Confessions of a CF Husband

Oh my gosh, oh my gosh! I know how many people felt checking in throughout the day while Noah was in the hospital. We've been checking in on Nate, Tricia, and Gwyneth now for several months. In fact, a fun tidbit...Gwyneth and I share the same birthday, January 8th, along with Elvis Presley, but I'm pretty sure sweet little Gwyneth takes the cake for making the day cool!

http://cfhusband.blogspot.com/

The reason their story is dear to my heart is that one of my dearest friends in 4th grade never made it through the summer to 5th. Her name was Shelly and she died from Cystic Fibrosis 26 years ago. She and I would wear matching Op (Ocean Pacific) pink shirts and white shorts, but instead of looking like twins, we looked like Ripley's Believe It or Not tallest and shortest opposites. She was the most petite thing (I'm not the most petite thing...), always coughing, but always laughing and smiling. I remember the first week of 5th grade we planted a tree at our school to honor Shelly's life and memory. That was a wonderful thing to do, we have and are going to do that in memory of Noah, but at the same time, I praise God that 26 years later, instead of trees to be planted (which give off oxygen...how fitting), God has equipped the medical field with the wisdom and knowledge to transplant lungs from one person to another.

Yes, I know that one person has died in order for another to live with a specific transplant organ. But the beauty is, this isn't new stuff...Jesus did that, for all of us, for EVERYONE, not just specific parts, but the WHOLE of Him, and that for eternity. Tricia and Nate know this truth...please lift them up in prayer...

Ordinary

The days that are normal, stress free, ordinary, run of the mill, even simple and pleasant, are often the most difficult for me. I think, "Lord, why did Noah come into our lives, turn them upside down, why did we trust You with his life and death, if the rest of our days weren't all going to be supernatural and life-altering?" There are days that things are smooth and I feel guilty that I am still breathing. Why did God choose me, an imperfect, crusty, inconsistent, lousy example of Himself to be the mom of the sweetest guy? Why did He trust us with Noah and his story when there are days that are mundane and unmotivating? Lord, why didn't you pick a woman that was better than me, a better steward, someone with a better heart? I most certainly didn't deserve to be Noah's mom, and there are days that I wonder if lives are being eternally impacted anymore or if it's old news. Lord, seriously, I want to be the best me I can be for You but I know I am not and am not sure how to be...I screw up daily, I have little patience, I am not Your bonus student. All that You have shown me through this journey, spiritually, emotionally, medically, what is it You are asking of me? I want to bring You glory, so on days when I can barely keep up with laundry and am elbow deep cleaning toilets, Lord, what is Your will? Did Noah have to come and die for me to get something I'm not getting? I know You wanted me to gain eternal perspective. I got that. I hope in that. Believe me, Lord, I feel like Paul when it comes to that...but when I do this day to day thing, Lord, please help me find Your will in it because missing Noah makes the ordinary painful...

Fun with Em...

It all started at the Denver Museum of Nature and Science...
We hit most of the displays. Em loved it! There was a fabulous gem display that affirms my continued awe of God's creativity! And the dinosaurs! So cool! There was even a skull from a Stegosaurus that was excavated north of Denver the year Em was born. At the close of the day, Em's Nana took her into the gift shop. She chose a bag of rocks (she loves rocks! I told Em that every rock in our yard, front and back, is part of her very own collection...she thought that was awesome!) and a kaleidoscope, not one with beads or jewels in it, but a plain one that allows you to see multiples of whatever, or whoever, is on the opposite end. So, we had a little fun with it and the camera. See if you can figure out what, or who, it is in each pic!

It's a go...

So, I got a call today from my doc's assistant. She said that "it's a go" on my appointment. She said that when I call to make the appointment to tell them that my doc spoke directly with the specialist and he agreed to review my case as well as Noah's. I said, "Thank you. Now, will there also be a piece of paper in her hands that says that same information because the lady I spoke with was a piece of work?" "Did you talk to so and so?" "I don't know who it was but she started asking me what I had..." "Okay, I will call their office right now and let them know that Dr. B has already agreed to the appointment and not to give you the run around."


So, now I'm going to call records at TCH Denver and have them sent over to Dr. Infectious Disease man and we'll go from there. And so the saga continues...I'm actually excited to be in contact with the hospital. I cannot state enough how much we miss Noah's nurses, RT's, some of the docs and the staff there.

News flash...the receptionist at Dr. B's office just called, really sweet and sappy this time, calling to schedule an appointment for me. I said that I needed to have my son's records transferred first for his review prior to my scheduling the appointment. She said inquisitively, "Dr. B is seeing you but is going to be reviewing your son's records?" I said very calmly, "My son died. His stool killed mice at the CDC..." (Then, in my head thinking, I DON'T NEED TO TELL THIS LADY JACK SQUAT!) I proceeded very calmly, "I'm sorry. I realize this is not information I need to share with you but the doctor. Anyway, I will call you guys back once I call Children's and find out how long those records will take to transfer." (I said that matter of factly, not rudely, but more like I was burdening her with more info than she wanted, anyway.) She said, "Here's our fax number...Why don't I call you once he's reviewed them in case it takes a while?" "That's fine. Thank you." Click.

What we've been up to lately...

Em wanted a bedroom with pink, green, chocolate brown, and polka dots...
The paints we chose are called: Chocolate Kiss, Lauren's Lullaby (pink), Guacamole (trim), and something Cherry (molding)

My little sis and I made the shades for the chandelier and this year I added the 'bling'
In process...

Her Spring bunnies dancing near the ceiling
Fru fru girlie curtains and her cute toy chest with Gramma B's old chenille bedspread as the lid cover
The shelf has some of my great great and great-grandma's teacups and plates on it along with her own mini set and a cup and saucer she painted herself
One day Em was quiet somewhere else in the house. She came in the room where I was and showed me what she had been up to. She had put the picture above of she and Noah in a frame she received as a gift on our trip to Florida last Spring. It sits next to her bed now, along with the Beanie angel bear you see. She says it's Noah.

Notice how I worked in the polka dots? They are on the ceiling in glow in the dark paint, (thank you, Kim A. and Izzy in SD for that great idea!)
I think I have 3 purses. A summer one that is white and woven, a caramel brown one and a black one...
Great toy chest find a few years ago at The Paris Street Market, a great shabby chic outdoor market that meets at Aspen Grove shopping center in CO the first Sat of every month from May to Oct. I changed the cover on the seat b/c the other stuff was too cheesy. It's material from Em's great gramma who is with Jesus.
The quilt on Em's bed I made out of vintage chenille I found in Minneapolis years ago. The other side is the same chenille from Gramma B's (SD) chenille coverlet. I added the raspberry flowers to match her curtains. The bed was $45 from Paris Street Market.
Jason and I had fun doing Em's room in our new house. It took a while, but we wanted her to have some input. We are all pleased with how it turned out.

Self portrait of us at the community Eggstravaganza
Waiting with Daddy to get a few eggs from the 5 year old scramble
Same thing, just mama

Wondering when the guy is going to blow the whistle...
2 more minutes
It was over in 30 seconds. Em had a strategy. She got a few eggs that were close and then ran to the middle, but on the way tripped and lost her eggs. She recovered all but two. She said she left those for other kids...
Happy with her 8 eggs. She was happy to join in the Spring festivities. She knows Who Easter is about, so we were just having fun, outside, on an early spring day.

I am VERY VERY VERY near sighted. Let's see...does -4.75 and -5 mean anything to anyone else out there? Well, I decided I wanted a large range of vision with my new glasses, so, here's the biggest pair of glasses eh-ver! Not really, but I like them and they were on sale! Woo hoo!
They aren't as bad as in the first self portrait.
Oh yeah, and, my hair has grown about 2 inches already! Don't know if the video from January showed the backs of our cuts.

So yes, this is a random post. I mainly did it for Em's Aunties since all but one live far away. Hope you enjoyed the pics. I'll post more stuff later...

So, I called to make my appointment. That's what I was told to do. I'm very obedient...

Her: Hello, Dr. B's office. May I help you?

Me: Yes, I'm calling to make an appointment.

Her: This is a referral only office since Doc B is a specialist. We only accept referrals.

Me: Okay. My Doc's assistant called yesterday to inform me that my blood work was faxed to you guys and that I was to make an appointment with Doc B.

Her: Well, we got the blood work but no referral. The blood work doesn't mean anything without a referral.

Me: Okay. I understand. I was just following through with instructions given to me. I apologize. I assumed my blood work and medical records being transferred to you guys meant I was being referred...

Her: Well, what do you have?

Me: (thinking...THAT'S THE MILLION DOLLAR QUESTION, LADY!)

Me: I don't know. My son died. No one knows why. I had some blood work done and my doctor then felt as if he should send it to you guys. I'm just calling to make an appointment. (FYI: I was calm, not sassy, and very "How to Win Friends and Influence People" by Dale Carnegie)

Her: Well, what were you tested for?

Me: My doctor did an antibody panel for such and such disease.

Her: Well, we don't treat such and such disease.

Me: Right, and I don't know if I have that disease or any disease. I was just trying to do my part of the equation by making an appointment.

Her: What's your phone number? I'll make some calls and call you back later.

Me: 867-5309 (JUST KIDDING)

Have I heard from anyone yet? No.

I do believe many doctors, and all nurses, desire to help people heal. I also don't care for drug companies and politics and the 'system' because, one, do I look like a dog groomed and trained to jump through hoops? NO, I'm a freaking human being, God's most treasured creation, created in His image, just like YOU and YOU and YOU, so let's treat each other that way. Just an idea here, folks. No other creature on earth can claim that...And two, I saw and learned too much being in the hospital with Noah to know that even the doctor with the best intentions, even the ones who fall in love with your kid, are still bound by a lot of political mumbo jumbo.

I gotta go make some endorphins. Later.

Oh. My. Freaking. Word!

(Hold on tight, this one's a fast ride, and OH TOO INTERESTING!)

Proud big sis
So stinking cute!
Lung collapse, not thinking we'll ventilate...
Vented the next day when DOZENS OF MICE AT CENTER FOR DISEASE CONTROL ARE DEAD AFTER BEING INJECTED WITH NOAH'S STOOL

"Just for shits and giggles..."

(I'm sorry, you'll understand why that's written there after while. Besides, I've already learned my blog is "Rated 'R'" because apparently I talk about death too much...imagine that?!@#$%^)

ARGHHHHHHHHHHHHHHHHHHHHHHHH!

So, back up a year and a half and you'll find Noah has the worst diarrhea. He's only breast fed and I know 'breast is best' but I have a feeling it's not best for him, though, the thought doesn't occur to me to switch since he seems to be eating okay. FF to August 2nd, we're at TCH Denver for an outpatient neurology visit b/c Noah's eyes 'wiggle'. They admit him. He stays there the rest of his life. Everyone focuses on his eyes. Geneticists and Neurologists assure us our son has a rare disorder and that he's going to die. One doc even says, "If we don't find out what it is here, we'll for sure figure it out in an autopsy." (Oh yeah!?#$%^& You can kiss my...) Anyway, after 3 weeks of tests costing BOAT LOADS OF CASH (TG for BCBS), no one knows anything. One med student on the 2nd day decided to send off Noah's stool to the CDC for Botulism testing, but all docs assured us that nothing would come of it and that breast fed babies have all sorts of interesting stools. Really?!#$%^ then why do all breast feeding books say it should be yellow, cottage cheesy, and puffy?! (Maybe someone should rewrite those books? NO! Don't! It's supposed to be yellow and cottage cheesy, not look like Superfood Odwalla Juice! Sheesh!) (INTERESTING) So, after all DNA sequencing, leukodystrophy testing, and genetic testing come back negative, Thursday, August 24th happens. Long story short, the attending comes into Noah's PICU room in full contact protection and asks me if we are going to ventilate Noah. I ask why. He says because there are dozens of dead mice at the CDC. My heart leaps for joy! Why? Because I knew all along in my heart it was infectious not "Oh, Noah's the first boy on earth to ever have his condition, blah, blah, puke!"

(Anyway, yes I'm feisty today! You'll see why...)

So, PICU is in pandemonium state! Three major drugs are given to Noah. CDC reports that when Noah's stool is diluted no mice die, but when it's full strength, all die. I run to the fridge/freezer and toss all my breast milk, except a few samples for testing. The boob Nazis at the hospital are mad at me, but it's MY FREAKING KID! GO MILK YOUR OWN KID! Anyway, Noah is now vented, sedated, and on antimicrobial/biotics/fungals. His POOP TURNS YELLOW AND PUFFY AND HE PERKS UP, EXCEPT HE'S SEDATED.

Take a breath, Ade!

Okay, so, the CDC uses all of Noah's stool sample killing lab mice, so they want a little more. Okay, except now you are receiving stool that has been on drugs for a few days! Duh! Second sample, NO MICE DIE. Oh really, is this rocket science? #$%^&* Anyway, when a kid is on Vanco, Gento, and Flagyl, can anything naughty still live in their body? They remove Noah from Flagyl b/c he doesn't have C-diff, but he remains on the other drugs. Slowly, very slowly, his stools turn yucky again. He gets weaker, weaker, weaker...Hospital concludes Noah's stool sample must have been contaminated. I ask if that happens a lot at the CDC. They say NO! I say then why did it just happen to happen with Noah's stool?! #$%^& Anyway, TO THIS DAY, THE CDC DOESN'T KNOW WHY NOAH'S STOOL KILLED MICE. (That's scary, folks...)

FF to last month, 2008. I feel very strongly that I should visit my family doc b/c it's been 4+ years since I've had a physical. Heck, does he even know Noah was born, lived and died? Sheesh, when you're busy, I guess you forget to contact some key players...Anyway, I go see Doc G. He's a great guy. Fixed my back with acupuncture after 7 years of pain. Anyway, he asks how I've been doing. I give him the 20 minute abbreviated version of a REALLY LONG STORY. He hugs me, says he's so sorry! Asks why I am seeing him and how he can help. I inform him that through our own outside testing with Noah we uncovered some interesting things in his blood. The antigens for a spirochete. I tell him all my symptoms, along with Em's, from years ago to today. He says he'll order regular blood work, also some rheumatoid work, and, "JUST FOR SHITS AND GIGGLES", the antibody work for me. He said he was sure the tests would come out negative, but "just for shits and giggles", let's give it a whirl! (Okay, I had never heard that expression. From what era does that originate?)

He also gives me the name of an Infectious Disease doc, the best in the state, so I can tell him Noah's story and trudge further into this crazy mystery with an expert. He tells me to wait until my blood work is back, but eventually I should contact that guy.

FF to yesterday. I got a call from my doc's assistant. She said my labs were back, that she was faxing them to the ID doc and that I was to make an appointment with him right away. (Okay, so I'm pretty sure it wasn't my rheumatoid tests that would merit a trip to the ID doc...)

You may ask if Noah ever got the test I had done last week. Well, he only had a portion of it. My doc did the further, more in depth test. Noah's was the preliminary test and since it didn't show that he was producing antibodies, they did not proceed any further. (Bet they wish they had...) I bet it would have shown what mine revealed.

Anyway, I'll keep you posted. This ride just gets more and more interesting. Wonder if my poop would kill mice? If it did, would the CDC even tell me or know WHY?! $%^&*

Confessions and grief

I must confess...I met someone.

Well, he found me, or at least found his way into my heart. We haven't ever met and now we won't until I die. His name is Kaden Vierra and he moved into his new permanent home in Heaven today at 10:58 a.m. Kaden was 2 1/2 years old. His mommy, daddy, big brother, and big sisters, along with family, friends, and lots of cyber friends, will miss him. Please pray for his family. http://www.caringbridge.org/visit/kadenvierra

There's this weird phenomenon in cyber world...you meet people emotionally that you may never meet physically. You feel to some degree what they feel and even cry or laugh with them, never knowing them face to face. I know you know what I am talking about, many of "you", because you are here reading my ramblings, the rantings and ramblings of a mom of a little boy who made his way into your hearts.

Well, in a way, I think cyber world is an example of how the Body of Christ is supposed to be connected. We can come together in prayer, on our faces before God, seeking His will and healing for people we have never met. Kaden's life drew people to their knees before God. I know Noah's did, as well. There are many babies, born and unborn, toddlers, children, regardless of age, who have allowed their lives to reflect God's goodness and mercy. Many people might ask "How is the death of a child good?" but I ask "How has your life, all these years, reflected God?" Some of the mightiest men and women of God are less than 3 feet tall. I know there are taller ones, but regardless of the number of our days, no, not our days, but the days given us, perhaps months or even years, are we aspiring for mediocre or truly glorious?

I just can't live life thinking it's for nothing! God is real, Heaven is His home, and He made a way for ANYONE to live there through His gracious gift of Christ's death on the cross. That's what Easter's about...but that's another post.

Happy eternity, Kaden, I'll miss your updates, Monkeyboy! Say "HI" to Noah for me. Ade, xoxox

Just another sinus Sunday...

I finally chose not to wear eye makeup to church yesterday. You'd think I had learned a long time ago...I was just too sad to attempt application. At least I cleared out my sinuses...You know that book about the kid with the "terrible, horrible, no good, very bad day"? Well, that's how yesterday started, and then progressed, until early evening when I was able to be surrounded by a lot of people I love dearly and, for some reason, love me, too.

Em's always been 'Daddy's girl'. I never have been, nor am I now, jealous of that reality. But, it doesn't mean that my heart always feels what my mind understands. With no exaggeration, at any given point, unless she gets hurt while wrestling with Jason, Em wants Daddy. Heck, I want Daddy. I love Jason, too, and think he's a great guy. There are just moments here and there that I'd love her to want me, or I guess reciprocate the want I have for her. But I know that is impossible...parents will always love their kids more than their kids are capable of loving them. At least in my opinion. Case in point, when I delivered Emily, I had an "OH MY WORD" moment of realization, finally 'getting' how much my mom has loved me all these years.

"Mature Adult" does not equate "Parent". There are a lot of teenage parents, some grow up or mature quickly, others let their mommies and daddies raise their offspring. There are also legal adults that aren't mature, they are simply identified with an age or number...Those are other posts. Anyway, I have to choose to be a mature adult and integrate God's word with parenting. For example, "Do unto others as you would have them do unto you" or "Treat others the way you want to be treated". These don't read, "Do unto others as you would have them do unto you unless they make you mad or break your heart or hurt your feelings, then open a can of 'whoop ass' and break loose your fury" or "Treat people nicely but if you want them to feel the pain or hurt you feel, treat them like crap so they can get a good dose of their own poison." We talk about this quite a bit with Emily so she is able to put herself into others' shoes, in order to learn empathy and compassion. Yes, I said LEARN. You don't just get those character qualities, they must be practiced.

It occurred to me yesterday that if I treated Em the way she treats me sometimes, I would break her heart. I would never consciously do that to her because I know how my heart feels when I'm the lowest one on the food chain.

I'm having a hard time saying what is all too well summed up in a scenario from my past that is fresh in my mind, even today...

Mom, I'm sorry that in 7th grade, when you used to drop me off at Rhodes Junior High in our sweet conversion van with the captain's chairs, that one day I decided I was too cool to kiss you goodbye in the drop off zone! I'll kiss you in Time Square, Red Square, Trafalgar Square! I love you and I'm sorry! I'm sorry because I know I probably broke your heart that day! It breaks mine to even remember how 'cool' I was trying to be!

Dear God, (tongue in cheek) please, please, please, have mercy on me and don't let me reap any more of that which I have sown! It's too gut wrenching!

Signs...

Em excited to start handing out sandwiches

So, in our Pilot in the front passenger seat, if something or someone weighs too little, the airbag automatically shuts off. Because of this safety feature, I put Em's seat up front with me so she could help hand out P, B, & J's. She was really excited to share food with people. We hit a usual corner, meaning, a place where there are always people with signs asking for money. We were at the stop light and I hung my head out the window with a bag lunch and water bottle in hand. I asked the guy if he wanted some lunch but he turned us down. His sign read, "Deaf in left ear Blind in left eye 6 year veteran Hungry Anything helps". Em said, "I guess he just wanted alcohol, mommy." I assured her not all homeless people are alcoholics, but a lot of them like money since they can go to homeless shelters for food. However, 'Anything helps' must only mean money...

Most of the signs said something to the effect of "Will work for food" or "Disabled Vet, For Hire" or the one I have seen on 3 different corners held by 3 different guys, "Short $18 rent. Father of 3. Anything helps." I must say, I think that it is interesting that 3 different guys on 3 different corners are all fathers of 3 and short the exact amount of rent money, but hey, maybe I'm a little cynical...Anyway...

So there was this one guy on the corner of Speer and Colfax, a very hot spot. The first time we were approaching him, the light was green so we prayed that God would turn it red. It stayed green so we had to proceed through the light and turn left. Em said, "Mom, why didn't God turn the light red?" I said, "Maybe because someone around the block needs lunch." Sure enough, Em spotted a guy around the corner so we handed him lunch. On our second trip around the block, Em wanted me to 'gun it' through a yellow light so we could make the other light. I didn't 'gun it' and so we missed the light again! I thought, "There are a lot of other homeless people we could feed, we'll just head to another block." But Em said, "Mom, I really want to feed that guy. Please go around the block one more time."

We went around the block once more and finally got a red light. I waved the guy down and asked him if he wanted lunch. He said, "Thank you girls so much. God bless you both." His sign simply read, "Christ is the Lord." Em thought that was pretty much the coolest thing of the day. In fact, when I asked her what her favorite part of today was she said, "Seeing that guy's sign and sharing food with hungry people."

She's excited for it to become a monthly outreach. Next time we'll go out on foot. It made my heart happy to see how excited she was to share. She's got such a huge heart! I'd love to hear more stories of how God has shown you the gifts in your children...

P, B, & J Day

Em's been asking me for quite some time to drive her around downtown Denver so she can pass out P, B, & J's to homeless people. Finally the other day she said, "Mom, you always say we can pass out sandwiches but we never do it! Let's do it!"

So, cyber world is my accountability. Em and I have smeared the peanut butter and jelly on and after Bible study today, we'll head downtown. Don't worry, we're picking up water bottles, too, so people aren't left thirsty, as well.

Maybe your kid has been asking you to do something that is community outreach in nature. I've been asking God to show me Emily's gifts so I know how to pray for her and encourage her in her pursuit of God and in loving mankind. From what all He has shown me thus far, we'll be some pretty busy parents, but for eternal purposes.

How is your kid wired for the Lord?

More...

Em (out of nowhere): Mom, do angels make mistakes?
Me: Yes, I suppose they can.
Me: The devil was an angel and his mistake was wanting to be worshipped. He was prideful.
Em: Mom, is the reason the devil tries so hard to hurt people because he's so mad that he got kicked out of God's presence?
Me: That's exactly right, Em.
Me: How would you feel if you got kicked out of Heaven?
Em: I'd be pretty sad! I'd be really lonely.
Me: That's how the devil feels. He's lonely and miserable so he tries to put that on God's people on earth to make us feel that way, too. He lies to us to make us think God doesn't care when bad things happen on earth. He's so selfish and a big, fat liar!
Em: Yeah, but we have Jesus so that makes the devil mad.
Me: He's jealous because we can talk to God everyday and thank Him and praise Him, cry to Him, and enjoy the hope of Heaven.
Me: There's a saying, Em, "Misery loves company". The devil is the most miserable creature in existence because he was once with God but has been cast from His presence. People don't have to be miserable because God sent His Son to renew that relationship. We may have times of sadness here on earth, like missing your brother, but we have hope, so that makes us special.

Jesus says it best...
1-2 When Jesus saw his ministry drawing huge crowds, he climbed a hillside. Those who were apprenticed to him, the committed, climbed with him. Arriving at a quiet place, he sat down and taught his climbing companions. This is what he said:
3"You're blessed when you're at the end of your rope. With less of you there is more of God and his rule.
4"You're blessed when you feel you've lost what is most dear to you. Only then can you be embraced by the One most dear to you.
5"You're blessed when you're content with just who you are—no more, no less. That's the moment you find yourselves proud owners of everything that can't be bought.
6"You're blessed when you've worked up a good appetite for God. He's food and drink in the best meal you'll ever eat.
7"You're blessed when you care. At the moment of being 'care-full,' you find yourselves cared for.
8"You're blessed when you get your inside world—your mind and heart—put right. Then you can see God in the outside world.
9"You're blessed when you can show people how to cooperate instead of compete or fight. That's when you discover who you really are, and your place in God's family.
10"You're blessed when your commitment to God provokes persecution. The persecution drives you even deeper into God's kingdom.
11-12"Not only that—count yourselves blessed every time people put you down or throw you out or speak lies about you to discredit me. What it means is that the truth is too close for comfort and they are uncomfortable. You can be glad when that happens—give a cheer, even!—for though they don't like it, I do! And all heaven applauds. And know that you are in good company. My prophets and witnesses have always gotten into this kind of trouble.
From The Message