Remember when I wrote her this? (sorry about the link. Everything got messed up when I moved to this site…)

So, without further ado..

More Things I Have Learned From My Mother:

1. Name your children good names. Or, name them names that will prohibit them from ever having a job which would scare the life out of a mother. Case in point: “Heather, Jack will never be able to be a pilot. His friends would yell ‘Hi Jack!’ and it would scare people!”

2. When your husband is rushed to the hospital via ambulance and you are called to be told he’s had a heart attack—RUSH to the hospital. When the doctor tells you he’s thrown his back out, and is not, indeed, having a heart attack: slap him (the husband, not the doctor).

3. The death stare is something to use only at appropriate times. Like, for example, when your 4 year old stands in the courthouse screaming that he’s not ever going home until you change his name to Luke Skywalker.

4. Erika Kane is not real, and we should not write to her as if she is.

5. One should never, ever tell small children to jump off the stairs in earshot of a mother.

6. It is completely appropriate to have your child and your husband sleep downstairs, wielding barn cats and tennis rackets, to chase the chipmunk out of the house. It is not appropriate for them to make fun of you because you’re afraid of said chipmunk (ferocious he was, I tell ya!).

7. When a very large man falls through your ceiling, and 4 other large men are standing all around him saying bad words, one should always be prepared to cry. Immediately.

8. As Youth Group leader, you cannot expect your own child not to be the protagonist. You should be proud that she could burp all 66 books of the Bible!

9. If your child calls you crying because she hit an opossum, then ran back over it because it was crying and miserable, you should probably not laugh and hang up on her.

10. One of my favorite things she ever did ever…when I was younger she would send me her used magazines–and she would write comments on stuff she liked or stuff she thought was funny (we should do that again, Mom!).

11. The Easter Bunny is a privilege, not a given. Just ask the child who locked his sister in the basement.

12. Everyone should own a terry cloth, one-piece, short, tube top jumpsuit. And NO ONE should ever make fun of them (My personal favorite was the white one with watermelons all over it!).

13. Regardless of what Pappy (my grandfather) tells you, Hippos don’t lay eggs.

14. If there is a large snake in your yard, send the children to kill it. Give Scared (me)a shovel, and Scared-er (brother)a gun. Let’s see how that works out.

15. Being a grandmother is bliss. Have your granddaughter paint your toenails while repeatedly asking her what she calls the Resident Groundhog! Then laugh. Until the tears roll. (J called it the Silver-Backed Beaver. She was 3)

16. At large family weddings, write notes to each other on the program. It’s probably better to not mention that your husband is wearing the same tie to this wedding that he wore to his firstborn’s baptism thirty years ago, though.

17. The correct response to all disasters is: “Oops, We’re gonna need another Timmy!” (extra points if any of you know what I am talking about!)

18. We shall Never speak of the Pepsi Can Incident of 1997 again.

19. My first grade teacher (and member of our church) asked me what lullaby my mom liked to sing to me, and I told her “3-6-9 the Goose Drank Wine!” Naturally!

Happy Mother’s Day Mom…I love you!

The new wears off. It always does.

That’s sort of where we are right now. We’re all moved in. Walls are painted. Pictures are slowly being hung on walls. We had the landscapers come and remove the jungle which was growing up all around us take care of some needs around the yard. You know, normal moving activities.

But we’ve also been to the pediatrician, neurologist, gastroenterologist, and pulmonologist. Multiple times. Already.

S is settled in to his new role; although, he is still not done with his old hotel (which makes life a bit more, shall we say, complicated?). The new hotel is progressing nicely and he is happy. Really happy. He needed this. He’s happy in the house too…it’s enough of a project to keep him busy, but not enough of a disaster to make him crazy. He’s been enjoying cooking out and cleaning the pool (or should I say, removing the frog that keeps trying to live in the pool). I’m so proud of him (and not just because he saves me from the frog).

J is growing up. In so very many ways. She is a beautiful example of what a person should be, and I am so honored to be her mom. I have watched her take things that others would balk at, and shine. I have watched her get her feelings crushed, but still manage to keep her head up and move on (I’ve also experienced a lot of the slamming of doors, rolling of eyes, pillaging of the fridge–she’s still a (an almost) teenager!). She is going to enter a new school in the fall. I think it’s time for her to meet some friends and be a kid. She has spent far too much time being my sidekick. It’s time for her to find her new sidekick, and as much as that breaks my heart, I know it’s what is best for her. I’ll miss her…

She went to the doctor yesterday as well. Her ear is all swollen shut, and they are concerned that her tumor might have grown back. She’s been having dizzy spells for a while and I had her tested for everything from malaria to die-uh-beat-us (spoken in my best Wilford Brimley voice). I never thought it was her ear again.

Breathe.

Jack is Jack. We aren’t sure which Jack we will encounter when he hits the floor in the morning. It’s either Jack the Beast or Jack the Gem. Unfortunately, the former is more common than the latter these days. He’s begun to exhibit signs of self aggression again, and we’re struggling to keep him from hurting himself.

He’s supposed to enter kindergarten in the fall, but we’re not sure what we are going to do. There is a special school here–they teach life skills rather than your typical school stuff. It’s hard to admit that your child will never probably go to college or that your child will never probably be able to be age appropriate. I know for sure that we need to do something, I’m just not sure what the best answer is.

The school is expensive. I am jobless. Not that I haven’t tried to get a job. I’ve had interviews. I thought they went better than they did. The problem is, in order to be hired as a nurse, I’d have to be paid $xx.xx  per hour. Which is significantly higher than, say, a new graduate nurse. So, who gets hired, the new grad. I can’t really have the higher level jobs yet, because I haven’t officially graduated (but I can see the end of the tunnel!). So, I’m stuck being called for interviews and then being passed over because of my over-qualifications, or my under-qualifications. So, we can’t really afford Jack’s school until someone decides to hire me (and we wonder why there’s a nursing shortage?).

Physically, he’s doing about the same. There was a piece of me that was sure when we moved, some miracle light was going to shine upon us, and Jack was going to be…I don’t know…better? Each doctor we encounter looks at me with the same sad eyes and says things like, “we’ll keep him comfortable,” or “we can only treat his symptoms at this point.” It’s heartbreaking to me, but I really hope, with all my heart, that he doesn’t truly understand what they say about him.  I can’t imagine what that would do to him. How does a 5-year old reconcile his own mortality? I don’t want him to experience that. Ever.

So, the new has worn off.

That means we are home. Forever.

… 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.

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.

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!

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

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…

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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*

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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.

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.

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!