"What is the one thing you wish people knew about Spina Bifida?"
Here are their answers:
That those of us with SB are people first that happen to have a disability.
That ANYTHING is POSSIBLE!!!!
SB kids are just kids with cool gear! They love the same things other kids do!
That people with SB are smart! That their SB does not define them they define their SB. They are normal people with normal feelings that want to go somewhere in life. They are Miracles for God!! And us parents get front rows seats to Gods miracles every day!
That the medical community needs to catch up. OB's need to know this is not as tragic as they make it seem, and adults with Spina Bifida need care just as much as the kids.
Having SB is not the end of the world. Don't feel sorry for my son. God made him perfectly just the way he is meant to be.
SB is just a journey. In life we all have journeys, and these journeys challenge each of in their own way. Spina Bifida is just another journey, and even though parts of it can and will challenge you deeply, the other side of that journey is laughter, hugs, great joys, deep friendships, experiencing a deep sense of community and the pure exhilaration of living a blessed life. Our journey of Spina Bifida has made me a better person and given me a deeper sense of compassion for people off all walks of life. I may have been terrified when I learned of my son's condition, but I wouldn't trade our journey for anything.
It's not impossible. there are good days. there are bad days...but you wouldn't know the good if you didn't have the bad.
OBs will scare you with all of the worst case scenarios, but expectant moms should know "YOU CAN DO THIS!!! And it's going to be fine. In fact, it's going to be great!"
That it's not tragic, that people with SB are more similar than different.
People need to know that our kids are just kids. Plain and simple. This girl likes makeup, texting, and shopping just like every other teenager I know!
Spina Bifida doesn't just affect mobility. Be understanding when we have problems with shunt malfunctions, over sensitive hearing, bathroom time, or executive functioning issues.
It's not the end of a "life". I think back at when I was pregnant and how it seemed like all of my hopes and dreams for my future daughter had all been broken and burned. But you get better dreams, dreams that are worth more. I always wanted my daughter to be a ballerina- she is. And it's so much more precious to me now. And she gets more attention and captivates more hearts than I could ever imagine. My little East Texas town LOVES her.
I want pregnant mothers to know they are not pregnant with a diagnosis!
A life with SB is a life worth living! When I look at my child with SB I see happy, beautiful, smart, loving, and did I mention HAPPY!
Kids with SB teach their siblings so much, and greatly enrich their lives.
People are people first.
That there is nothing wrong with them. Often we get asked that by adults/kids. And I always have to say there's nothing wrong with my child because she was born perfect in His image.
Kids with SB can do anything they put their minds too!!
I'd want people to know there are hard moments. There are rough moments. But there is hope, there is victory, there is strength. Your family is better because of it all. And those hard moments, they are just moments. The rest goes on and on.
I wish people understood that there is no "cure". No they won't be able to "fix it". This is how he is. And he's perfect that way. Also to understand that no two SB kids are the same.
As parents we deal with a lot of emotional moments and things aren't always simple. Our kids are beautifully unique and they teach us all to see a different view of life and just roll with it!
I'd want people to know that we are not "inspiring" just by virtue of having Spina Bifida. We can ALL inspire by our actions, and just because we have a few extra challenges, doesn't mean we are more "special."
I would like people to know that life is precious no matter the circumstances. That, yes, SB is a diagnoses but the SB does not determine the person.
I wish parents would teach their young children not to stare at our kids but encourage their child to talk to our kids just as they would any other peer.
That SB affects the entire family... in a POSITIVE way! It makes siblings more caring and compassionate,
Spina Bifida is what our kids have. It's not who they are. They are dancers, writers, athletes, actors, students, PEOPLE. They determine who they are.... Not Spina Bifida.
SB affects each kid individually--not all kids use a wheelchair, not all kids have the same learning difficulties, but regardless of the challenges each kid faces, it still provides challenges for that child & the family loving that child.
Spina bifida doesn't define a person, it's just a small part of who they are. And using a wheelchair is ok! You don't have to feel bad, wheelchairs give freedom!
SB effects more than just the legs and spine. My daughter has had MRIs, CT scans, out patient procedures, major surgeries, personal care challenges and learning struggles. She could easily use these experiences to complain and be withdrawn from people. She makes the choice to shine God's love through it all and impact the people around her. She reaches out to the "outcast" and makes them feel loved.
I want people to know we are a family JUST LIKE YOURS.
There are days when I forget about Spina Bifida, in spite of the medical procedures that my son needs on a daily basis. Our family has bad days, just as any family would, but we have lots of great, uneventful days just like any family.
Teach your kids to see our similarities and to celebrate our differences!
Kids with Spina Bifida are kids first.
I want people to know that Spina Bifida does not just affect mobility but it affects nearly every part of the body (shunt, bowel and bladder, noise, learning difficulties). Also that it's not something they grow out of and that shunts and cathing are most likely lifelong issues. Also want people to know that spina bifida affects each child differently and doctors can not predict what it will look like for your child in the womb. So please do not abort SB babies. It breaks my heart that over 50% are aborted.
We just try to remind everyone that nothing is "wrong" with our girls. While we may face struggles from time to time, our girls don't need pity, just support! Their lives are not tragic... they are full of spunk, energy, enthusiasm, creativity and beauty!
Our kids are blessings to so many people. All their achievements are what gives so many people hope for a better future.
Medical staff and hospital nurses need to have more education about what SB is, and how to treat it. I was asked by a nurse how long Tanner has had it, and how long it will take to get over SB. BUT I also want to say that wheelchairs are not scary! They are just equipment that help people with SB have a better quality of life. Wheelchairs are just that, a Wheelchair.
That they are mentally all there. People will ask me if he has any mental problems. Even after they have talked to him like any other 3 year old. It frustrating.
That life with SB is just LIFE - full of ups and downs, challenges and choices, heartache and hope. Do we not all live a life like that? Spina Bifida is a diagnosis, not a direct order to stop living your life. After all, our character is not determined by our hair color or height. DNA doesn't define who we are as human begins. What directs our lives is our dreams, determination, and the decisions we make everyday! Giving up the labels and choosing to live life as we are, with what we are given, growing daily in gratitude and grace. Showing the world who you are despite the challenges - there can be no greater goal, nor sweeter victory.
That we, as parents are grateful that our children have imperfections just like all other parents. They are our greatest joys and are as human as everyone else. I think that educating people is key, that we welcome questions and we are not afraid of what will happen to our children. Having a disability does not mean disabled. Our kids are as able as we let them be.
Spina Bifida is an amazing journey that will teach you about the incredible human spirit, the love and generosity of others and if you are given the chance, you don't want to miss it.
I would like for people to know that my daughter likes to be invited for playdates, too. She's just like any other kid, but with wheels. And who cares if you have stairs. Step back and watch her go!
Everyone with Spina Bifida is so different, just like all people are different. In fact some people with Spina Bifida do have developmental delays, like my daughter, and that is okay. She is wonderful, she is love and she can still do great things.
Hearing that your child will be born with Spina Bifida is one of the hardest things you hear. But when your child is born your realize that your child and what she or he will be like comes first and not what they were born with. And as a parent that doesn't make your special, it just makes you a parent.
People need to know that differences are good, that a wheelchair doesn't make someone less able, and that people with disabilities live normal lives just like everyone else.
SB does not define my child. She is the light if my life!
Having challenges that not everyone can relate to is sometimes lonely. Having a community of online support and having families who love and understand each others children from afar has been a blessing. It can also be a 911 of info in the middle of a crisis. Besides having amazing children we've been blessed with amazing friendships because of Spina Bifida.
That people with SB are people. They are more similar to you than they are different from you. And having a kid with SB is nothing at all like the nightmare you imagine. It's just like having any other kid that you're madly, insanely in love with and that you would do anything for.
It's not as awful as I once thought, It certainly has changed our lives, but only for the better. We are more compassionate, thankful, thoughtful, joyful because of SB - and so is our family.
If you have questions....ask...don't stare and whisper.
That people w SB have all the same dreams of education & career & impacting the world as any other child might ... Sometimes logistically or financially it takes a little extra & you probably always need to think outside the norm -- but dreams ARE possible!
When your child is diagnosed with SB, it might feel like the end but it's just the beginning of something new and fantastic. Your child is capable of joy, of having meaningful relationships, of being independent, and of bringing more love to your life than you thought possible. It will not always be easy (parenting any child has ups and downs) but you will never-- not ever-- regret your child.
I want people to be aware of the blessings of Spina bifida. The love that God has shown us, He has shown favor by choosing us to be their parents. Our lives are different, but only to those who aren't like us...to us we are just normal...our normal. There are many wonderful people that I have had the pleasure of meeting that I would not have if it weren't for SB. I love that about SB. We are a HUGE family and I know that I can count on them anytime!!
Please don't hush your children who want to ask questions. It happens all the time. Also, I want people to know that children with Spina Bifida have siblings who are equally as valuable. Many times I have watched well intentioned people shower my son with Spina Bifida with attention, kindness, and even gifts while his brother stood in the background and later asked why they didn't "give him a piece of candy, too." Hard for little kids to understand. However, all in all we are all better people for living with Spina Bifida. Something you can't explain!
People with SB are enabled not disabled. Sometimes you are more "disabled" by not knowing hardship. Our kids are normal, amazing little people.
Kids with SB are kids FIRST. SB is only a part of who they are.
Spina Bifida always keeps you wondering and guessing what will come next. It is a diagnosis that is so full of unknowns. However, the love for your child IS known. The amount of joy they will bring to your life IS known. SB is a diagnosis, but does not define your family's life.
Loving a child with a disability is no different than loving a child without one!! It comes just as easy!