Kicking off Spina Bifida Awareness Month

Today kicks off the first day of spina bifida awareness month.  When I was 22 weeks pregnant, Madi was diagnosed with spina bifida.  I had no clue what spina bifida was and I was so scared.  I felt like my world was crashing down.  I had no idea what it meant for her and the doctor made it sound like a death sentence (literally).  I remember pleading with God and telling him that I could deal with anything He threw our way, but to please let her make it through the rest of our pregnancy and in to my arms.  Not long after Madi was born I realized how much of the story the doctor left out.  Sure, there would be surgeries, therapies, appointments, wheelchairs, etc...., but more importantly there would be smiles, laughter, joy, determination,  and LIFE.  He forgot to tell me the “stuff” would all start to feel normal, and it would all be ok.  Fast forward a few more years and Madi’s diagnosis also brought us Ramya, because we had learned over the years that spina bifida and wheelchairs really aren’t scary.  Now we get the privilege of watching both girls grow, thrive, and live their lives abundantly. I hope by sharing our lives we have helped everyone see that we aren’t defined by our list of “cant’s” (and trust me, every person on this earth has a list in one form or another).  That list doesn’t rob us of our joy or keep us from living our lives to the fullest.  We don’t live life on the sidelines.  We are truly blessed beyond measure.  

Sometimes I Cry

Sometimes I cry.

Sometimes it happens in public.

I am sure some people see my eyes swell with tears and think I am sad, but that couldn't be further from the truth.

When I look at my children, when I see their radiant joy, when I watch them laugh and experience new things, I can't help but be overcome with emotion. 

Most of the world looks at my girls and says "I'm sorry".  But I am not sorry.  They are PERFECT. 

Their life is beautiful.  Their life is worthy.  They love their life.  They are a blessing.  They are truly happy and so very, very loved. 

So, yes, sometimes my eyes get a little teary.  I just cannot help but look at them and feel an overwhelming sense of gratefulness that I get to witness their story unfold, and I get to be part of it. 

God has blessed us tremendously. 

 

Get Your I Love Someone With Spina Bifida Decal... And Support Team Double Trouble!!!

 

 

Do you love someone with spina bifida (AHEM... like my amazing girls ;))?

 

Do you want to help support Team Double Trouble in this year's Walk and Roll for Spina Bifida (uh, yes, who wouldn't?!?!?!)

 

Well, then I have the PERFECT thing for you!  It just so happens my wonderful friend Camille created this awesome "I love someone with spina bifida" decal AND she is donating a portion of every purchase to Team Double Trouble!

 

So what are you waiting for?!!?!?  Go purchase yours today!  Just follow the link below...

 

http://www.etsy.com/listing/160933876/i-heart-love-someone-with-spina-bifida?ref=listing-shop-header-1

 



Join us for the 2013 Walk-and-Roll for Spina Bifida

It's that time of year again!  We are officially gearing up for the 2013 Spina Bifida Association of Arizona's Walk-and-Roll for Spina Bifida.  This is a really fun event that our family enjoys, and we are SO excited to get to walk with BOTH of our amazing little girls this year!  What a blessing! 

The Spina Bifida Association of Arizona was a great support when we found out Madi would be born with Spina Bifida.  They put us in touch with people that we could talk to who had little ones with spina bifida as well.  They also reached out to us when Madi was born and we were in the NICU. 

I feel like many organizations push awareness about the importance of taking folic acid for prevention, and then just kind of stop there.  As we all know, you can eat a super healthy diet, be on prenatals before you conveive your little one, and still have a child with spina bifida.  I know that was the case for us.  I had been on prenatals for years before conceiving Madi and never took any depression medication or other prescribed medication (some medications have been linked to spina bifida), ate a healthy diet, etc...  Madi was just meant to be the perfect, amazing little person that she is, and we are so thankful for her!

One thing that I appreciate about our local chapter is that they don't stop with prevention.  They have many, many activities to help enhance our kiddos lives.  They give away adaptive bicycles, have support groups, throw a yearly Christmas party, and have many other events and ways to connect throughout the year.  Sharri, from our local chapter, has even come to visit us in the hospital.  They really do care!

Please help us give back to our local chapter by donating and supporting our team... Team Double Trouble.  You can donate through our link, but we'd also love for you to join us for the actual walk.  This year the walk is Saturday, October 12th at Steel Indian Park. 

THANK YOU!

http://www.sbaazwalknroll.org/teamdoubletrouble

If I Had Known Then What I Know Now...

When we first found out Madi had spina bifida, we worried and stressed a lot.  I cannot even tell you how many tears I cried.  I didn't understand spina bifida, and the doctors were only telling me worst-case scenarios, forgetting to tell me that first and foremost, we were having a baby.  A beautiful, perfect, and amazing baby that would bring more joy and love to our lives than we ever imagined possible.  If I had known then what I know now, I would have saved that heartache and tears and I would have focused on enjoying every second of my pregnancy.

This is a theme you hear a lot in the spina bifida community, and that is, "If I had known then what I know now...".  In honor of spina bifida month, I want to share with you what other moms, dads, and individuals with spina bifida themselves had to say in answer to the phrase, "If I had known then what I know now....".  If you are a parent receiving your child's diagnosis, I pray these words will help you through this time, giving you hope, direction, and focus.  If you have spina bifida yourself, I hope these words will give you strength, encouragement, and direction too.

If I had known then what I know now...

 

 

• I would not have worried about the what ifs....and enjoyed the right nows!
• I would have never googgled sb or anything that goes with it and enjoyed my pregnancy to the fullest!
• If I had known then what I know now I would not have let sb make me so nervous and stressed out. I knew how much I loved being a Mom and that should have been my focus. I would have researched about therapies, playgrounds and activities for children with special needs rather than researched sb itself. The information on the Internet is scary and leaves little to no hope. What I did know was I had no control, God was in charge the whole time and was blessed with a beautiful gift from Him.
• I would have talked to an experienced parent and not retreated into a shell. I thought that meeting other parents with children would make me more stressed, but has actually put my mind more at ease.
• If I had known then what I know now I would have put my foot down for pointless tests, Dr. appts., and treatments. I would have demanded caring and kind nurses and Dr's instead of allowing them to add to my stress and worry when my son was little or for dismissing my fears and concerns or my sons cries of fear and pain. Although it didn't happen often, it did happen and I wish I would have been the assertive, outspoken person I am now. I would have been more focused on him and not on the goals. He is a beautiful, vibrant, intelligent child ( and always has been) and I have finally learned to relax and enjoy every second because I know now, I can't fix everything ;-)
• I would have been unable to hide the smiles in anticipation of holding my baby boy, SB and all :)
• I would of stressed less and let God work...I would of probably been more open about talking with others not many knew about Nevaeh having SB until she was 1 1/2
• I would have been WAY less afraid of her needing a shunt. She got one placed at 4 months after the neuro decided it was time, and it seemed to really help her. The revisions I was so worried about also turned out to be no biggie. She needed 1 at 9 months and 48 hours later you couldn't even tell she just had brain surgery (except for the bald patch lol). I took a video about 12 hours after she woke up and she was herself right away. http://www.youtube.com/watch?v=sX6ClDkameA&feature=plcp
• I would have been more willing to share my weaknesses with others and asked for help instead of trying to live up to the "superwoman" image that others placed on me because I refused to be transparent about my fears.
• I would have loved myself sooner. I would have accepted the pint-sized, limpy, goofy, tye-dyed leg brace wearing, funny, awkward girl that God made me to be, way sooner than I did. I wouldn't have worried so much what people thought of me. I like me. Who knew? I'm kinda neat!
• Would have valued myself more and let myself know that I was a good person.
•  If I had known then what I know now I would have respected and appreciated my body more. I hated my body growing up. Poor self-image and a lot of self-hatred. I now love myself and feel worthy of love. I never felt that way growing up. I couldn't give a flying whoop what people think of me now and if I want to go swimming and show off my scarred legs, I'm gonna do it. I'm not gonna let a bunch of strangers and self-doubt stop me. :)
• If I knew then what I know now.... I wouldn't have spent so much of my childhood ashamed and trying to hide the fact that I had sb and was "different" from other kids. I would have fully embraced it and instead of hiding, would have educated. I would have been honest with my friends and instead of telling them I had to go to the nurse every few hours for "kidney meds", I would have told them the truth about having to cath. I would have listened to my docs when they told me how serious an infected ulcer on my foot was. I would have agreed to the amputation years ago instead of waiting until the infection was so bad it almost killed me. Most importantly, I would have made more of an effort to meet other people with sb so I didn't spend 30+ years feeling like I was the only one who would ever understand what I was going through. lol I guess that's why they say hindsight is 20/20.
•  I would not have cared what everyone else thought.
• Had an easier time in school, and probably gone on to be a veterinarian like i wanted to when i was younger.
• I would not have stressed so much during my pregnancy and looked for a support group sooner than I did. I thought we were the only people around with a child with SB and that is not the case at all. Also, I would not have googled neuro tube defects when that is what the OB said my daughter had before I went to see a MFM. It was very scary to read about those and think that the baby I was carrying fell into one of those categories but I knew I was going to keep her no matter what.
• I wish I could have seen a baby with Spina Bifida, my pregnancy would have been so much better. Just knowing that Ciarlo is just a baby who happens to have Spina Bifida
• I would have... Not stressed so much I would have treated him like a typical baby!!!! Because he is
• I would have been less shy,more outspoken, less fearing,more responsible and independent.

The Walk-and-Roll is Almost Here!

The Walk-and-Roll for Spina Bifida is almost here!  Please join us!!

 

To join or donate, please go to: http://www.sbaazwalknroll.org/faf/r.asp?t=4&i=1027278&u=1027278-332052133&e=5950846222

 

GO TEAM MADI!!

 

 

 

An Awesome Shirt with a Purpose

My wonderful friend, Kimbery and her family are hosting an orphan in their home this summer through a program called New Horizons for Children.  Not only are they taking in a boy named Sasha for the summer so that he can see and know the love of a family,but they are also working very hard to get him medical treatment (and maybe even a forever family!!!) while he is here.  Sasha has spina bifida and is in a foster home with 14 other children.  Though his foster mom loves and cares for him, she is unable to get him the medical help he needs. The Dill family has been faithfully fundraising to bring him home and also has been working on finding him free or reduced medical care.  You can help Kimberly, Sasha, and the rest of the Dill family by purchasing a "That's How I Roll" shirt or by donating at http://www.active.com/donate/summer2012/dill.  I got a shirt for Madi and I and they are seriously AWESOME!  We love ours!  Here are ours in action:

For each shirt you buy, $10 goes towards helping Sasha get the care he so desperately needs.  You can purchase your shirts by going to http://www.3elove.com/products/thisishowiroll.  If you don't want or a need a shirt, even donating $5 would help get Sasha here to the US and in to the Dill family.  Here is the link for donations:  http://www.active.com/donate/summer2012/dill

Please be praying that Sasha can get the care he needs while he is here and, more importantly, please be praying that he will find his forever family.

My Spina Bifida Awareness Tattoo

I got a new tattoo a few months ago and haven't gotten around to posting about it yet.  I figured today was a good time :).  Last May at Conner's preschool, they had an ice cream social.  It's the biggest fundraising night for his preschool and part of the event is a silent auction.  One of the gift cards up for auction was for a local tattoo shop.  David bid on it for me for my birthday, but I never actually went and got it done.  I realized I had it almost a year and was afraid it would expire, so I finally went in.  I had been putting it off because it is a really important tattoo for me, and I was afraid that the artist would mess it up.

I knew that I wanted to get the 3E symbol (Educate, Empower, Embrace, Love life) on my foot, along with the words "I'll Always Walk Slowly For You".  The 3E symbol is the International Symbol for Acceptance and I really love what it stands for.  I wanted to get the words "I'll Always Walk Slowly For You" for all of my kiddos, as my reminder to take life slowly, one step at a time.  To me, it represents not rushing Conner and Madi (and soon Ramya) through life. It's about holding Madi's hands when she's in her HKFOs, even though it takes more time, because that is how she feels more secure.  It's about taking life slowly, enjoying every minute of it with them, and seeing the beauty in the small things.

The tattoo artist did an awesome job and really took his time, making sure he did his best.  He had gone on our blog and knew how important it was to me and didn't want to make a mistake. It came out bigger than I expected so it's taken a while to get used to seeing something so large on my foot, but I really like how it turned out.  When I saw his design, I thought about getting it on my shoulder instead of my foot, because of the size, but really wanted it on my foot because of what it stands for.   It was hard to get a good picture of it, since it's on my foot and my foot is curved, but I tried :).  It looks much better/more professional in person.

 

 

 

 

 

P.S. If anyone is thinking of getting a tattoo on their foot, yup, it hurts :). I am proud to say I didn't cry though!

 

To good not to share!

SPINA BIFIDA AWARENESS:   You should be aware that having a child with SB may cause increased motivation to help others, a new found perspective in times of trial, a desire to enjoy the little things and commitment to change the way the world defines "disability". Studies show that raising a child with SB will induce strong feelings of gratitude for even the simplest of milestones and produce a willingness to do anything, talk to anyone, try any method necessary to make life better for your child. Side effects include feelings of worry, fear, uncertainty, and anger but are tempered with love, faith, determination and hope. Having a child with SB is not easy...but loving one is. ♥

Written by Joanna Penny http://www.babyboypenny.blogspot.com/

A beautiful new awareness necklace

Gretchen made a beautiful new spina bifida awareness necklace.  I just had to share!  She does great work, for a great cause!

http://www.etsy.com/listing/79411694/hand-stamped-blessed-awareness-necklace

Did you get your spina bifida awareness jewelry yet???

Well, what are you waiting for?  It's beautiful, and helps with TWO great causes!!  Go get some!

http://simplysoarescreating4care.blogspot.com/2011/05/spina-bifida-awareness.html

Spina Bifida Awareness Jewelry

I am very excited to share with you some beautiful pieces of jewelry, created by a very wonderful person, Gretchen of Simply Soares.  The proceeds of the sales go towards care for her son, as well as our adoption!  There are seven different styles to choose from, and she has bracelets, earrings, and necklaces.  Check it out!


http://simplysoarescreating4care.blogspot.com/2011/05/spina-bifida-awareness.html

P.S.  Did I mention that everything is hand-made?  It really is beautiful!