20-some-odd years ago, I grew up in a little, tiny town. Everyone knew each other, and their business. Sometimes, this life was endearing. Other times, it was infuriating.

I grew up in a time where throwing around the word “retard” didn’t phase any of us. “Dude, you’re such a retard!”  It meant something close to “meaningless.”

I told people they were meaningless?

I told someone’s child they were meaningless? I am embarrassed to say that word was part of my standard fare of language. I did not realize how I was probably hurting some Mother’s heart. For that, I am extremely sorry.

6 and a half years ago, we brought Jack home and covered him in love. We had no idea the kind of road we would travel. Diagnoses, testing, waiting, bad news… However, my child is not meaningless. He means the world to me. To my family. To our extended family.

When Jack was 12 months old, he started speech therapy. His therapist used to tell him to “use his words” when he would only make noises. He would babble something that made no intelligible sense, and we would cheer! He chose to try to use the few skills he had to make something other than a noise.

If my kid, who has more diagnoses than he has fingers, can find the ability to use a new word, why can’t we find a better word to use than “retard” or “retarded?”

As a society, we have devalued the human race on many fronts. We have taught our children to say things that hurt without caring. We have shown our children, through our own actions, how to not care about others.  We have become too involved in ourselves and missed out on the fellowship of others, regardless of their intellectual levels. We bully. We shame. We stigmatize. This is not acceptable.

We need to change.

Together.

Today.

HI J!

I know you read this from time to time. I also know you don’t want me to gush over how awesome you are. I will keep my mouth shut, but only for today!

You’re finally a teenager.

I know you think you’re grown, and you probably don’t want to listen to my advice, but trust me…I wish someone would have given me some solid advice. Non tried. Meemaw tried. The problem is, when you turn in to a teenager, you stop listening and you only hear. Don’t do that. Listen. Even when you don’t want to. Because someday, Meemaw will be gone…I’ll be gone…Ronca will be gone…and you’ll be sad that you didn’t listen more.

Boys are dumb. They stay dumb until they’re 25 (it’s truly a magic age. After 25 they can be tolerated again). Basically, they like girls and sports and eating and watching movies. Keep that hard exterior that you have now. It will serve you well in the dating world. Don’t give away your heart too easily…broken hearts suck. Just like boys until they’re 25. By the way, you can’t date until you’re 40 (kidding…mostly).

Education is valuable. I know that right now all you want is to be a chef. I think that is a fabulous idea, but get a degree anyway. Someday, when you’re running your fancy restaurant and doing a show on the Food Network, you’ll thank me for that degree in ____________.

Try things. Go places. Create adventure (don’t try drugs though. I will kill you.).

Be friends with everyone. Don’t try to join the “in” crowd. Those kids will only lead you down a path of judgment. You will never learn the value of true friendship (friendship that transcends), and really, clothes and shoes do not make a person any more valuable. Besides, someday you’ll be 35, sitting at your table, reading your Facebook feed…and the “in” crowd will be selling used cars, divorced, and still just a judgy as they were then. And you will be able to laugh knowing that you got the better end of the stick!

No matter how big or small you think your troubles are, remember that you have parents who love you and will listen to you whenever you need us. Don’t ever be afraid that something you have done/want to do/regret is too much for us to handle, or that we wouldn’t care. If you just need us to listen and not give advice, one of us will be able to do that, while the other may have a hard time. I bet you can guess which is which…

Just keep swimming (literally and figuratively).

With all my heart, I love you, J. Happy Birthday! xoxo

Dearest Jackpot,

Happy Birthday, Buddy!

I thank God for you each and every day because having your in our lives has made us rich. Not rich in fame or fortune, but rich in love…in hope…in a deeper faith.

What would I possibly be without YOU?

Right now, you’re totally in to questions…you always ask “why?!” and “how many is zero-zero-one?”  So for you, I am going to tell you the six things I love the MOST about you (today—it’s a dynamic list!).

1. Your heart.  In all my years on this earth, I have never met a person with the capacity to love like you. You know no stranger. The world would be a better place if we all acted like you.

2. “I love you, Momma!” When you are confused, or can’t find the words, or are just exasperated…those are the words you choose. It both breaks my heart and makes me melt. Thank you for making me your Momma.

3. Your dimples. Seriously, I want to take you to the UN so you can stop wars with them!

4. The way you created our family. Before you, our family was not strong. There was always someone fussing with someone else. Or, rather, we all just didn’t talk much. When you stepped in to our world, you created this dialogue between us all. Because of you, Ronca is my confidant, and Uncle Ben is no longer on the “DO NOT ANSWER” phone call list! Aunt Abbey is my favorite texting partner and Uncle Brian’s laugh is contagious. Jack…you rock.

5. You believe…. Jack, I have never in my life seen a child who believes like you do. You believe that Star Wars is real, that God himself lives in the church (let’s not get all metaphysical on this one), and that one day we really will see a dinosaur in our back yard.  I want to believe with a child-like faith like you.

6. Your lungs, tummy, g-tube, brain… If you were a “typical” kid, I would have never learned to appreciate each and every day I have been given. I wouldn’t wake up thanking heaven for the fact that I am waking you up. I wouldn’t be thankful that there are advances in medicine that can keep you here, in my arms. That’s where I always want you to be.

I love you, so very, very much…my beautiful boy.

xoxo,

Momma

You know, I am not usually up on current events or pop news. I catch bits and pieces of Good Morning, America occasionally between getting children up, moving, and ready for their day. The only reason I know anything else is because A got me a subscription to Us magazine for Christmas. I’m currently still reading April’s first issue.

Yet, I heard about the new fad diet to help brides get skinny for their Big Day. They have a feeding tube inserted through their nose and they carry around their 1000 calories of liquid nutrition for 10 days to lose weight.

Take a deep breath, and absorb that…

Believe me, I am totally against this type of reckless behavior. As a nurse, I can only imagine the detriment this could possibly be doing to multiple systems of the body (and quite frankly, I think the doctor who is willing to do this…ugh!). As a mother, I am irritated that our daughters are being taught, once again, that you cannot be beautiful unless you are pencil thin, with big boobs, and lots of junk in your trunk.

What the news media fails to mention, or remember, is that…

I thank God every single day for the feeding tube diet.

My son survives because of this “wacky” diet. Without that tube giving him the sustenance he needs (plus vitamins and minerals), he would not be walking this earth. He has to sleep in a special bed with the head raised to a specific height. He has to sleep with a plastic tube running from an IV type pump to his stomach. If he rolls over, it pulls on the tube causing pain. If he pulls the tube out…he could damage himself permanently. He receives every medication through his feeding tube. It has to be covered when he plays so that he doesn’t pull it out, and so that nothing foreign could get near it causing infection. He can’t ride many rides at theme parks, because the bar to hold him in would rub his tube. He can’t play like other kids, because he might pull the tube out.

Every pound he loses will take weeks or months for him to regain.

So, sure, it sounds like a great way to shed pounds fast (can you hear my eyes roll?).

Please, put some more stigma on my kid while you’re at it too.

Is this optimal for Jack, no.

Is this the way I pictured my life, no.

When we were faced with having Jack’s tube placed, I agonized. I researched. I cried. I begged God to miraculously touch my son and heal his brain so he could swallow. I sat with speech therapists and cried. I talked to other moms…and cried. And when I held my tiny, 13 pound, 8 month old son when he came back from surgery, I cried. I cried because I knew his life was saved. Even though that was the hardest decision I had ever made.

That was almost 5 years ago.

I thank God for the feeding tube diet, because every day I have to wake up at 4 AM to silence the beeping from that $^%&*&#(* pump, means that I have another day with Jack.

In honor of Mother’s Day, I’m letting you in on the Secrets to Being a Good Mother.

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!

You know how when you go on vacation and it’s bliss the first few days, but by day 4 you’re dreaming of your own bed, your own smells, your own routine?

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.

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!)

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I’ve missed you. xoxo