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!

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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...