Monday, March 30, 2009

Blog recall...

I know that God opened this door, this blog, this outlet for me to write my heart about my journey and my grief. I know that it is just that...my creative grief outlet and it will look different on any one given day. But in sharing Noah's story, I have left you out.

Right.

I get it.

This is a blog about a little boy named Noah. People hear the story and come, read, cry, and hopefully walk away encouraged or inspired.

It is that, but it's so much more. It started as that, but what I desire it to be is a place for you to come and share your story. Maybe you have a blog and write your heart out already on a regular basis. Maybe you don't and are a reader of other people's stories, thinking your life isn't terrific or tragic enough to scribe. It's not true. We ALL have a story! We ALL are here on this earth at this appointed time, directed by God, to love each other and share our stories and lives with one another. To encourage each other, since this life is quite boring living it alone!

But I am convicted in my heart because even though my intentions are to give God glory in my life, I don't always do it right. I am a selfish person. I never intended Noah's story to be self-centered because it's not "Noah's story", it's a story of our gracious Father in Heaven loving our family enough to walk through fires with us in order to draw us closer to Him and learn how to love others more deeply...showing His love. Even the book I am writing isn't going to be called, "Noah's book", nor will it be all about him...that's not the point, nor is it the most beautiful part of the story...God bringing His children together around the world is where the beauty lies.

I am nauseous to think about it and I know I am not explaining myself well, here. With my self-imposed deadline on the horizon of wanting letters regarding how's "Noah's story has drawn you closer to the Lord" for the book, I have sat back for the last few days and done a lot of talking to God. I've done a lot of apologizing to Him and want to do the same to you!

Specifically, He and I've been talking about how early on, God showed me that the whole scene: his birth, the sickness, hospital life, the death of a child...none of it was new and none of it was exclusively our story. He showed me that if I was faithful, He would use the situation for His greater good. He showed me that even if Noah wasn't healed in the conventional way that modern medicine or miracles were defined by man, that Noah still found healing in God's presence and that my heart, too, could find healing and hope, even in the midst of a loss for which I could never prepare. He has introduced me to people all over the world, some physically and some virtually, because of this story, and though many of you have taken the time to encourage my heart as far as how Noah's life encouraged your own, I haven't heard all of your stories of grief and sorrow.

I don't want to be my own voice but a voice for any bereaved parent who has experienced grief to the core. Your child's life and death has changed you in a way that has radically transformed your life! Your loss is just as profound and gut wrenching as the next bereaved parent and you want people to know your child's name...your child's favorite color, song, food, thing to do...A friend of mine on Facebook wrote on his status a while back, not out of disrespect, but to make a point that I, as a bereaved parent understood. It was, "B.Y. wonders if the loss of John Travolta's child is any more tragic than the loss of someone else's child?" My friend wasn't being insensitive to the Travolta's loss, believe me...he was trying to drive it home that just because media and cyberworld make some people out to be more than they are, we are all humans, with real feelings, and we all grieve and mourn, and it's all significant and all of it tragic.

I am sorry I have left you out. I am sorry for your loss. In sharing my story, I never meant to infer that yours isn't equally gut-wrenching or life-changing.

So, my "Blog Recall" is this: if you have lost a loved-one or have been profoundly affected by death or the loss of a child in general, and want the way your life has been impacted for the Lord as a result of it, to be included in the book I am writing, please email me at: adexoxox@gmail.com. It has been on my heart to represent and be a voice for those out there who grieve that don't feel like their child's or loved one's life, death and legacy has been heard. The new deadline is April 15th...hopefully you are already done with your taxes...

Friday, March 27, 2009

"The Cross" featuring Arthur Blessitt

This sweet man is a part of Noah's story. He came to the hospital a couple times to pray for Noah and to encourage our family. I've run into him on the street carrying his cross and stopped to talk and pray, cars passing by. Arthur Blessitt is one of the most humble men I have ever met. He truly loves the Lord and seeks to live a life worthy of His name. Mr. Blessitt even came and sat on the floor with me and Jason at the hospital after we had taken Noah off life support. He prayed with us and cried with us and was so sweet with our little man of God. Arthur Blessitt is a man after God's heart. He came into our lives at a pivotal time and inspired me as a girl who doesn't care about others' opinions of me, to stand for the truth and follow Christ, NO MATTER WHAT! I mean, you have to be pretty confident in who you are in Christ and trust that God's real, alive and coming back for us, to walk around the world with a cross on your back!

Today in theatres across the world, Arthur Blessitt's story, "The Cross" is being released. Whether your life is smoothly sailing along presently or in the midst of your greatest nightmare, if your faith is strong, or if you could give a rip about whether there is a God or not and whether He loves you or not, I encourage you to go see this movie about the life of a man, still living and still walking with a cross, that will inspire you to live a life here on earth with passion and purpose. This life isn't about us...it's about who we are in Him!

Here's a link to the trailer.

Monday, March 23, 2009

Praying for this peanut...

PLEASE PRAY! God will lead you how to pray, just stop and pray, though, for this sweet little guy, Stellan and for his family. Life in the PICU is not easy! It's emotionally excrutiating! Go here to read the updates...

Friday, March 20, 2009

I had a dream!

Oh, I wish you could have been in my dream! This is only the second dream I have had about Noah since he died. I think dreams are so fascinating! I'll share this because I want to have it written down somewhere, and why not here where other people who have loved Noah can enjoy it, too?!

Noah was in a hospital setting in a really strange medical device that was cleaning his blood. When I say strange, it was dream strange in that the plastic on the machine was yellowish and cloudy like a hamsters tubing system. His blood was going out of his body through this machine that resembled the game "Mousetrap". (Never intended to have a rodent theme going on here...) Anyway, the machine was like a large box that sat over Noah and for some reason a piece of paper was taped over the clear glass window where you could see his face, covering him. The lighting in the room got a little better and I noticed that the blood was watered down and beginning to pool on the floor. I immediately called the nurse and then ripped the paper off the cover to see his sweet face. He LOOKED right at me and smiled HUGE and then pulled his legs and arms in, really excited! I put my head in the box and said, "Hi Sweetie!" and he SAID, "Mom, I'm ready to get out of this thing!" In the dream I told him that he wasn't quite ready because of the stitches he had all over his body. Then the dream was over...it had been one of those restless nights that I slept 10 minutes on, 10 minutes off! Hate those!

I remember in the dream being ecstatic that his eyes were opened and he smiled and talked to me! His voice was so sweet! He was so alive! Recently I've been crusty that biopsies, or chunks of my guy, were requested by doctors in order to 'figure out' what was wrong with him...which is why I think the stitches were in the dream. The piece of paper being taped over the area that covered his face, well, I'm not going to lie...I have posted A LOT of pictures of Noah on this site over the last 2.5 years, but there are even more I have not shared. It's not that I didn't think you couldn't handle them, though some are down-right disturbing, it's just that when I look at them, I get so #$%^&* mad or angry thinking about all the #$%^&* he went through, seeing his rashes, how distended his little belly got, all the #$%^&* tubes and stuff. Some pictures trigger my deep love for him and others trigger my anger for "modern medicine". I'd rather go to those deep love places then let anger fester. Life, as we all know, is too short to live in anger. Besides...later he would have said, "Mom, how embarrassing! I can't believe you posted a picture of my: bare butt; nasty rashes; distended abdomen filled with a week's worth of food I wasn't passing, etc. My girlfriend might see it!" Just like you don't post your worst...

As far as what he said to me, I know from the day Noah died and how quickly he went to Jesus that he was indeed ready...the part in the dream about me telling him he wasn't quite ready was more about me, enjoying whatever moments I could with him...the archaic, yellowed plastic machine, well, it's pretty obvious that it had done it's job for a season, but that Noah was never intended to live forever on life support.

I had this dream the same day I heard the news about Natasha Richardson and the choice that Liam Neeson was having to face. My heart was, and still is, so saddened for him as her husband having to have made that choice, and for her sweet children. One site I saw had a link to an article entitled, "When is the right time to turn off life support?". I didn't hit the link because in my head, I wrote that article myself. It said, "You just know..."

Thursday, March 19, 2009

Check it out!

I'm so excited and wanted to share this with you guys! Check out this article I wrote. If you click on the article you'll see a picture of my sweet guy! If you know someone who may benefit from reading it, please forward the article to them or show them how to find it. I will be writing more articles on eHow about grief, faith, love and life. I'm not an expert in any of these, obviously, I just feel compelled to encourage in any circle where I can get my foot in the door. In order to help financially in these economic times, I am pursuing freelance writing opportunities. We'll see what the Lord opens up! It's up to Him, not me:)

Tuesday, March 17, 2009

Not my proudest mom moment...

Em and I were walking back home from the park and stopped to talk to a neighbor...


Me, to the neighbor with a ' For Sale' sign: So, I hear you are headed back to FL...is that where you both have family?
Guy: Yeah. Family and friends, kind of a support group.
Me, playing with Em's hair while talking: Well, Emily and her classmates will all miss the boys...
Em: I'm kind of happy, actually. They are the bullies.
Me: Emily Jane!
Me: I'm sorry!
Em: Well?!
Guy: It's okay, they're yucky boys, aren't they?
Me: Well, I hope the move goes well for you...

On our walk home...
Me: Em, how do you think that daddy felt to hear that you were happy they are moving away and that his boys are the bullies?
Em: Sad...but it is true, mama.
Me: Em, I appreciate and respect that you tell truth. It is also important to think of the other person's heart before we say what we are thinking, sometimes choosing not to say anything at all. I'm not mad at you, honey...believe me, I've done this more times than I'd care to admit...
Me: Please just don't tell the twins you are happy they are leaving...
Em: Okay. I won't.

P.S. (Make sure you read the post below...)

Monday, March 16, 2009

The other favor...

Remember how a while back I said I had a couple of favors to ask? Well, here's the other one...

The common thread here is that a little sweet guy named Noah has come into our lives. As our son, Em's brother, as your friend's little boy that died, as a grandson or nephew or cousin, a little boy, one of your patients, the son of a woman you've never met, but loved and prayed for anyway. And, my prayer in ever continuing this blog was to not only write about Noah and his impact on my life, but to encourage others to live more deeply, open to receiving the free gift of love and forgiveness that the Lord generously gives. Some are still here from the beginning, many have moved on, some just joining the journey...no matter how you came upon this blog, my favor of you, if you feel led to do so, is I am asking you for an email. I don't just want any email, believe me, I am not that desperate, and I'm not seeking them to stroke my ego or because ANY of this is about me...it's not! It has always been about the Lord and will remain so.

So, as part of Noah's book, I have felt strongly about including a section of stories from your lives, those impacted by a sweet little boy, hopefully drawn closer to the very God of the Universe who loves you and knows your name. Your stories are all different...some of you have already emailed me and many of those I have saved for this very purpose...to be an important part of Noah's book. And, if I've saved your email and you happen to write again, I'll try to choose one, but part of the beauty in this whole tragedy has been your stories...kind of the 'pay it forward' part of someones life...the part that lives forever...the eternal part.

The amount of emails I receive will determine how many I can realistically include in the book. And, if you do write an email, please either try to keep it brief or know that I will be editing them in order to include as many as possible. The catch is I will need these by midnight on March 31st. Any email or blog post received after that will roll over into a second book I am working on that will be in devotional format.

I understand that many of you appreciate your ability and right to remain "ANONYMOUS" and I respect that. If that is the case with you, please feel free to simply post your reply on this post, skipping the email. Or, if you want to email me but remain "ANONYMOUS" in the book, simply state that at the bottom of your email or indicate that I do not have the right to use your name in the book.

FYI, I will use your first name and last initial in the book under the letter you submit, unless permission is given, and WOULD LOVE TO INCLUDE YOUR CITY, STATE, OR COUNTRY, if you so desire. Part of the beauty, again, of this story is that Noah's blog hit every continent, including Antarctica, the day before he died, and I love geography, so that part is just a bonus:). I love to see how God allows us to know that we aren't just 1 in 6 billion but are part of a big family!

Here's my email: adexoxox@gmail.com Thank you in advance!

Friday, March 13, 2009

Just keepin' it real...

Here's a blurb from one of my favorite movies, if not my favorite, that I'd like to share. I think I've shared it previously, but I recently watched the movie again and was reminded of why I like it so much...it's a scene between Dustin Hoffman and Will Ferrell after Hoffman's character, a literary professor, has just read a masterpiece written by Emma Thompson, a depressive, fatalistic writer, prior to going to print. The book is about the life of Ferrell's character, with everything Thompson writes coming true...

From: "Stranger Than Fiction"...

DH: I'm sorry, you have to die.

WF: You're asking me to knowingly face my death?

DH: Yes.

WF: Really?

DH: Yes.

WF: I can't die right now...it's just really bad timing.

DH: No one wants to die, but unfortunately we do.

DH: You will die. You will absolutely die. Even if you avoid this death, another will find you.

DH: I'm sorry but it's the nature of all tragedies...the hero dies, but the story lives on forever...


I checked out "Stranger Than Fiction" from the library a couple weeks back(check your local library...we can get all new releases and all the old goodies for free!). Jason had gotten it from the library shortly after Noah died, but hadn't seen it since. For me, the timing in my life and the content of the story were interwoven, not to mention Thompson's character that I loved because I literally am 'commentating' life as I see it on a regular basis. It's actually frustrating sometimes because thoughts or commentaries will pop into my head that I know I should write down but either I don't have paper, I'm just drifting off to sleep, or I actually convince myself I'll remember it later when I do have access to paper or a computer, and, it mysteriously disappears from my brain cells, trapped in there tangled with all the other lost thoughts! ANYWAY, that night when I went to bed, after I had taken the time to pause the movie and scribe the above scene, I was lying there letting my brain chill out. It takes a while for me, unlike Jason who sweetly lays his head on his pillow like a little snuggly baby and starts dreamily drifting into 'Neverland'. Well, the lights had been off for a good ten minutes, Jason was out, and I yanked the chain on my light. I had a thought and had to write it. Of course, none of my journals or notepads were near my bed and I was too cold to get out to find one, but found an old envelope in my bedside table and wrote the following thoughts...

Some people have asked me if I've always been so bold...I've lost a child. Does that give me the liberty to say or do whatever the hell I want? Strangely enough, it does. It's given me license to live freely and fully, the way I was intended to live...free from other's opinions of me...focused on the eternal.

Now in sharing this, know that I don't think I can just plow over others' feelings and differing opinions. I'm not saying that. I try not to make that a general practice! But what I am saying is that death, Christ's death for all who believe, has given us all the freedom to live the way God intended us to live. Noah's death has helped me walk in that. When Jesus said that in order to live we must die, He really, truly, sincerely meant it.

I know and dearly love a woman that fears death with all of her being. She has lived in fear of so many things, not only death, and it has physically manifested in her body. It's not just old age because there are still 90+ year olds out water skiing and playing shuffle board. She is gripped by it, and the years of fearing it and her hope to live beyond 100 (not for abundant living purposes...) have literally incapacitated her. I don't know about you, but if I near 100 and am shut off from the whole world, existing, not living, I hope you won't confuse my longevity with a beautiful, long life.
Yes, people will talk about how this woman lived to over 100, but the details of the how she lived won't be the part that lives on forever.

So, since we all die, what will it take for those still out there that fear it to accept it? Will we willingly lay down at Christ's feet with our own lives, dying to ourselves, in order to begin living...I mean really, truly, sincerely, passionately, boldly, purposefully living?!

...just some random thoughts I get when I'm trying to sleep at night...

Monday, March 09, 2009

Direct line

Tonight is The Well. We'll be studying and talking about prayer, but mostly, we'll be spending time actually doing it. I've sat through many meetings in my life where we spent a majority of the time sharing our 'prayer requests' but then 'ran out of time' to actually pray together...not all of them, but enough. Sometimes, I wonder if the person 'wanting prayer' is more so wanting attention than really wanting to go before God, kick some devil-butt, and wrestle to the finish. I know I've been guilty of that. Or, what about being the one doing the praying for the other person..."Oh, I'll pray for you this week" or "Yeah, let's write them down and pray for these things on our own time". That's fine if we do what we said we would do, but I'll be the first to admit that I have often found other things to fill my time with than to sit before the King of the Universe. Why is that? I mean seriously! Why have I looked to Him as a last resort at times when I know that every time I've come to Him first, He works all things together for His good and the good of those who love Him? I guess I'm slow...NO, I KNOW I AM!


God's been showing me lately that life is circumstantial, that is, there are circumstances or situations happening around us every day...and guess what?! Satan will use our circumstances to distract us, no matter how good they are, from the very place we are called to be...at His feet, trusting and hoping in Him.


The Bible says that God already knows our hearts and requests before we ask Him, so my challenge to ALL OF US is to stop going on and on to everyone and their dog about what it is we think we want, need, and desire, how badly we are hurting, how frustrated we are with situations, other people, ourselves, and start telling Him about it...it's harder than it sounds...I'm not advocating not praying for one another...that's the point here! I am advocating that we do encourage each other in prayer first, not as a follow-up to long drawn out conversations...If we get crusty toward a friend who says, "Well, let's pray about that", because we just want to ramble on and on, I question one, our hearts and motives, and two, whether we truly trust that going to God in prayer is the optimal choice. We all know people in our lives that say something to the effect, "Let's stop talking about it and just do it!" I need that reminder every day...I just need to 'do' prayer. Do you?


"For the world runs after all these things, and your heavenly Father knows that you need them. But seek first His kingdom and His righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:32-34 (emphasis mine)

Wednesday, March 04, 2009

Life is a comedy...


I'm just trying to save some money here, people:



Em, screaming at the top of her lungs from the bathroom as if a creature had come up from the sewer and was attacking her: Mom! MOMMMMMMMM! COME HERE, FAST! Hurry, have you seen this?!


Me, in the other room, thinking my child is drowning in the toilet from the tone of her voice: What is it Em? I'm coming...


Em: MOM! LOOK WHAT TONJA BOUGHT! HORRIBLE TOILET PAPER! IT'S LIKE...PAPER!


Me: I bought that sweetie, not Tonja (Em's auntie). I'm trying to save money and be a good steward of our finances, so I bought cheaper toilet paper. I saved almost $10!


Em: Well, it's scratchy! You can see through it! Please don't buy it again...


Later, at the grocery store...


Jason: Apples are 10 lbs for $10.


Me: I only buy organic apples. Regular apples are laden with pesticides.


Jason: I'd rather you buy the nice toilet paper than organic apples...


Me: Let me get this clear...you'd rather rub soft tp on your buns that put good things in your body?


Me: NO. (Because my mouth takes precedence over my arse any day...)


Apparently my family is trying to send me a message? Apparently they aren't getting mine...when you get rid of your second car and save almost $10 on toilet paper, it seems pretty clear...we are in an economic crisis (God bless America)...and yes, that means no more "Cottonelle" Aloe Plus! It's scratchy, but there are worse things in this world...don't get me started! :)

Tuesday, March 03, 2009

Down-sizing...Ode to 'Pilot'

My sweetest guy snoozing away in his car seat on the 4th of July in SD...if I had only known...

Oh how I thought it would be a quick stay...


I still had hope here...

I get so pissed, angry, and motivated when I look at these pictures...the first two for obvious reasons, the third sentiment, because NO ONE, NOT ANY PERSON should have to experience what we did...all because doctors just don't look for #$%^&* Lyme's disease! START #$%^&* LOOKING! PEOPLE HAVE LYME'S DISEASE! MY KID WAS #$%^&* BORN WITH LYME'S DISEASE!

Maybe the second or third day...still oblivious that the doctors were oblivious...little did I know that little did they know...

I tried to put these in a progression of chronological order but I can't figure out how to upload them that way...Here, Noah isn't attached to anything except his mommy and daddy...notice that on my wrist I'm no longer wearing his hospital band...to me, that symbolized his freedom...

The progression of untreated Lyme's is dumbfounding. In just a few short months, my sweetest guy who captured my heart, could no longer even open his eyes, and hadn't been able to move for several months...not to mention the obvious need of oxygen and food intake. LYME's SUCKS!

My friend told me she was going through the old blog pics and found this one...her new favorite. I have about 3000 favorites...bittersweet favorites.

OT and PT for Noah. Though the hospital told us that they were scaling back on his treatments since he was 'just going to die anyway'.

My sweetest girl being chased by a pack of wild, cute puppies on our only family road trip to SD

One of our few family photos taken outside the hospital life, when life was sweet, at Hacienda Colorado, the Mexican restaurant Noah frequented in my belly, went to once (here) and where we had friends and family gather after his service

Noah and Em in their car seats, ready for Noah's very first car ride ever from the hospital 1.5 miles down the road to his first home


I realize this post is raw. And do you want to know how it all started?! Yesterday we dropped off our Honda Pilot at the dealership and walked away from it for good. It may sound dramatic...not trying to. We are trying to steward our finances better and just because we do have two cars doesn't mean we need two cars, so we made the decision to keep the one we actually own. Profound, isn't it?! Anyway, it's an inanimate object, obviously, but leaving it behind yesterday conjured up more memories than I would have expected...memories that will never be left behind.

Right before Em was born we bought a used Accord. It's the car she came home from the hospital in. We also had a red Blazer. Then, a while before Noah was born, a guy hit us and wrecked that car. We got the Pilot. The Pilot is what Noah came home from the hospital in.

Believe me, it was my idea to get rid of the car since Jason works from home and Em's school isn't far. I get that for us, two cars is nice, but in reality it's a luxury. I'm not going to lie that I loved the heated seats, but I can warm up my buns by exercising. I can ride my bike to get her or something or borrow Jason's sister's car. It's just a car. I just didn't realize how many memories it had carried over the years...road trips, and then, of course the ruts we wore as we made the same trip daily with it to and from the hospital...and then the day Jason and I drove Noah's sweet little lifeless body across town to the mortuary. It's where Em and Noah got to sit side by side in their car seats for 7 weeks together. It's another chapter, but I just didn't expect the sorrow to come. Financially it feels good to be free from it. Emotionally I am grateful that God has blessed me with a mind, heart, and arms that will never forget.

Jason: You doing okay?
Me: I miss my kid...
Pause...
Me: The dead one.
Jason: I gathered that...

It's just a daily journey, this thing called life, this thing called grief, days filled with joy, others with sorrows. It's part of the bigger picture, but only just that...a part, not the whole. One day, we will know in full. I look forward to that day!