Tuesday, March 1, 2011

An emotional "field guide."

I've been trying the last few days to compose an informative blog entry for new mothers who were just told that their child would be born with Spina Bifida. Having been that mother, and down that road, and friends with many who wear the same shoes, you would think it would be easy. I thought, "this will practically write itself!" I was wrong...again.
My problem, I think, is that I get too wordy and caught up in the emotions I felt and still do at times. Today. and Yesterday. Let's not discount Saturday either. Okay...am still feeling daily and a lot and all of the time. Are you happy? Now it's out there.
This won't be a "What is Spina Bifida" guide, this touches more on the emotional aspects of it. Because that's what I'm feeling. Emotional...and heavy. 

Anyway, It's important that I remind you that I can't, nor can my friends tell any other person how to feel or even what they will feel or what is okay to feel when given their diagnosis. I thought I would take this time to go over a few of things that I have gone through, and hopefully my sisters in combat will add their two cents, too. 

I'm currently reading a book called, "My Baby Rides the Short Bus." It's a book written by mothers of special needs kids, one of the mothers having a child with Spina Bifida. Today, I was reading a chapter that was written by a mother of a child with Autism. She writes that before she knew her son had Autism the only thing she knew about it was that it was a catastrophe. I weirdly and awkwardly nodded my head the entire chapter.
I think that's the common thought with most conditions that make our kids, "different" She had to learn that there are varying levels of autism, just like I had to learn that there are varying levels of Spina Bifida. We all do. 

Don't assume your child will be in a wheelchair. Yes, it happens and yes it's common. But, it's also common to have a child walk with the use of a walker, or with hand crutches, or with no help at all. Don't drown your dreams of having a little ballerina or a little baseball player upon the arrival of this diagnosis. No doctor, no book, no person, nobody can define what your child will do. 

Probably the most significant thing I've learned is that the one major truth, and one common similarity that all of our kids have-is they will blow your mind. Over and over and over again. THAT, I can promise you. 

For me, a steep hurdle to conquer was my mouth, in the face of strangers. People talk all the time, people do it knowing it might hurt, and people do it totally oblivious to how much it might sting. I wish I could say I've developed a thick enough skin to scoff it all away. I haven't. While I am much closer now than I was months ago...I'm still not as tough as I would like. Will you have this problem? Who knows. I'm just throwing it out there. The point is, every single one of us has a story about a person who said this, or did that. We hope it won't be a part of your story, but the truth is..it probably will be. This is just a heads-up. Pick your battles. Take it with a grain of salt. There is a difference between being mean and simply being uneducated. As a coping mechanism, the best thing I can do is use my anger to fuel my desire to educate. Is this always the case for me, will it always be the case for you? Definitely not. Being angry is part of the process, embrace it...but not for too long. 

Doctors. We are conditioned from the second we have our first visit, that if something is wrong a doctor will have the answer. They will make it right. They are all knowing.  So, it's a hard pill to swallow when you have to look at a doctor and think to yourself, "I think you're kind of insane...hurry and finish your exam because I am never, ever, ev-er coming back again." That's perfectly fine. We've all got our "that doctor" story. Whether it's your own doctor who is saying things like, "Spina Bifida is the worst thing that could ever happen. Abort. Abort. Abort" or your child's doctor saying things like, "I don't think anything is wrong." When you clearly know that something is wrong. 

They never mention in the mom poems the nitty gritty parts of being a mom. It's not always being silly and pinching cheeks. One of our jobs is to advocate for our child. Sometimes this means getting in minor to major disagreements with highly respected medical personal.  Do it man. Do it. Do it, and feel super about it. How many people do you know that would not encourage you to get a second opinion? Exactly. If you're like me you'll think weird things like, "I don't want to hurt his feelings." Here's how I learned that I won't hurt their feelings.... they don't have any...JUST kidding, just kidding. But seriously...

Myelomeningocele, Syringomyelia, Syrinx, Chiari Malformation, Hydrocephalus, Neural tube, clubbed foot, AFO, DAFO, KAFO, Shunt, Catheter, Tethered cord, Decompression, Casting, Cutting, Scars, Pooping WHAT, WHAT, WHAT!? I remember saying, "I'll never learn this stuff." There is no way one person can retain this much medical information and for a lot of our kids, even MORE. The great thing is-we don't need to know it all.
 I don't cath my son, so I have a very basic to almost non existent understanding of the process. I'm okay with not knowing it. If the day should come that I need help, I have a lot of friends who do cath, they'll make sure I get it right. Comparatively, my wee guy has had a tendon release surgery, so when a mom comes along and has a question-I chime right in. Don't worry about knowing it all. You don't need to. Learn what is unique to your child and you'll pick up some handy information along the way. 

One thing I absolutely love about my SB friends,  is that when a new mother comes along and gives us the medical play-by-play and short history of why she is there, we don't just start in with the medical jargon and the "what to expect the disability years" speech. We congratulate her. She's going to have a beeebby! 
This thing in our belly just went from a precious miracle to lab test # SB598324HS. Or at least that's how I felt. I felt like "he" was replaced with, "it" all over again, and not in a good way. Allow yourself to be congratulated and allow yourself to be happy that you're going to give birth. It won't be what you expected, but then again that's how motherhood goes. 
I never thought I would see my child with a feeding tube in his nose. I also never thought my daughter would wake up from our nap before me, and paint my face with her poop. Both happened. Both were unexpected and both didn't sit right with me emotionally. But, both are memories that I can thankfully say are far, far, far behind us. 
For you, this might be a field guide of information you've heard already or maybe even experienced first hand. For others, this might be your first time. I hope you walk away from this with a new attitude and a little confidence in yourself. Don't say you can't do this, because you can. Don't say you're not strong enough, because you are. 
You're a mom-you can do pretty anything you want. 

If you're stumbling across this and don't know what or who I am referring to when I mention my sisters-in-combat or my friends or my SB moms-I mean the hoards of women at Babycenter.com in a group called, "Spina Bifida Kids" Who are moms just like me. We blog, we laugh, we share stories and best of all, we share information, encouragement and sometimes even medical supplies....love, too. 


  1. Stephannie ParrisMarch 1, 2011 at 5:22 AM

    I always love your perspective. You always make me laugh :-)So glad I'm a part of this SB family.

  2. Great post! Laughter through tears... :*)

  3. Oh, I LOVE it!! You need to send this to Kari asap, and have it added to The Journey memos for new moms...it's really good stuff, Potter! Kudos!