Spina Bifida Stories: Mary Jo

I often think about how I arrived at this moment in time. I am 37 yrs old. I am a social worker in a large hospital in Chicago. I have a bachelor’s and a master’s degree. I have worked in Minneapolis, MN and Spokane, WA as part of a national volunteer program. I have twelve brothers and sisters, twenty-five nieces and nephews, and lots of cousins! I also have Spina Bifida. I think I’ve had about a dozen surgeries, thankfully I don’t remember the early ones! I have an amazing family who have always been a great source of encouragement for me.

I was teased as a child, as I’m sure many others can relate to. But very early on in life I learned that I had a choice. I could let bullies win and live my life in a 24/7 pity party (I tried it for a while-trust me, it’s NOT a party,) or I could look at the world in front of me and do the best I could. “Can’t” was never a part of my vocabulary. I never asked if I could do something; sometimes I just needed to ask how I could do something. I tried a lot of things. Some were more successful than others.  But you don’t know until you try. I learned to roller skate in the dark with a pillow strapped to my bum(daylight would reveal the unconventional & embarrassing teaching method to passersby.)

Life is hard at times. But it’s hard for everyone. I don’t think my life is harder than someone else’s because I have Spina Bifida. I think our lives our different, but I can’t judge someone else’s life unless I’ve experienced it myself. I know I’m a stronger person because of my challenges. I am not a boastful person, but I do feel proud when I can reflect on all that I have accomplished in my life and think about all that I have yet to do. I am a successful, hardworking, kind-hearted, child-at-heart, fun-loving, tax-paying woman. Spina Bifida, a shunt and a pair of afo’s are just my accessories!

Our Spina Bifida Awareness Photo for the Day...

Whenever you hear someone say that children with spina bifida have no quality of life, think of this smile.  I think it says it all.....

Spina Bifida Stories: Liza

My name is Liza, and I was born in 1982 with Myelomeningocele. My parents had no idea I had this until I was born. Luckily the umbilical cord was wrapped around my arm and my mom had to have a C-section. The story I have heard is, as soon as they got to me, I rolled over so the doctors could see my back. I was then flown from Laramie Wyoming to Denver Colorado where my SB lesion was closed.

I remember every year going to "MM (myelomeningocele) clinics" where I would see all of the specialists: Urology, Neurology, Orthopedics, Nutritionist, Social workers. I also remember getting to pick out a toy every year at the clinic in Denver (that was totally cool :). I never really minded going to these clinics. It wasn't until my Dad went with me one year when I was about 15 that I realized it could be a little boring. My dad's exact quote, as he paced back and forth in the room after I had only seen 1 doctor, was "How do you do this?". It was just part of life.

I have had about 11 surgeries so far. Tendon transfers, 1 tethered cord release, Ureter implants, Vesicostomy. Surgery became a normal part of my life too ( But I will admit that waking up from anesthesia always sucked ).

I've always been able to walk independently. I had AFO's and orthotics as a kid, but decided to stop wearing them sometime around High School. I did get teased quite a bit for the way I walked as a kid, but the other kids quickly got bored when they didn't get any reaction from me (thanks for teaching me to ignore them Mom :). I played basketball in school from about 3rd grade until 6th grade. My orthopedic surgeon decided I needed to have my ankle fused during one of these years, and when I asked if I would be able to run and play basketball after the surgery, he told me "well you're not able to run now." (Yeah, I was MAD!). When he asked for a demonstration, he couldn't wait long enough for me to get my shoes on so I could show him...

In Junior High my health teacher asked if I would be willing to give a talk about Spina Bifida. I did research and gave talks to my health class both years of junior high, and went back and did my talk to all of the girls health classes for the first 3 years I was in High School.

 

I worked full time for many years, doing mostly fast food. It was hard, and my body always hurt quite a bit, But I just thought that's what adults did, so I sucked it up and did it (and didn't move when I was off work...).

I got pregnant when I was 27 years old (which was a HUGE shock to me, because I vividly remember at least 2 doctors telling me I wouldn't be able to get pregnant. The one time I listen to what a Doctor said...). My mom was totally terrified most of my pregnancy that my son would have Spina Bifida as well, because my Spina Bifida is more than likely genetic. My thoughts on it were "well if he does who better to deal with it than someone that has dealt with it for 27 years and knows the ropes?". After 22.5 hours of labor, Gage was born perfectly healthy in December 2009. My pregnancy was great (after the "morning" sickness was gone.). I was totally amazed to have warm feet in the winter! All of the nurses that came into my hospital room commented that "He's just so alert, and he's just so active!" And that has NEVER changed... He keeps me on my toes! lol.

In November of 2009 my left hip started feeling weak and I had to stop working, I figured it was part of the pregnancy hormones, but it didn't go away after my pregnancy. When I mentioned this to my OB/GYN about 6 months after I had my son, she agreed that it was part of pregnancy and "it would go away, or it wouldn't". Eventually I found out that I have another tethered spinal cord, and will need surgery to release it. After doing some research I found out that pushing during the delivery of a baby can cause Tethered cord. (Had I known this before I had my son, I more than likely would have had a C-section.) I remember being scared before a couple of my surgeries as a kid, but it was nothing like it is now that I have my son to worry about too.

 

Spina Bifida has always been a part of my life, so everything that goes along with it is just normal. It sucks sometimes, but everybody has struggles in life. Having Spina Bifida has taught me a lot of very valuable lessons in life: It's taught me patience, to be kind to other people, it's taught me not to listen to any of the "neigh sayers", it's taught me to look at things from more than one point of view. Luckily I learned early, that having a positive attitude makes a world of difference.

People think that my life is hard, and it can be, but it's all I know, and there is very little I would change about my life.

A Great Poem I Had to Share

I Love Being Me

by Gemma Hayton

I can't run the fastest

I can't swim the sea

I can't type the quickest

but I love being me

I can't kick a ball

or even climb a tree

I can't roll in the grass

but I still love being me

You see, this is my life

as others would see

they don't know what it's like

to really be me

So next time I'm about

rolling down the street

don't think of me disabled

but someone cool to meet

I have lots I can teach you

I have loads I can share

you will never gain my wisdom

if you just point and stare

So maybe I can't run the fastest

maybe I can't kick a ball

but I wouldn't change being me

not for you, not at all

Just the way to arrive home from vacation!!!

Feeling at Peace and Utterly Exhauted

Exhaustion.  That pretty much sums it up.  The last few days, I have felt physically and mentally exhausted.  For the first time in a long time, though, I've also felt at peace and not distracted.  I think all of the stress and lack of sleep these past few months has caught up with me and that's why I'm so exhausted, but my mind is still clearer than it has been in quite a while. 

I know we still have a LONG adoption road ahead of us, but I do not feel like we are stuck anymore.  I feel like we finally can move forward.  All the loose ends I had to tie up before we went on vacation are finished and the adoption is finally approved in Arizona.  I can finally just relax without feeling the weight of my "to do" list.  I am finally catching up on rest and it feels pretty awesome.  For once, I'm away from it all, and I can just relax and fully enjoy my time with my family.  It is a wonderful feeling and this vacation was JUST what I needed! 

My confusion and a HUGE prayer request!

My amazing friend, Amanda, brought caths to India for us.  She gave them to a friend who brought them to Ramya's orphanage for us.  We had called ahead to make sure it was ok to send them, and they said it was fine.  The caths got there and.....

They said Ramya is to little to get cathed and refused them!

Huh?!?!?!? 

When we first started the process, we were told she was getting frequent UTIs from cathing and that it was effecting her kidneys.  It's one of the reasons they put her on the "I really need to get adopted now" list that they send out.  When we had read the initial information about her, it said she was cathed every 2 hours around the clock.  On the recent paperwork, though, there was no mention about cathing at all.  I thought it was strange but didn't give it a second thought.  Even on her wacap photo and information page, the photo and information is different.  It's still her, it's just updated (although her name on there is different as well, but I think they change names to protect their identity). 

So, for now, I am very stumped.  I really do not get it.  I suppose it truly is just a game of "wait and see"!  If her UTIs have stopped, that would be AMAZING news, so I really pray that she is getting better there.

Now on to the huge prayer request.  Ramya is having surgery in just a few days.  She has renal reflux, like Madi does, except hers is on the right side and Madi is on the left.  She will have surgery to fix it, and then they said she will be cathed, and will have to be cathed forever.  I'm not really sure what surgery they are doing, because with "traditional" surgery to fix reflux, that does not mean you have to cath for the rest of your life.  With a different surgery where they attach the bladder to another organ to help it grow (we haven't crossed that bridge yet, so please excuse my really terrible, and possibly not-quite-accurate description), then you do have to be cathed for the rest of your life if you get it.  I'm not really sure what surgery she is getting.

I cannot imagine being in pain and being in a strange place all alone.  That has to be terrifying for her.  I am so sad they are doing the surgery, and that I cannot be there with her.  Please pray for peace and protection for her.  Pray that she will be calm and not scared.  Pray that she will heal quickly and that she will be given adequate medicine to handle the pain.  Pray that there will be no complications and that the surgery will be successful.  Pray that she will feel God's love and protection around her at all times. 

Thank you for praying for our little girl!