Wednesday, April 28, 2010

Blog award!


Jennifer from The Blue Sparrow awarded me with a blog award Happy 101.. thanks so much, and I agree that it is a bit more of an upbeat type of post than the norm.. and so it is very much received and appreciated~ So here are the rules of this award:
1. copy and paste the award on your blog.
2. list who gave the award to you and use a link to her/his blog (or hyperlink).
3. list 10 things that make you happy.
4. pass the award on to other bloggers
  
SOOO here are 10 things that make me happy (in no particular order) 

1. my immediate family..Jay, Cayden and Ella..I could not have asked for a better little family than I've been blessed with. I have been a serious head case at times over the past year or so.. Jay and Cayden have loved me through it..and I love them so much..instead of it being consumed and letting our grief tear our family apart, it has brought us closer and stronger..and Ella is still bringing me so much joy, even a year later, I am so proud to talk about her, to think about her, how brave, strong and beautiful she was(is)

 2. my friends and other family members.. I love LOVE seeing, talking to, emailing, texting and even facebooking them. We are truly blessed with such a great network of loved ones. From time to time I feel alone or just needing someone to be "normal" with me, and all I have to do is reach out..and vice versa, a few of them are VERY good at sending me some love and letting us know they still think of us, remember Ella and miss her with us.. Which is so very important.. I need to know even after all this time, that people still think of her/us..even if its just a quick message..it makes my day.. you know who you are ;)


3. Our pets! we have Molly our yellow lab that we got a few weeks after Ella passed, she was a tiny lovable blond angel who made us smile when it seemed impossible.. and now she is a very LARGE angel who makes us smile.. We also have Grayson who is one of Ella's kitties.. he does not know he is a cat, and thinks he has to be with in arms reach of me at all times..which is sweet and a tad annoying at times too.. 

4. music, I love to listen to music all of the time..I always have. When I am feeling sad, I like to crank the stereo, open the windows and take it all in..

5. that I get to work from home, I would certainly rather not work at all, but sadly at the moment is a necessity. I get to work my hours when ever I want to most of the time, and I love the fact that I get to go to Cayden's school for little parties, take him lunch when he forgets it on the counter..

6. Shopping, Kirklands is my FAVORITE place to go, Hobby Lobby, Target, etc etc.. I love to shop for house/yard/garden stuff..

7. Reading a good book.. Nicholas sparks, Mitch Albom, Jodi Picoult, even some Danielle Steele ;)

8. Our infant loss group.. I love going and getting to talk about our feelings out loud, to talk to other grieving parents, and to offer advice on what helps us and listening to what helps them.. its just a good feeling to be able to speak openly about Ella and our loss.

9.  Blogging, I started this, not sure I would be able to "do it" or just afraid no one would read it because I had nothing to talk about, etc etc. It has turned into so much, keeping our friends and family up to date with Ella's health and then has turned into therapy and introduced me to so many other people.. I also love to read blogs, good, bad and ugly..


10. The thought of being able to help children when they need it the most, to make a difference in their lives.. to help others while we ourselves are healing.. and the hope of one day, one (or two) of these children will need us to be there forever family.. We are so excited to see what the Lord has in store for us..


I am going to tag

Heidi @ life with Jack
Deb @ Hudson in His Hands
Heather @ its spelled Maguire
Kelli @ a mommy, a daddy and 2 beautiful girls
Jaime @ Handprints on my heart
Britt @ peace Began
Nan @ remembering our angel triplets
Jill @ footprints on our heart
Fran @ Handprint from Heaven

I could tag and link all day, but won't for the sake of time, so if you read this consider yourself tagged!! xoxo

Tuesday, April 27, 2010

no clever title today...

I am not sure if it is my job, the process of being approved to take in and help other children, or if it is because May 15th is rapidly approaching, but I feel as though my top is about to explode. My brain literally hurts. My heart often beats so fast that I can feel it all through out my body. I even have to stop and think about what was going through my mind just a few seconds before..its normally one of the 3 before mentioned topics. I have woken to find myself buried face down in a tear soaked pillow nearly every morning for a week. I have done this off and on through the course of the year, but not daily..not since the first month or two.. I think of her and hurt so bad. one year. how? why? where did it go?why is the pain so deep after so long?

So many feelings..anxiety, sadness and on top of it, I feel like a failure..I've been thinking about this time last year when I actually thought and prayed "Lord just take her so she isn't suffering anymore"..you read it right.. I can't believe I actually even had this thought.. And I know I have not put as much time into the basketball tournament/luncheon/fundraiser as I would have liked to, and would still like to, but what if people don't come? what if its a big flop and wasted time and effort.. what if people don't care anymore?. they don't care that she died, I think they expect us to move along..get over it..don't worry about awareness or a cure..even if everyone in the world can clearly define mitochondrial disease, and then ramble off the cure, it won't bring Ella back to us..and it won't..but I can't let time go by and not do anything for her.. to honor her..I dunno.. I think today is one of these days I should have just stayed in bed..I just can't fake happy at the moment.. sorry to be such a downer..

Wednesday, April 21, 2010

the saddest question..

I was looking at some pics this morning of a FB friends little girl, and Cayden walked up behind me and asked "Is she dead too?".....crap...this is the world he lives in..2 years ago, he would have NEVER asked this..broke.my.freaking.heart. So I think I will only be looking at my precious BLM's blogs/FB's while he is away..He needs to know that people have kids that don't die.. I don't want him to grow up where he believes its the norm that peoples babies die..which it is, I guess, but who wants to carry that burden their entire life? I would think it would make you extremely sad or worry constantly or the opposite completely desensitize one to death.. either way, I think we need to show him hope, show him that the world can be good sometimes..its not all sadness and loss.. I know he is all too familiar with this side of the universe, I am not going to assume he will ever just forget about it.He doesn't walk around sad or anything, he's happy, plays, laughs, still its obviously in the back of his little head..he needs the other side too..he is just a kid,I always say the world isn't rainbows and sunshine all of the time, but for a child, it should be right? He certainly deserves it.. he has been through so much..not just losing his sister, but being shuffled around, taken out of sports and things he loved for a year, and then having to watch as everyone around him grieved the same loss as him..it is a lot to deal with for being 10 yrs old. When I was 10 my worries were if I had enough play time, if my friends could stay the night, if we could order pizza, sure as hell was not if someone else I loved would die, or if another family was feeling this loss also.. So I am feeling a bit blue and a little anger about the entire situation once again..my daughter is dead and my son is dealing with some big stuff.. and my home inspection is this afternoon..sad, anxious and nervous, what a cocktail of emotion..

Saturday, April 17, 2010

mixed emotions..

In our resource parenting class today, the topic was loss and grief and being a loss manager for the kids we will take into our homes.. it.was.heavy. I listened and could not chime in..if I spoke they would start..one tried to sneak out here and there by I would wipe it away before they could be released..There was a stick person on a page and we had little stickies to describe things that are important to us.. and we filled our page and the last one was to describe a positive character trait about ourselves.. So I have always been told I was fun and easy going. so I put this..and one by one we took them off of our page and the last one was to take off this character trait, because without all of the things that makes us up, most likely that will change.. Yes it changed.. I did not lose everything, but I lost 1 of the 2 of my everything..and I can assure you, as of late, FUN would not be used to describe me..I miss the old care-free person I once was..It literally is like that part of me is gone too.. anyway, We talked about these families, kids, their entire world being rocked by complete devastation..and everything in my heart and mind was affirmed..this is what is right, I feel as though we have the tools to help, to acknowledge and validate their pain and heal together.. they are broken, and we are broken..it just makes sense.. I am somewhat numb this afternoon/ evening..feeling a little heart sick with a little hope for the future..

Friday, April 16, 2010

faces of mito..

***before you start, scroll to the bottom of the screen and silence the sound on my play list..xoxo


Wednesday, April 14, 2010

Wednesday ramblings..

Next Wednesday is our first homestudy for fostering/adoption. My mom came over on Monday and we cleaned it up again, took flowers from the cemetery out of it and put them in the garage. I took pretty much anything extra out that I had set in there, scrapbook stuff, ribbon and flowers and a few other craft items.. we straightened it up enough..Now I need to go through it.. get out the "just Ella items" that no one will use again..Is this silly? I have toys she loved, clothes she wore, that I just can't let go of.. and not the small amount that came to my head when I thought about it.. ALOT.. I am being a little selfish, but it feels like that is all we have left of her.. The other things I am going to sort by age, clothes and toys together..so I have a week to get it done..Do I leave up the pics of her or take them down because its weird to have your lost babies pictures in the room? I am seriously asking..not just one of those, "Good question" questions.. would you think it strange? Advice? thoughts? baby lost moms and especially others, would you find it odd to walk into someones house with a child in the nursery with pics of a deceased baby? 

I am about finished with the faces of mito video..its beautifully heartbreaking..I will share it here also with you all..some of the older ones who are pretty impaired tear me apart..I am so thankful Ella did not have to suffer..I am glad she was healed in the best way, but I am also a little jealous.. at least they get more time, handicapable, handicapped, I just wanted her, still want her..and the other babies gone..man...its like when you find a blog you've never seen and read their stories, and see their faces, you just weep, empathy flows out of you like fountain..so for the last few days, its as though I have found about 35 other new blogs..in 1 sitting..agonizing is a word that comes to mind.. but at the same time I am honored to share all of these people, to put a face with mito..down the road you will remember at least a few of the faces of mitochondrial disease and will say "this disease is horrifying" instead of  "mitowhat?"

On another note, I can't believe her 1 year is rapidly approaching.. we are having a basketball tournament, but I am thinking of ways to include my bloggy friends also..baby lost and not..This blog has been so much more than intended when it all began.. I have found friendship, support, and solace all from a group of complete strangers..its marvelous..so big virtual hugs to all of you from me..

Saturday, April 10, 2010

Mito moms and dads

Mito Moms and dads~

 On Monday and probably Tuesday I will be working on a new "faces of mito" slide show that I will put to some music.. If you would like to participate, send me a pic, with name, age, and kind of complex or what they have, and DOB-DOD if applicable.. I will post and share on Facebook as well as my sites..my hope of doing this is to raise some awareness..to let people know that mito is prejudice to no one, gender, race, age, etc...SO if you are interested please email me a pic and info @ AButterfliesdream@ymail.com..also please feel free to share with other mito families.. I haven't been able to get on P2P in a while, so if you are reading this and wouldn't mind posting..the more pics the better..thanks! Jen

Thursday, April 8, 2010

stealing babies...

I had a dream late last night that I saw a curly brown haired girl in a park playing and running and she ran to a woman that I did not recognize..I was walking a few steps behind them when they finally stopped at a table. I asked how old she was and she said "about 20 months.."I looked at the girl and she faced me..it was Ella..I grabbed her and said "this is my daughter, how did you get her?!" I briskly walked away trying to get the attention of my family and she was chasing me screaming that she was hers.. I finally got to Jay and he looked at her and then looked at me like I was crazy.."I found her" I exclaimed.. The lady said "No, this is my baby, yours died!" What? how would she know this? She was a complete stranger..Jay told me to give the lady back her baby and I wept "LOOK at her! Its her..ITS HER!" "no"..he said "Jen, its not" I looked down and the baby was snuggled around me, silent, peaceful.."look at her eyes, its her..." "No..its not, give the woman back her baby" I froze and couldn't move..just looking at her..and then I woke up..tears covered my pillow and my heart was beating so fast...I am not going to lie and say I had some bright enlightenment of what the dream could have possibly meant..I didn't..I laid there and cried myself back to sleep.. ugh..I miss her... I miss her big blue eyes..

and btw..I would never steal anyone's baby..be comforted preggie friends and family.. :)

Thursday, April 1, 2010

10 years ago..

my heart felt joy like it had never felt before..I fell instantly in love and keep falling more in love every single day..

video



this post was made yesterday, but I could not get it to load on the new blogger editor..so I switched back and it worked..anyway, still feel the same a day after his birthday I guess, Right?

a world of pastel hell...

Am I being unreasonable to think that there should be a store with mens, womens, and jr boys clothes only..maybe some house ware stuff, but certainly not anything for baby girl-toddler girl.. No cutsie little Easter dresses with cute little hats or bows, and certainly no cute little pink shoes that would go perfectly with these great little pink lace leggings that I got from a craft show last year.. Or a segregated store for bereaved parents maybe? where you must walk through a separate door to enter little girl and another for little boy items..? that way its not in your face every time you turn around..and while we are doing that, how about commercials for 10$ kmart dresses, sears, kohls, anywhere like that.. maybe a block button on the remote? Thats not too much to ask for right? I know what you are thinking, its been almost a year..Get over feeling tearful over ridiculous things such as seeing little bows, hats, etc..here is the thing though..do I go the other way when I see these things? no..that would make sense..of course I walk to the items..touch them and imagine my girl wearing them.. Shake away the tears that are about to show themselves and walk away..

*sigh* I must go shop for our Easter clothes tomorrow..I have put it off for long enough.. I must dive head first into the world of pastels and cuteness.. a pastel hell if you will..either that or we could all wear something we have already..which for me is all black or all brown..and at hubbys request, I will buy something of color.. actually we have decided to wear pale pink and sport our green mito ribbons in honor of sweet girly..

Last Easter she was still with us..so frail and sick..she had a hard time being around lots of noise because the stimulation triggered her seizures which triggered aggravation, which triggered more sedatives.. This Easter she spends in Heaven.. so much better than last for her.. and as for me, I am going to remain positive, I will be thankful for the time I have with my family that is still here with us on Earth, I am going to smile and enjoy the holiday instead of sulk and feel sorry for myself that she is not here..(IE every holiday from May 09 til now)..Well that is my rant..If I don't post before then, I hope you all have a wonderful Easter weekend..