By The Time He's Two...

The day after the ultrasound that confirmed Kemper had Spina Bifida, we went to see Dr. Culler in Chapel Hill, NC. He had previously worked with the MOMS study in which the repair surgery is done in utero instead of after birth.Our Perinatologist sent us to him for a second look and he said the words that helped me pull my broken heart and shattered dreams back together.

"By the time he's two you may never even know he had Spina Bifida."

Not a guarantee, not a certainty, but hope to cling to that my baby would have a shot at typical.  Thing is, back then I didn't know much about Spina Bifida so I wasn't sure what I was hoping for. All I knew was that what the Perinatologist had to say had been the most frightening, disheartening, terrible future for our baby.

Turns out, that's pretty normal when you're delivered the Spina Bifida diagnosis.  I believe it's a combination of CYA (cover your ass) and outdated information.  It takes a very long time for the standard of care to change and for information to be up to date for doctors that don't deal with Spina Bifida every day.
Dr. Culler gave us a better informed, more realistic set of expectations because his career included ground breaking surgery on a fetus's spinal cord.  I'm not saying that's what it takes to get informed doctors, but it feels pretty close to that sometimes.

Anyway, let's fast forward two years.  Turns out that Kemper still noticeably has Spina Bifida and that is OK. Lots of things have changed, lots of things are better than we ever hoped, and I've made some fantastic friends in the SB community.  I will say this, Kemper has very high functioning for Spina Bifida, his lesion is sacral, and he can walk.  So, I suppose on the outside if you look at him, you see a typical child. But he's got a ton of stuff going on medically and developmentally.  Again, not as much as most kids with SB, but he's still got it happening.

I continue to digress.  My point is this, if you told me two years ago that there would be a point where I could cath him in an airport bathroom with people staring and not bat an eye, I would have called you a dirty liar.  If you told me that I would get through sending him to the OR 5 times without fainting, I wouldn't have believed you. If you said, you're going to get to the SB Conference and meet all these people who've supported you in your journey, I would have said Kemper was far too fragile to travel. He flew twice this year and took countless car trips with me. He fell on his face, slammed his fingers in doors, threw tantrums, and all kinds of other stuff too.

This is our life. Kemper is our world and he is living. Yeah, he's got Spina Bifida, but in a way, that doctor was right. It's not the first thing we think of anymore. Yeah he wears braces, yeah, he's got a shunt, etc, etc.  No big. I can't believe I reached this point, so I guess it is a big deal. I want all the newly diagnosed parents out there to know that this place exists.  I'm settling in and grabbing a drink with an umbrella in it, I'll see you here in a couple of years.  Until then, if you need me, I'm there.

                                                            Happy Birthday, Kiddo. :)

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.