My First SBA Conference 2012

This year I was fortunate enough to attend the Spina Bifida Association's 39th Conference in Indianapolis.People have been abuzz in all the SB groups on facebook, including my group, Living With Spina Bifida. It's been a personal goal of mine to meet some of the delightful people I've had the gift of meeting in the online Mom and SB community. It was exciting to count it down with friends and talk about meeting up in the lobby. There were so many sessions I wanted to attend, so much going on, so many doctors and speakers and vendors. The Cincinnati Children's Hospital Colorectal Center was presenting and had a booth. A million medical supply providers for catheters and orthodics, different wheelchair vendors, the ZipZac chair, armtrykes, standers, service dogs, latex allergy groups, and so on. Jean Driscoll spoke at the celebration luncheon and she is an amazing athlete and speaker.  My homie Erica Hoke Potter won an award for her fundraising efforts for 4 before the 4th.  They shined the spotlight on some really awe-inspiring people who are doing important things.

This trip had me pumped. Super pumped! However, it was a journey fraught with trouble.  It was cancelled flights, bodily fluids, personal injury, and Hell on my back.  I could be heard saying I was never going to leave my house again after this trip.  Kemper is still out of sorts over a week later and missing a piece of his top front tooth.  Thankfully it's a baby tooth, but still, a chipped tooth.  I'm nursing a 2nd degree burn on my hand, and some of our clothes were thrown away.  I had a big stroller, diaper bag, cath bag, carry on, a suitcase, and my car seat.  It was ridiculous. And so hot, dude.  Crazy hot.

I'd go again in a heartbeat though. The bond between the people in our community is strong, for the most part it was like getting together with old friends.  The information and networking at the conference was absolutely worth the trip. Kids Camp was fanastical, the girls running it have a sister with SB. They were great with my son, and with the clingy Mom. (It was the first time I'd been away from him like that, c'mon, that was hard!) The tips and pointers and feeling of someone really knowing what your life is like and understanding how hard and how wonderful the day to day can be is so awesome that it makes me a little emotional. My heart was usually soaring or breaking, I cried a little, and I got some really solid information and feel like I have a plan for Kemper.  That feels freaking amazing.  It's like you're bursting with renewed energy to be home from conference.  You have all this information and data and know what you need to work on, and it's rejuvenating to the spirit to have that burst of steam to do something great for Kemper. It feels good to have a plan and goals and ask panels of experts questions and get answers and suggestions that are working.

If someone asked me if conference was worth the hefty tag of attendance, hotel, and airfare, I'd say without a doubt YES. Also, it's pretty sweet to stay in a swanky hotel and go to receptions and have wine and catered breakfast and lunch for a few days with some really nifty peeps.

Next year will be a little different with mini conferences, but I still plan on going to whatever they have, and participating in the SBANCSC Walk n Rolls this coming year. This is my cause and I have renewed vigor.

A Year, Summed Up.

I've been really neglectful of my blog and while my dear readers, all 3 of you, may have given up on me, I've realized that I need this.  Getting my clunky thoughts out is therapeutic for me.  Here we go.

Squish turned a year old already.  I don't know where the time went.  I picked up a tiny baby, held him close to me, and when I went to put him down he had 6 teeth and liked to smack my boobs.  He is a gibber-jabbering hedonist who loves to cuddle.  He can get from the bathroom to the kitchen dog door in less than 20 seconds, little tushie swinging with the effort of his all fours crawl.  He's gorgeous.  He's sweet.  He's kinda whiny and clingy.  I love him.

Watching him learn and grow has been wonderful.  Getting through the hospital stays, the CT scans, the UTI's, the surgeries, and that sort of thing has been crappy.  He was a vomit fountain for about 4 months with reflux.  I may as well have been doing laundry for a small hotel.  Through it all, he's kept his easy going demeanor.  I wish I were as laid back as Kemper.  In the face of all adversity he's had, he meets it with a smile and just won't give up.  Much like the boob smacking.  I can stop him and say no all day long, he just grins at me and smack, smack, smacks.

There are a lot of people I couldn't have made it through the year without.  There's no way I can properly show my appreciation to them.  So, I'm using this blog post to repeat some of the best advice I've gotten through the year and give some of my own to people who may be in the same spot I was last year this time.

Great Advice: (As I see it.)

Have a support system.  Yeah yeah, everyone says that.  It's true, you need it.  But you need people who are familiar with Spina Bifida.  So, if no groups are available locally, go to the internet.  It could take almost a year to weed out the people that you ONLY have SB in common with and make some friends.  I'm so glad I did.  I have some true homies.  There are groups on babycenter and facebook for Spina Bifida.  Hell, I even run an SB group on facebook!
I'm telling you it's the friends you make that will be your rock.  Sure your family means well, sure your friends are supportive, but these people know what you're going through.  They've been there and most of them are willing to offer advice and support.

Do not let a digitized ribbon confuse your heart.  I know lots of people that I didn't know before I had a baby.  Many of them are new moms like me.  Many others are people I met through SB resources.  Some of them are just ridiculous people with nothing to contribute but sucking the very life out of you.  Don't let them.  Come SB awareness month when they plaster their facebook with ribbons, don't feel like you owe them something.  You don't.

Don't let this change who you are!  Your child needs you to be you.  Don't go changing because you think you have to in order to be a great parent.  A great parent is made by someone who is secure in who they are. Also, you can't live wallowing in "why me" or "my child can't..."  Keep living like you did before, enjoy life so your child can too.  A miserable parent makes for a miserable child.

Trust your instincts.  Yeah, the doctor at your pediatrician's office has a degree.  Yes, you should trust him on lots of things.  But when it comes to Spina Bifida stuff, call the neurologist, urology, ortho department familiar with your child's care!  Remember that you know your child better than the doctor who sees him for 20 minutes every so often.  

Your spouse is not you.  Sounds simple, but it's all too easy to forget.  I was diving headfirst into research, books, scientific data, joining groups online, trying to reach out to local people.  My husband mostly relied on the doctors and me for information.  At first it upset me, but I realized that he deals with things differently than I do.  He was willing to take the information as it came.  I wanted to know everything NOW!

Therapy is OK.  I'm in therapy.  In the same vein as my need to have all the information lined up for me, I hate surprises, and I have an anxiety... problem.  Because I'm high strung and a little scary sometimes.  So, therapy is a great idea for me.

Know your insurance.  Seriously.  Stay on top of it.  There's a million and one things you have to do every day, I know.  But every dime counts.  Don't let a misfiled form or something take money away from your family.

Use a beach towel.  If your kid spews like a geyser... screw the burp cloths, move up to beach towels.

Alright.  My little bag of wisdom is just about empty.  Just remember above all else, your baby is just that, your baby.  No matter what challenges lay ahead of you.  You can do this because you really have no alternatives.  You'll rise to meet whatever comes up and if you're lucky, you'll make some damn fine friends along the way.

Dear Universe, That Horse Is Dead.

In other words, I get it.  I understand that you can't plan everything to the letter and expect it all to go off without a hitch.  I've gotten that lesson in spades by now and I think I'm learning to roll with what comes.
The thought that this is all preparing me for something bigger kind of makes my head hurt because I don't like it when plans go awry, but I'm trying to accept it.
Recently, my family had plans.  My sister had plans for a great summer with her family, enjoying the pool with her kids and doing what she loves, running.  Instead she had to have shoulder surgery after being injured by a student at the school where she works.  She's coping with a lot of grief in this situation, she is grieving her summer of carefree fun, her ability to be independent, her feeling of safety at work, her feeling of value from a certain co-worker, and more.  I can't begin to tell you how frustrated and upset I've been on her behalf, but that doesn't begin to cover what she's been feeling.
I tell you this because a couple of weeks ago, we had a big family vacation.  We do it every year, my sister and her family, my Dad and sometimes his fiance (she couldn't come this year) and my family.  This year, my sister had to sit in a therapy chair that did PT on her arm 3 hours a day while hooked to a tins unit.  This year, she had to ask me to put her hair in a ponytail, she couldn't hold her nephew other than posing for pictures, and she couldn't play with her children.  Maybe the Universe is taking her to school too, but I it sucks for her!  Because on top of that, we had an earthquake that shook the condo we rented and left us scrambling to get in touch with friends and family that were in the area where the quake hit.  Because if we felt it at the beach in North Carolina, we couldn't imagine what it was like where the quake was centered.  Thankfully, we reached everyone in great shape.
Kemper was great when we arrived, but no sooner had we unpacked he started getting sick.  He was congested and vomiting without a fever.  We treated him over the counter, but I have to admit, I was so happy it wasn't our carpet he was anointing, because it was nearly constant.  He improved over a couple of days, but we were new parent train wrecks.  Do we take him home to his pediatrician?  Do we wait it out?  We worried, fretted, took it easy with him, and worried some more.  Then all of a sudden, he improved to the point we thought we could just relax for the rest of the week.

Then... Irene caused some issues.  We had to end our vacation early because the island we were on was under mandatory evacuation orders.  My husband went home to our dogs and house, which was just out of the projected path of the hurricane, and I took Kemper and fled inland to a motel room.  I spent two nights there wondering if my husband and home and dogs were ok while trying to keep up with what the storm was doing.
Walking in the front door was so very sweet it competed with my return after seven weeks at Duke.  Home.  Ah.... a breather.  Then full force sick baby again.  He's been back to the doctor and had an Upper GI which of course, I have to wait through the holiday weekend for results.  Of course.
So in my defense, I'm trying really hard to roll with the punches and continue to throw the plan out the window, but it's not easy.  So not easy.