When I was 8 years old, I fell at recess at school and broke my arm in to pieces. It was pretty serious and I spent a good deal of time in surgery and in the hospital. Non hung out with me during the days (and she used to yell at the mean nurses AND eat my lunch for me—she really rocked!). My entire family felt really bad for my sorry self, so they offered me anything I wanted in the whole world.
I yearned. I coveted. I daydreamed of only one thing. One magical thing that would make hours of physical therapy and three surgeries, plus days in traction and a few steel pins, better.
I needed a Cabbage Patch Kid.
BUT, it was the beginning of the Cabbage Patch craze, so there were none to be found anywhere.Trust me, word went out across the entirety of Pennsylvania and most of Ohio, as well as New Jersey, that a Cabbage Patch Kid was needed in order to cure my deep pains. Upon the realization that every Cabbage Patch on the East Coast was sold and waiting in parents’ back closets for Christmas (it was October), my Aunt Judy, Queen of Awesome, agreed to find me one. Rumor has it she got it from the Black Market Cabbage Patch in upstate New York. I’m almost not kidding.
Babyland General Hospital is where all Cabbage Patch Kids are born (Actually, that’s a big, fat lie..because Jack’s CPK has the words “Made in China” emblazoned on the back of his head). Babyland General Hospital also happened to be really close to where we ran away to last week.
Coincidence, I think not.
As any good child of the 80′s, I was completely giddy about this adventure. Friends were texting me so they could live vicariously through my Cabbage bound self.
We drove 5 hours and 18 minutes to the exact spot where Babyland General was…only it wasn’t there. We couldn’t find it. It was missing.
My heart broke.
Then we realized that they actually built a new and improved–modernized—Babyland General Hospital 3 miles up the road, and life was better.
This place is palatial. Not even kidding. It’s part plantation, part castle. Unreal, for real!
You enter the front doors (while angels sing) and are greeted by 2 lovely older ladies, wearing retro nursing scrubs, complete with white hat. Upon signing in, you are ushered to a giant, plush Cabbage, where they will take your family photo. J pitched a fit and refused to sit on the Cabbage until I cried about how this was a childhood dream coming true, and “Hello? I took you to a giant HIPPO conference and never batted an eye!”
I now have a lovely photo of her sitting with me and Jack in a giant, plush Cabbage.
Post Cabbage photo, there are glass cases of original Cabbage Patch Kids that are for sale, for the mere price of $15,000. (Um, Timothy Herman, where are you?) From there, you wander through the nursery until you reach a big atrium.
It’s Cabbage Patch Mecca. There are literally hundreds of heads popping out of Cabbages to choose from. These Cabbages are all around a humongous tree. And they move. So, you’re watching a bunch of Cabbage’s with heads of dolls…moving back and forth.
This was when I started thinking maybe this was a bit strange.
Just as I am telling S that I think we should just grab Jack a baby from a Cabbage and run, the loudspeaker says, “Dr. Blake, Mother Cabbage is 10 leaves dilated. Return to the tree STAT!”
No…NO! They were NOT going to birth a baby from a Cabbage in front of me.
(oh yes they were.)
Dr. Blake explained all that he was going to do to the Cabbage in graphic detail. Such graphic detail that I was borderline uncomfortable. He even shot a laser down the Cabbage’s vajay-jay and the tree turned BLUE…indicating that Mother Cabbage was birthing a boy. However, Granny in the front row, paid $200 for that baby fresh outta Momma Cab, so it miraculously changed genders before emerging.
It’s so surreal, we took video for you viewing pleasure (And because I know you secretly want to go to Cabbage Patch Land too…).
(Also, can I just say—all my intentions of teaching Jack about adoption went out the window when I reached the Land of Mother Cabbage…Non was right–some things are too priceless to ruin with too many words!)
We ran away for a few days.
(Dear Orlando Friends and Family. No, we did not see you. Yes, we love you. However, sometimes we just need to hide from the world and pretend we’re normal. OK?)
We took the kids to Disney on a whim. Literally, on a whim. As in—”hey, what do you want to do this weekend? Let’s pack the kids up and go!”
There are good things and bad things about having a kid with a disability at Disney World.
BAD: noises, rides, sounds, smells, fuzzy characters, characters with lipstick who might kiss you, fireworks, rain, sun, wind, darkness, bugs, air conditioning (get the picture?)Oh, and let us not forget the rude people who rent wheelchairs and scooters just to get to the front of the lines. Yes. Really.
(Oh, and YES, I did make a snarky comment. I mean, after all, it’s much more fun to “play” that you have a disability than actually living with one…)
GOOD: *losing a favorite toy, only to have it found and shipped back to you.
*the kindness of staff when recognizing your kid is “different”
*walking away from an amazing experience, only to have the manager of said experience run after you. She then tells you to come back at a specific time for a surprise for your child. Upon your return, your child is taken back stage to meet, greet, and be given surprises from several cast members. (Mom does the ugly cry in front of everyone!)
*hearing a tiny voice say “Best day evah!”
We also drove to Tampa to see my father in law who is visiting from Chile. It was a delightful time full of giggles and stories…and so nice to see Sebi with his dad and sister. It’s not often that we get to really be a complete family like that.
So anyway, we are back.
Not refreshed completely, but renewed.
We know much more. We love much deeper.
And that, my friends, is the key to it all.
We have returned from our adventure in the great outdoors.
Literally, there was no phone service.
The directions read like this : turn left at McDonald’s, go 5 miles. Turn left at the furniture store. At second right, follow the road to the T. At the T, go left and stay on the left side of the fork in the road. At the Taxidermist, turn left and follow the dirt road 2 miles. Cabin on right.
Yep (cue banjo music).
There was also lots of this:“She touched me!” “She doesn’t like me!” “I don’t wanna…” “STOP!” “Do NOT hang over the porch railing!” “Wash your hands!” “Uh-huh” “Nuh-uh” “(insert copious amounts of tears here)” “It’s a walking stick, not a lightsaber!” “Wear bug spray!” “Go ahead…” “You want to do WHAT?” “Be nice to the little ones!”
We also managed to fit in some horseback riding, (the boys went) whitewater rafting, fishing, shopping, and just relaxing.
However, there was more to it than just that.
I learned something really important.
Jack is almost 4. He wanted to do what the other kids were doing. Sometimes that was OK, and other times it just wasn’t possible.
He only asked for one thing the whole time we were there (well, besides the diggers and a bunny).
He said he wanted to “Cwime Moufain” (climb mountain).
We went to Carter’s Lake dam, and he wanted to climb the rocks. So, we climbed the rocks. Granted, it was spur of the moment and I was wearing flip flops, but we managed!
We went to the highest waterfall east of the Mississippi river…and he got to “hike” in the woods.
I looked a lot at the rocks in the stream behind our cabin. Over time, water washes over them creating different shapes and sizes. Some get beautiful and smooth while others get sharp and jagged, ready to slice through an unsuspecting foot wading through.
That’s sort of how I perceive Jack’s life. It’s going to be difficult. He is going to be treated harshly by some, gently by others. The water is going to run over his soul, and he (and possibly I) will run the risk of becoming jagged and jaded. Jealousy could haunt the darkest corners of his heart. And if it did, I would always wonder, “What if I had taken him to do the things that he thought he couldn’t do?”
I will do whatever it takes to protect my children…to guarantee that their hearts stay open, accepting, and kind. Until he is too big for me to handle, I will strap him on my back and show him the world that he yearns to see!
In the special needs world, they sometimes use the word “perseverance” to talk about obsessive behaviors. Webster defines the same word as “persistent determination.” I love the word. 2 completely different connotations depending on how you look at the coin. So much like the life we lead…the choices we make… the paths we follow.
I don’t do change well.
I’m sure that’s shocking to you.
There’s a lot of upheaval in P-land right now. Some good, some mediocre.
There’s this whole puberty thing going on. Most of the time, I don’t know whether to hug her or send her to her room. She’s slowly making me keenly aware of what she needs and what she doesn’t need. She needs her mom to hug her on her own terms, not arbitrarily. She needs me to help with her hair, but not tell her it looks like a rats nest. She needs me to help her pick out clothes, but not on any day that starts with T or S.
We went to the bookstore last week. I know this sounds kind of not very important, but it really is. Bear with me.
J was perusing the aisles in search of the fattest book she could find (which ended up being Gone with the Wind, but we didn’t actually end up with that one…there are some things I am not prepared to explain this week!). While she was looking, Jack was hanging out, flirting with the sales lady from his perch in his “magic wheels!” He was getting a bit cranky, so I started pretending we were an out of control bulldozer going up and down the main aisle.
A mom stopped me. She told me she didn’t think it was nice of me to behave like that with my “poor, helpless child.”
First of all, he’s not poor or helpless.
Secondly, back off heifer.
Thirdly, why is it that my kid can’t have fun?
I guess if you are in a wheelchair, or if you wear orthotics, or if you have a trach, or if you use a walker/cane….you are hereby sentenced to a life of no fun?
So, when I picked my jaw up off the ground, and dusted it off…I may or may not have said something to the effect of…”I’ll get you my pretty, and your little dog too….”
Back to change.
I’ve been a nurse for awhile. I’ve worked in one place. I’ve made fantastic friends. I have watched lives get saved, and escorted lives to their eternal throne.
So, I quit.
Yep, I’m no longer a floor nurse. I left the hospital.
Starting in a few weeks I’m adjunct faculty—changing the lives of students who want to be CNAs, nurses, and the like. Truth be told, I’m half giddy, half terrified.
The part of me that is giddy is the part that has already color coded and organized my entire semester into a 5″ ring binder.
The part of me that is terrified is the part that thinks one of my students might shank me if I’m not nice.
That’s all the goings on here. Now, if you’ll excuse me…it’s summer! I have bubbles to blow, watermelon to eat, and a vacation to leave on!
I promised, so here it is!
Let me start with a conversation Melissa and I had a month ago. It went something like this:
H: “I miss you.”
M: “I miss you too…sigh”
H: “I want to move home and live next door to you.”
M: “Me too…sigh…”
Clearly, I’m a little homesick lately (ok who are we kidding. I want to move back in a HUGE kind of way, and I have a hard time accepting that this may not happen.).
So, we decided to ease both of our pain, we would meet in Jacksonville for a weekend. It’s halfway for both of us. We booked the hotel, and planned for 3 weeks!
We counted down minutes. Seriously. The entire trip there we were text messaging about where we were and how long it would take us….also what we were eating, drinking, and where we stopped to have a potty break! It was hilarious!
We arrived to the hotel first, and much to our complete joy, they gave us a 2 bedroom suite (it’s glorious to be married to the hotel guy!)!!! That meant we could co-habitate on top of it all! Once they arrived, we squealed and hugged for awhile. You know, girl stuff. The hotel was in the middle of this shopping center. And I’m not talking strip mall. I’m talking like 500 shops and restaurants! For the first time in my life I got to walk in to a Sephora! (more about that in a sec)
So, we packed up our children and headed out to see the sights.
We stopped for a snack, first. That didn’t last long because Jack got a little fussy.
Then, we went to Sephora. We soaked in every corner. Every smell. Every glorious sample. And because Melissa was being sad, I even took one for the team and splattered bright purple eyeshadow on myself. That’s love. The boys went in search of a cookie for my little screaming boy, and then to check out the cooking stuff. We wandered like this forever and then realized we had to actually eat dinner.
We stop at this place called Maggiano’s. Family Style Italian. Supposed to be the best o’ the best. We wait forever for a table. We finally sit down. Janson is like ready to chew off her own arm. We order our dinner. They bring it in stages. Appetizers, salads, main course, dessert…all family style. So as our main course comes, I ask if Janson’s food is coming too…”Oh yes, it’s coming…” but I was wondering if they just forgot it. So, we kept asking, and Janson kept waiting. She didn’t get her dinner until we had ordered dessert. And, they didn’t have lemon cookies for her for dessert…AND, they still charged us for her. I was mad. Still am. The manager sent me an email offering us to come have a lemon cookie on them! Wasn’t that generous!?
The next day we went to the zoo. It was fun. No hippos. That was sad. But it was OK. It was a beautiful day. The girls were great, Jack slept a lot. We discovered that they allow you to feed the giraffes. So we get in line for tickets to feed. Then we line up to wait to feed. Well, Mel and Pat somehow got a few people in front of us. I was going to be camera-woman extraordinaire. They get up to feed the giraffe, and it turns around, walks away, and lays down! It was so sad! Luckily, they gave us tickets to come back later. When we did, they all got to feed the giraffes! I think that was the highlight of every one’s day! (Except for me and Mel. We discovered that the children’s play area contains 2 large elephant things to climb on—and they are completely anatomically correct. I can’t kid on this.) That night we ate in the hotel so we could go for ice cream at my new favorite place, YogaBerry.
Sunday, we had to bid each other farewell. It was sad. But Perapalapalooza 2.0 is on the books for my birthday!!! I love having things to look forward to!
What a week we’ve had! My foot—is fine. Sort of. It will be fine. In 6-8 weeks while wearing sneakers. Anyway, Monday I took Jack to therapy. I was barely to my car and Jenny called to have me come back. Jack was having serious tremors and couldn’t stand still. I have seen this a lot over the past few weeks, but the past few days are the worst ever. He’s having trouble holding things, he can’t sip from a straw anymore, and his gait is much like a Weeble Wobble. So, I called Dr. P(the neurologist)…THEN, we had an appointment (still Monday) with the Lung doctor. She says his lungs are shot. As if that was a surprise! So we have to keep in on the oral medicine and the nebulizer medicine daily….like forever. She is also having him do another swallow study next week. She feels that Jack is still having major reflux issues. So, we’ll get to the bottom of that once and for all. Jack will love it—another chance to eat barium!!! OH, I forgot—while she was looking at him, she told me she thought he had strep throat. She took his temp and he was running a fever, so…We THEN drove (yep, still Monday) to the far other end of the universe and saw the pediatrician. Mr. Jackpot was NOT happy. He was less happy after the strep test! We came home with plenty of prescriptions!Tuesday, Jack got fitted for his new braces (yeah, the respite from braces is over. I was sad too). He was not really happy about that either. He kicked a lot—Jack was on my lap, and Mr. J had Jack’s foot in his hands. So, if Jack decided to kick REALLY hard—yes, that’s where Jack kicked–I am really sorry Mr. J. So yesterday, we saw Dr P. Let’s start with the EEG. It did not show any real seizure activity. However, the EEG is only between 80-90% accurate. He witnessed Jack’s tremulous self. He scratched his head. I cried. He said that this is not a medication issue (especially being that Jack is the Super-Metabolizer). He used the word “enigma.” He wants to rule out everything before we just throw up our hands and say “this is just Jack.” This tremor thing is really bad. He’s having a lot of trouble with it. It makes me really sad to think that this could be Jack’s “normal.” So, we’re having a CT scan—hoping for? I don’t know. I don’t know what to hope for anymore. Do I hope there’s fluid in his head? Do I hope there’s a cyst? Do I hope that there’s some other disease process going on? Do I wish that none of this was happening? Do I want to run away with him and hide? Anyway, no matter what I wish, his CT is on May 6. And, if the CT shows nothing, then we tweak meds and hope we can control Jack’s lack of control. However, we are planning a weekend of fun and sun! We are meeting Mel, Pat, and Kristina in Jacksonville for Perapalapalooza! HA! Anyway, we’re taking the kids to the zoo. I’m excited. I’m really excited to see them and talk and just be together. Pictures following—as if there were any question about that! Please just keep us in prayer. We could use some lifting up from time to time. It seems like there’s never good news. Or if there is good news it’s peppered with “but, ….”
has officially ended. It was a good time…mostly. We’ll go day by day…Saturday (1/10) we spent the day with my parents. We had breakfast with them and then went to the Magic Kingdom. Janson rode Big Thunder Mountain, then made the discovery that she really DOES like roller coasters. We were thrilled with Guest Relations…they took our letter of medical needs and gave us a pass that let us use Jack’s stroller as a wheelchair! Oh my gosh, that was so nice..we didn’t have to get him in and out all day long. It made it way more bearable for him as well. He got a Wall-E toy that day and carried it around all week…and still (he announced that Wall-E has a No-No just like him! We thought that was hilarious…since Wall-E’s belly opens, I guess Jack figures Wall-E is just like him!). Janson discovered the joys of pressed pennies (and we are out $43 because of it!). Sunday (1/11) we were at Hollywood Studios. Mostly, we were at the Star Wars area. Janson got picked to go to Jedi Training Academy. She got to go on stage and fight Darth. You never ever saw a kid so happy in your whole life! I thought she was going to cry—she told us later that she didn’t want to fight him, she wanted to hug him! Monday (1/12) was our 11th anniversary! We got up that morning and Janson and I went horseback riding. We had a lot of fun just hanging out together. The rest of the day we spent at EPCOT. They rode rides and Jack and I watched people…Tuesday (1/13) we went to the Animal Kingdom…Hello Geraldine! We met up with CJ and Mike–who are Janson’s favorite hippo people (and some of our favorite people, period!!!). Unfortunately, it rained, so we called it a day early. Wednesday (1/14) we were back at EPCOT. We really were quiet that day. Just looked around a lot, rode very few rides, and just really enjoyed our time together. It was a good day! Thursday (1/15) we were at Magic Kingdom again. That was the day of Big Thunder–Janson and I rode it 6 times. We’d fast pass, get on, get off, wait, get on….she loved it! Friday (1/16) we finished out our week with Animal Kingdom again–and we got to see Geraldine! Unfortunately, this was the day that was–of course–the disaster day. You know nothing “normal” can happen to us…Janson and I had gotten on Expedition Everest (this huge roller coaster). We were seated, in the next to last row, and the people said there were technical difficulties. SO we waited about 15 minutes or so and the ride started. We went up the big, giant, steep hill, went around a bend, up another hill, and then you go backwards through the dark, to the pinnacle of the mountain—which is where we got stuck. In the dark. In the cold. In the next to last row. Backwards. Janson cried. I was trying to not be upset for her. We waited and waited and waited, and finally they sent people to rescue us. With our feet on land, we had to then walk 17 flights of stairs down to the ground, where they handed us passes to get on the ride again….whenever they fixed it. We bought t-shirts that say “Mountain Rescue” on them…and we did ride again…it just took me all day to calm Janson down. All in all, it was a good week. Jack had moments. I know there is no way we can ever fly with him…he has far too much equipment! There were noises, lights, and things of the sort that he didn’t like at all. He made his opinions known. And you know, there are rude people everywhere. I almost had it out with a lady one night. She was allowing her toddler to play on the handicap ramp to a restaurant. She was sitting at the one end, and her husband was at the top–with the baby running between them. I said, “excuse me” to go up the ramp and she said, “You can’t take strollers in this restaurant!” So I very calmly said, “yes I can,” and showed her my special magic pass. In reality, I wanted to hit her. I wanted to ask her how much fun she was having with her kid—and if she had to plan every single moment of her day around her kid’s medication schedule. I definitely think that there are things Disney could do to make it more accessible, but that’s for another day. In other, non-vacation news…we are finally getting the bed! After all the drama, hospital grade vs. home care bed…we’re getting a crib for him–supposedly this week! It looks a lot like the Big Red Prison Crib, only it’s blue. It has an IV pole for the pump and the head goes up—I’m so excited. I think this will really make his life a little easier. We’re mildly concerned about how they will get it up the stairs to our bedroom, but we decided that if it won’t fit, we’ll move the dining table to our bedroom and sleep downstairs (just kidding..we have no idea what we will do. We might have to switch rooms with Janson…this week could be really fun.). Bups took Janson to the grocery and Jack is asleep on the couch…all is well with the world. I will post pictures later…they’re home and I’m back on Mom duty!
Highlights:Tuesday: Case Manager hits homerun with the “yes” to the hospital crib. Wednesday: Bups gets list of names from insurance to call…and we start calling (it seems as if NO ONE EVER needed a hospital crib in Savannah, EVER.)Thursday: Insurance contracts another company to do their leg work. The girl there calls me at 4:30 in the afternoon to tell me, “Well, we can’t find a bed for him, and the only thing I can find is hospital grade.” Um, ‘scuse me, isn’t that what we’re SUPPOSED to get? So I called the case manager back and left her the name and number to this chicky poo. I really just wanted to go on vacation. I didn’t want to have to worry about all this. I mean, seriously, can you see it now….phone rings….”Hello? Hello? OH, can you hold on just a sec…I’m in the Haunted Mansion and I can’t see my notes!”
I’m procrastinating. We are leaving in 2 days to go on vacation for the first time ever. I mean, we’ve gone off with my family and stuff—and there was that horrific week we spent in North Carolina when we all got the stomach bug. But they don’t count. This will be our first vacation as OUR family. So, I should, in theory, be packing. However, I am sitting here typing, because—who knows why!!!!I’m nervous. I have a list. I want life to be perfect. I want the vacation that everyone dreams of. I want sunny skies, a lazy breeze, and pictures of the kids with Mickey Mouse! Of course, I also want to leave with my house in perfect order. Because, God forbid it would be robbed, I would want that robber to think–”this is the nicest house I’ve ever robbed.” So rather than packing, I’ve taken to washing windows. And the baseboards. And the windowsills. Plus, my list is hilarious. I mean, seriously…Diapers (in 2 sizes one for day/one for night)Depends (because that’s what he wears inside the bigger diapers at night)MumMums (the cracker of choice!)Saltines (the OTHER cracker of choice)Water (because I am sure there is no water in Florida)Pedialyte (to color the water that they don’t have in Florida)Pack:clothestoiletries (for me that means pack everything I can get my hands on—just in case!)Nebulizer/suppliesMedications (I seriously look like I have my own pharmacy!)IV poleFeeding PumpFeeding bagsPediaSurecar seat (he still has to sleep in it until we can get that bed!)quarters (because I will, no doubt, have to wash some one’s car seat because he will leak)See, I have a good handle on what’s going on! I just don’t want to start the piles yet. Because, it’s kind of clean, and then it will be a mess. What is wrong with me?! So the insurance approved for us to have a bed for Jack. However, the first company we called doesn’t carry beds. The second one said they carry beds, but we’d have to order from this company called InvaCare (yes, nice name right? Nothing like making me feel BETTER about this!). Well, InvaCare doesn’t carry pediatric cribs. Alissa came to walk with me last night (I am still working on my running plan, aren’t you impressed. I’ve run 2 days, walked one!). I told her all this, so we came home and looked everything up. She called MoMo and asked the operator what beds they carried there. Well, I started laughing, and she did too…we were sure they were going to hang up on us as if we were prank calling! Long story short, we still don’t know where to get a bed or what kind. I guess I’ll go pack….I really am excited. Really!