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.

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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.

You Know What Assume Means!

Being proven wrong. Not something people typically enjoy, but as one of the many Moms of a child with Spina Bifida, having my son exceed expectations in the simplest of things can be joyous. Many of the Moms I've met will post a picture of their child with the caption, "Take that, Spina Bifida!" Seeing these pictures makes my heart sing, fills me with hope, and allows me to celebrate with their family.

There have been so many instances where people have been wrong in their expectations with Kemper. I relish in these because he's busted through so many assumptions and limitations that people have projected on him based on the term Spina Bifida without considering him as an individual.

The perinatologist who told us about his diagnosis said he'd probably be paralyzed and have some mental retardation. She said his lesion was affecting 5-6 vertebrae and was very large. This is not true for my son.  He has movement and sensation in his legs and feet, he's right on track developmentally, and the lesion was less than a centimeter in diameter.

Nurses in the NICU told us that he would always "ooze" poop because of the nerve damage. That he would always vomit because of neurological issues. They didn't take into consideration the antibiotics he was on that loosened his stools or that he could have reflux, which he does.  When he was admitted to the hospital locally due to a GI virus, the nurse thought she was in the wrong room because he was kicking. She assumed he wouldn't be able to move his legs. 

His most recent accomplishment that says, "TAKE THAT!" He can bear weight on his legs.

    

Talk about having your heart soar. We were on cloud nine for quite some time on that one! 

He teaches me about making assumptions too.  We took him to the doctor a couple of days ago and I undressed him so he could be weighed.  I was telling the doctor how terribly constipated he was and as if on que, he pooped.  On their wall.  I still don't know how the poop ended up on the wall, but I was mortified. After we got him cleaned up I picked him up, he was still naked, and I was talking to the doctor about how he doesn't pee on his own anymore.  That's when he peed down the front of my dress. Talk about a flair for the dramatic to prove me wrong and teach me about making assumptions!

Every kid with this diagnosis is a kid. An individual. We take something out of them when we assume their capabilities. The only thing I really know for certain is that Kemper has my heart on a string.

Strap In!

Have you ever stopped in the middle of doing the 5784th thing for the week and thought "I want off the ride now!" I mean, it's not like you don't want back on, it's just a nice break to sit on the bench and have a shaved ice or an $8.00 Pepsi.  Then back to the nausea inducing pace, for sure.  Because that bench gets boring, and it's hot just sitting there without the whooshing wind just blowing your hair back on that exciting ride.  But when the ride gets scary, overwhelming, and stressful; I know I want a break.  You probably would too.

Right now, I'm kind of there.  I want to sit down and leisurely have a cool refreshing break.  Much like any ride that's already started, there's no way off until it's over.  So I am just going to throw my hands up and scream, which should be interesting if you see me around town, just wave.  There is a lot going on right now and the most anxiety inducing of all of them is a cardiology appointment for Squish.  He had a flow murmur and the doctor wants to see if it's closed on it's own.  If it hasn't there could be a heart surgery on the table.  For the sake of my sanity and the feelings of everyone I know, let's hope this isn't the case.  For that would be like that ride going off the tracks and plummeting straight into Hell for me.

Yes, I am aware that this surgery is common.  Yes, Squish is a freakin' rock star.  I know it would be temporary recovery.  Amid all the rational thought and reason there is this... I'm scared.  I don't want my sweet baby boy to have another surgery.  I don't know if I could handle handing my son over to yet another anesthesiologist as I kiss him goodbye and tremble with worry over the million things that could possibly go wrong.  Watching him wake up, swollen and groggy, is no picnic either.  But these things are nothing compared to him howling in pain when he's awake and whimpering pitifully in his sleep.  He hasn't slept well since his shunt revision.  He fights falling asleep and wakes up more during the night.  Is it related?  Probably not.  Does it make me wonder if he's afraid of what will happen to him if he falls asleep?  Sometimes.

In the end, it will work out.  This ride... life... will hit the bumps and smooth straight paths, and in the middle of the loop da loops somewhere you can close your eyes for a second and know that when it does end, you'll want to go again.  It's getting to the top of the hill, that clank, clank, clank of being pulled up, that gives you long enough to worry.  

An Ugly Place

The internet can be a really ugly place.  Most of the time for me, it's for research, friends, meeting people, and sharing experiences.  Ok, I admit there is also a piece there for time wasting funny sites and games, but mostly I use the internet constructively.  So when a Mom I know from a support group was upset at the treatment her child received when he attempted to enter a store using his walker at a business near her, many of the group members were upset in turn.

A news station local to this person picked up the story and ran it on the news and their website.  Websites are open to comments.  Sadly, a lot of these comments were either intentionally mean or really ignorant.  When I voiced my opinions, a person claiming to be a relative of the business owner actually blamed me for my son's Spina Bifida, saying that according to other sites I have, I drank and did drugs and it was probably an unplanned pregnancy.  While that is certainly not true, I couldn't believe someone I don't even know could be so upset by my opposing opinions on the internet that they would lash out so personally.

It seemed impossible to me that people were getting so vicious regarding what I see as a clear cut issue and regarding a child.  How can people NOT understand this is discrimination?  My point of view is up close and personal so I took a step back... am I being overly sensitive about it?  The conclusion I came to is that no, I'm not.  ADA guidelines require businesses to be accessible to people with disabilities, it's Federal Law.

Then I realized that I'll be facing this sort of attitude on my son's behalf for a long time, but he'll face it for the rest of his life.  I'm profoundly saddened at the thought.  He's a sweet, lovable baby right now and with a lot of work and a little luck, I hope to see him grow into a bright young man of good character.  But there will always be people who will think of him as "less than" a person.  Those people are wrong, their attitudes stink, and a little education, if they are willing, would go a long way.  That won't always be an option, I understand that.  It's unfortunate that so many are comfortable with their closed minds and ignorance.

While the experience has led me to realize that anything can be taken out of context, some people are just jerks, and being open leaves you exposed to those jerks.  I'm thankful for the thick skin I'm developing, but I think I'll lay off the comment boards for news stories as I've found that the loudest voices there are the ones with the most tightly shut minds.

Nowhere Land

Being a part of the SB community has been my saving grace time and time again.  There have been people to educate and comfort me, to tell me what to expect, to remind me to count my blessings, to listen when I rant and to listen to when they need to rant. The importance of this community in my life is vast. My desire to give back is also strong.

However my family doesn't always fit in with the community.  Adults with SB grow weary of parents asking the same questions over and over about their children. My son is someone with SB who is expected to walk. My son has only had 4 surgeries, and that may seem like a lot, but it can be a drop in the bucket for many in the SB community. We met a 12 year old who gets around in a wheelchair and has had 42 surgeries at clinic. How does one run to people with such patience and strength to whine about a shunt revision? The truth is, many of my peers in this community have much more to deal with on a daily basis. I do not have the energy or patience yet to tolerate rude strangers for the sake of being an ambassador for SB. Many people I've met in the SB community grit their teeth at the stares and intrusive questions and take time to educate people.

My family doesn't fit in with the non SB community either.  "He's all special and stuff," a family member said to me once, despite having no ill will behind it, it sticks with you.  Other women with babies around the same age post things about wishing their baby wasn't mobile, pushing them over with their foot because they aren't ready for them to move so much, or saying they aren't ready for the milestones.  I feel a twinge every time I read something like that, but I'm unsure how I'm supposed to react. I rejoice every single toe wiggle, wobbly attempt at sitting up and anything remotely crawl like. When you look at Kemper's pictures, everything seems fine, his development for the most part, is on track.  But it makes my chest hurt when people I love say, "You'd never know anything was wrong with him."

Lets get something straight, there is nothing wrong with Kemper.  He is not "special."  He is living with SB and has needs that coincide with that.  Will I be angry if you use the word cripple in front of me?  Yes.  Thankfully when this did happen I was able to take a breather and come back to discuss it calmly, finding out that the person who used it has family with disabilities who used the word cripple to describe themselves.  She meant no offense.  Will I dislike it if you use the word retarded the way I used to, without cause or care of how it may affect someone who overhears?  Yes. While Kemper's SB is a physical disability, my way of thinking has changed.  The world is bigger than my family, than the SB community.  Everyone deserves privacy and respect.

Still, this leaves us in a perceived no man's land, stuck somewhere between communities.  I'd like to say there are no lines, but there are.  Maybe one day I'll find my niche in blurring those lines.  But for now, I'm struggling not to rage on people who stare at Kemper's head incision.  Thankfully, no one has asked about it while we're out in public.

Truth be told, I don't look very approachable, but I never thought it would serve me so well.  Later on down the line, when I've figured out how to handle these things, perhaps I'll greet stares with a smile.  But I kind of doubt it. So, I'll just take a deep breath, enjoy my baby, and do what comes naturally, not worry about fitting in.