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.
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!)
Today, I’m 35. If you know me, it’s no secret to you that my birthday is one of the Most Anticipated Days of the Year! I usually have a count down started by March. One of these years, I’m totally going to make Sebi good on his promise of a parade….with a dancing bear. Or something.
This means, I no longer be lumped in to the 18-34 demographic, which essentially makes me old, right?
5 years ago, today, we received a call inquiring if we would be interested in adopting a baby boy who was waiting for us up the road a piece.
My, how time flies. How hearts change. How love grows. How loss hurts.
When I was a little girl, and even when I was in college, Non would take us out for our birthdays. It was our special day. One on one with the Nonnu. We’d hop in her car (license plate IAM NON) and most often head to the local mall. Seriously, in Mayberry, there weren’t many other options.
Many times, we’d wander from store to store. She’d grab my hand from time to time, and I never felt ashamed or embarrassed. Her hands were so soft and tiny. I have never felt skin as soft as hers, and I never will again. We’d just hold hands and talk and wander through the mall. She let ume pick out a gift (more often than not, it was a clothing item) and then she would take me for lunch. Anywhere I wanted to go—it was my day. I remember one year, my cousin chose to go to Hardee’s, much to Non’s chagrin! My brother often chose weird places too, like McDonald’s.
My favorite spot…the A-Frame. It’s an A-frame house that’s been converted to a restaurant. They have other menu items, but the only thing ever ordered was a cheesesteak sandwich. We would share one, along with a bag of chips, and talk.
If I was especially nice, she would drive home the long way, which allowed us to drive up the hills to where you could see the leaves beginning to change color and the apples ripening in the orchards. Then we would arrive home to spend time with all the family eating cake and sharing laughs.
I adored our time together. Every single moment of it.
So, I’m going to be here…waiting for the parade to start…remembering my Non, my cheesesteak, and enjoy my family. Because, that’s what she would want me to do.
On Tuesday, my husband passed his citizenship test!
Non wanted nothing more than for Sebi to become a citizen. She harped on him any time she could about it. Usually, she started the conversation with “I’d hate for you to get sent back there and leave Heather to raise those kids alone….”
He wanted to do it. He needed to do it. But, citizenship comes with a price. A $680 price. Every time we seemed ready, something would happen (usually meaning– Jack got sick).
It’s been an interesting process. He’s spent 16 hours traveling to appointments in 2 separate states. He’s been fingerprinted and investigated. All leading up to the Big Interview.
He first had to prove he could speak and write. He was to repeat “The President lives in the White House,” and then write that same sentence. He aced that part!
The questions were pretty tame as well. First President? Name 2 National holidays? What act made discrimination illegal? Will you bear arms for the country? What happened on September 11, 2001?
With a “congrats” and a stiff upper lip, they sent him home to wait to hear when he will be sworn in as an American citizen.
I’m pretty sure Non walked her little self right up to Jesus and said, “I feel better now that I know he won’t be deported.”
In Chile (and in most other Latin/South American countries), a child takes his mother and father’s last names at birth. The name is hyphenated. For example, if I was born to John Smith and Mary Jones, my name would be Heather Smith-Jones in Chile. The mother’s name is last. I guess that’s great for when you have multiple children with different fathers (cough). It’s also a very Catholic country, so many children have multiple middle names (their Saint names).
Anyway, when you become a citizen, you can change your name. My sister-in-law did, and so did Sebi. I think it’s a pretty cool thing. It’s sort of like being reborn…welcome to your new life.
Congratulations, my love…my American!
Thank you, Non, for all the support. We love you.
I’ve been quiet.
I’ve been praying.
I’ve been hoping.
And now I can tell you the truth.
2 weeks ago, my husband applied for a new job. It would have been the absolute perfect situation for our family:
Back to FloridaNear Children’s HospitalsNear all our family Better opportunity for SOur friends close by…
Yesterday, S came home devastated. He was not blessed with the job. We were not blessed with the only thing that we have prayed for since Jack’s birth. (We shall not go in to my big ol’ fight with God over this, OK?)
My husband is hurt. And so am I.
He’s been very loyal, and he’s a wonderful guy. He’s the guy that drives to work in the middle of the night to smooth over hard feelings, rather than simply talking on the phone. He’s the one who volunteers to help everyone else out, just to get some extra training or to learn something new.
I don’t know how to make this better.
So, took Sebi to the doctor today.
Contrary to my anxiety ridden, sleepless night, tossing and turning, thinking the world is about to come crashing down thoughts…
He’s gonna live.
His cholesterol is high. We knew that before he went. Other than that, he’s really doing well. There is a little regurgitation in his mitral and tricuspid valves, but that’s minimal at this point.
However, he can’t make up with Little Debbie. The doctor agreed with my dining choices for him.
OH…and BEFORE I went to the doctor with Sebi, this is how our day went:
0632: Sebi: “Honey, you said to wake you up.” Me: “I’m up. Can’t you tell I’m up?” Sebi: “No, not really.”
0634: Sebi “OH $%^%#$!” Me: “WHAT? OH %^#&#^!” (our beloved Jack–sometime in the night–unhooked his feeding tube. He was swimming in Pedialyte, precipitating a very early bath for him. And we all KNOW how much he loves water…)
0740: Leave house to head to Jack’s neurology appointment
0815: Arrive at hospital. Jack has screamed the whole way in the car. He claims I was singing, which I was not. However, today, singing is the last thing in the world that he wants. And, I think he was talking to an invisible dinosaur as well. He begged not to go in, because he wanted to go to the “girl doctor” who has the “tweasoo chess” (treasure chest).
0845: Appointment with neuro. Up some meds. Pray for the best. Legs still getting more rigid than we anticipated. Wait and see. There is some concern over his airway/eating–but there’s always been that, so that’s not really new. There is also some question as to why he seems to be doing worse gross motor wise than he was…appointment in August. Sigh.
0945: Break in the action. I think, “Gee wouldn’t this be a great time for me to run some errands and pick up things we need to go on our wild, outdoor adventure?!”
1000: As I drag the wheelchair out of the bus car truck, I reach down, fix the seat, get his seat belt situated, put down the foot rests—and I look up to see an old man staring at me. That was about the time I realized he was staring down my shirt. There has got to be a better way to do this!
So, as you can see…by the time I managed to get home, I was done.
Did I also mention that it’s 375 degrees and 130% humidity?
Soooo, how was YOUR Monday?
Completely rational and sane people would wait for test results and not be a hot mess.
I am not rational or sane.
Also, I’m a nurse who has worked on the stroke unit for 5 years. Sweet irony?
So, I didn’t sleep for two days because I was sure as anything that he was going to have the Big One, and I would miss my opportunity to get him to the hospital for t-PA. Which led me to worry about what I would do with the children…in the middle of the night…in the ER…where all my friends work. With a feeding tube. Um…
(do you get me on the not rational or sane? Believe me now?)
It was then decided that Sebi needs, more than anything, a vacation.
First, we were totally going to do Disney. Then we decided we don’t really want to do Disney during a busy time of year, when it’s 80 bazillion degrees in the shade.
We thought of going here and there, and then…we decided to go to the mountains. As in, rent a cabin and hang out for a week of nothingness.
But that isn’t good enough, I thought. Let’s rent a BIG cabin, and make it a family event! So, we’re heading to the mountains, at an undisclosed time, to make memories with Ronca, Brian, and the girls.
Did I mention that Ronca and I are planning on being housebound by our fear of snakes?
Just planning a vacation is not for the sane or rational either….
We decided to take Janson to Star Wars Weekend at Disney last week. You know, because we needed to get away from it all. Or something. I had to attend this course to become a CPR instructor all day, but Sebi had the car packed and the kids ready when I got home. I ran in the door, threw my bag down, went to the potty, grabbed a drink, and we were off!
3 and a half hours later, as we cruised through Apopka, Florida, I felt my heart descend to my very cold feet.
My wallet…with the tickets…and my ID…and everything we needed?
In the bag that I threw on the couch when I came home from class.
Guess who did not, indeed, go to Star Wars Weekend?
After I stopped crying, we laughed about it. Because, seriously, only I could do something quite so…rational and sane.
Normally, Monday mornings are a zoo around here!
Get up, breakfast, everyone dressed, homeschool begins, and we’re out the door for Jack’s PT and OT.
And here I sit on the couch.
Jack is having some weirdness. He’s having a very difficult time functioning. He just can’t seem to make his body do what his brain is telling it.
So, he screams.
Blood curdling screams.
I’m talking screaming-like-someone’s-trying-to-steal-your-favorite-chocolate screaming– for awhile.
And by awhile, I’m not talking 5 minutes. I’m talking the time it takes to get diapers, Easter supplies, birthday gifts, socks, shoes, clothes, and sunscreen at Target.
Before you judge… This isn’t merely behavioral. We don’t often leave the house. Jack has been on medications for his weirdness for 14 months. He physically and mentally cannot control what goes on between his brain and his body.
It just about breaks my heart to admit that.
Our appointment in Tampa isn’t until August. The doctor here has been called 4 times since Thursday, and he hasn’t bothered to call back. You know, that’s how we roll here in the Savannah. “So what if your kid doesn’t sleep, screams constantly, and tries to hurt himself constantly? You’re not as important.”
Which depresses me.
My feelings against the Savannah medical community grow darker with each passing day.
After our Target foray, Sebi looked at me and proclaimed that watching Jack be like that was no fun!
I was torn between bursting in to tears and beating him to death.
This is what happens in our world.
And I really don’t know how much more I can take alone.
(So, who wants to help find Sebi a new job? Hmmm? Anyone?)
[also, I don't mean to be a whiner. I'm tired, can't sleep and worry constantly. I'm just cranky.]
In what can only be considered a miracle, we went on a date. A real date! As in, we-both-showered-dressed-up-ate-food-cooked-by-someone-else-and-had-no-children-within-20-miles-of-us went out.
As we were driving home, we were reminiscing about the past 12 years. A Highlight Reel, if you will.
**When we started dating, I lived in a garage. I’m not even kidding. I paid this older woman $200 a month to let me live in her garage, in Florida, with no heat or air conditioning.
My husband, bless his heart, he delivered me from the garage!
**One of my first surgeries was on Good Friday. It happened to be performed in a Catholic hospital in Jersey City, New Jersey. I awoke from anesthesia to fish. I begged him to eat it so they’d let me go home.
**I decided to start being domestic–about the time the doctor suggested I go on fertility drugs. Probably not the best decision I ever made. I put some pork chops in a pan. I seasoned them with some pepper and salt. I couldn’t find the aluminum foil, so I covered them with Saran wrap, and placed them in the preheated oven.
Upon discovering, much to my disbelief, that the Saran wrap had magically disappeared(and my pork chops looked very shiny), I decided that I needed to share my good news.
I called my father–who laughed hysterically and told me to throw them out or I’d kill my husband.
We ordered takeout.
**When Janson was born, Florida was to be hit with hurricane Floyd. Everyone was evacuating. The hospital kicked us out. I had a 2 day old baby and no clue what to do with her. Sebastian had to report to the hotel for work, because it was a safe shelter. However, before he could go, I made him go to our apartment and bring every single thing that belonged to the baby to the hotel.
He was so happy. (EEK! When I tell you he was upset, that could be the understatement of our marriage.)
We continued on bantering like this for a long time. 12 years is a long time to build memories.
Sure, not all our memories are funny. Or happy. Or good.
Yet, we have taken all the things the Universe has thrown at us, and we’ve managed (well, usually we manage to have a big fight about it, and then one of us presents a compromise. Unless we are moving or doing a home project. Then, I will win.).
Imagine the stories we’ll have in another 12 years!
(Seriously, last night we were talking with Janson about race…and we asked her what race she is. She never missed a beat and said, “I’m a mild Chile!” That’s awesome!)
May we all thank my sister in law for driving 5 hours one way to babysit so we could go out. Also, thank you for installing our sink while we were out.
And a very special thank you to Polly and Veronica—the thought you put in to our anniversary gift nearly brings me to tears. The shower curtain is possibly the most thoughtful gift anyone has ever given us. Bless you!
Lots of things come by the dozen…
Roses. Cookies. Eggs. Hot Dog Buns. Crayons. Bagel bites…
The hours in the AM and the PM.
Tonight, is a very special night. It’s Jack’s 100th anniversary of his dozen sleepless nights (it sounds way better to say that than to say it’s his 1200th sleepless night, don’t you think?)
Alissa asked me if I really counted the days.
What else can one do between the hours of 1 AM and 7 AM?
In other tragic (melodrama is totally my forte) news:
The Weather Channel didn’t pick us. They picked a family who lives on the beach in Key West.
I was kind of upset. We worked hard to make a video that showed how well we know the Weather Channel, while still stressing that Jack would probably never get to see snow (because it’s so terribly hard to travel). Of course, we were one of like a bazillion people to enter, but whatever! I thought (really thought) we stood a fighting chance.
*back of hand to forehead* I’m not bitter.
I’m sharing our video so you know how well we know our Weather Channel (and subsequently embarrassing myself, my husband, and poor Jack—with credit to our awesome director (dictator) Janson):
So, does anyone know where I can rent a snow machine? You know, in a place where it will never snow? Or get cold? Heh.