A Laughing Matter

Journal entry by Barbara Bradley — Jan 14, 2013

I’ll make this short and sweet because it has been a very long day. We arrived this morning at duke hospital for preop appointments. We have a checkin time of 9am. Katie is the second surgery for her surgeon so we are most likely looking at 10ish for her surgery. We are doing well. Tired. Checked in to Ronald McDonald House for our stay. Because of flu procedures at the hospital Nathan won’t be allowed to her room once Katie moves from PICU and he definitely won’t be able to go into ICU. We planned to take turns with the kids anyway but this makes things a little more challenging. We will make do. Katie got her MRI and they glued the “beads” on her head again to help with mapping for the surgery. She looks like an alien. A very cute alien. I’ll post updates in the morning as I get them. Thank you all for the prayers and thoughts.

Journal entry by Barbara Bradley — Dec 17, 2012

The team concluded a connection was in fact missed and it was a unanimous decision that it’s worth going back in to sever it. I got word this morning that her revision surgery to complete the disconnection is scheduled for January 15th.

Katie is doing fairly well but she continues to have seizures at night. In the past few days we have also seen her pupils doing their strange magic tricks so we have our fingers crossed that she doesn’t start acting up again. I really don’t want to be back in the hospital before her surgery and certainly not during Christmas break.

For now, life goes on.  The laundry piles up, meals need to be cooked, school is in session, presents need to be wrapped and parties need to be planned because some of us thought we needed even more to do and volunteered to be room- parent for our preschooler. This title includes organizing a “winter” party which requires planning crafts and snacks to which some of us thought gingerbread cookies would be a fantastic idea to have the children decorate and eat until some of us realized that everyone else had the same flippin’ idea. The only flippin’ cookies I see now are circus animals and decorating circus animals for a Christmas party (even when its called a “winter” party because we can’t call it a Christmas party because we are all too worried about offending someone) is just not the same thing as gingerbread cookies….whew…. so listen up little preschoolers you are gonna decorate your “winter” circus animals with icing and sprinkles and you are gonna like it and you are not going to ask Katie’s mommy why you are decorating circus animals or some of us might shove a tiny winter circus seal up your tiny nose!! Merry Winter Circus Animal Cookie Christmas!

I leave you with our visit to mall Santa.
I really hate waiting in line at the mall for Santa but this is one of those traditions we are required to do as parents. The line is too long, my kids never smile, and they charge a fortune for a terrible picture in a stupid plastic frame. 

After waiting for an hour, my lovely daughter decided to throw an all out conniption fit (I really don’t think that’s a real word but I grew up hearing my mother say it). My phone that normally keeps her busy did not have a good signal and she had had enough. I finally gave her a juice cup and the line began to move. We were almost there and she was just gonna have to deal with it. Just to spite me she waited until we were next in line and then unscrewed the lid to her sippy cup and poured apple juice all over her lap and down her back.

It’s safe to say, Katie’s favorite word is still “no”. After explaining to Santa that my lovely daughter was wet from apple juice only the meeting went a bit like this…

Ho ho ho, what’s your name little girl?
Nnnooooo
Have you been a good girl this year?
Nnnnoooo
Well, there is still time to get on my nice list. Ho ho ho.. What do you want Santa to bring you this year?
Nnnooooo
How ’bout I bring you a baby doll?
Nnnnoooo

Thankfully my sweet boy still believes in Santa. He sat happily on his lap and told him what he wanted but kept his list to only four items because he says we can’t expect Santa to get us everything we want. On that note, have a Merry Christmas. Go ahead and ask for what you want. You may not get everything on your list but you won’t know if you don’t ask.

Journal entry by Barbara Bradley — Nov 26, 2012

Today is the two-year anniversary of Katie’s brain surgery and I should be posting that she is seizure free unfortunately that is not the case. Katie was admitted last night to Duke University Hospital for testing and to get her seizures under control. After a lovely Thanksgiving we headed to the zoo the next day. It was perfect weather and fun for all…..until the 6 puking seizures Katie had. We were standing in line for the Merry-go-Round which Katie loves. I was behind her and she was squealing with excitement and trying to climb the railing to get to the ride. I then see her bouncing up and down so I leaned down to see what I thought was going to be her beautiful, happy face only to find her panicked in the midst of a seizure. She had about 8 more episodes like this that day. Saturday the number quickly jumped close to 20.

Sunday afternoon I emailed her neurologist and it was recommended I bring her in to get a handle on things given her history of escalating so quickly. Remember how I said I would never do another EEG on her….well, she has now had two in the same week. Thank God it was close to midnight by this point and she was too exhausted to put up a fight. We arrived around 9:30, got checked in, CT scan run and EEG leads hooked up. It was 1am by that time. Katie seized close to every few minutes so I stayed in her bed so I could push a button to document the episodes. Needless to say there wasn’t much sleeping going on until they finally gave her some ativan to calm her. They needed to capture the episodes for the EEG so they waited til early morning. By the time we got to sleep everyone started coming in to do rounds. Uuugh! For now, I don’t have all pieces of the puzzle.

The EEG confirmed they are seizures and they are showing up on the right side but this doesn’t mean they are originating from that side. It very well could be and hopefully is that there is a missed connection and the left side activity is traveling over. Tomorrow she will have a very detailed MRI that I pray shows us what we need to see. If not, the good side may not be so good. This seems unlikely though. We have never seen any activity on the right side before. For now, they increased her Keppra and have given her an IV loading dose of a new med that seems to have made significant improvement in the number of seizures. She is doing fairly well today but physically tired and tired of being here. Me too. But I am thankful to be here and getting these tests done so quickly as opposed to waiting weeks as you would expect. We were pretty devastated this weekend but we knew something was brewing. Now our focus is gathering data and deciding our next move. I hope we get out of here tomorrow but I just remembered we are on the calendar to see a doctor with the Duke Eye Center on Wednesday. If they discharge us tomorrow I will probably get a hotel and stay the night so I can keep her appointment with the Eye Doctor. We are already here so what’s another day. Pray for my sweet girl.

Journal entry by Barbara Bradley — May 14, 2012

At any moment you may look out your window to see a parade marching down your street. This time last week I finally got word that Katie was approved for Cap/C services and the Medicaid that goes with it. It is about time. I am still learning how it will work but this should help supplement her medical care that insurance doesn’t cover. 

The first item on our agenda is to get the process started to get her another speech device. Since hers was taken away she has coincidentally stopped saying much of anything. (Have no fears. I am still reporting Cigna for denying her device. That is not something I think is right for me to just let go if it could help other children.) It really is divine timing for this to finally come through with everything else going on. Diapers are on the way to our house as we speak. That alone will save about a million dollars a year. 

I can report the marks are still fading but my shingles are gone. I am also seeing a glimpse of the happy pills starting to calm me a bit.  There’s no magic wand. Life’s problems don’t go away but the soundtrack  playing in the backdrop does. Instead of hearing Nine Inch Nails screaming through my thoughts I might hear The Sound of Music. This is my best description:

” I’m sorry, ma’am, I know you have been waiting in line but I’m about to take my break.”(Brown paper packages tied up with string. These are a few of my favorite things.)

          ” Ok, no problem.”

“Oops, looks like I didn’t numb that tooth enough before I started drilling. Sorry.” (when the dog bites, when the bee stings…..”

           “dat oh-kay”

“Sorry, your daughter chewed on her brand new glasses.” (just when I’m feeling saaaaaaaaaaad.)

“Oh, well you didn’t actually say she was disabled. I can’t just make assumptions.” (I simply remember my favorite things and then I don’t feeeeeeeeel sooooooooo baaaaaaaad.)

We visited my mom last weekend. I had prepared myself for the worst so it wasn’t as bad as I imagined; however, she has a very hard time getting around and she does good to just go to the kitchen or get herself to the bathroom without having to stop and rest. I was so proud of the kids. Mom hadn’t seen them in about 2 1/2 years so it was good for her to spend time with them even for only a short time. Katie seemed to understand that even though she didn’t remember her Granny she seemed to know she wasn’t feeling well. I put Katie up in bed next to my mom and Katie laid her head down on her shoulder and snuggled up. Overall, the trip went well. I wish it had been under different circumstances but we needed to visit now while mom is still able to get around some and isn’t too sick to enjoy the visit.

In the spirit of my mom and the other moms out there, Happy Mother’s Day. It can certainly be a thankless job but there are some fringe benefits that can never be put into words. This year my birthday just happened to fall on Mother’s Day. This hasn’t happened since I was pregnant with my almost seven year old son. My sweet husband surprised me Friday night. He arranged for Katie’s preschool teacher to come over and sit for the kids while we went to dinner and a movie. It certainly beats a normal Friday night of leftovers and reruns of Swamp People and Storage Wars. I even brushed my hair and changed out of my yoga pants.

Like it or not, I am officially 38. Eh, guess it’s not so bad. I don’t know what I thought was gonna happen. I can’t say things are the way I imagined them to be but it ain’t over yet. All week I have been eating salsa that expired in January. You know what they say – at some point you begin to turn into your mother. 

For years we have joked that you better check expiration dates before eating anything at my mother’s house. From food to medicine you must take precautions. Once after living on my own I went to visit my parents. Upon telling mom I had a headache she reached in the cabinet for ibuprofen. With a quick glance at the outdated bottle, I noticed it expired in 1986. Down the hatch! That is one experiment I didn’t partake in. I suppose it’s just a matter of time. Today I throw caution to the wind to get my salsa fix and the next thing I know I’m harboring expired pain meds. Hopefully I have a couple more years before you find me at a stop light tweezing stray chin whiskers in the rear-view mirror. “Sunlight!”, my mother would say. “I can only see them in the natural light.”… Merciful heavens above.

We are just weeks away from the end of the school year. Next Wednesday I have to attend Katie’s last school meeting of the year. It will be her transition to Bright Beginnings. Real prek if that helps. She is currently in the EC (exceptional children’s program). She will be 5 in the Fall so this is more like a regular class to help her get ready for kindergarten. Instead of a small class of 5 special needs children she will be in a class of about 14 students with about 10 being typical children. I am very nervous about this as one can imagine. This meeting will be to determine what she needs next year to make the year successful for her. I feel that needs to include an aide but I am sure the school will feel differently. I just hope Mellow Mommy has what it takes to get her way in this meeting. It takes a tough skin and a mean streak at times to get done what I need to get done. I just pray I get one good swing in if things don’t go as planned. Good luck, Mellow Mommy.

Journal entry by Barbara Bradley — Apr 23, 2012

We survived Spring Break. We stayed in town and I took the kids to the usual cheap or free stuff around town. One place we like to go is called Plaza Fiesta. For those of you that don’t know it is a HUGE indoor play area. It’s like a McDonalds play area on steroids. To be honest, this place is more about doing something Nathan enjoys because Katie can’t do any of it without my help. As all the other moms are sitting around chatting or on the phone, I am hunched over trying to help a 36 lb. kid slide, climb while not getting trampled by the other kids. Katie has fun but she can only handle 10 minutes or so of play at a time. Her stroller, a juice cup, and my cell phone are her retreat. As Katie and I were resting a bit a little girl with no sense of personal space came over and started quizzing me out of nowhere.

“What’s she chewing on?” A chew necklace. “Why?” Because she likes to chew. “What’s are THOSE?” Leg braces….why don’t you go pl….. “WHY?” They help her walk. How about you run along and go slide or jump off something. “Does she talk?” When she wants to. “Is she a bay-beeee?” Listen, Goldie Locks, I’m gonna give you a 30 second head start and then you better hope I don’t catch you. 1..2…3

Sure, I know she was only 3 years old but don’t let the adorable pig tales and Dora t-shirt fool you. That was one snarky toddler. I never knew light-up Sketchers could move so quickly. She ran to her mommy. Big baby. Of course her mom looked like she just came out of a yoga magazine photo shoot. I had no choice but to take them both out.

Katie’s doing pretty good. I had to send her speech device back. I am still in the process of a level-two appeal with her insurance but I needed to get it returned before it got lost or broken. We are still going through the Cap/C process. A nurse case manager came to the house Thursday and asked me questions for 3 1/2 hours. She will send her stuff off to the group that reviews the information and makes the decision. At least it’s in the works.

We are headed to Texas to visit my mom soon. She is under hospice care. She has cancer that she let go until it got out of hand and now there is nothing they can do for her. Living in denial has a way of catching up. The smell of death is in the air and the rats are coming out looking for their piece of the pie. Family can really suck sometimes. It should be an interesting trip. I may need to bring some rat poison.

I now share with you laughter at my own expense. I went to the doctor Friday for what I thought was a spider bite gone horrible wrong or maybe just a little flesh-eating bacteria gnawing my leg off from the inside out. I am such a complainer. Shingles! I have @&$@$)&$ shingles. I know the past few years have aged me considerably but apparently I am 37 going on 80. What’s next dementia, stroke…..ooooh, how about cataracts ?! I would rather have a flesh eating bacteria or maybe a little Ebola virus. At least that would just do me in already. How much is one person capable of handling?! Somebody just come over and hit me over the head already. I’ll pay you. Just don’t cash my check until after you kill me.

“Mrs. Bradley, you are under a lot of stress so this can happen.” What do we do? Rub tequila on it? “No, please don’t waste the tequila.” You’re right. (what a smart man) He sent me home with an antibiotic because one of the blisters looks infected and he prescribed an anti-viral medicine. Apparently this stuff will take care of your shingles, chicken pox, cold sores, scurvy and herpes. Okay, I don’t know about your scurvy but I do like using that word whenever possible for comedic purposes. I can’t even say it or think it without growling like a pirate. Made you do it. At least I can rest assured that when I have to resort to turning tricks in the subway for extra income this med will keep the herpes at bay.

To finish me off he put me on happy pills. A good friend suggested this. Only a good friend can tell you when you should be medicated. Quite honestly, I don’t know how I have made it through the last fours years without some sort of mood altering drugs other than red wine. It’s only been a few days so the only thing I have noticed are some crazy dreams. Dude, my dreams are psychedelic. The first night I dreamed a snake slithered into our bedroom. I am blind without my glasses but all night I kept watch of my brown loafers by the door waiting for them to creep into my bed. Groovy, baby….groovy. I don’t expect to stay on happy pills forever but if it helps me through the next few months or so then it’s not the end of the world.

I can think of a few situations that may have gone differently had I been medicated….. With happy pills I vow to not do the following…again:

1. Turn Plaza Fiesta into the Hunger Games arena when innocent preschoolers ask questions about Katie.

2. Hiss at the post office worker while lunging over the counter when he refuses to give me a piece of tape for my envelope that doesn’t stick. What’s a little sleeper-hold between you and and the neighborhood government employee.

3. Drive through the parking lot of Cigna’s headquarters in a Monster truck yelling expletives into a bullhorn while doing wheelies over the employees’ cars. Oops

4. Become Jack Nicholson from A Few Good Men every time I walk into an IEP meeting with the school administrators…..YOU CAN’T HANDLE THE TRUTH!!!

Gosh, I am so classy and such a fine example to my children. I make my husband so proud. I am glad I still have my pride, dignity, and self control. Now take your happy pills, people and get $&&,/@ happy! Disclaimer: no children, insurance reps, postal employees, school administrators, or yoga moms were injured in the making of this entry.

Journal entry by Barbara Bradley — Mar 22, 2012

I am on a tear tonight, Enjoy.

Part One – This year blows…

2012 was supposed to be a better year. What the hell happened?!

Here I am driving along the border of Crazy Town. The windows on the old Odyssey are down, the air conditioner is out and I am low on fuel. The weather is humid. The air is stale. The vultures are circling. 

You are now passing through Crazy Town. My family lives here. My mother is having is at death’s door and my family is showing their true colors. I did my time there. Billy and I were the only ones to do any maintenance in Crazy Town but now that mom is sick the town is restless. Don’t swim in the water. The piranhas will eat you alive. Don’t ask for fuel or water. Even though you need it for yourself you will be asked to provide for the town. I don’t know your plan for doing so but you better figure it out. Pull your hair back and step on the gas.

If you look out your right window, you will see Debtville. You will find them intimidating at first but really they are just annoying people with accents that ask for money.  I advise you to just ignore them and keep driving. Why else do we have caller id? Smile and wave.

To the left, you will see Cigna Land – Land of the Bastards. This town is where the rich folk live. Don’t stop here. If you run out of gas or need water they will not agree that you need either.  But they will have a meeting about it if that makes you feel better. The water will not meet your deductible and the fuel is a definite exclusion from your health plan. Good luck with that but don’t lose hope; there are signs in Cigna Land directing you to the next town.

Ahead you will see Social Services. You can try to stop for gas or food here but you will first need to take a number. Then wait. Please be prepared to show your social security card, driver’s license, last 4 tax returns, check stubs and urine sample. Please take your seat and wait 90 days. Don’t call them – they will call you. Sorry, you have been denied. Sorry, but you didn’t say you needed gas. You only said you were close to empty. You really have to be clear. Please take another number and start again. But consider if you didn’t have any income and if you just had a few more children….maybe they can help.

For now, just turn the music up, reach under the seat for that stale but sticky granola bar in hiding, look in the rear view mirror at your beautiful children and step on the gas. Just keep driving before the devil knows you’re here.

Part Two – Freedom of Speech

The last I checked the right to freedom of speech applied to all Americans – even the disabled. I got the decision from the appeal I started with Cigna for her speech-generating device. They decided to uphold the original decision to deny the device only offering up a short paragraph quoting from our insurance plan that such items are excluded. Really? It took them a month telling me they needed to review all her information only to tell me that! I know what my handbook says and that was the reason for the initial denial. The purpose of an appeal is to have someone with a medical background review her history and medical necessity letters.

So much for having an advocate….She finally called me back and said she was sorry and hoped the decision would have been different but I have the right to a level two appeal. I am amazed I even remained calm. That is until she asked if Katie had any type of Medicaid. If you want me to jump on my soap box and push my buttons that is the best way to do it. I told her I wasn’t going to ask her to speak to the moral and ethical philosophy of Cigna but felt certain that is the very basis for denials like this one. They would like nothing more than for people like myself with children like Katie to get on Medicaid because certainly the government is entitled to pay for my daughter’s speech device when we have our own health insurance. They even periodically send me forms requesting if we have any other types of secondary coverage and request my signature. Why do they care? Why is it their business? They are supposed to cover what they are supposed to cover and it shouldn’t matter how the rest gets paid.

On that note, we are still going through the process of getting Katie on Cap/C which is a waiver for states to provide Medicaid to children like Katie to supplement insurance. I don’t know when or a definite if it will happen but most likely that is exactly who will be paying for her speech device – all the fine taxpayers reading my blog. Okay, now that we are all pissed off lets talk about more lighthearted topics.

Part Three – Leprechauns and Fairies

On the eve of St. Patty’s day, Nathan and I made a leprechaun trap out of a shoebox complete with a ladder, pot of gold, rainbow and trap door. I was pretty impressed with our handy work. That night Billy pulled some clovers from the yard and sprinkled them outside the box. Nathan was the first one up the next morning and Billy finds him rounding the corner to our room holding a tiny flashlight.

In a loud whisper, to not wake his sister and exclaims, “Daddy, we got one!”. We don’t know how long he had been up hovering over the box but you could tell he had thumped the box a bit to see if he could hear anything. He didn’t dare open the box because even though he wanted to see one he was freaked out about the prospect of actually catching one.

Yesterday Nathan finally lost his first tooth. This is a very big deal. After all, he was the only almost seven year old that hadn’t lost a tooth yet. All I have heard about since kindergarten is how everybody loses teeth but him while having me periodically try to wiggle his teeth for any sign one may be loose.

After lisping at me all afternoon yesterday, we delicately placed the tooth in a baggy and put it under his pillow for safekeeping. Thank goodness we actually remembered to put the dollar under his pillow. I can see how that could easily be over looked in the future.

First thing this morning I wake to him at my bedside with dollar in hand.

“Mommy, the fairy brought me a dollar!”

            “That’s great, honey, congratulations.”

“Mommy, what does she do with all the teeth? I think she plays with them. Well, she must wipe the blood off first.”

            “Not sure. I have never thought about it.”

“See my dollar? It has a pyramid and what’s that?…a shield? Yeah, think so. Remember when I helped Ms. Abbey feed the dogs? I think that’s where my five-dollar bill came from. When I put it in my piggy bank…well, actually it isn’t a pig it’s a horse so that would make it a horsey bank. When I put it in the horsey bank it got stuck. Know what? Daddy got those clamper things and pulled it out. But, mommy, not through the slot on the top. It had to come out his bottom (he whispered the word bottom)…. That poor horsey bank.” (He says while shaking his heard)

            “Poor horsey.”

“Ok, mommy, I have given you enough information. I need to eat breakfast.”

            “Do you want muffins or cereal?”

“Well, we still have muffins so I better eat them. We don’t want to hurt their feelings.”

            “Oh…..do the muffins have feelings?”

“Mommy?! Everything has feelings.”

            “What about the cereal’s feelings?”

“You’re right. You better eat cereal this morning.”

            “Ok, fine. As long as the cereal doesn’t mind if I have coffee.”

“I think coffee and cereal are friends so you’re okay.”

            “There is a God.”

Journal entry by Barbara Bradley — Dec 12, 2011

Are we feeling the Christmas spirit yet? You better be. My son informs me every day how many days are left until Christmas. I am a little behind….on everything. I haven’t even gotten an update out about Thanksgiving and the next Holiday is near. Since I am in complete denial of Christmas, let us all go back to Thanksgiving for a moment.

Thanks to Billy’s brother and his wife, the Bradley clan made their way to Cape Canaveral, FL the Thursday before Thanksgiving. Saturday morning we boarded the Disney Magic cruise ship and escaped to warmer weather.

I can tell you we about starved to death, and don’t get me started on the conditions of the ship.  Mickey mouse leads the children to the bottom level of the boat and makes them take turns paddling. The places they take you are just despicable. I really don’t know how we all survived.

Of course I am kidding.  The cruise lasted 7 days. We docked at St. Maartin, St. Thomas and Castaway Cay an island Disney owns. Is there anything Disney doesn’t own? I can honestly say I didn’t commit the islands to memory until a week before we left. I only did so because people kept asking where I was going. They could not comprehend how I didn’t know. To be honest, it did not matter to me. We honestly could have just floated in circles in the Atlantic for all I cared. All that mattered was to be far away from reality for even just a short time. It would no doubt be a complete 180 from how I spent last Thanksgiving.

In St. Maartin, we chose to forego the excursions and took a very bumpy taxi ride to a local beach. It was a perfect spot for a low-key morning on the beach. It wasn’t crowded so we had plenty of space to spread out and enjoy a little swimming and exploring the shoreline. The hardest part of the morning was steering clear of the topless locals. Even though this was supposed to be the lesser “French” of the other beaches a couple women still managed to lose their tops. One woman looked to be about my age. We saw her and her husband when they were leaving the beach. Thankfully the kids didn’t even notice. The other woman was well…like the old lady from the movie Something about Mary. If you haven’t seen it just imagine too-tan sagging, leather skin. I just got the shivers reliving the image. No worries about the men staring. Some screamed “My eyes!” and others just turned to stone.

St. Thomas was the next destination. Our excursion included a scenic tour of the island and a visit to Coral World. Think of a scaled down sea world with sea turtles, sea lions, birds and a large aquarium. We couldn’t have done this because the kids are too young but there was a tour that included scuba diving in the aquarium. Of course you can’t get off the island without taking a stroll through the market square and shops.

Castaway Cay was our last stop. It’s like a water park set in paradise. The kids swam and built sand castles. Billy and I did some snorkeling. At first I was disappointed. I loved the clear water but I wasn’t seeing anything. I wasn’t exactly hoping to go head to head with a great white but give me something. We noticed the heads of other snorklers further out so we followed. Now that was more like it. We saw lots of fish, a sunken boat and even a stingray sleeping along the bottom, which Billy disturbed so we could watch him swim away.

The other days were “days at sea”. Believe me when I say there is always something going on no matter your age. They have kids camp going on most of the day and into the night. We couldn’t keep the kids away. They played games, did crafts, played on the computer and even made flubber one night.

For the most part, the kids got along well.  Nathan is at the tattling age so we have been trying to teach him to work things out first before coming to us. The quote of the trip was born – Please don’t involve the adults unless you are bleeding, burning or barfing. Try it. It works brilliantly.

Every night you returned to a clean room with your bed turned down and towel-made animals perched on top. Under Disney chocolates was a schedule of the next day’s events. The theatres run popular movies for the kids throughout the day and the nightly performances were a must for everyone. The Disney characters are listed on the schedule showing where they will be and the times so you could meet your favorites and get pictures taken.

Many activities are geared towards children and families but the adults are not left out. You will find entertainment for adults only, a pool that is kid-free, a spa, and bars…lots of bars. You wouldn’t be hard-pressed to find a martini tasting or a bingo game.

In true American Thanksgiving fashion they played football games on the big screen over the pool complete with “tail-gate” food. Personally I was still patting my expanded waistline from brunch but the wings and grilled corn on the cob looked divine. I am not much of a football fan but don’t take pity. I made my way to a lounge chair over-looking the pool and read while Ramón brought me patron’. By the way, that’s what I get for using the line “I’ll have what she’s having”. What you get is patron. That is the most expensive drink I didn’t know I was ordering. I will say it was goooood. Thank YOU, Ramón, I WILL have a magical day.

Besides Katie, Nathan and my nieces know the characters aren’t real but it didn’t seem to take the magic away. And Katie, sweet Katie cannot control her emotions around Mickey and Minnie. We tried to get a few family pictures with them but Katie could care less that you are trying to capture the moment. If you can get her to at least stand still you are doing well but she will not take her eyes off Mickey. She’d grab his face, kiss his nose, and then run away squealing in circles and run back to him again. You finally just have to take the picture and move on.

We usually had the buffet for breakfast, ate something quick on the deck by the pool for lunch and then had dinner as a family in the dining room each night. It is really amazing how much food they have at any given time.  The dinners have appetizer and soup/salad course and then the main dish and of course dessert.  Every night the kids got Mickey bars for dessert. A Mickey bar is vanilla ice cream covered in chocolate and shaped like Mickey.

I am not outing anyone but I am certain I saw Papa eating at least one Mickey bar. This is the same man that ate an omelet as a prelude to our Thanksgiving Day brunch buffet. Only Papa can get away with calling an omelet an appetizer to an all-you-can-eat buffet. Bring on the stretchy pants. There were a few freaks I saw running laps on the top deck but the rest of us ate and drank ourselves to a happy, elastic waistband heaven.

We spent last Thanksgiving in the Duke Hospital room with Katie the day before her surgery.  Our meal consisted of eating lunch served in the elevator bank by a local church. This Thanksgiving was spent with family on a cruise ship in the middle of the ocean. Traditional turkey dinner was an option on the menu but I was torn between the turkey and the lobster. What is a girl to do? She orders both. Because she can. Even tough Billy informed me it was a little redneck to have lobster with my turkey I did it anyway. I even took a picture of my plate which I admit was probably is a lot redneck.

Just when you are really getting used to the fabulous life…..Seven days later it happens.  You get one last meal in the dining room and then they just throw you off the ship and send you home. Like an animal living a lifetime in captivity only to be thrown back into the wild to fend for itself, we were headed back home.

Back in Cape Canaveral we were told a rocket would launch at the space center in a couple hours. We were already planning to take two days to drive back anyway soooo off to our first and likely only rocket launch.

For three days we just sat at the kitchen table dressed in semi-formal attire waiting for someone to bring us food. I had to sleep on the couch the first night because I couldn’t remember how to turn down the bed. The kids just kept following me around insisting that no kid’s camp exists in the real world.  My key to world card that hung around my neck for the past week won’t buy a thing anymore. It’s cold outside. I can’t nap. There is no Mickey. There is impromptu martini tasting. There is no Ramón.  Sadly, there is no patron. Sigh….

Although my pedicure has begun to chip and real life is full of worries and responsibilities, we took lots of pictures and made lots of memories. More importantly, we also took home a happy little boy and a healthy little girl. November 26th marked Katie’s one-year post-op anniversary of seizure freedom. A lot can happen in a year.

Journal entry by Barbara Bradley — Oct 2, 2011

Our little bug is doing great these days. As each day passes we see more and more glimpses of normal. Her special Ed teacher tells me Katie is stacking blocks and she even pretended to rock a baby doll this week.

Katie’s personality continues to shine. She is a happy little girl with a great sense of humor and a wicked, stubborn streak. It is amazing how a child so verbally delayed can be a jokester but she is just that. She is back to hating the nightly tooth brushing routine. I thought we had moved on from this but I am in control of very little these days.

I carry her into the bathroom to sit her on the counter so I can put toothpaste on her toothbrush. She waits to see if I put the brush down before picking her back up, and just before I can grab it she knocks it on the floor completely loaded with Crest and starts giggling. Then she waits for me to turn the faucet on so she can splash in the water. She leans herself back and starts waving her hand back and forth while I try to wet the brush.

The fun ends abruptly once I start brushing her teeth. We started using a vibrating brush to help with her sensory issues. I can hold her down to brush but I can’t keep her from biting it. She bites down just enough to stop the spinning bristles then looks up at me and laughs while still clutching the toothbrush head. We repeat this about ten times until I give up. Maybe tomorrow is the day for cleaner teeth.

It’s story time. The preferred books are Runaway Bunny and Chicka Chicka Boom Boom. Just in the past couple nights Katie waits until I start reading then she rolls over and starts trying to tickle me. It is the cutest thing in the world. She tickles me but she is the one laughing a deep belly giggle. Her laughter is infectious and the more she laughs, I laugh. I don’t even think we finished reading tonight.

After story time we sing, “You are my Sunshine” followed by prayers. I started this with Nathan and the tradition continues. The second I start “Now I lay me down to sleep…”, my little angel uses her left hand to clutch “righty” and makes tiny little prayer hands.

Pure joy. She is pure joy.

Journal entry by Barbara Bradley — Aug 17, 2011

I am going to admit what many of you are thinking but are too afraid to share: It is time for the children to go back to school.

Oh, trust me when I say it is time. The kids have been out since June 10th and my dear son Nathan has not stopped talking yet. If he isn’t talking, he is singing. If he isn’t singing, he is humming. Aren’t boys supposed to be the quiet ones?

I have been a good mother. We have been to the library, gone on nature walks, and read books. I have taken them swimming many times and answered non-stop questions. I think I have managed fairly well to find things to do but I am all tapped out. Done.

I must admit I have had thoughts of dropping the kids off at the neighbors down the street and I have a plan for doing so.

Let’s just say there is a family nearby with nine children. Yes, I do know there are nine because of all the little stick figure decals on the family van (big van). Those decals are a pet peeve by the way. We have all seen these. On your back window you place a decal for each member of your family. Jimmy plays football, Johnny plays soccer, Jenna swims, Jeremy eats pizza, and Joann loves shopping…. Blah blah..and there are dog, cat, bird and I have even seen a turtle decal. You got it, you can buy it. You can tell complete strangers all your business.

When all the kids are outside playing I will make my move. I do a drive by slowing my van to a crawl, push the kids out (gently of course) and drive away without even coming to a stop. With all nine children out playing I don’t think anyone will mind a couple more. Would they really notice? eh? I imagine Mom is inside birthing her tenth child under strict supervision of a midwife while baking scratch-made biscuits, and cleaning up from an invigorating morning of homeschooling.

Don’t work yourself up into a lather. It would just be for a few hours while I do some housework or grocery shopping. Who are we kidding….I would take a quiet moment reading Us Weekly and taking a nap. Ahhhh….

Okay, I can’t bother this sweet mother of nine. Lord knows she has enough to do. I can say with certainty she is a far stronger mother than I could ever be as I struggle to care for my two. If I had that many children, you would find me out by the mailbox huddled in the fetal position around a bottle of vodka mumbling to myself.

Before you send me hate mail, I have the utmost respect for woman like this. They really have it all together. They manage an army and do it well and very efficiently. Just look at that Duggar family from Arkansas. What are they up to now like 47 kids or something?! Anytime you see them all the kids play so well together and are so responsible and respectful. I really don’t know how they do it.

Back to my adorable two…. Dropping them off is not an option so…

Thank goodness for plan B…. camp and vacation bible school!

Yippee! We love Grandma. Grandma paid for Nathan to attend a camp at the aquatic center where the kids took swim lessons. A couple weeks ago he also attended a five-day VBS at a local church down the road. Many of his friends from school and people we know were there so he was in good company. I still carted Katie around to therapy and ran errands but it was a few hours of quiet each day.

Nathan is not the only one wearing on my nerves. My lovely daughter has gotten back in the habit of taking her diaper off. She used to do this prior to surgery but I guess she remembered just how much fun it can be and how crazy she can make mommy. Katie has always drunk more than she eats so this has only been magnified with her increased appetite.  Even if she doesn’t take her diaper off she has been wetting the bed lately. I have tried buying the next size up in diapers and placing a waterproof pad under where she sleeps just to keep from having to change her sheets every day but this has not stopped her. The wiggle worm still manages to move out of the zone. So last week when I heard her at 3am, I decided to go ahead and change her diaper while we were both up. Surely an early morning diaper change would do the trick, right?

Nope. Because her jammy bottoms were wet I didn’t bother to put them back on after changing her. She got the bright idea to take her diaper off right then and peed from 3 am until around 7 am the next morning.

One would think that incident alone would have driven the point home for me to cover her diaper but I have been dying my hair far too long and there are very few reputable brain cells left behind.

The next night I put her in a nightgown. Come midnight I heard a stir from the peeing Princess’ room so again I went to the trouble of changing her diaper. I went back to sleep completely confident all would be well.

Nope.  Around 7am I hear both kids in the living room and look to see Nathan playing with toys and Katie sitting in her favorite beanbag chair happily watching her big brother. I passed right by her and headed to her room to get a clean diaper only to find a completely dry diaper in her bed and pee everywhere. I mean EVERYWHERE. I run back out to her sitting in the beanbag and pick her up. She is still in her nightgown but commando sitting in another puddle of pee. She must have gotten her diaper off at midnight after I changed her and peed the whole night long all over her bed and floor. She then got up the next morning and continued the fun in our living room.

Stopping right there would be enough of a story to remember in years to come but it doesn’t stop there. I get her and the puddles cleaned up and get breakfast for both kids. Before sitting down to breakfast, I open the back door to let the dogs back in the house. I see out of the corner of my eye that our dog Zoe had brought in a bird from the backyard and laid it right in front of the highchair. I can and have handled a lot but pee all over my house and then bring an injured, dying bird to me and I am throwing in the towel.

Officially on strike! Mommy has left the building. It’s been great knowing you. My passport is good until the end of the month. There is a beach and a Corona with my name on it. Peace out.

Back to reality. I have a six year old boy in awe of what is happening and wants to know what Mommy will do next, a three year old daughter that could care less as long as Mickey Mouse is on, two dogs that I want to kill and no one else home. I can’t leave this dying bird in my house.

Let’s start by saying dead or alive, pet or in nature, I do not like birds. I think they are disgusting and all carry a hideous, life threatening disease. The only possible way to manage this was to start with a plastic bag. I would also need something to help grab the bird because the thought of my hands holding the bird even using the bag was not gonna happen. I grabbed a duster and a clothes hanger but every time I tried to pick it up the bird would fall out from under the plastic bag. This action would then cause me to squeal like the cowardly wuss that I was. Since this was taking place right in front of Katie’s highchair she got a front row seat to this I Love Lucy episode. Every time the bird dropped, I would scream and Katie would fall over into hysterical laughter.

It took several attempts but I eventually managed to get the bird outside. If it wasn’t dead coming in the house, it was certainly dead leaving the house.

So again, I beg you….save me from these non-stop chattering, peeing children…please. Momma needs a quiet morning at the gym followed by a little Panera Bread for lunch. Is this so much to ask? Heeeellllllppp meeeeeeee……. 

Just so you know if I had to have decals on my van, I would have a boy wearing a shirt that read “Chatterbox”, a little girl wearing Mickey Mouse ears holding her diaper while peeing, two dogs and a dead bird.