Monday, July 19, 2010

The best thing I ever wrote.

A few weeks ago my mother shared with me a very disturbing comment that somebody had delivered to her.
While at work my mother was updating an old friend on Roman's Spina Bifida. A woman standing nearby overheard the conversation and said, "Spina Bifida? I thought those babies were born as like, blobs or something?"


At first I was furious. I wished very, very bad things upon this woman. VERY BAD THINGS. Later, I just felt sad. Sad because there are millions of people in this world who must think the exact same thing. Doctors included. Sad also because there are even more people living amazing lives and Spina Bifida is just along for the ride. They are not now, nor ever have been nor ever will be....blobs.

This incident, and so many like it has inspired me to rally the troops, and gear up for a lesson in compassion and enlightenment. I could go on to bore you with facts and statistics. Trust me, there are TONS. But, for today I want you to hear US.
 The following is from my army of SB moms (and dad). Whom I love, respect and cherish very, very, very, very  much. ...very.

 "I am one of the lucky ones. I didn't have anyone encourage me to terminate and I didn't have anyone tell me my child was not going to have a good quality of life. 

Clara is awesome! She already patty-cakes, is rolling over and working on army crawling. She is funny and cute and spoiled! She will have her obstacles in live, but who doesn't. We are more than blessed by our newest little one.

The biggest thing I want people to know is that Clara does not need their "pity" and "I'm so sorry" attitudes. She, like everyone else, just needs understanding and compassion." Heather, Mom to Clara SB at L5.

"Being told your child will have Spina Bifida is probably the scariest thing one would ever experience. My entire pregnancy, I had a 6th sense that something was wrong... But even after our diagnosis, I still had a small glimmer of hope that he might not have it; that the techs and doctors made a mistake. I don't know if I was in denial or just that hopeful that we'd conquer this like it was non-existant, but every thought you could have imagined came to me during the last 10 weeks of my pregnancy (we were diagnosed pretty late compared to most).

We've been lucky enough to dodge completely-uncalled-for comments, but we've dealt with a lot of people saying, "He looks so normal!" I cannot tell anyone how frustrating that is to me. Most people question whether or not he will walk, and occasionally, we'll get people asking us if there's "anything wrong with his brain." Once you throw that shunt/hydro thing in there, they go wild with it, assuming the worst. It frustrates me to know people are that unaware of Spina Bifida and what comes with it.. But, I will jump at the opportunity to educate anyone that is interested.. I suppose the rude comments and questions are worth it if they stick around long enough to be corrected.

My motto in life is "For every mountain, there is a miracle." I wouldn't know the good if I didn't have the bad. And I wouldn't fully realize how lucky I am to have such a beautiful family, spina bifida or not."  Lindsay, Mom to Justin aka "Judge" 
Functions at L3, lesion is lower L-S area."

"After finding out at 24 weeks that our baby would have SB, I spent many nights worrying about all the things Madison would not be able to do. Now I look at my little girl, who just turned one, and I am amazed on a daily basis at all the she CAN do.

She CAN light up a room with that contagious little smile.
She CAN melt my heart in an instant as she waves bye bye from the door.
She CAN totally get her way by sticking out that lower lip ever so slightly.
She CAN get down w/ her big brother when she hears some Kesha.
She CAN prove her doctors wrong every time.
She CAN change lives, and inspire others to do the same." Selina, mommy to Madison

"Let me start with it has been a long journey. We have three sons. Evan our first born was born to heaven full term, he had Anecephaly, which is the fatal end of Spina Bifida. Rowan our beautiful miracle is 3 yrs. old and is healthy and the most compassionate big brother Phoenix (1 yr. old) could ask for. Phoenix our baby has spina Bifida and severe Kyphosis.

We were told that if Phoenix made it to this life, that the quality at which he would live would be of little to no quality. They were wrong.  I hate that we can even insinuate that we can judge the quality or value of a life. God's ways are perfect and I believe with all my heart that children (all of them) teach us that there is no difference, it's us adults who have to remain childlike and embrace life as beautiful in whatever form it may be. A gift and a treasure to teach us Love and Acceptance!

The most beautiful part of all this heartache and Life is the change in perspective we have experienced as a family. And i believe all those who love and support us have too.

Losing a child and a disabled child can be intimidating and really awkward for most people. I have learned that people either lean toward ignorance or Hope and as a Momma, I much prefer Hope. We see life as the Greatest gift on earth and embrace the knitting together of Phoenix as he is, just as we do with our non Spina Bifida children. I believe we Breathe deeper, Stand stronger and Believe that nothing is impossible for our children and those we love.

Will our children have to Fight harder and Stand against odds we would never wish for?? Absolutely!! But we can cheer them on and each other and let the world watch and see that their lives are FULL of purpose and beauty." Megan, mommy to Pheonix T-12

"When I found out about spina bifida we were told horrible things about what to expect when he was born; that he would be a paraplegic, in a wheelchair for life, always be in diapers, mentally disabled, would never be independent, and be a burden to me and my family. This is such an archaic belief about spina bifida and not one of those things will come true. Yes he has had 2 surgeries and there is permanent nerve damage and he has a shunt. We are blessed with a happy and healthy baby boy who can light up the room with his smile and laugh. He doesn’t know that he is any different from any other 8 month old – and I’m not going to tell him he is! Yes he will need help walking, and will face challenges in his life, but he will do all of this with a gorgeous smile on his face." Amanda, mom to Nickolas. S1 with vp shunt

"My little Ro-Man...daddy couldn't be any prouder of anyone than I am of you. I still to this day do not know how you have been able to endure so much and still wear your smile the way you do. Your scars are like badges of honor and a testament to the stubborn little fighter you are. No, I could not be any prouder. You have proved all the "experts" wrong and are continuing to do so. I am so very sorry that you have had to endure so much but am truly thankful to have you in my life. We gave you the middle name "Abel" for a reason. We didn't want anyone to ever say "Roman can't do this, Roman can't do that, Roman isn't able"...we can say, "Roman is able...Roman Abel is very much able." Daddy loves you so very, very much Bubby Bubbers!" Jason Potter, daddy to Roman L2-L5

"You know, this wasn't supposed to happen to me. I had just turned 25, and I had a perfect little life. So when I got pregnant, I just assumed as long as I did everything right--and I did--that I was guaranteed a perfect baby. Imagine my shock when I went to the ultrasound to hear whether I was having a perfect little boy or a perfect little girl, and I was told that my baby boy had a "defect." I kept thinking, this is a mistake, this is not how it's supposed to happen. The books say it happens to one in a thousand babies ... why MY baby. And that was my "aha" moment. I got a one in a thousand baby. At that time, I realized that I was the perfect mom for this particular baby, and that's why I was getting him. Only later, after he was born and after going through all we went through together, did I realize that he WAS the perfect baby ... for me. He made me a better version of myself. I believe in miracles, and I get to see them on a daily basis--and that's not just a nice thing to say, I really mean that. I've gained qualities I never wanted to ask for because they're so hard to get ... like patience and humility and compassion. I've made a dear set of friends I never would have had before, and I even had a job I never would have imagined I would have even wanted, but it's the perfect job for me. I've also realized that no one is perfect. We all have our defects--some are just more outwardly obvious than others--and that's what makes us so special. I wouldn't trade my kid for anything, Spina Bifida and all."Colleen, mom to Nate, L2

"My name is Angela. I am a 39 yr old wife, and mother of two children - and I have the myleo form of SB. My level is approximately L4/5 to S1/2. Back in 1971 My parents were told I would never walk, talk, have kids etc. I've done everything anyone ever said I couldn't. 

I did have a shunt placed 2 days after birth as I was hydrocephalic. It eventually stopped working (in 8th grade) and they discovered I no longer needed it and it was removed when I was 19. One of my parents was very proactive in natural and alternative health, one always sided with the medical community. It made for some intense disagreements between my parents, but it provided a good balance overall. I avoided many surgeries with alternative health options. I've only had 5 surgeries my entire life. I can think of about 7 times surgery was avoided. I like to say that I am alive because of modern medical care, but I am as healthy as I am because of natural health and alternative options. The two sides don't know much about each other - so one cannot always speak to or about the other side, but it is important to research options and get educated about everything that is available.

I do have reflux of the kidneys but self cath since the age of 9. I've been infection free now since 1999 with natural and alternative options. 

I do have two children of my own - even with my husband and I using birth control at the advice of my dr to not have children. Both are healthy teenagers now. My daughter is 1 year away from declaring professional status as a ballet dancer, my son is a scuba diver and pursing his dreams in that area.

I did have braces until I was about 2 yrs old - but do walk unassisted now. I am a twin. My twin brother has no health issues related to SB.
I can say that in my family of four (twin brother and parents) that I am the healthiest of them all b/c I do take care of myself the best. They all have other medical issues - and I only see a GP now once a year for my physical and she barely even notes in my chart that I have the most severe form of SB b/c I'm never at the dr anymore. I haven't had to see my neuro in over 2 years and my uro in over 5 years. The last time I saw my uro she noted that it was "unexplainable" the changes I had in my bladder function which showed improvement - but she didn't want to hear about the natural things I was doing to achieve that (of course b/c there's no scientific proof) - but I haven't been back since. 

With all that I learned from natural and alternative health growing up and thru my continued education, I am free of all lower back pain - I have no energy problems (used to suffer from chronic fatigue). My sleep is regulated and I no longer have the insomnia bouts that I had as a child and young adult. Balance is improved, sensations increasing in my legs/feet slowly over time - the better I take care of myself the better I do and the better results I have with my health. My bowels are regulated- and wholly formed. I am off ALL meds.

I am an author, homeschool mom, public speaker, and nutritional consultant. I also work for my husband as his office manager." Angela, 39 blob free years! 

Spina Bifida does a lot of things to our children and to us. But, the one thing it doesn't do is create "blobs" These kids, and so many others are my heroes. I'm nearly 26 and don't possess even half of their courage. 

So, I guess it can be said that the best thing I ever wrote wasn't written by me at all, but I couldn't agree more and couldn't have said it any better myself. 


  1. That was wonderful!
    Such a great idea for a post - and I'm glad we were a part of it!

  2. PERFECT post and totally blobLESS!!!!!! We were blessed with twin miracles. Alex happens to have SB. We were scared at first, and were given very pessimistic expectations. The children and families we have met on this journey are just one more stream of gifts God has given us. SB has tested us, and stretched us to be even better versions of ourselves, as Colleen so beautifully says. Alex humbles me with his determination and fight and he makes me see whats truly important in life!!!

  3. Very well written! I admire all of the strength and grace with what you endure on all of your trips to Geisinger and everything that goes along with the long trip.

    Jason, your post has brought me to tears and is so beautiful and so true to everything a father should be. You are both amazing parents and I'm happy to know you.

  4. great post Erica. Of course it did bring me to tears, because I am into sobbing over things like this. I particularly enjoyed Lindsay's comments and perspective. People are unaware of many different disabilities because such things were not talked about or not a part of their lives. Those individuals who listen to explanations and learn are a true blessing. They may have joined the conversation as ignorant but left as educated on the subject. I find this much preferred to ignorant folks that choose to stay so.