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My story: raising awareness for adults with Spina Bifida.

This one isn’t going to be easy to write and I’m sure not easy for you to read. It’s my story, or at least part of it.  It’s the part of my life I chose to share during my recent Teal on the Hill trip to help raise awareness of poor healthcare for adults living with Spina Bifida.

The night before our meetings on Capitol Hill was a sleepless one for me.  Believe it or not I hadn’t really thought about what I would say to each of these people.  I wasn’t sure how I would feel spilling the beans to total strangers. During our first meeting I didn’t really tell my story. I let Jennifer (the rep from Massachusetts) take the reigns.  She talked a lot about being an adult with Spina Bifida and how the quality of care that she is receiving now is not as great as it was when she was as a child.

You see, as children with Spina Bifida her and I both got amazing care (expensive, but amazing)  We both were set up with regular visits at clinics in our home states.   Because Spina Bifida really effects the whole body these clinics got a team of over a dozen different doctors together to work collaboratively for their patient.  I remember going to my clinic at Dartmouth Medical Center in Lebanon, NH feeling really special. Like, all these people are here for ME!  We were an awesome team! However as adults Jennifer and I both agree the quality of care is not the same.

There are about 16 clinics for adults living with Spina Bifida in the US and none of them are in New England.  My hope was that my story would raise awareness to the issue and hopefully bring more quality care to NH someday (or at least a little closer)

The Senators and state representatives weren’t surprised to hear that we got quality care as children.  It’s very common in every state that a child with Spina Bifida go to one of these clinics.  But, what happens when that child turns eighteen and doesn’t live in one of the 16 states with an adult clinic?  Well, they were shocked to hear this.

MY STORY

When I turned eighteen I was told I was too old to keep going to the clinic in Lebanon, NH.  I was told that they focus mostly on children since that is when kidney development is most crucial plus the clinic was shutting down completely due to a lack of funding.  So, I was left to find new doctors (with the help from my parents, of course) to hopefully be provided the same quality care I had been receiving. The unfortunate thing is a lot of doctors are not familiar with adults living with Spina Bifida.  It isn’t until recently that patients like myself are living as long as they do.  We managed to find me decent care for regular visits and exams that helped battle the normal infections and preventative care.  But…….

Now fast forward to 2005.  I had just graduated from college (21 yrs old) and found out I was pregnant (holy crap).  Admittedly not planned and not that excited about it at first but, I knew I was responsible enough and quickly fell in love with the idea of being a mommy!  About 3 months into the pregnancy I started encountering some major problems.  Basically my bladder and kidneys stopped working.  Something was blocked by the baby’s growth and urine was not able to get from my kidneys to my bladder.  It is really bad (and not to mention painful) to have urine just sit in your kidneys.  The only way to fix this the problem was to have two tubes (nephrostomy tubes) put in to each kidney through my back to release the build up of urine into two bags. It wasn’t really fun to spend my entire pregnancy carrying around two small bags of my own urine (gross).  While this helped, it still didn’t eliminated infections from coming and the (stupid) tubes would get blocked and have to be replaced over and over again. Long story short, I made it to month seven of the pregnancy only to be told during a routine checkup for the baby that there was no heartbeat.  The news was devastating.  I couldn’t believe that after all I had been through I wasn’t going to have this beautiful little boy to show for it. To make it all seem worthwhile.

Through this whole ordeal I really wished I had my team of doctors.  The care during my pregnancy was so disjointed and unorganized.  None of my doctors really talked to each other and I was prescribed so many different things. Sometimes I felt like it wasn’t even really clear as to whom I should call with an issue.  If I had a more coordinated care maybe things could’ve been different.  I can’t help but wonder.

So there you have it – my story. It certainly caught their attention and had them shocked at the kind of care I had received during my pregnancy.  I left my meetings feeling like I had raised more awareness for adult women living with Spina Bifida which was our mission.  I left feeling like I could conquer the world!

By the way, His name is Xavier William Lovering-Lopez.  He was born on November 3, 2005. I only got to hold him for a little while but he is forever in my heart. He made me a stronger woman and for that I am grateful. I know that everything happens for a reason and I have made peace with this chapter in my life.  I tell Xavier’s story not for sympathy but to help raise awareness for this very subject.  It is so important to me that Xavier be my drive behind this whole blog. That his name not go unnoticed but is heard where ever necessary in hopes that another woman with Spina Bifida does not have to go through the same thing.  He was born into this world this way for a reason and I think I have finally figured out why!

 

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P.S. I plan to share the stories of others affected by Spina Bifida. I truly believe this will be the best way to raise awareness, educate people, and help other feels like they aren’t alone!  So, whatever your story is please head over to my “share your story” page and share with us!

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Teal on the Hill: Spina Bifida advocacy on Capitol Hill.

Advocacy, to change “what is” into “what should be”

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Last week my husband and I attended the Teal on the Hill event in Washington, DC.  It was put together by the Spina Bifida Association (SBA) – whose color is teal, get it?

There were over 100 people just like me attending this event, from over 25 states, and all advocating for Spina Bifida (SB).  Most people who attended had Spina Bifida themselves, while others had children or loved ones with SB – one of the things I loved most about attending this event.  Before I heard about the Spina Bifida Association, I didn’t know there was a “Spina Bifida community.”  I somewhat felt alone in this battle, but here I was, in a room full of people who cared and were passionate about SB.  People just like me!  It was amazing to meet people of all different ages, abilities and we had one unique thing in common.  It was like being part of an exclusive club with the most wonderful group of smart, strong, independent people!  When they told me their stories and struggles, every single one of them smiled and even laughed.  They had such a great, positive attitude towards living and thriving as independent men and women, accepting what they have been dealt. I was so inspired and humbled.  In fact, it was so exciting I could barely sleep the first night.

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The Spina Bifida Association had painstakingly arranged meetings for us on Capitol Hill with members of Congress.  We were broken into groups by state.  My husband and I were there to represent New Hampshire and were paired with Jennifer who represented Massachusetts.

I have to tell you a little about Jenniferthis girl is amazing!  She was very smart and well spoken.  Even at the first meeting she seemed to know exactly what to say to get her point across. I felt like I could cry at any second and was at a loss for words. (Luckily that first meeting got the jitters out)  I was really in aw of Jennifer the whole trip and felt so lucky to be paired with her.

We first met Jennifer (and everyone else) the night before heading to Capitol Hill.  The SBA put together an informative training event to help rally the troops and provide everyone with material and talking-points that would give us the best shot at making a difference!  We all talked a lot about our personal journey’s and then got ourselves even more excited about speaking with Congress.  Here is our list we brought to educate and advocate!

  1. Ask them how much they know about Spina Bifida
  2. Influence an increase in funding for Spina Bifida within in the National Center for Birth Defects and Developmental Disabilities and the Center for Disease Control
  3. Ask them to sign the Spina Bifida Caucus 
  4. Advocate for quality adult care for people living with SB
  5. Advocate for affordable healthcare
  6. Tell them our stories! (I’ll share my story with you in one of my next posts)

Then the BIG DAY came… the day we would meet five different Senators and State RIMG_6782epresentatives from NH and MA; Elizabeth Warren (MA), Seth Moulton (MA), Jeanne Shaheen (NH), Carol Shea-Porter (NH), Maggie Hassan (NH).  Each member was so very nice, and each gave us about 20-30 minutes of their time.  They all were very kind, engaged and seemed to care and listen about what we had to say.  They asked a lot of questions and were really receptive to our ‘asks’, mentioning they were quite reasonable.  I think they were really moved by our stories and also seemed delighted to have two strong, independent, smart women in front of them telling their lifelong struggles with so much passion and enthusiasm, all with a smile on their face.

At the end of the day I felt like I could conquer the world!  I felt like a rockstar.  I traveled all this way to sit right in front of the people that have the ability to make impactful decisions on my behalf, to educate them, and they truly listened.  Talk about making a difference and making your voice heard!

So… what do I plan to do now?  I plan to write thank you letters and send follow-up emails – I want to make sure they don’t forget about Jennifer and I, ensuring they follow through.  I also plan to set up my own meetings with the local offices here in NH to continue to meet with our state representatives, and continue to share my journey!

That’s our trip in a nutshell.  I want to say a BIG thank you to all of my friends and family for helping me attend this event.  If it wasn’t for all of your love and support, I would’ve never gone.  It was certainly a once in a lifetime experience that I’m so grateful to have.  The memories from this trip and its inspiration will forever be engrained within me.  It made me stronger, more brave and stand a little taller!

P.S. A special thanks to Vic Roy. He spent the day with us on Capitol Hill initially to make sure we found our way,  but he ended up being more then a tour guide.  He’s a friend and initiated as a Spina Bifida warrior too!

Also, to my husband, none of this would’ve even happened if it wasn’t for you!  I love your passion and support and I know I’m a very lucky girl!

 

Spina Bifida is a part of who I am and I’m finally going to tell anyone who will listen!

I married this handsome fella almost two years ago.  I remember when I met him I was shy to tell him about Spina Bifida.  I guess I was afraid that telling him about it would make him like me less.  Which is ridiculous because no one has ever loved me less for it and all my family and friends have been nothing but supportive.

Well to my surprise, once I told Matt about SB he wasn’t shy at all to tell his family and friends about it too.  He would come home from visiting friends and be like, “I told them about Spina Bifida!”  Almost like he was proud of it!  I thought he was crazy.  In fact he came home one day from work and said, ” I wrote a blog post about you and Spina Bifida for everyone to read!”  It was the sweetest blog about women in his life that inspire him.

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I’ve never thought of my disability as inspiring. In fact, I wouldn’t even tell people about it unless I had to.  I would try to hide it.  I wanted to be “normal”  (whatever that is.)

Well here I am now, in love with this guy who tells everyone about me and all my insecurities. Which at first, I’m sure you can imagine, was uncomfortable for me. The more he did it the better I felt.  It was like a weight had been lifted.

So, I wouldn’t call them insecurities anymore. Finally I call it ME! Character if you will!  It’s who I am. Unfortunately it has taken me WAY TOO LONG to be proud of it. I’m a true believer that people are brought in to your life for a reason.  There are a million reasons why Matt is here and this is one of best reasons!  Thanks babe 😉

So, I’m going to continue this journey I’m on with living Spina-Beautifully in hopes that it will inspire other people to embrace who they are.  You should be proud of everything you have overcome and all of your differences and continue to take on Spina Bifida (or any disability) with a brave face and rockstar attitude!  Tell people about it because it makes you unique and inspiring! Go ahead, try it!  You’ll be surprised. Live Spina-Beautiful!

 

Pic: Jess Jolin Photography