Wednesday, April 29, 2009

don't forget!!

We had to cancel for today May 2nd, the rain was too much and everything and everyone would have gotten soaked .. sorry!

we will have this again next Saturday, May 9th, since it is suppose to rain tomorrow and some people may not feel like venturing out..

Benefit Garage Sale

When: Saturday, May 2, 2009

Time: 8am-2pm

Location: 12382 E 127th St N

Collinsville in the

Creekside addition.

All proceeds are going towards Isabella Magee’s medical expenses.

Rain or shine!

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% husband, my son and now.. MY 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 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..

Wednesday, April 22, 2009

lab update...

her liver enzymes were higher again.. he thinks they are just going to keep trending up and get worse.. please pray for her to prove everyone wrong again and show them she CAN get better.

Friday, April 17, 2009

Easter pix

here are a few pics from Easter.. This is Ella's outfit.. because of her temp regulation problem, we weren't able to keep her cute little hat on very long at all.. so we switched to a bow.. but I did have to get a pic of her in it :)

Easter was rough all around.. Last summer before she was born, I kept thinking how she will be around 8 months and would be sitting up, crawling, and so much fun this spring... I had no idea.. none of her "spring" clothes fit her.. she is only weighing 9lbs 3oz, so she is still in 0-3months... holidays are hard.. I want so bad for her to be happy, even if she cant be healthy.. My friend Melissa has a daughter Karina, who has the same thing as Ella.. and I found it interesting that on her carepage she tells of how rough last Easter was for them and it was exactly how this Easter was for us.. I am praying next Easter Ella will have a better time :)

Granny, papa jim and some of the grandkids

a quick pose before we left..

It seemed like alot of other people had other stuff, so there weren't as many kids as normal.. I think Cayden and Zane got a little bored..

I am thankful to have had another holiday with her.. and pray so hard for more and more.. the Lord has blessed us abundantly with our 2 kids.. although life since Ella coming has not been what I planned.. I am thankful... for every second, every minute and every hour... I think of the poem below... its not what we planned...its what HE planned.... there is a reason for this.. we just may not be able to comprehend it at this time.. maybe its a miracle for her? What a testimony that would be, right?! We don't know what is in store for us, but for now, for today...we are thankful..

still smiling.. sweet baby...

~~~~I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

written by~Emily Perl Kingsley

Wednesday, April 15, 2009


DDanny Gokey Pictures, Images and Photos

Danny Gokey Pictures, Images and Photos

so I have been meaning to post this for a long time, and I really couldn't find 2 pics to post similar to each other..but sometimes its freaky.. I wish I could find the pic of Danny as a kid and Jay as a kid..I paused it and looked at Jay and just laughed..seriously..Is Danny Gokey my husbands twin?? its more obvious when Jay has his glasses on, but I dont have a whole lot of pics since he wears his contacts all of the time...but for those who know him or have seen him...what do you think? Am I crazy? thoughts? comments? even lurkers feel free to chime in =)

by the way, I do believe Danny Gokey is going to win this season!! He is so good.. oh and NO, my husband does not sing like Danny Gokey.. although.... I wish he did...***sigh****

Sunday, April 12, 2009

Happy Easter!

This Easter as we remember the sacrifice made for us so long ago, and the resurrection just 3 days later, I am so thankful for that empty tomb and for the promise made.. I am also so thankful for my wonderful kids, husband and family.. I am thankful that we have made it through another holiday with Ella and her still in pretty good health. She is doing well and I know in my heart it is all thanks to the grace of God and all of the prayers being lifted up for her so often.. I am going to post one pic and will try to post more later this week.. thanks for checking in..

its a little fuzzy.. but its so sweet.. it was in between posing.. this is Jays (and mine too!) granny with C and Ella.. she is so great and loves her family so much... I just don't think she gets nearly enough credit!!

Friday, April 3, 2009

dont take it personal...

if we(I)don't answer the phone, text back, email back...its not personal, its not really intentional.. most of the time I have all the intentions of doing the above, but it just doesn't end up that way.. Feel free to stop by if you want, as long as there are no sick kiddos involved, its fine.. we don't think to invite people over because we are pretty much 24/7 with trying to keep up with everything.. the house is always a mess, I cant remember the last time I had on make-up or straightened my hair..I don't have time to take care of all of us, and don't have time to nourish friendships..Ella, Cayden and (not even always)Jay are my priorities...but these are the 3that I MUST nourish..I'm not being mean, rude or personal..its just my life right now.. I don't love the situation we are in, I wish it were better.. but it is what we have right now...if you want to be involved, be involved.. just don't expect us to invite you... we do read all of our emails, texts and listen to our the love and well wishes are being heard and are appreciated so much.. just please don't take it personal if we cant individually thank you... I really wish we were just a family of 4, where our biggest worry was what's for dinner, or what are the plans this weekend.. Instead our biggest worry is, "Is she going to recover again?" "are we being there are supporting Cayden the way we need to?" "how will he handle it if she doesn't recover?" We are dealt but one hand in this life, and I have to deal with what we were given... and I am sorry if it is not pleasing to others.. if you dont like it...dont look..