Saying Goodbye

It's not something you ever really get used to.  Specifically I mean, saying "Goodbye" for good.  And by "for good" I mean until we meet again in God's presence, but who knows when that might be?

I get emails from friends, friends of friends, family, strangers, many different people who share a link to either a story, blog or email about a little kid who is sick or dying.  I knew when Noah was in the hospital that he most certainly wasn't the first sick kid on earth and unfortunately would not be the last.  And I don't mind receiving these emails at all!  Though my heart breaks for them, knowing I can pray for the families helps me even on my own journey.

Weeks leading up to our decision to take him off life support and offer him as a gift to God, I was also made aware that we weren't the first parents, nor were we the last, to be placed in such a situation.

But, it's not something you ever really get used to, even if it's something with which you are familiar.

I have a girlfriend who has a non-profit organization, offering perinatal hospice care and support to families who have received a fatal diagnosis for their sweet baby.  Because of support she had leading up to the delivery, moments together, and tender time of saying "Goodbye" when her daughter was born, she is able to encourage others on their journey...but, it's not something you ever really get used to just because you have experienced it.

Today I received an email about a little boy who was removed from his ventilator earlier this afternoon.  His parents are brave.  They are strong.  And at the same time they are holding onto that last moment for a miraculous intervention this side of Heaven.  And, all at the same time, their hearts are juggling a million emotions of peace in knowing their boy won't suffer any longer, grief because life didn't turn out the way they had hoped, dreamed or planned, anger because if they had control of the Universe they'd most certainly change the outcome of their biggest nightmare.

At least I am guessing that's what's going on in their hearts, among other things.  I don't know because I am not them, and even though I've walked a very similar road, saying "Goodbye" is not something you ever really get used to...

Prayers for his family and for their hearts to know that even though his footprint on earth was small and too short for our liking, it's his heartprint that will last a lifetime.  Either way, whether we can see the hope in it or not, it doesn't mean it doesn't suck and that it's ever easier to say "Goodbye."

Saying "Goodbye" isn't something any of us should ever get used to. 

I'm not so sure, though, that there's anything we should ever get too used to...because when we do, even though there's a level of comfort, it can teeter between "familiar" and "taken for granted."

My point is this:  life is precious, the first breaths, the final moments, and every day in between. 

Shocking similarities...

...but thankfully, different!

(photo by Sara Lazio of Lazio Images...she rocks!)

(photo courtesy of Michelle Arnold...one of my favorite pictures of all time!)

I have more pictures to share. In fairness, the boys were not the same age in the above photos.

The first baby pic is taken at 3 weeks...the second is 5 or 6 weeks.

I have photos where they look like identical twins.
(Seriously, Ryan couldn't have just looked Italian or Asian or something?! Yeah, no. His dad is Czech/English, so that would not have worked...nope, he had to look just like his big brother!)

Noah was 7.5 weeks when he was admitted to the hospital.

Ryan is 7.5 weeks today.

...I am grateful to have passed the 7.5 week mark...

...but I'm still just loving him one day at a time!

A look back...

On our overnight away last week in memory of Noah's birthday, we headed up to a quiet little cabin and spent a little family time doing things we think Noah would have loved to do...and things his big sis loves to do, here and now!

Like feeding and petting beautiful horses...

And being together as a family...

And touching slimy fish...


And letting Daddy touch slimy fish that Em catches with her Princess fishing pole, but just poses with...

And hanging out with real cowboys like this one named Gary...

And touching more slimy fish, like this big one Daddy caught...

And stealing the camera at breakfast to capture half-asleep parents like these ones...

(Maybe this daddy should start drinking coffee???)

And sitting on Daddy's side of the booth because Daddy time is AWESOME!
(Notice the shirt on the beautiful toothless girl above...that just 'happened' to be a 'hand me down' from a friend.)

And hanging out with her most favorite man on earth!

And skipping rocks with Mommy while Daddy tries his hand at Princess fishing pole 'fly fishing'...
(Note: Mommy had her record of 7 skips until her stone went all the way across the creek into the bank, Em's record was 3...great job, kid!)

And then following this double rainbow down the mountain for 20 minutes, while Mommy bawled and thanked God for such an amazing gift and Daddy tried to video tape it. Here's the You Tube link...

It was a beautiful day and we were grateful for the time away as a family. When we got home, flowers were waiting from family and friends, along with a sweet treat for Em to "share" with her brother.

Noah, I don't know how you celebrated in God's presence, and even though I would have rather you been here, (or rather me THERE), smearing frosting through your hair and touching slimy fish with your sister, I am grateful for the time we had to remember. Your life was short according to the standard of time we use here on earth, but it was rich, so to me, little guy, length is not a good measure of impact! Yours has been HUGE! SO proud of YOU, Sweet Noah! Love you bigger than the Universe! Mom, xoxox

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..."

Hey Everybody!

So, not sure really who or how many are out there anymore, but in the next few days I have a couple favors to ask. The only way I can repay you is to thank you in advance for taking the time to read this, take action, and hopefully help make a healthy and lasting impression on other people's lives because you spoke up...

The first favor has to do with raising awareness for Lyme's Disease. As you may know from reading here, Noah's stool killed dozens of mice at the CDC but they never determined why. He had something infectious, but they used all his stool in the first round of testing, so never figured it out. Well, through further testing and blood work, we did find that Noah was born with the antigen for borrelia Burgdorferi, aka Lyme's Disease which was somehow given to him from me. I didn't realize it had been dormant in my body for years. Many people don't!

Continued research is being done regarding Lyme's, if it can transfer to a fetus during pregnancy, if it's presence in a small child, undetected, is the link to Autism through vaccinations and a slew of several other genetic disorders and diseases. The problem is, starting with the FDA and the CDC, not enough attention is being paid to this disease. So many people are being told it's just in their heads or have been given faulty clinical diagnoses for other things like MS, Lou Gehrig's, Rheumatoid arthritis, Chronic Fatigue Syndrome, Fibromyalgia, among other things. In some cases, OBVIOUSLY, those are the proper diagnoses, but in others, it's a misdiagnosis and it's the person and their family that miss out on the truth and on health.

So, yes, you know I don't watch Oprah anymore, not because I hate her, because I don't. Mostly it's b/c I rarely watch TV, but I know that is rare. We all know that in the media, if Oprah endorses or draws attention to something, it becomes a household name. Well, I am part of a Lyme Network. I receive emails, and as you all know, I still do research because I want to spare any other parent the journey I have travelled and continue to walk. Well, apparently there's a 'call' for topic interest on Oprah's web site and Dr. Oz is looking into bringing up Lyme's on the show. Below is the info. Would you please, please, PLEASE write in? You don't even have to have suffered from Lyme's but just writing in that you know of families who have been affected by it is so helpful. Believe me, I don't think that this is the only way to raise awareness, but it is a step forward.

Forwarded from Open Eye producer Kris Newby
Thanks to all of the people who wrote in to Oprah! We need to ask you another favor -- to write in again! Dr. Oz will be looking at this link!

Even if you wrote before, write again and ask Dr. Oz and Oprah to do a show on UNDER OUR SKIN and the controversy of chronic Lyme. Dr. Oz is interested but needs to see bigger response. Our last community page had 140-some comments. There were 150 people who wrote in to a recent question about toilet paper -- certainly we can get more people to write in about something as serious and life changing as Lyme disease.

Everyone spread the word! Write in and ask your friends to write in. Please - we don't have much time!

Click here to go to the link.


Believe me, I could write a dissertation about the effects of borrelia Burgdorferi on the human body. It is not just a little bug that attacks the body, like catching a cold. It's a stealth organism that attacks the cells of the body, can sit dormant for YEARS undetected, and when imbalance takes a toll on your body, it's activated to wreak havoc. It is not a respecter of persons and IT IS NOT LIMITED TO LYME, CT, or the Upper Northeast! People from every state in the union have tested positive for the antigen for Lyme. We all hate the word 'CANCER'. We all need to hate the word 'DISEASE', in general!

*You don't have to give your street address on the email link form above. If you'd like a suggestion as to what to say, shoot me an email at: adexoxox@gmail.com

Here's what I wrote, fyi:

Hello Dr. Oz. Apparently for the last several years I have had Lyme's Disease. I say 'apparently' because one, I didn't know I had it, and thus, didn't know it could sit dormant for years. I had symptoms over the last 20 years but never thought they were anything other than the average flu or strep infections. The only reason I was made aware of my condition was due to a 5.5 month stay in the hospital with my 7 wk old son, Noah. I took him in for chronic diarrhea but he was admitted for nystagmus testing. Then, his stool killed dozens of mice at the CDC (sent in for botulism, as a precaution for his hypotonia). To make a very, very long story short, after one and a half months, the ICU physicians, neurologists and geneticists were at a loss for diagnosis. They clinically wanted to call it a leukodystrophy, but couldn't because of normal lab test results, including DNA sequencing, and the infectious stool at the CDC, which was inconclusive. Finally, we sent our own samples to reputable labs for testing through outside doctors. Noah's blood and mine both showed the antigen for borrelia Burgdorferi, but not the antibodies. There are so many schools of thought on how Bb is transmitted. I don't really care about that. There will always be politics in medicine. My concern as a mother of a deceased child (we ultimately had to remove Noah from life support after 5.5 months w/o answers) and as a woman considering pregnancy in a later stage of life now, though Lyme free, is the lack of attention the FDA and CDC pays to this devastating disease. My question for you is why is Lyme's so 'hush hush'? There are many speculations, including some research, regarding Bb's link to many other horrible conditions. Are you willing to raise awareness, to think outside the box, and to educate the many millions of people who watch Oprah daily about the truth about Lyme and how it silently affects thousands, if not more, of people everyday? I appreciate your time.


The other favor is about the book. I'll ask later this week...Thanks, you guys!

Kind of a big deal

Well, long story short, Noah had the antigen for borrelia Burgdorferi (Bb) in his blood. He did not have the antibodies. Bb is a spirochete (a spiral shaped organism) that acts in a stealth manner and attacks the body at the cellular level. Bb morphs between a cystic phase where it is dormant and an active phase. Bb can remain dormant for years in your body, many times with the infected person not even knowing of its presence, until a flare up occurs, which can be aggravated by different things. Bb is the reason for Lyme's disease...it is what lives inside the infected tick, or other vector, that delivers the disease to the infected person. We sent my blood off while Noah was in the hospital...they found over 6 spirochetes in my blood...theoretically, my breast milk should have provided Noah with the antibodies to strengthen his sweet little body...but my body wasn't producing the antibodies because it obviously wasn't recognizing Bb as foreign. Does this make sense?

Well, doing the Avon Walk for Breast Cancer was great, but it also took a toll on my body and aggravated my Bb. And, I'm finally going to do something about it. It's taken me a while, obviously, to take this step. Seeing as how I don't have a lot of confidence in traditional Western medicine, I've chosen not to follow their Lyme's protocol which is 3 weeks of antibiotics, covered by insurance. That 'protocol' works only if you've just been infected, not in the case of chronic Lyme's disease. Chronic Lyme's patients usually need months, even up to a year, of hard core antibiotic treatments, and even then, relapses may occur. And besides, I tested 'negative' on the ELISA test, having only one antibody, therefore, according to their standards, a negative result...though my blood was sent to the guy's lab in CA who invented the ELISA test for the CDC, and that's where the spirochetes showed up in my blood. Interesting! I won't go off on many of my conspiracy theories...

Anyway, the reason I am sharing this here is because for over two years now I have done countless hours of research on this topic. Tomorrow is another part of the puzzle, and since many of you were here during the journey, I wanted to include you in this, as well. Tomorrow I will begin a homeopathic remedy for Bb. There are ten vials in all and I need to take one every three days. I am going to journal how I feel as it's possible that I may not feel amazing during this treatment. After one month, my doc will test me and see if I need to do another round. I am really excited and nervous at the same time. The part that will be the most difficult is the way I have to eat during the treatment. I have to avoid all things white, meaning; flour, sugar, processed carbs, white rice, and dairy. For the most part I eat this way, which means I'll be eating meat and veggies, which I like, but it's the chocolate that I don't know how I'll do without :)

For the record, one, I don't ever recall being bit by a tick, though it could have happened. Two, Noah never got bit by a tick, obviously...I've been bitten by countless mosquitoes, a few nasty spiders, biting flies, and hundreds of ants, but don't recall a tick bite. And three, Jason and Emily both test negative for Bb.

Depending on how or if this treatment works, which, by the way, a doc in CA and my doc here have had success with...well...

***10/13 a.m.: I already found a loophole! Ghirardelli natural unsweetened cocoa with 100% lactose free whey protein, stevia extract, ice, scoop unsweetened almond butter, original rice milk, and a Tbsp of Udo's 3/6/9 omega oil (and a banana if you aren't worried about glycemic index issues)...for anyone wanting chocolate and not able to eat the foods I mentioned above. I'm good at finding loopholes!

Mother's Day perspective

(August on the c-pap, asking for healing...)
(January 12, 2007, thanking God for the miracle of Noah...)
(The night of January 12th, resting in the arms of God, Mom wondering if God was going to keep him or let him come back to mom and dad on earth...)

Perspective, trust, and hope…(the unedited version of what I shared on Mother's Day...I had 5 minutes, so I left some stuff out...Sorry, it's a bit long...)

When Pastor Shawn told me that one of his scriptural references for today’s sermon was from Exodus 2, a few thoughts flooded my mind. It's the story of Moses’ mother placing him in a basket in the river after holding onto him for 3 months. I thought about Moses' mom putting him in the river, probably collapsing on the bank, physically sick to her stomach, thinking out loud, "Did I really just stick my sweet boy in the freaking Nile River with a bunch of crocodiles?!" And then the big sister running along the bank, watching his basket thinking to herself, "What kind of crazy parents put little brothers in baskets in rivers?! Did my mom really just do that?!" Believe me, these thoughts went through my mind a myriad of times...Then I also thought, well that's great, but she got to see much of the outcome of her life and death choice. Her kid wasn't swallowed whole by crocs, he was scooped out of the river by the Princess' court and lived in the kingdom, led the Israelites out of Egypt, split the Red Sea, saw God face to face and glowed in the dark as a result, changed the WORLD with the receiving and giving of the 10 Commandments...you know, nothing too trivial...Then I thought of August 23rd and my ‘deal’ with God regarding how He was going to heal Noah and raise him from the dead.

August 23rd was the day Noah’s lung collapsed and we had not decided if putting Noah on a ventilator was something we should do or not. After the iron lung did not inflate his lung, I called Jason and said, “Maybe tonight we’ll lay down with Noah and give him to God…And then we’ll raise him from the dead…because that’s just what you do. I mean, it happens everyday in Africa.” You see, faith was not the issue. I had and still have plenty of faith. I had 'mega' faith, heck, I expected a miracle! I just had an idea of how faith was supposed to work. I did the opposite of what I have said for years...I put God in a box. I had it all figured out how it would look...God either heals Noah or raises him miraculously from the dead, then for the rest of Noah's days, he (and we) proclaims God's love to the ends of the earth...It made total sense to me! (And did I mention God still gets all the glory?!)

Before Noah, or Emily, was ever born, we dedicated them to the Lord for His plan and purpose. I specifically prayed one night, at home right after he was born, that God would raise Noah up to be a leader in his generation, that he would be a godly example and a voice for the Lord. Therefore, God healing Noah miraculously or raising him from the dead would be the ONLY way that he could possibly be a leader among his generation, right? News of his miraculous healing would lead many to Christ and God would get all the glory, to boot! Well, that is what I originally believed. However, God is not in the shipping industry…He cannot be put into a box. His ways are not our ways. Ecclesiastes 11:5 says, “As you do not know the path of the wind, or how the body is formed in a mother’s womb, so you cannot understand the work of God, the Maker of all things.”

In Job, when God finally speaks, He’s pretty frank about what He knows and what they don’t, Who made what and who didn’t, Who was there when time began…He’s big. He’s huge, and though I had had a pretty intimate, radical relationship with Him over the past 19 years, this was it, this was my ‘go’ time. Did I really trust God with not only my life, but the life of our first born son? I realized the day we went to the hospital for the outpatient neurology visit, but were later checked in for further testing, that this was more than physical, it was spiritual. The whole of it I have yet to understand, and like the people in Hebrews 11, I don’t think I’ll get the big picture until later, but I began praying. I prayed not only for Noah’s healing, but for everyone who walked through the doors of his room; every visitor, doctor, nurse, RT, cleaning lady, supply stock boy, every sick kid down the hall and their family…EVERYONE. I realized we had to trust God whole-heartedly, no matter the earthly outcome, even though we thought a miraculous healing would still be the best way for God to really stick it to the man, so to speak, to show everyone Who’s boss. Again, my way, not His – He does not have to prove Himself, nor does He need me to plead His cause...

Anyway, as I prayed, God kept laying on my heart His desire to come for His Bride. One week in September I fasted and prayed to hear God’s voice more clearly and for spiritual direction. Not once all week did He speak about Noah’s ‘condition’. He didn’t give me insight or an answer about what it was that was causing Noah’s health to decline. The only thing in His word He continually led me to was scriptures about Him returning for His Bride and His desire to come soon. At first I was excited, but then I was a little mad. I thought, “What on earth does this have to do with Noah?!” It’s not like it was ‘news’! Jesus has been saying He’s coming back for 2000 years, so why was God showing me all this stuff in His word about Him coming soon?! I thought, "Yeah, that’s awesome, Lord, but Noah’s my sick kid and though I know you can even raise him from the dead, healing him now so we can get busy living for you would be great! Yeah, so thanks, and...could You get right on that??!!!" Again, my perspective…

We never gave up on Noah, either through research or miraculous prayer, but after wrestling with God’s heart in the matter and a perspective more awesome than our own, we knew in our hearts what God was asking us to do. It never crossed my mind that in Noah's death, peoples' lives would be reached for God's glory because his life was so short in human terms. I couldn’t fathom it, yet I knew it was true. We had to trust God. Really trust Him. In August, laying Noah before the Lord was on my terms. In January, it was a genuine surrender of trust on our parts. We were truly broken...

The week we shared on the blog that we were going to give Noah to God as a gift on the 12th, every continent had checked in and about 15,000 people had read his story. By Friday the 12th there were over 40,000 unique hits, not just computer data, but people praying. Today, over 120,000 people have read Noah’s story. We have received thousands of emails from people all over the world whose lives have been deeply touched by Noah’s life, because his sweet life pointed to Christ. Many of these emails are from people who had strayed from God, others who were never raised with any faith, and a lot from people who love God but never knew the depth of surrender He desires of us. I share this not because the blog is 'popular' or something meaningless like that, but because already we've had a glimpse of the deep impact of one life, and death, surrendered to God's plan. Moses’ mom got to see her son lead God’s people out of Egypt, but only once he was no longer in her ‘possession’…No, Noah wasn’t Moses, but I believe he has already been a leader in his generation, and will continue to be by the many people who now walk with God, the True Lover of their souls, more intimately because of a sweet little boy…

Even as we turned the ventilator off and knelt before God with this most beautiful, precious gift, we believed that He could either heal him or raise Noah from the dead. The difference, though, was that we were offering Noah to God with no strings attached this time. A free gift, one in which we knew He would delight. We weren’t boxing Him in...God could answer the prayers however pleased Him. He knew our hearts were pure of any human agenda. It wasn’t, “Here, we’ll do our part, now You do Yours according to our will...” We had to believe and trust that the God of the Universe, the One that threw every star in place, made man out of dust (Who does that?!), knows every hair on our heads, which is you times 6.5 billion people times an average head of hair, the One who is not a man that He should lie…we had to trust that God sees the bigger picture. We had to trust that either God is Who He says He is, or He's a liar. We had to trust that God loved Noah more than we did and that even though it stinks for us here, heaven has got to be an amazing place if God wanted Noah there so badly. We had to trust that just MAYBE God views death differently than we do...Our perspective on abundant life in Christ, physical death and eternal hope had to change in order for real trust to take place in our hearts.

It’s difficult to sum up a 7 month journey in a short amount of time, but I want to leave you with this quote I learned after Noah went quickly into the arms of Jesus…

“The tragedy is not that ones life ends so young, it is that some people wait too long to start living.”

Somehow Noah knew his purpose and lived it to the full, regardless of his physical inabilities and a short time table. His Spirit was willing, and therefore, he was used…I am honored and deeply humbled that I was chosen to be his mom on this earth. I pray that my life would be as fragrant an offering to God as Noah’s was...

*(The other day I got a comment from someone who was sad that I loved God more than I loved my own kids...It's my hope and love for God that physically enabled me and my husband to take Noah off of life support. In my selfishness, he could still be on those machines today, but he'd be dying a slow and painful death. To have the hope of heaven and everlasting, abundant life, worshipping God alongside Noah, is priceless...I cannot imagine if dirt were Noah's and my final destination, or even an endless cycle of reincarnation...That's not priceless, it's hopeless. Hope is my treasure stored up in heaven.)