To the Mom who is grieving a living loss.

My phone died in my hand yesterday morning as I was beginning to compose a reply to a comment on a blog post I saw linked on some facebook page.

The post was moving and sad, a mother whose son was non-verbal and though his condition wasn't named, it's assumed it's autism by readers and the post coinciding with World Autism Awareness Day. My son isn't Autistic, but I know the feelings she described because I have them. We are mothers who grieve. There's no competition or comparison here, we grieve.

The comment I was typing when my phone turned off was going to be full of information, presented in a reactive, emotional way that wouldn't have been helpful for anyone. The coincidence of the dead phone left me relieved I'd spared myself getting worked up, however I can't find the post again. Can't find the blog, or the facebook page it came from out of the dozens I follow that post similar content. That part stinks. While my response to a commenter would have done zero good for anyone, I do have a message for the mother that laid her soul bare in a moving blog post. Several really, but there are three main things I want to say to her.

1. You are not alone. Find a tribe of moms who love and understand you online or in person. Be yourself. Be flawed, be real, you will find a group of people who love and support you. My tribe formed online by joining BabyCenter Communities while I was pregnant. Support was an internet connection away. First there was the birth club, then the Spina Bifida Kids group, once we had a diagnosis in utero. Everyone moved to facebook groups and seven years later I've made and lost friends, watched as my core people evolved, and I've had real people to cry with, to admit defeat with, to share triumphs with, and offer support in return. Sure there's a weeding out of nutballs and jerks, but that's everywhere.

2. You are doing your best. This is a two parter. You really are doing your best and people who read your post and find fault with your story are not only assholes, they're wrong. Grieving the things you wanted for your child is normal. Parenting a child with disabilities and health conditions is hard as hell and you go on when you have nothing left because you must even when you're raw, lost, or feel dead inside. Shaking off what other people say is hard, but it's harder when you've written a post exposing your throat and someone wants to cut it. I don't blog much because I'm not a great writer, I can be reactive, emotional, and angry and my phone isn't always about to save me by dying.

3. The grief you're describing has a name, and it's reserved for us caretakers of children or loved ones with disabilities and chronic health conditions. Chronic Sorrow. There's a book and a web page, www.chronicsorrow.org that can be a source of information and comfort. This grief alone can make it hard to keep going. Combine that with depression, anxiety, physical health or any other myriad issues a person can experience, and the road gets very rough indeed.

Chronic Sorrow isn't really a well known grief response unfortunately. Parents and caregivers are sort of neglected because of the nature of caregiving. People say you can't pour from an empty cup and I know that's true, but time and money are usually a barrier for our self care. My self care includes therapy, manicures, gardening, and getting a break from our daily routine. The only item that gets regular attention on that list is the therapy, it's important and helps me deal with the grief, anger, and other feelings that are so big that I can't hold them alone.

While I'm holding out hope I can find the blog post again, it is a long shot in the vast sea of internet blogs. Maybe she'll see this, probably not. If anyone can identify those feelings of sorrow, grief, of wanting your child to have all the things that are impossible for them and feeling broken about it, and this information helps, I'm happy to put it out there. I'm exposing my throat because you are worth that risk. You love your child and I have love for you, we're in this together and you are not alone.

Success Maybe

A little over two years ago I found out about Cincinnati Children's Hospital's Colorectal Center and their Bowel Management Program. Since that day I have done tons of research, made a plethora of calls, chased nurses down at a conference, and asked a million questions of parents who have already taken their child for this program.

The past two years have been full of anticipation for this program, which touts a success rate of over 95%, which comes so highly recommended by other parents. Finally, Kemper was old enough to make the trip and do the program and I couldn't have been more excited to see a light at the end of the tunnel. This program is not advertised to the Spina Bifida population because they could not handle the sheer volume of people. I could not believe it. I felt so fortunate to have the contacts in our community that I do.

To put this in perspective, Kemper is at potty training age and having spina bifida can mean that's not really possible. While I feel like this is a very important issue to address, it's not one that people like to talk about, and Kemper deserves his privacy. So I'm trying very hard to talk about this while preserving that privacy for him.

We packed up our bags and flew out last week, met my mother in law, Melody, and checked in to our hotel. Kemper loved the people at the airports. He loved the people at the front desk. The next morning, he started making friends with everyone he met at the hospital. And what a hospital it is! It's a massive hospital with modern everything, the most friendly staff, the most smoothly running, and the best child life team I've ever encountered.

Our first day, Kemper had to do the hard stuff, blood work and the contrast dye study of his colon. There was a Child Life specialist with him the whole time, and she made this test so much easier. **Here's where I say, parents who want more info on this process, pm me on facebook, because this is where it's a more private issue.**  He also had an ultrasound of his bladder and kidneys, but that's cake, comparatively. The woman that did Kemper's blood draw was the very first person to ever get a successful needle stick on my child on the first try. From placing an IV to every single blood draw, everyone, even the teams at Duke, have needed multiple sticks. I had to make a rule, you get one shot in each arm, if you can't do it, we'll come back another day. I wanted to smuggle this woman home with me. Everyone we encountered from the valets to the ultrasound tech was just as friendly and helpful as you please. Kemper introduced himself to the entire radiology team and we all had giant smiles on our faces.

The next day we attended a seminar conducted by Dr. Pena and Dr. Reddy. Kemper got to go to a room staffed by child life while Melody and I attended. Both men made several of us parents break down into tears of relief and hope. Personally, I finally felt like someone understood the struggles faced by a child with these kinds of issues. The kind of care this hospital strives for is care for the whole child, the disciplines work together and create a plan of care for your child. They said aren't treating a colon, a set of kidneys, or a bladder, they are treating a child and that alone was enough to make a desperate parent explode into tears.

This program doesn't make the kind of money a surgery to re-route the colon or bladder into a stoma would make, takes much longer, and isn't terribly scientific. But why do surgery if you can get this program to manage the issues? Those are the words of Dr. Pena and I swear I could mouth kiss that man for saying it. After the seminar, a nurse gave us a demonstration of all our supplies and talked to us about the giant binder we'd been given. We were instructed on how to administer, avoid issues, and track progress, because you fly solo for the weekend. It gives you and your child an opportunity to try things out and get used to the process. This is no picnic for a three year old, or any small child. The whole process takes an hour, and 45 minutes of that is sitting still.

Our weekend was fairly successful, and I was so thankful Kemper had his Grammy there to help us. We were able to do some fun things to make up for the not so fun stuff.

After Kemper got a belly X-Ray on Monday, we met our nurse practitioner, Ebony Moorefield. Can I just pause here to tell you that this woman is amazing and I also wanted to smuggle her home with me. She's personable, listens without interrupting, and has a palpable compassion. She talked to us at length and we came up with a plan to tweak our program.

Each morning that followed, we repeated the X-Ray and our meeting with Ebony. Over the course of the week, I'd say we were 80% successful. We didn't leave with everything perfect, and while Kemper is doing so much better, he's still wearing a diaper for now. That's ok, though, because we will be closely in touch with Ebony and should we experience any real problems, our local pediatrician will get an X-ray and send it to her via email. I had to email Ebony while we were still in Cinci and it was less than 10 minutes before I got a response. Can you say WOW?

We saw Urology Friday morning before we flew out and discussed his kidney reflux, and I feel like CCH would not take the same "laid back" approach of Duke to wait and see how his kidney does. Dr. Reddy actually talked about how your kidneys work until they are in such bad shape they are close to failure. I don't want that to happen to Kemper.

We were able to meet and have group time with the other parents who were attending as well. We heard some horror stories and we heard some uplifting stories. Two couples brought their children from India, some didn't speak English, everyone traveled a great distance to be at CCH. There were four kids there with Spina Bifida, some with Imperforate Anus, hypermotile colons, and Cloacae. We all wanted better for our kids and we all have high hopes. Kemper and I got to spend a little time with the other SB parents and kids, I'm so happy we did, they are wonderful families.

So basically, I'm ready to give up my life near the ocean and move to Ohio just to have constant access to this facility and all the wonderful people that make it so great. I've never felt so reassured by the care Kemper has received, I don't say that lightly either, because our team at Duke has been fantastic. They just can't hold a candle to our experience at Cincinnati.

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.

The "R" Word

This post is tough. Not everyone agrees with how I feel about the word retarded. I used to be one of those people. Things change.

When I was a kid, it was a thing to slap your hand and forearm against your chest in a flopping manner and talk with a forced speech impediment. That was supposed to be a burn, a joke, calling the person you were talking to retarded. I don't know if kids still do it, but the thought of it now makes me cringe.

I've said this before, I used to use the word retarded in such a way that it was a slur. When you take the word and use it out of context it takes on a negative connotation. Now people will say they would never refer to a child with MR as retarded. This baffles me. Yes, they have changed all the labels, do you know why? Because the word retarded has taken on such a negative connotation. Now it's a put down, a way to call someone stupid, to refer to yourself as forgetful, etc.

The odd thing is how vehemently people will argue to be able to continue using this word in a hurtful way. Arguing syntax, arguing definitions, posting the dictionary entry. The word has it's place in engineering, mechanics, music, etc. Not to describe how silly you feel for forgetting your lunch. Not to call someone stupid. I suppose this is piggy backing on me posting a blog link on my wall to "Herding Cats." It's a blog written by a woman whose daughter has MR and how people use the word retard or retarded in an insensitive way. I linked it to my facebook and all Hell broke loose.

My son doesn't have MR.  He's got Spina Bifida, hydrocephalus, a VP shunt, a neurogenic bladder, hydronephrosis in one kidney, reflux, texture issues with feeding, a hydrocele (hernia), and he lacks the dorsi flexion in his feet he needs to walk properly. He's already been referred to as retarded by ignorant people. He has had multiple surgeries, has OT, PT, has had UTI's, been hospitalized, and goes to the doctor so much that everyone at the front desk knows him. He has to fight so much, just like all special needs kids. These kids fight EVERY. SINGLE. DAY. for things most people take for granted. Why do people want to add to their fight by throwing around a word that can cut so deeply?

That's why I'm so passionate about ending the use of the word retarded as a put down or way to describe how slow you are getting started in the morning. I'm a special needs mother and I want to advocate for the whole community.  

Why would you argue to continue being able to say something that can be so hurtful? This is the part that truly confounds me. Is it selfishness? Is it the perception of being told what to do? I don't understand it. I can't imagine anyone giving an explanation that would justify this in my mind. That's where I leave this post, I drew my line in the sand and it makes me mad as Hell that we even have to have a line. If you disagree with me, that's fine for you but this is not an agree to disagree situation for me. This is a deal breaker. I'll not suffer fools on this issue.

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.