5 years ago at this very minute…

… we had no idea what our lives were going to turn in to.

… Non was holding my hand.

… Jack didn’t have a feeding tube.

… J was grumpy because she wanted attention.

… we lived in Savannah.

… our friends and family were all with us.

… we were so happy—blissfully naive.

… it was a Tuesday.

–and with the signature of a judge, our son was ours. Ours.

It really was Jack’s Big Day.

And it always will be.

Look at how many changes happen in the blink of an eye. So much has changed us–there by shaping who we have become. It’s a good day to reflect on how quickly the tide changes, and how grateful we are for each and every person who stands by us, fighting for our Jackpot. Thank you…from the bottom of our hearts.

Motherhood is hard.

I’ve spent the past few months struggling with my own internal turmoil. The move, the holidays, having family near (yet not wanting to ask for help), dealing with new doctors…you name it! My usual transparency was replaced with this person who I didn’t really like. The person inhabiting my body was not the best me that there is.

I’m looking for her.

And she’s hard to find.

My children…they are my world. Truly. I couldn’t love them more—together and individually—if I tried.

On one hand, I have this beautiful, blossoming young woman who sits across from me at breakfast. She is smart and funny one minute, and quiet and tearful the next. She runs the gamut between emotions on a daily basis. Frankly, I don’t know how to help her. I don’t know how to help her find her own skin when I can’t quite find mine either. I know adolescence is rough, but I don’t want her to feel like she can’t come to me and talk or ask questions.

I also know that the hand of cards she’s been given is not necessarily fair to her. She’s carted to doctor’s offices and has heard more horrific news about her brother than any child should have to. She knows how to hook up a feeding tube, how to work the chest percussion vest, and what meds he gets at what times. While I appreciate her enthusiasm to help, I worry that this is too much for a little person—because even though she’s a big girl (at 5’8”), she’s still twelve. This is a burden for her heart.

On the other hand, there is Jack. He is talking more (we call his language Jackinese) and developing his own personality (he’s funny—really funny!). He’s starting to realize that he’s not quite like everyone else, but he doesn’t know how to embrace that. He asks questions but cannot quite understand the answers all the time. His days are precious to me—every single one that I am given.

My patience wanes. I fuss about “normal” mom things—laundry on the floor, dirty bathrooms, sibling fighting. I worry about providing them each a good life in a happy home. I worry about flu and germs and icky lungs. I worry about finances. I should be graduating in a few months and I’ve started to look for a job—which comes with another set of worries. I worry, I worry, I worry.

I looked in the mirror this morning and thought, “Dang, girl! Pull it together!”

From somewhere deep in my soul, I felt a stir of my former self.

She’s in there.

She’s got hope.

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!)

*********

I’ve missed you. xoxo

I don’t know if there was, or will ever be, anyone who took Christmas as seriously as Non. She would decorate her tree, place her nativity under it, and then set out to be Cookie Baker Extraordinaire while making sure we were all treated fairly.

When I say fairly, I’m not even close to joking.

Non has 5 grandchildren. She would tell us that she loved us all the same (I know the truth, wink wink), and we would argue with her over how she loved ME best (or my brother or my cousins…). She would make us cookies. Each one of us would have the same shaped cookie with the same general amount of sprinkles on it. No one ever got an extra scoop of ice cream (except her dog) unless everyone was OK with it.

However, when it came to gifts, she totally took the cake! NO ONE could do up Christmas like Non. No one ever made my Dad cry from laughing like Non.

For example, one year, to be fair, all the boys in the family got The Amazing Roller Ruler. 4 men, opening The Amazing Roller Ruler and trying to act like they enjoyed it. Another year, we ALL got slippers shaped like animals (I think my brother still wears his).

Yet none of that even holds a candle to the year…

Picture this—the happy family sitting on the floor, lounging on chairs and couches after a gorgeous Christmas meal. Non begins to hand out gifts to her family. Everyone opens and oohs and aaahs over each other’s new sweaters, sweatshirts, and socks. And then, my youngest cousin opened a loaf of bread. You could have cut that loaf of bread with the silence in the room!

Non looked around and told us how G loved that particular bread and she had some extra money left to spend on her ($1.35) so she got her bread. Non then produced baby food jars full of pennies for the rest of us–just to be fair!

This year, it’s very bittersweet. I know she is happy (truth be told, she’s probably telling everyone how to decorate the trees in Heaven) but I selfishly miss her more and more. I wish she was here when I had a question or just needed to hear her voice.

Someone will have to get a loaf of bread this year…

Last weekend, we drove to Florida to see a foreclosed home that seemed to fit our needs quite nicely.

The house was lovely. The neighborhood was spectacular. The neighbors…not so much. One neighbor had a giant mannequin used to practice boxing or samuri or something on his porch—which literally almost touched this home’s back porch. I’ll spare you the details on the rest, because it just wasn’t worth the effort.

We explained our quandary to the realtor, and we saw two more homes. Neither was a good fit.

In a fit of frustration, we decided that maybe we should just rent and be done with it. So we went to see a couple of rental homes. Meh. I’m not a fan of renting to begin with (because I swear I am never moving again), and these homes were just ick.

So, we sat in a bagel place looking online for other homes to go see. Our realtor called and said she had sent us some more homes, and to call her back with the ones we wanted to see. Yippee!

We went to house 1. It was a brand new home in a brand new subdivision. It had easy access to the highway and was close to shopping. Truly it was gorgeous with its new appliances and fancy counters and window sills. The builder agreed to make some changes for Jack and to fence the yard should we purchase. It was tempting.

House 2 was a humongous house on a corner lot. It came complete with tile and wood floors, an abundance of space, a pool, and a live chicken. It was located in the Big Potato, which is close to family and friends, but Sebi was not at all enjoying the house.

On to house 3.

We had my mom with me, so we decided to play a joke on her. Far be it from me to be serious all the time.

We were driving and talking, and Mom says, “Where are you going?” We pulled in to her subdivision. And better than that, we pulled up to the house two doors down from her. The look on her face was priceless. She was not sure if we were serious or not, and had no idea what to say. Sebi kept telling her that it would be so great—we could just chuck the kids over the fence to her. Obviously, this house was a big no.

House 4 was still in the Big Potato. It was on a corner lot with a pool as well. The rooms were large, and there were giant chickens in the kitchen. Not live ones.

After seeing all these homes, we had no idea what to do. We had to make a decision because we didn’t have time to just hang out and see a bunch of homes. We have to move in a hurry.

We talked with my parents, with each other, and with the kids.

And, we chose (it’s like House Hunters on HGTV, right?)…

*

*

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House 2!

Sebi called the realtor, told her we wanted the house, and asked (jokingly) for the realtor to negotiate the chicken in to the deal.

We got the chicken.

J is thrilled. She has been reading books about raising chickens. She bought food. She’s going to knit it a bonnet. I’m not even kidding.

The inspection went well. We should be back home any time now. My house here is in various stages of packing. We’re happy…so happy!

Non was with us. We know it.

Usually, by this point in the year, Non was in her glory. She would get up early in the morning and work tirelessly…baking cookies. She would mix and stir and roll and cut until she had every square inch of her house holding boxes of cookies. I’m not even kidding. She would stuff her freezer with them, hide them in the attic, and store them in closets. All this preparation for the Christmas season. She presented families with plates of cookies for years, as a selfless act of love.

And heaven forbid if each cookie presented to us kids did not have the same amount of sprinkles on it…

This year is rough, I’m not going to lie. I miss her like crazy, and I am not sure how to go about moving without her. I mean, I’m still finding socks stuffed in casserole dishes from our last move!

And, much like my mother, and her mother before her…I love Christmas. I love to decorate. I love the smells. I love the food. I love the traditions.

I have a deep and abiding love for advent wreaths, chocolate Christmas countdown calendars, and snowmen.

This year is different. Everything I own is in storage. We think that we sold the Christmas tree at a yard sale last year, but none of us can truly remember if we did or not. I haven’t bought many Christmas presents, because I don’t know where I’m going to be living. I feel disjointed. And being the somewhat neurotic creature of organization and routine that I am, I then feel guilt. Guilt for not doing the right things or being the right mom…

Anyway, let’s not go there right now…I’ve got bigger fish to fry.

Friday, Jack had a procedure done to see what is going on with his g-tube. He’s been complaining that it hurts a lot, and I’ve had all sorts of trouble replacing it (which is not typical—I’m a super tube changing rock star!).

He wooed the nurses with his long eyelashes and dimpled grin. He took his IV like a champ, while we talked (and only one little tear escaped his eye) about his desire to grow up and be a StormTrooper. We kissed and whispered ”I love you” to each other over and over as the anesthetic took over his body.

Then I barfed in the waiting room (I’m sure you’re all super shocked by that).

Dr. GI came out and sat with me. We talked for a good while. He said his tube looks great. But the rest of his innards are a little wonky. He showed me places on Jack’s esophagus and stomach that have ulcerations (which he biopsied). He also biopsied a lesion in his small intestine. This was totally not at all what either of us expected—but Jack has always been our little enigma. If the answer is to be black or white, Jack will find a way to make it orange.

It’s a talent.

So, we now wait.

And I know, somehow, that in all this waiting—for the move, for the results, for my life to get back to “normal”—I am learning to be more faithful, more patient, more humble.

But, dang…it’s hard.

A year ago, I told Non a big secret…the truest desires of my heart. I then told Sebi and we promised each other to make it work.

We stepped out in faith and trusted God to do the rest.

This is the truest love story….and it began with Non.

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We decided to sell our house. We figured that the smart thing for us to do would be to sell our current home and look for something with one floor (especially in light of Jack’s uncanny ability to roll down the stairs head first on an almost daily basis). We rented a truck, emptied out our house of all the non-essential and began our life of paper plates, plastic silverware, and paper towels. The troops were restless in the beginning, because they missed their “stuff.” But we found other things to do…we went for walks, played games, and danced to loud music at noon in our pajamas!

Unfortunately, we couldn’t sell the house. Due to the lovely state of the housing market, our house has dropped in price dramatically, and we would lose money to sell it. So, we resigned ourselves to stay. But we left our stuff in storage.

In August, Sebi had an interview for a fancy job in a large city. This would have put us very close to Ronca, the Brother in Law, and the nieces. We were pretty sure he was destined for greatness….but we had the wind put out of our sails. I cried. A lot. I really wanted to be there…where Jack would have more choices for his care, there are more specialists, more opportunity. J could swim year round. We’d be a whole and intact family.

(enters: the mourning period)

This is not where the story ends, though.

(this is like the Ewoks saving the day in Star Wars…)

There was word from the Boss that there was another job on the horizon. Sebi interviewed and prepared his case as to why this would also be a good option.

You see…after six years of living in Savannah, we are finally going home.

Schmoo. Ronca. Mel. Beloved. The Withag’s. Angela.  The family that we made when we were there just us. But now, we go home to that family, and our family. My parents are there, as is my brother. For the first time since we’ve had Jack, I will be able to have help if I need it. We are just over the moon about this…albeit stressed! We have a few weeks in which to find and secure housing, so if I’m not here, you’ll know why.

Two By Two (this might give you a clue…)

Fort Hopeful is headed South! It feels good to finally be able to say this all out loud…I’m SO not good at keeping secrets!

Just when I think life is…oh, I don’t know…somewhat OK—I get sucker punched.

Last week, Jack had a GI appointment. Sebi went with us to make sure I didn’t end up in jail. While talking (yes, JUST talking) and scheduling a procedure, Mr. Jack began the poop push. The kid is on several adult doses of laxatives a day, and he still produces rabbit pellets every 3 days. After pushing, and pushing, and making us all feel bad, he finally produced. Sebi left and I packed up the chair and the kids and got in the car.

We pulled out of the parking space, and Jack says: “MAH BUTT!” So I pulled back in. He produced again. Only it wasn’t pretty. I cleaned him, and we headed on. By the time we drove 3 blocks, I had to stop again. We got to TJMaxx, and I had to stop. I left TJMaxx twice. We also made deposits at Checkers, Burger King, an auto parts store, a McDonald’s, a gas station, and Kroger before we made it home. I had to stop and buy diapers and wipes.

I was crying–begging Sebi to call the pedi to get him in. Janson was crying from the toxic fumes.

We made it home in time for another round of “drama!”

I knew before we even hit the doctor’s office that Jack had strep. This is exactly the way he presents (some kids barf when they have strep, mine blows out his colon. It’s a gift). The doctor patted me on the back….and told me that I need to keep him homebound for school (which was kind of nice, because I was afraid she was going to be all about putting him in a real classroom!).

So I spent the last week in a fog of antibiotics, fever, and whining. And of course, Sebi was out-of-town. I was so tired and stressed at one point…I took a shower. A real hot, long shower. The one where you cry and talk to God and let it all out. I felt almost better until I went to wash my arms and realized I still had my bra on.

This week…J has it. Only she’s not as whiny and her colon is fine.  Jack went to Dr. Lung today. He’s a hot mess. His lungs aren’t really getting better (not that they were really supposed to being that he’s palliative). She was hoping that we could make it through a season without steroids. That’s not happening. His lung function has decreased a bit. Not anything major, but enough to warrant upping some meds and changing others.

It’s such irony, you know. I sit there and talk about such heavy stuff with her, and Jack is smiling and laughing and yelling, “I LUFF OOO!” at her. Wouldn’t it be awesome if we could be more like him, and less like…a giant ball of worry? She suggested we enter hibernation until spring. Sebi and I are going to work on a plan where we don’t take Jack out at all, but I can still get errands and things done. We’re considering a clone, but I hear they’re expensive…

There is (hopefully) going to be some news out of Fort Hopeful within the next few weeks that will change the game all together. That’s what I am looking forward to. Hope is the only thing getting me through right now.

(I really do wish I could be open and honest with y’all. But I can’t for various reasons…don’t need to feed the animals! You’ll forgive me later, I promise!)

Non liked kids. Non liked chocolate. Halloween was the best of both worlds!

When my brother was little (like toddlerish), he was pretty obsessed with Return of the Jedi. My mother decided to make him in to an Ewok for Halloween. I remember that there was a lot of furry fabric, a screaming brother, and Non came to help. The year I broke my arm, she and my mom wrapped me in toilet paper to be a mummy.

However, this recent snow fall in the area of my homeland had me remembering…

There were years when we first had to put on 5 layers of clothing and a snow suit. Then, you fit all those clothes under a plastic Scooby Doo costume (come on, don’t you remember when costumes didn’t cost a billion dollars and they were plastic with masks?). Non was the only person in the universe who had enough patience to gently slide us in to the costume while simultaneously stretching the plastic so it wouldn’t rip.

And then…she’d go. She didn’t like the kids that dressed up ugly, and she didn’t like kids being bad or mischievous.

42 weeks without her…and it still hurts.