disease that is not common. not common...did you catch this part? ~Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.  Thirty minutes, in the time we sit down to watch Survivor or big brother, 2 children are born with a death sentence..How is that even possible in the year 2010? How is it that most don't even know what this disease is until it smacks them in the face..unsuspecting families bringing their babies home to keep forever, to watch them grow into adults, have their own children...thats the plan right? There are so many awful diseases out there, and by no means am I trying to minimize any others..I just do not understand how in this day and age, we have a cure for wrinkles, we have a treatment for erectile dysfunction, hair loss, and so many others...but not for this..not for a disease that if you are lucky enough, get to live into adulthood..and I very loosely say lucky..they do not get to walk around and just feel good, party, play sports, watch thier kids grow..no, its not like that...most likely they fatigue so fast they can barely do anything, they have severely low immunity, they have muscular diseases, renal failure, hepatic failure, seizures, severe headaches, I could go on and on..so again..erectile dysfunction has a treatment..it baffles me..
 
mitochondrial disease stole my baby from my arms. My laughing sassy toddler, my kindergartener who would have been fine when she walked in, leaving mom the one crying in the hall secretly watching, my tween daughter and her first crushes, boyfriends, first kiss and first heart ache..I will never get to explain to her that it hurts now, but there is so much more to come for her..good things..Prom dress shopping, graduation and wedding dress shopping...having her own babies..our grandchildren...its all gone..because there is nothing to do..sit and wait for her to get worse..for her time on earth to be done..
 
Mitochondrial disease has given me a broken heart, but also given me a voice. A reason to feel so passionately about something..a cure..it will happen in my lifetime..It has given me faith in God, when I hit the bottom, the very bottom of a dark and scary hole, I hear his voice reminding me that he is with me, and he is going to help us through this.. he is going to provide light again..He reminds my heart that right now there is great suffering, but one day, there will be great rewards..stay close, don't fear, I am gonna take care of you..this is hard, it is so easy to walk away..what has faith done for me, what did praying for Ella accomplish? She died..even though I prayed and kept faith..We were never promised it was going to be easy..I have to keep the faith that one day, I will see her again..I believe it in my heart..she knew God would take care of her no matter what happened...so why wouldn't I believe it too?

 
 
Mitochondrial disease may have won this round, but not this war...with prayers, faith, support and lots of work, we can beat it.. if you are reading this and want to help visit the side of my page there is a link to the Isabella Magee research fund, you can also donate in other ways, visit the UMDF.org for more info..

how time changes things..and sometimes doesn't...

I was just sitting here thinking and was curious about my posts this time last year, so I took a quick look and this was it..my how things change over a year and how others remain the same..


Tomorrow is a month since she has been gone.. a month since we've smelled her sweet breath, a month since we've heard her sweet voice, a month that last forever and has seemed as though its flew by, both at the same time...--June 18,2009

then~ I would walk into her room daily and touch all of the things she touched, look in her closet and glance at all of the things she never got big enough to wear, the hair ribbons we never got a chance to use, the toys she didn't have the energy to play with. I would hug and smell the blankets just trying to get a tiny whiff of her.
now~ I walk in and while I still think of her the entire time, I am ready to share it, hopefully soon..we've changed some things in there, added a twin, pulled in a different color and took down all of Ella's personal items. We had a sign up that said 'I found my prince and his name is daddy' a painting my cousin did of her name made into a wonderful collage of all things girly..we had her name up in pink and brown with polk a dots that my best friend spent forever trying to perfect..*which they are* so its still her room, but its not so much "HER" room..I think she would be proud of us, getting to a point where we are comfortable letting others in.
then~ I would cry day and night..and all hours in between..there was no okay, no time where I wasnt just a small saying or look that would make me crumble..
now~ I still cry, I try to designate a time to release it, I try to be okay..some days trying is not enough and its too hard and I allow myself those days..
then~ I mourned for my baby, my sweet snuggly girl that made us  laugh and cry all at the same time
now~ still mourning my baby, but more so my sassy and bossy toddler..the curly haired little diva that would have completely rocked our world with attitude..
then~ I couldn't see beyond our pain..Its not that I didn't care about others pain and problems, it was just not there, that compassion I normally feel.. I felt like "you think you have problems, you bury your daughter and then lets talk"
now~ while I will always be angry that she is not with us, I am not mad, you know really pissed anymore..I still have the moments where I think others pain or situations is nothing compared to mine, but not as many..I can honestly say that I am sorry for your loss, or sorry for your pain, the situation you are in, etc etc and I mean it..with my entire heart I mean it..for those close to me, I would do just about anything to keep them from going through pain of loss or hardships ever again..
then and now~ things that haven't changed..
*I wonder if people still think of her, if they still miss her..whether its been a month or a year.. last weekend one of my very best friends was talking about things that reminded her of Ella, and it made me feel so good..I know we think of her, her family..but what about others?
* I have a bit of a hard time around pregnant women and newborns..its not at all personal, and I can now be around a little older babies and toddlers fine (mostly) but pregnancy and newborns are hard for me..some days are easier than others, but its something I am working on..considering everyone and their dog around me is pregnant..I think its all because I don't know if I will ever be pregnant again, will we ever have a baby that is our DNA? and its so sad to think that we won't. I also keep thinking of all of the things that should have told me she was sick so early on..in my pregnancy I just had this worry, constantly and when she was born, she was so small, didn't eat well, didn't gain weight, didn't hold her head well, things I feel like as a mom that I should have caught on to..so again, its not personal, its all about issues that I am dealing with..
* I miss her and think of her all of the time.. I think of who she was, and who she could have been, I think of the things we'll never get to do with her..even though my heart aches the same as it did 13 months ago, I've adapted..I know I will never be the same after her.. I am so grateful for the 8 months and 29 days she was with us.. I am grateful for the almost 7.5 months that she did pretty well, she was awake, talking, playing, and giving us memories of her..she was here, and she made an impact..a big one..
* I would give the world for just a little more time with her..

isn't she the prettiest baby you've ever seen? I could be partial.. :) but no really, isn't she!

this grief journey is a rough one, I think its so interesting to see where we were and where we are now in it.. I never in a million years thought we would be functioning with out her, but I keep her close to my heart always. I think of her in Heaven just playing with all of her friends that are just hanging out waiting on thier parents too..

today its bad...

The flowers smell so beautiful

I tried to pick them and pull

They're nailed to the ground

I wanted to give them to you, but I can't now

There, the apple's of Edan I saw before me

I would have given you the whole tree

When I went to get that red fruit I was scared

Wishing that you were with me there

Went to bed with you on my mind

Watched the clock tick, but that didn't speed up time

Looked for you in my sheets I thought you hid in

I tried to remember where you had been

Walking with just my shadow by my side

I try to hug it, but we only collide

No one to wipe the tears again today

I had to curl my finger up and wipe the drop's away

I wrote a letter to explain how I felt

When I did the sentences only seemed to melt

Three words came through,

The only thing written on the page was: “i miss you”

I am still on internet break, but wanted to share this..today is hard..I keep coming back to the computer as if something on it will make me feel better..sigh..

unplug..

Lately I have been in a bit of a slump..I read everyone post's and am still following..but I've had a lack of words, or words that seem to make any sort of sense..I feel like I am so plugged into everything online, that whats going on around me has just fallen to the side..I love all of my "old" and new bloggy friends and facebook friends, and all of the other way I network. I have been introduced to such beauty through this loss..I've seen people give and pray and love people they have never met in real life..and for people I do know in real life, have for the most part, been more than we could ask for..but for now, I think it is time to unplug for a while..I do get my messages on my phone for email and facebook, so I will read them as they come in and respond if needed..but I have to step away from the computer..I need to refocus, regain composure and work on the relationships around me now..so for a few week.. I am going to unplug from it all..I am always available if anyone needs to talk or advice, just msg me..but for a bit, that will be the extent of my networking.. still praying and thinking of you all..

xoxo

if you have a few minutes..

hop on over to my other blog and check out the mito video I just posted.. explains exactly what happens when one has mito..Its all about awareness..thanks.. I will have a real post soon..I'm still reading and following, just in kind of an strange mood lately, so comments have been few and far between..hopefully I get out of this funk pretty soon..