alternatively titled : “I’m not ready to write about anything else just yet.”

We purchased Fort Hopeful knowing full well that it needed quite a bit of love. Don’t get me wrong, it’s totally liveable, and I adore everything (even the parquet floors that everyone else hates). Well, mostly everything. I don’t like the giant heron etched on the shower door (it does cover your bits and pieces in case anyone’s looking though).

The kitchen, however, needed a touch.

So, I’m going to tell you how to make this:

Magnetic Spice Rack

1. Take a trip to IKEA.

2. Spend approximately 4 hours wandering around aimlessly (read: lost) and then stumble upon these gems. Buy 5 (that’s 15 at a cost of $25.00).

3. Buy a backsplash that you think is what goes with the above, and take it home. Then figure out that it’s not actually metal at all, and doesn’t actually hold the magnetic spices. Throw a fit, cry, and declare the day ruined. (Just kidding. I did NOT do that. I laughed. A LOT).

4. Instead, take a trip to your local Mecca of Home Improvement. After paying homage to the Maker of all things porcelain, stainless steel, and concrete, ask someone to show you to the sheet metal. There on the end, they should have little pieces already cut.  There are various sizes available so measure your backsplash before you choose. (cost: $12) Also purchase one tube of Liquid Nails, and some painters tape—explaination later. (cost: $8 combined)

5. Head to the tile center. Purchase enough tile and grout to surround your metal as a border. For us, it took 6 sections of fancy bath tile. They cost anywhere from $1-$20 a section, so you can choose however fancy you would like. Buy extra always, because you never know when an issue could arise–and you wouldn’t want to have to run back to the store five minutes before they close, covered in dirt, smelling like….oh wait. Just buy extra. OK?

6. Once home, carefully measure your space. Do NOT just slap your metal on the wall.” Measure twice, fit once” (Mike Davis, 1984). Use a level to make sure you’re not going to have a lopsided spice rack either.

7. Once measured, carefully outline your metal piece with a pencil so you know where to put it back up. Slap a bunch of liquid nails on the back and allow to sit for a few minutes. Carefully place the metal within the pencil lines. Tape up on wall with painter’s tape and allow to harden for 24 hours. (The wait, it’s awful!)

8. After 24 hours, tiling begins! Carefully measure this as well, because you really don’t want it to look horrid. If you are uncomfortable with tile, talk to your tile expert at the Home Improvement Palace, and they will certainly guide you to Tile Freedom. It’s really not hard. Do not be intimidated by the tile.

So at this point, you should have something resembling this…

Partially tiled...

9. Once the tile is on the wall, you have to wait another 24 hours for the glue to stick.

10. Grout that puppy! Grouting is fun. If you had fun making mud pies as a child, you will love slapping some grout on tile!

11. Return to the magnetic spice holders. Grab your handy dandy label maker (or a piece of tape and a sharpie) and put the names of the spices on the backs–because sometimes the Italian seasoning looks like basil. Or so I hear.

12. Put your spices in your new shiny labeled spice holders. Stand in awe of their beauty. Arrange them in alphabetic order. Then take them down and arrange them in color order. Then try again and arrange them in order of importance in your own personal cooking… Or, just do whatever you want.

13. Stand back and high five your DIY partner! You did it! You made beauty! Hooray!

Two days after Christmas, we packed up everything we owned and moved.

To tell you it was fun–well, it wasn’t.

However, in true Hopeful fashion, we’ve had some moments that will make you shake your head.

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We have a chicken. Her name was going to be Attila the Hen, but she’s named Betsy…

On the day of the closing, S and I left the kids with P and headed to the lawyer. As we made small talk, she told us that she was really happy we were taking the chicken. (I’m thinking, “what?”). We started signing our lives over to the bank, and after giving us the keys, we were told to hang on for more instructions.

Instructions for what, you ask?

For Betsy the Chicken. We were told how to feed her and care for her and…I kid you not…how to talk her off of the fence so she doesn’t jump.

She’s been a constant source of amusement for all, and apparently she is well-known around the neighborhood (as evidenced by Neighbor 1 saying: “Did you decide to keep Betsy?”). Actually, she is well-known all around our town because when I went to the feed store for her food, the man working asked if I bought the house where Betsy lives.

Who knew I’d inherit a famous chicken?

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The house itself is great. I love it. It’s home. We have family here. I couldn’t be more pleased if I tried.

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Jack has seen a few of his new doctors.

To say I’m delighted would probably be the understatement of the year! His GI here is a lovely woman doctor…she is gentle, kind, and doesn’t think that I’m crazy! She agreed with the plan to not feed him orally more than what he is doing now as it’s a risk for aspiration. She was just fantastic and I really think she wants the best for all of us.

Today we saw the new pulmonologist–which went a little less wonderfully. Not because I didn’t like the doctor. No! The doctor was a total Rock Star! He and I talked and discussed a TON of stuff. He thinks that to combat Jack’s apnea, we should have him on some oxygen at night (since he won’t tolerate the C-PAP). I couldn’t agree more, but the pulmo in Savannah was not at all for that idea. He would prefer if we didn’t offer Jack anything orally for a while until he can fully assess his airway and how much damage has already been done.

So we’re sitting there, and he decides to do a random pulse oximetry (it measure the amount of oxygen in your blood) on Jack. It was 90. Then it was 87. Then it was 90. Then it was 88. Then I almost passed out because it’s supposed to be 99-100. In the hospital, we like to keep our patients above 92. So this wasn’t awesome.

Jack’s overachieving self earned us a trip to the hospital for chest x-rays. He’s also getting a referral to the cardiologist because Dr. Lung thinks that maybe he could be having some issues there too. You know, because Encyclopedia Jack isn’t thick enough yet. Or something.

We’re also doing another sleep study in a couple of weeks to see if the oxygen will help at night. I’m hoping that we are finally getting to a place where we can keep him comfy and hopefully not do any more damage to these fragile little lungs.

Unfortunately, he did agree that palliative care was our best option.

The only good thing about that is that we get to go to clinic on preemie day so everyone wears masks and no one touches him too much.

Sigh.

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J is happy as a little clam. She’s thrilled to be near her cousins! She’s loving being outside all the time. She and the chicken are best friends–so much so that the chicken follows her around and keeps trying to get in the house. J can’t wait for the pool to be ready and to start swim team. She’s growing up–she saved all her money for a year to buy an aquarium. Now that she’s met that goal, she asked to open a bank account so she can save money to buy…a house.

Yep, a house.

“Because, Momma, it’s stupid to rent. You’re throwing money away!”

(My little miser!)

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I’ve missed you. xoxo

Last week, we had the opportunity to have one of the greatest experiences of our lives.

We met the One and Only Britt Anderson!

Well, what really happened was that Jack is part of the Littlest Heroes Project. This is a program that just touches my heart in so many ways. It was started by a young girl who thought that children with life-altering disabilities or serious illnesses should be given the gift of art. She managed to wrangle professional photographers and artists from all over the country to sign up for her program and help out.

Our Little Hero got to have his photo shoot last week with Britt. It was one of the most beautiful moments we have ever gotten to share with our son, and one that will never be forgotten!

If you are friends with me here, you can see the pictures…or, you can read Britt’s Blog (and give her some well-deserved love!) and see some of the photos too.

I’m truly just speechless!

We have returned from our adventure in the great outdoors.

Literally, there was no phone service.

The directions read like this : turn left at McDonald’s, go 5 miles. Turn left at the furniture store. At second right, follow the road to the T. At the T, go left and stay on the left side of the fork in the road. At the Taxidermist, turn left and follow the dirt road 2 miles. Cabin on right.

Yep (cue banjo music).

There was also lots of this:“She touched me!” “She doesn’t like me!” “I don’t wanna…” “STOP!” “Do NOT hang over the porch railing!” “Wash your hands!” “Uh-huh” “Nuh-uh” “(insert copious amounts of tears here)” “It’s a walking stick, not a lightsaber!” “Wear bug spray!” “Go ahead…” “You want to do WHAT?” “Be nice to the little ones!”

We also managed to fit in some horseback riding, (the boys went) whitewater rafting, fishing, shopping, and just relaxing.

However, there was more to it than just that.

I learned something really important.

Jack is almost 4. He wanted to do what the other kids were doing. Sometimes that was OK, and other times it just wasn’t possible.

He only asked for one thing the whole time we were there (well, besides the diggers and a bunny).

He said he wanted to “Cwime Moufain” (climb mountain).

We went to Carter’s Lake dam, and he wanted to climb the rocks. So, we climbed the rocks. Granted, it was spur of the moment and I was wearing flip flops, but we managed!

We went to the highest waterfall east of the Mississippi river…and he got to “hike” in the woods.

I looked a lot at the rocks in the stream behind our cabin. Over time, water washes over them creating different shapes and sizes. Some get beautiful and smooth while others get sharp and jagged, ready to slice through an unsuspecting foot wading through.

That’s sort of how I perceive Jack’s life. It’s going to be difficult. He is going to be treated harshly by some, gently by others. The water is going to run over his soul, and he (and possibly I) will run the risk of becoming jagged and jaded. Jealousy could haunt the darkest corners of his heart. And if it did, I would always wonder, “What if I had taken him to do the things that he thought he couldn’t do?”

I will do whatever it takes to protect my children…to guarantee that their hearts stay open, accepting, and kind. Until he is too big for me to handle, I will strap him on my back and show him the world that he yearns to see!

In the special needs world, they sometimes use the word “perseverance” to talk about obsessive behaviors. Webster defines the same word as “persistent determination.” I love the word. 2 completely different connotations depending on how you look at the coin. So much like the life we lead…the choices we make… the paths we follow.

Perseverance.

Janson and I made up this song that we sing when Jack is indescribably unhappy.

PIDouble SY!

PIDouble SDouble SY!

And, it’s kind of fitting that I have had that song in my head since yesterday. Perhaps it also describes my attitude currently. Heh.

Jack had an appointment with Dr. Lung (she’s lucky that I’m still calling her that here because I almost changed her name to another bad word!).

She came in and discussed the fact that Jack didn’t particularly enjoy his last sleep study.

Now, understand, Dr. Lung is of Eastern European descent (with a very strong accent)…she’s at least 6 feet tall, and kinda harsh around the edges.

She reported that Jack still has apnea (shocking, I know! *rolls eyes*)! She asked if I had a mask for him to practice with at home. I informed her that thanks to her prescription, we do breathing treatments several times daily, and he does quite thoroughly enjoy his mask (what I wanted to say was “Yo, lady, he loves the mask, he just doesn’t particularly enjoy having someone sneak a CPAP on him while he’s asleep!”)

She continued on, we talked about the numbers and she said she wanted to do another try at the sleep study so we could try the CPAP again.

I flat out told her no.

She then got a little more ugly. This is the part when my head almost popped off my shoulders and exploded like a firecracker in mid air!

I asked calmly if she had spoken to Dr. P (the neurologist). She stated that a pulse ox overnight would be simply for my benefit, and wouldn’t do much for Jack.

Um…yeah, I know that. 1260-some-odd nights of no more than 4 hours of sleep per night starts to grate on a person!

She said “this is a chronic problem” and I’m just “going to have to relax and sleep!”

My kid stops breathing in his sleep.

What part of that makes one feel relaxed?

So I don’t know what to do now. We live in probably the worst place we could for Jack. There’s one specialist for each area…and no other choices unless you want to drive hours and hours. And I’m being quite literal here. I don’t know if it’s better to circumvent the system and talk to the ENT, or Dr. P, or even the pediatrician? or if it’s better to drive to somewhere else and try a new pulmonologist. I think she’s good at her job, but she has no concept of what parenting one of her patients is. I’m not expecting sympathy, but I most definitely expect empathy.

Stay tuned for the continual adventures of “As the Jack Breathes…or Not!”

I will write more later, but I wanted to share this picture ( as part of Take It Tuesday).

There are a lot of new beginnings happening all around us…Jack has taught us all about beginning again.

*We wish you all a wonderful season of joy, peace, and the happiness that comes with knowing your deductible is due the week after Christmas!*

(are you laughing? Me either.)

Much love!

This morning, we had the brilliant idea to get up and go to Oatland Island. Remember Oatland Island? The last time we were there Janson Irwin picked up a snake with a stick for me!?

Thinking I would be safer with Sebi at my side, we packed up and headed out. We made it to the corner, when my Beloved asked if I was hungry. Since all I had eaten for breakfast was coffee….we stopped at CVS. I jumped out and grabbed some granola bars and waters—and we were off! I started eating my granola but it was kind of not what my body wanted, I guess…

We get to Oatland, and we put Jack into his “Rocket Ship”–that’s the baby backpack. He thinks he is flying. I’ll deal with that later.

[Side note: I am not outdoorsy. I used to be outdoorsy, when I lived in Pennsylvania, and the ground was frozen 9 months out of the year, so there wasn't an insane snake fear!

I also really need to get some meat on my bones, and get stronger for Jack. He's only going to get bigger and harder to lift. I need to be ready for whatever his needs may be. Sure, he can walk now, but not far. He gets tired easily and wants either held or put in the stroller. I want to be like my Online BFF Rachel who wrote this---"Strong Enough to Be Your Mom". So, I agreed to do the outdoor hiking thing with Jack on my back to prove that I can be strong for him. I also don't want him to miss out on things that "normal" kids can do. I want him to see and do and feel. And I want to hold him while he does it. End of side note]

So, we started here:

We wandered the trails, saw alligators, I incessantly prayed for all the snakes to be on vacay in Toledo….

And I was itching to death. I put on bug spray. I sprayed the crud out of the kids! So I was kicking, and scratching, and slapping. They kept looking at me like I was nuts. Which on most days, isn’t too far from the truth….

We walked, and talked, and had nature all over us! And I kept itching. And kicking. And scratching. It was getting beyond annoying. Even my tummy started itching.

When we got back to the car, Janson exclaimed: “UH OH! Momma’s gonna get sick!”I totally didn’t notice myself getting sick….until she showed me that our granola bars were made with “traces of peanut flour.” I’m allergic (deathly allergic) to peanut oil.

My mosquito bites were hives. Giant ones. Like pancakes.

Jack’s face (and mine) says it all…

Pass the Benadryl Please?

Janson was anxious to exit my womb. She tried so hard to come out, that I had to be on medication and in the hospital for a chunk of my pregnancy…she was an overachiever even then! Her due date changed frequently, so the doctor just always said she’d come in October. I had facetiously made up baby announcements that said, Date: 9/9/99Time: 4:17 P.M.

She was indeed born on that day, at 4:23 P.M.

When we received the call to get Jack, they told us his birthday was September 9 as well. It wasn’t until we met him, that we found out his birthday is September 7. There is a mere 24 hours between their birthdays–and 7 years. One cannot have a dual party with a 3 year old and a 10 year old. Diego meets Alton Brown? I don’t think so!

Alas, this year, I made the executive decision to cancel all things birthday. There would be no bouncy house. No gigantic to-do with all our friends. Just us, the kids, their favorite eats, and cake. The end. Plus, with Janson’s surgery next week and Jack’s lack of immunity, it just seemed better to not play well with others.

My parents were here last weekend for the festivities. We neglected to do the “birthday thing” (read: buy a cake and sing), so my mother has crowned herself “terrible grandmother.” I tried to reassure her that there are plenty of worse catches in the terrible grandmother sea… Have I mentioned that my mother is a travel agent for guilt trips?

I’m pretty sure they didn’t care…

Jack’s day was interesting. He wore his birthday shirt and frequently yelled “‘Prise!” for good measure. We had a picnic on the floor over Happy Meals for lunch. We had pizza for dinner. We supplied a cupcake–complete with a Wall-E candle and sang. We opened presents. It was a good day. Nothing too much for him to handle.

Janson made far more requests. She wanted homemade lasagna and a homemade red velvet cake with cream cheese icing. On my 24 hour break from all things birthday, I cooked. I cooked like a mad woman. She had a fun day as well. We did school in the morning and then when Sebi came home, we celebrated the moment of her birth (remember, 4:23?). She asked where we were 10 years ago at that moment.

I said, “Oh honey, you were….”

And Sebi interrupted… He said, “At this moment you were kind of blue and not doing real well.” (That, my friends, is how you mortify your child on her birthday!)

Janson looked at me in horror as I slapped him! You don’t tell those things to your kid, on her birthday! You tell them stories like that when you need to be the travel agent for guilt trips.

See, I learned a lot from my mother.

(Yes, this is not my normal verbal diarrhea over birthdays…but there is a reason, which I cannot speak of. I would turn into a pillar of salt. I will return with normalcy when I speak of other events, just not my children and their birthdays. Sorry. )

Shortly after the arrival of my eldest niece, it began—the yearly trek to the photographer. Matching outfits. Complaining husbands. Crying children. The joy of it all!

For example, when Janson was about 3, we decided to do our Christmas photos at Sears- in November(if I recall correctly, it was 90 degrees and pouring down rain as well…nice humidity!). The girls were dressed in matching plaid outfits with plaid hats. We couldn’t get a single good picture. The girls screamed, fussed, and fought with each other (they were toddlers. It was the “it’s S-mine” era). It was hotter than the seventh level of Hades in the studio! The photographer was not the best. By the time the session was over, our husbands were threatening insta-divorce, and vowed to NEVER take another picture again.

However, they must have forgotten that, because after Dani was born we took pictures again. In November. In plaid. On the day that they were allowing animals to come in to have pictures taken. That’s all I have to say about that.

Fast forward to last weekend. My sister in law and fam, drove from where they live to Jacksonville. We drove from Savannah to Jacksonville. Why? To have our annual Big Fat Family Foto Flop! We wanted to hang out together for a weekend, but we figured this would be our chance to do the pictures.

I shopped all week for outfits for all of us to match. Sebi even went with me to South Carolina! We finally found the outfits, and I called Veronica to proclaim victory! When she answered, it was a very strange conversation…V: Hello?Me: Hey! Guess What?! I found outfits! V: uh-huhMe: Don’t you wanna hear about them? V: uh-huh…umMe: Where are you?V: Here with Brian. Me: Huh…OH MY GOSH YOU DIDN’T TELL HIM DID YOU?V: *giggles*

Sebi was mad. He grumbled about how if Brian didn’t have to know, why did he…? This was our drive for the 2 hours from here to there. That, and us spontaneously laughing at the fact that Brian didn’t know!

Upon arrival at the hotel, we unpacked. I placed the matching outfits in each closet. The girls had 2 matching outfits, Vero and I had matching tops, and the boys had matching t-shirts. They arrived, we went to dinner, hung out, and not a word was mentioned.

The next morning was the big day! I had gotten my kids up, bathed, and dressed. The girls were up, bathed and dressed. So now we have 4 kids in matching outfits. Brian walks into the living room and asks what we’re doing today—never noticing that the girls are dressed identically. I was desperately trying to not laugh. Veronica was laughing out loud from her bedroom. I walked over and Brian is standing there asking her what he should wear today. Sebi bursts in the room and says, “Brian, I heard I had to wear a blue shirt!”

The next 20 seconds were perfectly priceless. Brian went from confused, to blank, to the realization, to angry, to laughing!

Once again, we trekked to the picture studio. Once again it was a complete disaster.

We did get some really good pictures. If you want to see them, you can either email me or be my friend here.(I’ve had some issues with people stealing my pictures, and I don’t want to share these. Especially since 4 of the people involved don’t live in my house!)

I will, however, leave you with this little gem.