Guest Blogger Nicole Small: "The Stereotype Of Paraplegics"

Growing up I often wondered what I would become when I matured into the adult that I have become today because I never saw many people much like me in public during my child hood this could have been because of different circumstances such as that fact that I was a specific place at a certain time. I then would go back to these various places i.e. restaurants and movie theaters and still wouldn't see anyone much like me. This made me think...is it because people just find it difficult to go out into the world because of the obstacles they may face due to their specific disability or is it because of the fact that they were afraid of the looks and rejection that they would face from society? I would very much agree with the fact that people in my situation find it very difficult to be socially excepted by people in today's world. Do I fault those people who glance at me with a puzzled look upon their faces? No, because they don't know what it is like to be me. The only people who know what it is like to be a disabled person is obviously the disabled person themselves then their family and friends. Growing up I would have jumped at the chance to educate those people who were to scared to ask what was wrong with me because I feel it would have opened up a line of communication and an opportunity for them to learn something knew about someone whom they've never met before. During my childhood it was very hard to have to deal with the stares from strangers because much like them I too was trying to figure out myself. I always knew I was different from my peers because I couldn't run onto the playground during recess and I couldn't do specific activities during PE. I learned to become at peace with this because I knew I was made this way for a specific reason and it has taken me 24 yrs to figure out how the best way how to deal with what I was given because I had to deal with not only my disability  and everything that came with it but I had to deal with everyone around me who didn't know me and what I was capable of, they just saw a little girl in a wheelchair and thought I was hopeless and helpless and would stay this way for the rest of my life. I am hear to tell you to please don't believe what people think of you if they do not know anything about your personal life if they have no value in your life they their opinion or what they think of you should have no value to you and you should just brush it off and go on with your day because what doesn't kill you only makes you stronger. God surrounds us with people who understand us and he also puts people in our path so we can teach them something knew and we are the only people who can fulfill that job for him. God puts people on this Earth for a reason, he has a plan for us and it may take some time for us to come to terms with what our mission in life is. I feel as though God's mission for me in life is to help other's who are like me. My challenge to all of you in this next year is to take a few minutes out of your day and reach out to someone whom you don't know that quite well and share something about yourself, it only takes one minutes to make an impression on someone and a first impression can make a world of difference on someone. Make it a positive difference and put a small upon someone's face who maybe having a difficult day even though they haven't expressed it verbally towards you.

Forever Thankful

Major holidays always seem to surprise me. Not in the way of the last minute shopper, but in a way that I know a lot of families can relate to. Every year I think "Wow, we made it through another year and we're OK.".

I'm thankful for every opportunity I get to say that. Every chance I get to prove to my son that even in our worst of situations we can get through it together, as a family, and we will truly be ok.
We are in a much better place than we were two years ago, and every year since that year we have gotten stronger, bonded closer, and I have become a better mother because of the things he has taught me.

This year we spent Thanksgiving with the Salvation Army, handing out meals to the homeless. This is not a new feat for me, but it's a first for little man, and although I know I've raised him well, I was unsure of what he would say or how he would act. He does not have a filter, does not get that he may say things that can hurt other's feelings when to him it is just the plain and obvious truth.
He did more than impress me today, he astounded me. With no hesitation he walked up to people, asking them if they were hungry, and would they like a meal. He interacted with people and made jokes.  Suddenly I no longer saw my baby, but a little boy and the future young man he would be.
He made me proud that I was the one lucky enough to raise him.

This year I am thankful for many things, but I try to be thankful every day. I have a list I've taped months ago to my door to remind me why I should be grateful, why it is important to stay humble and never forget where I have been no matter how far I go. Every day has granted me new opportunities and I speak to more and more people that are leading this company toward an extraordinary path of success.

I don't believe in luck, just fate, so today I am thankful for that. Thankful that I always cross paths with people who have exactly what I need, because I know many people do not get as many opportunities as we have. I can appreciate it, because I know eventually I will be able to give back through larger acts, but for now I am grateful that I can give back in any small ways I can. I am especially thankful for people and family who see me as I am capable of becoming and not just who I am now. Without their confidence and help I know this road would be far less paved. That means so much and for it I owe them the best possible version of myself.

Happy Holidays everyone.

Love,
Danielle

Miranda Smith: Happy Thanksgiving

Today as we celebrate Thanksgiving, I have to say that there is so much to be thankful for. I am thankful for my salvation and for the love of God. Without him in my life I would not be able to get through my day to day life. Next, I am thankful for an understanding and compassionate husband. He is truly my rock through everything. Without him, life would not be the same. Also, I am thankful for all three of my kids. They have shown me how unconditional love truly works. They may drive me batty sometimes but I would not trade that for the world. I am thankful that my kids have struggles. Dealing with the things that we have to deal with has made us all stronger. It has helped us learn to lean on the love of God. I am blessed to have all the struggles that I have in life and I wouldn’t have it any other way. I hope all of you have a great Thanksgiving and don’t forget to thank the one who really matters, God. Without him, nothing would be possible. Happy Thanksgiving!!!!

Amanda Rivera: Be grateful for everything.

Reality has hit! After five years of having a son who has Eosinophilic Esophagitis I have realized many things about life. Life is too short to worry about the little things. I am reminded each time we end up in the hospital how precious life really is. This is the time of year to be thankful for life and all that it has to offer. 

We tend to take life for granted sometimes. I know I definitely do! Life is a precious thing, we are lucky to be happy, healthy, food in our bellies, clothes on our backs and a roof over our heads. There are many people in this world that don’t have anything. I tell Tristan that even though he has to go through so much at such a young age he is strong and he should be thankful for what we do have. I know many children that have Eosinophilic Esophagitis and they are strictly tube fed, no safe foods at all. Tristan is lucky and I say that to myself every day. Things could always be worse. I do not want anyone to feel sorry for our family for having a special needs child. This does not and will not define us as a family or even Tristan as a person. 

Tristan has been having more bad days than good, he has been getting upset more often and having more melt downs. I know it is hard for our five year old to understand life and to always be happy. He usually is such a happy child and I miss it. As a special needs parent I try to guide him in the right direction. I want him to live a happy and healthy life and as his mother and his advocate I have to do anything I can. I remind my boys all of the time that we need to be thankful for what we have in life. I want them to know that life is a gift. 

Think about what you are thankful for, not only for this time of year but for the entire year. When times get tough think about everything that you have, your families, friends, food, a place to live, clothes, etc. Realize that there are people without a place to stay warm in the winter, food in their bellies, clothes on their backs, or even their health.

My point of this post this week is to be happy for everything you have and the bad days will not seem that bad anymore.  

You can follow Tristan's page here

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Amanda River "Accidents happen"

When you have a special needs child you always need to stay one step ahead of the game. I have always thought that I was ahead until this week when Tristan surprised me. He is five years old and not aware of how dangerous eating something can really be to him, even though we have talked to him numerous times about the possible reactions that could happen if he did have something he should not. 

This week Tristan took a “gummy” from another child in the cafeteria. Now it was not a severe reaction, but he did have some obvious issues after that. I did not know until he came home clearing his throat. I had to ask him myself if he was ok and why was he clearing his throat. Tristan told me his friend gave him a “gummy’, he took it and ate it because it looked just like the ones that he normally eats. I explained to him that he should not take anything from anyone unless it is what I or his father packed for lunch or the snacks that his teacher has for him. Tristan was in tears thinking that he was in trouble or it was going to hurt him more. Luckily a little Benadryl and some water helped his throat clear up. 

Now I have realized I can not expect all of the school staff to watch him like a hawk and it hurts that I am not there with him. I want him to feel as normal as he can be even if it means a few accidents and reactions here and there. I can’t help but think; could the next reaction be worse? I pray it is not, and I will continue to make sure he knows not to take anything from anyone. Unfortunately I feel that I can not and will not put my child in a bubble. I will not shelter him and scare him for the rest of his life. It is hard knowing that I can not be by his side every day for the rest of his life. I worry daily but I can not have this disease consume and ruin our lives. We are not going to let something like this run our entire world. This situation just taught me that I truly can not always be there and I can not keep him from experiencing the world around him. 

Miranda Smith on Chronic Illness

Janiyah was my biggest baby that I gave birth to and now she is my smallest child right now. Ever since she was 2 months old she would get bronchiolitis. She would get it once a month up until she was about 8 months old. Then two months later she got walking pneumonia for the first time that took three rounds of antibiotics to clear up. When Janiyah turned 5 months old, she was hospitalized for the first time for five days because she got the flu and got severe bronchiolitis as a result. Now she only weighs 18lbs 9.5 oz at the age of almost 14 months. We are going through testing trying to figure out what is keeping her from growing on top of why she is getting so many lung infections. As a result of her health, I cannot work. This puts a huge damper on our finances, but if she goes into daycare, it could give her a serious lung infection that in turn could kill her. People don’t understand that she is as sick as she is because she is not sitting in a hospital 24/7. A child does not have to be constantly in a hospital to be considered a special needs child who gets chronically ill. It can be frustrating as a mother watching your child suffer time and time again because she keeps getting sick. I am praying that they can figure out what is causing all of this to be able to help her better

Guest Blogger Nicole Small: "If God got us to it, He'll get us through it."

It was in August of 1989 when my mom gave birth to me. This is also the day when both my mother and father received the news that their newborn baby girl had Myelomeningocele. Up until then they thought everything would be normal like it had been when my mother delivered my brother 8 years prior.

Right after my birth I was air lifted to All Children’s Hospital in St Petersburg, Florida, so the lesion on my back could be repaired. This is also when my VP shunt was implanted. I was then sent to the Shriner’s hospital in Tampa, Florida, for further observation due to the severity of my Spina Bifida.

 At the time of my birth, my parent’s had never heard of Spina Bifida and were at a loss and felt helpless. All they wanted to do was “fix me” and make sure I would be healthy. The physicians at Shriner’s hospital stepped in and reassured my parents that even though I had a tough road ahead of me, I would be okay. They did tell my parents that because of the severity that I may not live through the night, but the next day came and the next day followed, and I was still here.

 The doctors and nurses told my parents that as I grew older, more specifically when I turned the age of thirteen, that I would no longer be here because my lungs and heart would be punctured due to the way my spine was curved (from scoliosis). My thirteenth birthday passed and then my fourteenth, and my parents realized that no matter what the doctors had told them, I would be able to live a full life despite my being paralyzed.

 My life growing up was not a bed of roses, but no one’s life is perfect. During my school years I ran into some difficulties. Learning disabilities and frequent hospital stays meant I had to miss out on school assignments. This caused me to fall behind, but I never gave up. It was always one of my goals to finish school and go to college. In 2010 I earned a career diploma in Medical Coding and Billing.

 Throughout my life my parents have stuck by me through the good, the bad and the ugly. They never once let me see them break down, and they never let me feel sorry for myself. They knew I had a difficulty road ahead of me with lots of bumps along the way, but my parents and my older brother were along for the ride the entire way. My parents never once gave up on me. No matter what was put in front of us, we faced it together head-on, tackled it, and came through the other side better people.

 I think of Spina Bifida as a blessing, I do not know where or who I would be if I wasn’t born with this disability. It has definitely made me a strong person. I’ve never felt the need to ask “why me?” My parents have sacrificed from day one by working around the clock so that I could have the best life possible. I am happy to say that today, I have the best life I could ever ask for… I can make memories with my family and share my story with others. I want to provide that little ray of hope for someone who may not understand that having a disability should not get us down. Be happy to be alive and Carpe Diem, because you only live once!