'Til We Meet Again, Juju

Today is Julian's funeral and I just have to share another word about him. I think Mimi just has this way of drawing us in. She has not only told us about the day to day care of Julian, his treatments and tests, but she has shared her feelings. She's been brutally honest about how hard it's been for them. She somehow makes it real for us as readers. Although outsiders, we feel as though we personally know Julian. As though we're part of his world. But most importantly, Mimi always seems to find the positive. Despite the fact that her baby was just taken from her at a much-too-young-age, Mimi continues to trust in God, thanking Him for the time with Julian, thanking Him for getting her through these days, and trusting that Julian is in His care and she'll see him again one day. How inspiring is that?

Although Mimi's updates bring me to tears, they also inspire me. Hug your kids and say a prayer for all those little ones who are hurting, suffering from cancer and other illnesses.

"She crumbles on to the bathroom floor, an unbelievable pain in her chest... What just happened? She is bleeding. She places her shaky hands on her heart ,expecting to feel blood flowing through her fingers. She looked down at them , NOTHING... The hole in her heart, the incredible pain, the deep sense of drifting away, it was all about HIS death... She is hurting beyond words...How can she explain? No one understands. Alone, on her bathroom floor, she is lost... Never will she hold him too tight again, never again will she kiss his mouth, never will she feel the weight of his little bald head on her chest and never will she have the taste of his tears on her lips... "I want him back" She cries desperately "I want him back, PLEASE GOD" She gets up and gets in the shower, lets the burning hot water run on her face. Maybe it will wash away the tears, maybe even it will take care of the cruel pain ...Maybe when she is done, things will be fixed and will be back to normal... She gets dressed, looks at herself in the mirror and thinks "who is this person? " Dark circles, a few more wrinkles, red, swollen eyes... It didn't go away, this is our normal from now on, our normal life now is us without him... Out the door, she hears the laughter of her boys. One is missing... But they are laughing still... If they can laugh, why couldn't she? If they can play and smile, she can still hug and love them, forever , because she is their mother , simply because they are part of her just as he was, just as he still is... By the grace of God, She still smiles, by the grace of God, she will keep on. The bathroom floor will still be her refuge, but as long as the laughter rings behind the door, she will always get back up..."

Julian is Free

Julian is free from his cancer ridden body and is now with the Lord. We'll all miss him, but I'm thankful that he is no longer in pain, unable to run and play. Mimi is no longer having to watch her baby waste away a little more each day. Here is the update from Mimi...

Time of Death ,11:22am ... Never thought I would ever hear these words about my 4 1/2 year old son. But this morning , those words got engraved in my mind and my heart forever. Julian fought until the last painful breath. Again NOTHING peaceful about this process until , until he stopped gasping for air.

Julian looked like a fish out of the water, trying so hard to fill those lungs ,but nothing. You could see the normal breathing motions his body made, but nothing got past his throat.Finally he stopped fighting. When he started having a hard time breathing I went to get Ken . He stood on one side of the bed and i was on there with Julian . We talked him thru his transition . We told him it would be ok . We told him we were proud of him . I told him to say Hi to Jesus for me. I told him that Cody and Jacob were waiting for him . I told him that we would be ok . I told him he wouldnt hurt anymore. I told him good night. I told him I loved him . I told him to play and run . The nurse took his shirt off and told us to touch him , that he could feel us and we needed to feel him . I put my hand on his chest. I could feel his heart beat. Then it slowed down . Then I could not feel it anymore. I heard his first heartbeat and felt his last one .

I was texting Debra right before , texted her Julian was gone, she called and got in her car and came. I got Mamie, she told Ju bye.And Papy.

We got the boys and told them . Sam asked if we were sure he was gone. Then he said it was wierd because he didnt feel like crying . Then he asked to hold him . I needed to clean and dress Ju first . Debra got here, helped me a little, cried a lot... They are not supposed to get attached,how can you not get attached to Ju?

I held Julian . Debra gave him a bed bath , as she had been doing for the past few weeks, put lotion all over him , loved and kissed on him . 1 month ago , she didnt even know him , now she is grieving just as we are . That is what Julian is all about . LOVE, unconditional love... He touched Debra, she touched my heart... Ken , Debra, Mamie, Sam , Gma and I held Julian. Maybe others did , I am not sure. Dana and Jessi came.Pastor Kevin and Vicki, Zach and Sam.Diane came by, Pastor Blair and Pat. Vickie and Gerald. Nanny.

It is now 6 something pm. Dana and her family are still here with us . I love those guys! Thank you ... Funeral home men came to get him this afternoon. Ken carried him to the van , with his blankie (his Christmas blankie he would share with every one) one of his mimis and one of his dinosaurs. We dont know any details on viewing and funeral yet. We will let you know, just make sure you have your YELLOW SHIRTS HANDY !!!!

FLY HIGH MUNCHKIN ... I love you all the way to China, you are the best ,you know that? I love your smell too baby...

Your mama, your little mama ...

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Several people have emailed me, asking me for Mimi's address so they could send a card to her.
I'm sure Mimi would appreciate that. Her address is...
Mimi Avery
111 Aviator Dr.
Fort Worth , Tx 76179

or take a minute to light a cyber candle and send a message to Mimi here.

Update on Julian

I just got another update from Julian's Care Pages. My skips a beat every time a new update comes in. Mimi is one amazing woman. I'm pretty sure I wouldn't be as strong as she is in this same situation. I had to copy her latest update here...

So ,how did we get here? Here it is January 8th 2008 (wow 2008??) , our family of 6 humans,1 cat, 2 dogs, 3 lizzards and a bunny is about to be amputated of one of its main limbs.The rest of the body won't ever work the same. Unlike the lizzards and their tails, we all know it WILL NOT grow back. The wound itself will heal but something will always be missing. The body will have to find a new balance, and for sure lean on something for support... A friend? or two? try thousands!!! For sure we will need a rock. This rock , I have personally grown to rely on more and more along this journey .
Long ago ,I believed rocks were just an annoyance on a soccer field,they made you trip, you skinned and bruised your knees on them,and they could send you to the hospital if you got one thrown at you! Just a matter of perspective.
Then this Psalm just keeps floating in my head since Chris brought it up in Sunday school...
"Find rest, O my soul in God alone, my hope comes from Him. He alone is my rock and my salvation. He is my fortress, I shall not be shaken. My salvation and my honour depend on God, He is my mighty rock, my refuge. Trust in Him at all times, O people, pour out your hearts to Him, for God is our refuge"Ps 62:5-8
God is my rock...What a concept... Strong, unshakable,unbreakable, what an amazing support to lean on when you are the most broken!
HE can be strong and unshakable for me, and caring, loving and gentle for Julian. Who else can bring you such peace and comfort?
For those who have been following Julian ,I hope that if anything,you turned to HIM for support or even it made your faith stronger than ever. I am afraid that with Julian not being healed on this earth ,it will bring anger to some hearts and God will be blamed. God, the one who let me have 4 beautiful boys, the One who gave Julian such a beautiful and amazing soul,God , who gave me the strength ,patience and wisdom to get thru every single day of this journey so I could care for Julian, his brothers and still be able to share my little king with you all...So thank God for our little King,thank God for what he has taught us and is still teaching us daily (that you dont have to be big to be brave),thank God for His will to share this little guy with us...I know I thank God for Julian and for his brothers...
Good night...
Mimi

Merry Christmas!

Air traffic controllers in Fairytale Land had a small glitch last night as the Tooth Fairy was apparently not granted clearance to land at our house while Santa was there. I'm ashamed to admit that this is not the first time this has happened. In fact, this morning, when Lex discovered the Tooth Fairy had not taken her tooth, her older siblings reassured her, "Oh, it's OK Lexi. That's happened to us before too. The Tooth Fairy gets really busy sometimes and you have to wait a couple days." (The Tooth Fairy has already made a stop here tonight.)

I'll have an update and pictures from Christmas either tomorrow or the next day. In the meantime, I wanted to give my readers, who have been following Julian's story, a little update. Although just yesterday, Mimi thought that Julian wouldn't make it to see Christmas, he did. Not only did he hold on until today, but he woke up with a big smile, asked for coffee and donuts, and was a chatterbox throughout the day. I couldn't be happier or more thankful that the Averys will have these nice memories of their last Christmas all together. I would like to share this poem that Mimi wrote last December before Julian had been diagnosed with brain cancer.

About Christmas...

What is it about Christmas that reminds us how much we miss someone?
What is it about Christmas that reminds us how lonely we are ?
What is it about Christmas that reminds us how selfish we can be?
What is it about Christmas that reminds us how unfriendly we can be?

Christmas should be about giving
Christmas should be about helping
Christmas should be about loving
Christmas should be about remembering

Remembering on Christmas Day that it is all about Him,
Remembering on Christmas day that it was all about us,
Remembering on Christmas day how little He was
Remembering on Christmas day how great He is

Never forget on Christmas day that someone is in our heart,
Never forget on Christmas day that we are not alone
Never forget on Christmas day to be giving
Never forget on Christmas day to open your home and your heart.

Because It was on Christmas day that God sent us His son
Because it is on Christmas day that we forget most about God
Because it is on Christmas day that we should always remember
that love , hope ,peace and trust dont only exist on Christmas day...

They're PENCILS!

I overslept today (shocking, I know) and got my kids to school late. I tried to find a parking spot so I could go into the office and sign the kids in. No dice. The school only has a handful of parking spaces for visitors and they're always taken by faculty and staff despite the fact that there's a half empty "staff only" lot. So I trudge into school, through the snow, across the street, dragging four kids with me.

Once in the office, Clay heads over to the cup of pencils that sits on an end table in the waiting area. This is his routine. Whenever we set foot in the office, he grabs the pencils and plays with them. When it's time to leave, he puts the pencils back and we go. So, today, he headed over to the pencils and picked them up at which point the secretary told him, in a very snotty way, "Put those down! You can't touch them. They're not for children!"

Seriously? A cup of PENCILS sitting on a low table in a SCHOOL isn't for children?! Who are they for? Do they pass them out to adults? Are they only for visiting dignitaries? Are they reserved for teachers? Are they just a priceless decoration to be admired and never touched? They're PENCILS, for crying out loud and my son was just holding them. Not stealing them. Not throwing them. Not sticking them up his nose.

I was already flustered because we'd all overslept and I was trying to get four kids ready in five minutes and my ADHD son was out of control and belligerent this morning, so when she went off on Clay for no reason, it really ticked me off. I mean, that kid gets himself into enough trouble on his own and didn't deserve to be reprimanded for touching some pencils!

Upon leaving, I looked at the principal and stated, in an out-of-control sort of way,"You know what would be really nice? If VISITOR spots were left open for VISITORS instead of being taken by staff every day!" This has bothered me for a long time, but since I know the secretary parks in a visitor spot every day and she'd just ticked me off, I retaliated in a burst of anger.

I'm mad at myself for losing it like that. I should have stopped and thought that maybe the secretary had had a bad morning herself. Maybe she'd just had to deal with a kid who wasn't behaving in class. Maybe she'd gotten a phone call with bad news before she left for school. Who knows. Anyway, I should have been the bigger person and instead, I was just as nasty as she'd been.

See? When someone is nasty to you, it's easy to turn around and act the same way to someone else. I didn't need to chew out the principal. It's much harder to turn around and be nice to someone despite the way we were treated. On the flip side, (like those Coke commercials I like) when you do something nice/good for someone else, it's pretty easy for that person to pass the kindness on to someone else.

You guys have passed a lot of kindness on to Julian and his family. I want to thank everyone for checking out Michelle's auction to benefit Julian. After I posted it on my blog, the hits on the auction jumped up by leaps and bounds. You guys are great!

I have really bad news though. I just got an email from Mimi. The results of Julian's tests today were awful. The cancer has spread through his brain and his spine. He only has weeks to live. They'll be meeting with hospice tomorrow. :*(

Cheese for Charity

A reader of mine, Michelle at My Semblance of Sanity, posted a story on her blog this past Monday about how she was having a hectic morning getting the kids off to school. Right as she was about to lose it, she glanced into the pan where she'd just made her kids cheesy eggs. What she saw stopped her in her tracks and made her think about the topic she'd been teaching her Sunday school class just the day before - Peace.

Well people started writing her, telling her to sell this piece of burnt cheese on eBay. Although Michelle said she couldn't live with herself if she made a bunch of money off this cheese because some loony person bought it, she decided that she could indeed live with herself if she earned a bunch of money to donate to Julian and his family.

Michelle emailed me asking me if I thought it would be a good idea.

"Absolutely!" was my response. "Stranger things have happened. You know - people bidding over $100 on a $4 pack of Pokemon cards for example."

Sorry to divulge this information, Michelle, but Tuesday, after the light bulb went on about auctioning the cheese to obtain some funds for Julian, Michelle ran to her kitchen to find the pan, still unwashed in the sink (Hey, we all have days like this!). She pulled it out and found that the cross shaped cheese glob was still intact!

The wheels started spinning as Michelle excitedly set out to make enough money to give Julian an awesome Christmas to remember and/or help out the family with overwhelming medical bills. Please check out her listing on eBay and pass it on to your friends and family.

Although she just listed it this morning, the bidding is already up to $100! If this is more than you can bid, but would like to donate something, visit Michelle's blog where she has a Paypal button set up to accept donations on Julian's behalf.

Thank you!

PS - Someone left a comment on my last post about the movie the Golden Compass. I'm sure you've all heard about this by now, but I thought this article was especially well written and wanted to share it if you're interested in reading.

I Know a Song That Gets on Everybody's Nerves...

Ok, so since so many people caught my little reference to The Pirate Movie (a thoroughly silly, yet fun movie very loosely based on The Pirates of Penzance), I had to put this video here. I've had this song in my head all day. Well, not all day actually. I had this song running through my brain until my daughter started this song....

I know a song that gets on everybody's nerves
everybody's nerves
everybody's nerves
I know a song that gets on everybody's nerves
and this is how it goes
bum, bum, bum
I know a song that gets on everybody's nerves
everybody's nerves
everybody's nerves
I know a song that gets on everybody's nerves
and this is how it goes
bum, bum, bum
I know a song that gets on everybody's nerves
everybody's nerves
everybody's nerves
I know a song that gets on everybody's nerves
and this is how it goes
bum, bum, bum

(repeat until your parents totally lose it)

Of course she started singing this in the car. In rush hour traffic. Just me and all six kids in the car in rush hour traffic with her singing this song. Then my son joined in. Then another son joined in the chorus followed by another daughter. Four of them singing in our closed up car in rush hour traffic. Then my little boy started singing his own version of the song which consisted mostly of his phrase-of-the-week, "Monkey poop". Not to be left out, the baby joined in the cacophony with her rendition of the song which went mostly like Ba Ba La La Da Ba Ba! At this point, I willingly retreated to my happy place. Serenity now! Serenity now! Serenity now!

Ahhh, I remember the days when I had only one little baby. His cries would break my heart because I couldn't do anything to comfort him while I was driving. His cries would just magnify in my ears mile after mile. I never would've guessed that one day I'd be tuning out six of them just as easily and naturally as breathing.



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Hallelujah the compressor broke on my fridge! It's under warranty! Until tomorrow anyway. Yay! The repair tech. tried to collect a service fee from me even though the warranty clearly states that all labor and material to replace the compressor is covered. I told him he'd have to collect from Whirlpool. Of course, this is not a part they keep in stock so I won't be able to get it fixed until next week, but it's covered so I can wait. It barely hit 50 degrees here today so I can throw all the food out into my backyard in the meantime. ;) You know what they say about the weather in Chicago - if you don't like it, wait a minute. It'll change.

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Because so many of you commented....back by popular demand - the picture of my baby smothered in chocolate.

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I have to give a little shout out to my friend Mimi in Texas! Mimi has a son, well actually she has four sons, but one of those boys, Julian, has Medulloblastoma (aggressive cancerous brain tumor). The tumor, the size of a golf ball was totally resected on March 9th 2007. This little four year old boy has (as has the whole family) been through a lot in his few years. You can read more about Julian on his care pages. The name of his page is JuliansWorld.





I know I talk a lot about different charities, but I'd be a schmuck if I didn't use my sudden popularity to help out others. I don't mind being known as a dork, but I don't want to be known for being a selfish schmuck. So, you can skim past this part if you wish, but I have to mention it anyway. My friend Mimi is selling those rubbery wristbands that are popular with kids to help offset some of their overwhelming medical bills. They say "Julian's World" on one side and "Trust God to Beat Cancer" on the other. She sells them for $5 which includes regular USPS mail. Additional ones are only $2.50. They come in your choice of yellow (Julian's favorite color because "it's like sunshine"), silver (for brain cancer), red white and blue, glow in the dark, and camouflage. They come in three sizes - large ,medium and kids (like under 8).

If you'd like to order a bracelet, you can email Mimi at mimiavery74@msn.com and give her the following information... how many wristbands, size L,M,K(for kids), color, Y(ellow) RWB(red white blue) S(silver) GID( glow in the dark) and
C(amouflage), your shipping address and chosen method of payment, check or money order, or Paypal.

Thank you!!! :D