Transcript

Embracing The Language: Maria Barber at TEDxReno

i'm often asked to describe the experience of raising a child with a disability to help those who may not have shared this unique experience to better understand it and imagine how it might feel well it's like this you're going to have a baby it's like planning a fabulous vacation trip to italy you buy new guidebooks you make big plans coliseum the michelangelo david the gondolas in venice it's all very exciting and you might even learn some handy italian phrases after several months of eager anticipation the day arrives you pack your bags off you go plane lands several hours later stewardess comes out and says welcome to holland holland you say what do you mean holland i'm supposed to be in italy i've always dreamt of going to italy well there's been a change in flight plan holland is where you've landed and there you must stay so the important thing to remember is that you haven't been left in a horrible disgusting filthy place full of famine pestilence and disease it is just a different place so you go out and you buy new guide books you must learn an entirely new language and meet a whole new group of people that you would have never met it is just a different place less flashy than italy slower pace than italy take a step back you catch your breath after you've been there for a while and you realize holland's not so bad holland has windmills holland has tulips and holland even has rembrandts but all the while everyone you know is busy coming and going from italy bragging about what a fabulous time they've had there and for the rest of your life you will say that is where i was supposed to be that is what i had planned the pain of that loss will never ever go away because the loss of a dream is a very significant loss but if you spend your time mourning the fact that you didn't get to italy you may never be free to enjoy the very lovely and very special things about holland one of the greatest joys of my life was the birth of our daughter laila may we were here we had landed in italy here we were we take her home we do what most new parents do and learn about sleep habits and feeding schedules and we certainly read all the guidebooks now we're very natural minded when it comes to medicine in our house so i was weighing lila and measuring her at the naturopath every month solely for our journal purposes all the while she wasn't meeting the milestones that her peers were she had severe acid reflux and these critical food allergies that we had learned of but none of this made us stop dead in our tracks we just did what we could to help her overcome these issues and moved along weighing her turned out to be a blessing in disguise because at eight months lyla was 10 pounds 1 ounce at 9 months 10 pounds 2 ounces and at 10 months 10 pounds 1 ounce those are very critical stages for growth in an infant so the naturopath looked at me who's not a pediatrician goer herself and said you need to go to the pediatrician for me that was like running directly into a brick wall for me that was the day that i realized we were not in italy and that was the day that i realized that everything had changed for our family so we all have those days the loss of a family member maybe the foreclosure short sale of your home that you thought you were going to raise your family in forever the change in health status of yourself or a loved one we all have those days but what's most important is what we choose to do with that moment in time we all have the ability to resist or accept what we've been presented so even though we knew we weren't in italy we had no idea where we were supposed to be or where we were going but we just kept plugging along so we continued our travels stopping at stanford university of chicago shriners in sacramento and here locally having a battery of tests done on lila that you could never even imagine having done on your infant two mris two eegs ekgs nerve conduction test skull x-ray at this point we were buying new guidebooks we were learning a whole new language and meeting an entirely new group of people that we would have never thought we would have met all of those tests came back normal stumping us and the doctors so at the age of two and a half lyla was diagnosed with hypotonic cerebral palsy with choreoathetoid movements for lack of any other name so that for us cerebral palsy is typically found in an mri 99.9 percent of the time her mris were normal so we felt as though this was just a diagnosis that the doctor gave us based on the way she presents herself so we kept going on our travels because if this wasn't it we were missing something we looked at all the rare syndromes out there rhett syndrome turner syndrome dystonias all the tests coming back normal and at this point all of the signs in our travels were in a foreign language but again we all have those trips as well with twists and turns and bumps in the road that you would never expect thankfully we all also run across those people in our journey that bring us clarity in ways that you could never expect our first unexpected guide was our daughter nora during her pregnancy we started learning about umbilical cord stem cells and the possibility of banking them for lila at a later date and that was the greatest gift that my husband and i confit felt that we could have our siblings give each other there aren't many kids that can say i changed my sister or brother's life forever just by coming into this world so we decided this was something that we needed to do so about three months after nora was born lyla was three and a half at this point we started talking to doctors all over the world about stem cell treatments we learned everything we could about stem cells themselves and we became part of these parent-parent networks of these moms that had already administered stem cell treatments with their children the results that these parents had seen were out of this world you wouldn't even believe these stories those moms still today are my biggest support system and i would have never met them had we landed in italy so at that point lila's four and a half we decide we definitely need to give her this we'd be crazy not to give her this so we go to the neurologist and we tell him of our next step in her journey he says oh whoa whoa if you're going to do an alternative treatment we really need to make sure we haven't left any stone unturned so he goes back and he reviews lila's mris she's four and a half remember at 18 months and two and a half years and he comes to find that her cerebellum which sits at the top of her spine in the base of her brain is in fact smaller than normal here we are we have just landed in holland what an amazing feeling we actually knew what we needed to do for her we had the guidebooks we knew the language and we had already started meeting this amazing group of people that we would have never ever met all we had to do now was figure out how we were going to thrive in holland now for me at this point a shift happened in my purpose i was very clear in my new purpose and that was to give this little girl everything i possibly could so that she could become an independent thriving adult giving caring loving in this world and and maintain that independence for time to come i knew it wasn't going to be easy it hasn't been easy and i'm sure it won't in the years to come but what i also know is that there's nowhere else that i would rather be than right here right now so now my husband and i with this newfound purpose and official diagnosis can move forward in trying to figure out how in the heck are we going to afford a stem cell treatment we've made this really big decision but we don't have any backing for it so we thought about maybe starting a fundraising effort which was a little uneasy for us we're not very good at accepting gifts especially monetary gifts we're not the kind of people that ask for anything so thankfully unexpected guide number two comes along this man heard lila's story and gave us three hundred dollars for her to have a better future he didn't want a thank you note he didn't want any recognition as a matter of fact we still don't know this man today and he has no idea just how much he has changed one little girl's life forever he was in remission from cancer and felt as though he hadn't done enough good in his life he hadn't given back enough so lila was his first step to giving back and our first step as well because he gave us the confidence and the understanding that we could fundraise and it was okay and we could give lila what she needed so after eight months of fundraising she was able to have a stem cell treatment and attend an intensive physical therapy program so that fundraising was a big learning experience for us our community gosh embraced her like no other near and far there were fundraisers going on all over this country for lila and me here at home i started hand making these purses i have a background in interior design and i had a shelves full of fabric so i made 10 purses and i did one vendor show and i thought there's no way i'm ever going to do this again what am i doing well here i am two and a half years later i cannot keep these bags in stock i get custom orders monthly and i realized last year when we made five thousand dollars for her just on purses that this could be something bigger so i've met with a local manufacturer about manufacturing the bags we have begun that effort i've met with a local business coordinator about starting a non-profit officially because lila has given me this gift and that is that not only can i give back to her but i can give back to this community that has given us so much it's been unbelievable so that is the gift for me there's no doubt so i've also met with local retailers about getting the bags in their storefronts to really raise awareness and get this out there for lila so i want to encourage every one of you to take that bag in your life take that purse in your life and run with it you never know what can happen so where was i before lila i was in the world of interior architecture and design my passion no doubt i put my heart and soul into every project that crossed my plate for 17 years everything had its place i have a planner from beginning to end in every detail in the middle usually i like to know what i'm doing today and tomorrow in the next week in the next year but as we all know when we have kids those things don't ever hold true so those characteristics still apply for me today but at a little bit of a lesser level i'm better at being flexible with schedule and taking each day as it comes and lila herself has taught me to accept everyone as they are strive for whatever i want and never take no for an answer she's taught me to embrace this community that has loved us so much to be able to give back and she's definitely changed my perspective on life she's taught me the gratitude in the little things the bird that sits on the tree that she points out every day the two independent steps that she took in her room one night no one was around she motivated herself to do this and that was huge for her we don't take those little milestones for granted anymore because those little milestones for lila are massive so we try to celebrate them as much as possible where's lyla today oh man she has had one stem cell treatment and four intensive physical therapy programs which are four weeks long five days at five hours a day five days a week so imagine going to the gym five hours a day five days a week for a month straight we'd be like iron man so lila has done that four times prior to that she would walk with her walker all of her wheels locked we would have to turn her every which way she went she really didn't know where her body was in space she had very little control her processing speed was quite slow so you never knew if she was really ignoring you or if she was really going to answer your question after the stem cell treatment her processing speed after 10 days sped up so fast that she is able to answer questions like that she raises her hand in class she socializes with her peers on a more normal level this kid is amazing physically since four intensive physical therapy programs has gone from her walker wheels unlocked to her wheels fully locked to completely unlocked full control to the point where we were out last weekend and there was hopscotch on the ground and she wanted to play so she took a running start lifted one leg and kept cruising on her walker and did the hopscotch along the ground nothing stops this kid she then went from her walker to forearm crutches and now to quad canes which are very difficult for her to walk with she has far exceeded our expectations by 110 so remember at any moment in time something life-changing can happen to any one of us it's what you choose to do with that moment in time that really really matters you can have the choice to accept what you've been presented and i promise a whole new world of opportunity will open up this new language that we can learn can teach us true humility help us gain a greater sense of community change our perspective on life and take us on a journey that's far greater than we could ever expect so take that bump in the road mourn where you thought you were supposed to be accept where you are and i promise you will flourish now i'd like to introduce my husband matt and my daughter lyla hey hi hi you wanna wave and blow kisses oh okay big girl blow a kiss when you're walking out okay