J-Bear and Me

learning to navigate the world, j-bear style

Month: July 2013 (page 1 of 3)

Me and 2013 Aren’t Talking

In fact, I might just outright shun this year at the rate it’s going.

Last night, as he’s prone to doing, J jumped on the bed. Well, more accurately he flung himself down on his back with as much physical force as he can muster onto the bed. A bed, mind you, that has a pillow top and is covered with soft and squishy blankets and stuffed animals. The only hard spots on this bed are the headboard and wall behind said headboard and he was nowhere near them.

Yet he broke his elbow.

Did you know people do this? That children do this regularly? Cause I didn’t. In the ER the term nursemaid’s elbow was bandied about and that’s what I figured it was after a quick consultation with Dr. Google. Lo, never could it have been so simple! He has a supracondylar fracture. It was hazy to see on the x-ray but yep, it’s there. The swelling on his arm is tell-tale.

This child is one who rarely shows signs of being in pain. I have heard him scream like he did last night exactly once and that was when an inept phlebotomist dug in his arm pretty harshly to find a vein for blood work. Usually needle sticks only briefly phase him and standard little kid crash and bang type stuff is quickly forgotten if it is noticed at all. He showed pain after surgery, obviously, and boy has he shown feeling pain with this elbow thing.

What kills me the most is that it was his little body’s desperate need for deep input that brought on this whole mess. I feel like a failure for not being able to quite meet that need right now because hey, I’ve been spitting out broken organs too. This is something his service dog will so very much help with because J won’t have to jump. His dog can lay across his body. His dog can run and play outside with him. His dog can lay his head on J’s lap… His dog can be the extra arms and the extra love and attention this special little boy so dearly needs.

On the uptick he chose to have a purple cast from all the colors he was shown. It is an active cast, so he can get it wet without worry. I did not know such technology existed but am I ever grateful for it! He can bathe and just be himself without worry of the condition of the cast. He’s not going to be hammering in nails with it or anything but it’s nice to know he can enjoy normal, beloved activities during the rest of his short summer.

Now, at this point, mama bear is going to go reconsider her long-held abstinence from alcoholic beverages for a little while.

Halfway There!

On April 5 we were blessed to find out that we were accepted to begin our fundraising journey with 4 Paws for Ability in order to help J receive an autism service dog trained especially for his unique needs. This was a period of constant medical struggling along with bickering with the schools… I cried a lot more than I smiled, that’s for sure, and Karen’s phone call to talk about Jacob and let us know we were in the program was a bright spot of light in a very dark night.

Today, nearly 4 months into our fundraising journey, we are halfway there. We are just a shade over 50% of the way to our $13,000 goal.

It’s very hard to put into words the gratitude I feel. People – family, friends, friends of friends, strangers – have stepped up where I least expected them to and lent a hand to our cause. None of these people, not even family, had any obligation to do so yet they did. They showed love and kindness through either sharing our story or donating or sharing ideas to help fundraise with me…

I never know what to do with kindness. I know to give it but receiving it? Other people are always the ones to receive kindness. Good things happen to everyone else. I was raised to feel forever undeserving so this whole experience is inexplicably hard but definitely good for learning. It’s all for my son, which makes it that little bit easier, because he after all deserves the world in my eyes.

I’m rambling.

Thank you. Thank you to everyone who has donated, who has shared our story and who continues to share our story and participate in fundraisers. I still have lots of thank you cards to write and will get back into that as my incisions all someday heal.

The Best Boy

Today’s been a thing. I had surgery 10 days ago and had issues ever since. I went back to the surgeon today for the latest look at what’s going on with the holes in my abdomen and this time, J-bear had to come with me.

Now, we all know he’s no stranger to doctor’s offices. He has his own battalion of medical professionals. He’s never actually been into a doctor’s office with me as the patient though, despite seeing me in the ER and hospital, so I was nervous about how this would turn out.

Sometimes I wonder why I worry. He did perfectly great.

The nurse practitioner, who is a very delightful woman, spoke directly to him and was very sweet with him. While she worked on my incisions, J did get a little nervous. Bandages and the like make him very wary and uncomfortable. He did not like seeing the steri strips and such, so he stayed back. The nurse practitioner kept things very light and made everything so matter of fact that J never went into his avoidant behaviors. At home, J would have steered clear of me after seeing all of that. Today in the office, he just kind of inspected, shrugged it off and carried on with his day.

He went out on errands with me afterwards and apart from a brief little meltdown when he didn’t understand where we were going he did wonderfully. He helped me pick up much needed staples for the apartment and even earned himself one of his favorite snacks. Well, close to. Both Dunkin’ Donuts did not have munchkins (I know!!!) so he had a chocolate donut instead, which is apparently a most acceptable substitution in his majesty’s estimations.

Now, strangers witnessing today might have thought he was a terror at points because he does vocalize loudly. Not angry and screaming sounds, just a lot of loud words in his own language. These things don’t entirely phase me, though I do remind him to be quiet, as I am grateful he vocalizes at all. He even spoke independently to the nurse practitioner, saying bye-bye with a stiff little wave.

Yeah he really was the best boy today.

Current Fundraisers

Oh look, she’s talking fundraising again!

Why yes, yes I am.

These are the current available fundraisers you just know you want to take part in:

Mabel’s Labels: It’s Back to School time and Team Jacobly has teamed up with the gracious folks at Mabel’s Labels to fundraise! 20% of all sales made through the link will benefit Team Jacobly for 4 Paws for Ability. These labels are bright, beautiful, durable, well made and a very fun way to help all of your child’s back to school items stay OUT of the lost and found.

Check out Schnoodleware Dog Toys: Follow the link to the campaign our friends at Schnoodleware Dog Toys are running to raise money for Team Jacobly! Use the code in the link and get 10% off your purchase while 10% also goes to our fundraising efforts. These are wonderful toys and accessories for the dogs in your life.

You can also check out our Team Jacobly for 4 Paws for Ability page at any time and get the details on how to donate directly to 4 Paws for Ability in Jacob’s name either by mail, Paypal or our FirstGiving page.

 

@RedSox this one is about you.

Hoping Twitter hollers at my boys there.

Anyway, two posts, one day. This one is purely mine, though J had a huge part in what I’m writing about.

March 2007 was a weird time. I was helping out at my family’s business due to familial strain, watching a beautiful member of my family battle an awful disease and feeling pretty much the smallest creature on the planet. The business my family owned at the time was a small store and deli on Cape Cod where I met some of the most amazing people. One, Joanne, would come by each night I closed and make sure I was never left alone to close up. I wonder today if she knows how very, very much I appreciated her company. We had a lot of laughs, she and I, alongside my stepsister, stepbrother and the rest of the store’s staff. Great, great people.

Anyway as usual I got sidetracked.

There was a listing online for staff members for Fenway Park to work the upcoming baseball season. I wasn’t making much (any) money working where I was and I was travelling 2 hours a day. I knew I was helping family, and my stepfamily knows I’d do it again for them in a heartbeat, but something needed to give just then. My home was Boston and points north, not Cape Cod. So, on a lark and with my friends at the store to encourage me, I applied.

The interview was a hoot. A bit of a cattle call, you get sent into one of the clubs to meet with various supervisors who go over your strengths, weaknesses and how you can handle working Day of Game, which has its own peculiar set of demands. I have a great hospitality background and am good at problem solving, so I interviewed for Customer Service.

I was hired within weeks.

Now, the Boston Red Sox have been a beloved team of my family for generations. My great-grandfather, my nana’s brothers, my father and his brothers, my own generation and now my son were all raised with Sox games as the soundtrack to our summers. We all, with the exception of J-bear obviously, bore witness to the curse’s seemingly unending wrenching of our hearts and then the miraculous 2004 ALCS and World Series. The Red Sox aren’t just a team to a lot of us, they’re like a religion; a hallmark of our culture and our upbringing, something we corner our calendars and way of life around no matter how good or bad things are.

So there I was, a staff member of the Boston Red Sox. And I loved it.

Between 2007 and 2013, I worked many games, met many people, and did two separate jobs. 2007-2008 seasons saw me working Customer Service solving fan problems face to face then 2009-2013 saw me working with Quality Control maintaining to integrity of the seating bowl as A2 called it. From March through September/October those years, my summer family was there for me: fans, staff and all those in between.

My friends there helped me through some of the darkest and some of the brightest times in my life. A disastrous choice by one family member left harrowing situations and choices being made just before I started at Fenway. Another family member found herself the center of many a prayer from us but, in 2009, we all said goodbye to her. In 2010, we buried one of our own, our beloved Ramone, and welcomed the next generation with the birth of my son in June. 2012, my son’s autism diagnosis… 2013, the decision for me to leave so I could be there for my son’s needs.

I write this because tonight, as I drove home from an errand, I saw the Sox game on on a television inside a gas station. I immediately started to cry. I miss my summer family. I miss those I was close to there, their weird version of love and their unparalleled sense of care and loyalty. When I had few to no others, they put their arms around me and helped me not just stand but to walk and flourish. They looked out for me. They just cared, and let me care for them in return.

Jeff, Scott, Marcita, the one and only Juliet, Garrett, Andy, Ferg, Al, Tony, Ramone (RIP dear boy), Andy K, Donnie, Emily, Kim, Erin, Gene (RIP, hope you have lots of dessert) and so, so SO many others…. Thank you for having made my life better. I miss you guys all so damned much. Take care of that ballpark for me.

Learning Emotions

This may be typical 3-year-old stuff alongside typical autism stuff but J-bear understanding emotions is kind of a trick. It’s not that he does not feel emotions, for he feels the entire gamut and then some I believe. It’s not that he is not empathetic either, for his sense of empathy has been known to blow many of us around him away. It’s the actually labelling and sorting of them that just is not there. Not yet.

… But for one.

A couple of weeks ago J started announcing loudly and cheerfully “HAPPY!” in his bright little voice, practically doing a dance whenever he said it. He’d sit in the back of the car sing-songing the word. So much joy came out of this little boy every time he said the word that it always made me smile at the bare minimum.

Then it dawned on me.

This was a thing. He was telling me something. At whatever given moment he was cheerfully announcing the word, every bit of evidence spoke to him actually being the emotion he declared. Overwhelmingly so.

Then it happened. Saturday, I was feeling miserable and J hopped up onto the couch beside me. My good side, as good as a side could be at that point. We started goofing around with my phone and the front facing camera but never can I generally get him to smile into it. Then as we were snapping photos I said “happy!”…. and this happened:

jacobcouchhappy

excuse my huge blue shoulder

He was intentionally joyful! He repeated it as brightly as possible and I got this image.

For a little boy who barely communicates with the world he just plain blows me away sometimes. He’s making things known and that just delights and amazes me. I love nothing more than watching this little boy learn and grow.

 

A New Home?

I am in the process of moving the blog to its own domain!

Our new internet streetcorner is http://www.jbearandme.com

Here’s to a new beginning on a new beginning.

(once I can make this thing actually work)

 

edit: IT LIVES. the best part of the move is seeing the little worm on the hook over on the lefthand side of the page. I view this page in a widescreen format, so that keeps him out of my way.

Bloating Away

I’m too uncomfortable to sleep so here I am, chatting at the internets.

Life is a lot easier right now, despite post surgical insanity. This morning the horrible heatwave of 2013 ended and it was as though the world heaved a sigh of relief. I said elsewhere that my body has felt like a clenched fist holding broken glass since Monday of last week. Now, finally, it’s as though everything can start to relax even if I feel so full of air everywhere that I might pop or blow away.

Moving about is improving. It’s not great and I am getting back pain like I did post c-section as my back overcompensates for my weakened abdomen but it’s not nearly as bad. It’ll continue to improve. I only take the narcotics I was given at night because while they work alright, I hate them.

Am I the only person in the world who hates narcotics? I refused them for weeks and weeks and only gave in last week after so long of discomfort, pain and just plain not resting. Then, of course, post surgery I really needed the strong stuff. Dilaudid was no freakin’ joke. That stuff knocked me right down but allowed me the ability to get precious sleep. Thank God too, cause I had the worst of roommates.

Another tale for another time, maybe.

J is still struggling with all that is going on. I know he gets more than he might initially let on. I see it in his decision making but he is, after all, a 3 year old boy. He wants to rough and tumble! He wants to crash into me! He wants me to pick him up for cuddles and hugs whenever he wishes it! So this is still an area of sorrow to me. It’s silly, I know. Soon enough I’ll be smothering him with hugs and throwing him around as I used to but so much of his communication in terms of affection, care and just play is physical that when that absense is forced, it leaves a dreadful hole in our interactions. I improvise when I can but overall, patience is going to have to prevail on this count.

I need to regain my momentum with fundraising. I have great ideas for things to do from great people and cannot wait to sit down and explore the options and start putting things into play. Having my strength and health back is absolutely key to this effort and it too is going to demand patience I don’t know if I have. I am a nervous person terrified of failure. I cannot fail at this, not for J, not in a million years. 

So. Soon, I hope, big things will start to come together. Disappointed in some people I’ve reached out to who initially seemed on board but who have since faded out. Life must have gotten in the way but I cannot help but feel a little sad for it. 

I just have to have faith, right?

—-

It might be the vicodin but I cannot find the spellcheck on WordPress right now so forgive me if this entry reads in gibberish. I’ll fix it in the morning.

A Weird Interlude

Last night, like so many other nights since he began running, J dashed over to me for a hug. This wasn’t to be like other nights though, my abdomen gripped with pain as i recover from surgery.

I cried out when he crashed into me. He went to my side immediately and buried his face on the couch. His expression when he finally did look up crushed me. He was absolutely heartbroken. Why couldn’t he hug me? Why did I cry out and edge him away? What was wrong?

All I could do was rub his back, kiss his head and cry as I told him again and again he was a good boy and this wasn’t his fault.

This morning, he stayed to my better side. He even got out his doctor kit and examined me. I think I did okay. He seemed comfortable with the outcome.

Words may be few from him but man, he says so much to those who pay attention. I’m forever in awe of him even when I’m sick.

image

sir j-bear enjoying a happy face pancake with mama a few days before mama had a gallbladder eviction.

be back soon with more decent content!

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