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

You can follow For Special Needs here

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 Amanda Rivera: "This IS normal"

People always ask me , “ What’s wrong with him?” “Will he always be like this ?” “Is he going to die?” “ Will he be normal?” Many other questions as well. 

          As a mom more than half of the questions hurt your feelings. I know most people aren’t trying to be rude, but the ones that are need to be educated. My son has special needs, it does not mean he is dumb, he is incapable of being a kid, he will never be normal, there is nothing WRONG with him. Honestly we don’t know if he will always have a feeding tube or severe allergies, etc. In my eyes he is about as perfect as his older brother or anyone else in this world. Yes, he needs a little bit more attention sometimes, but he does not need to be babied or treated like he is “different.”  

Tristan’s main issue is that he can not eat like a “normal” child. He gets most of his calories by a feeding tube in his stomach. However, he is able to eat a few things such as; strawberries, grapes, rice, beans, carrots(chooses not to), and broccoli . Rice gives Tristan many different options and variety of things to eat. We can make a cake , pastas, pancakes, bread, etc. Tristan is battling Eosinophilic Esophagitis, he is severely allergic to most foods. 

          Is it hard to cope some days? Yes, on days where Tristan has no energy, vomits , or breaks out in hives for no known reason. I feel like crying some days or ripping out my hair. I know I need to be strong not only for Tristan but for Aiden his older brother as well. Some days are harder than others, especially when we are in the hospital over and over for weeks or even months. Watching your child around other kids that can eat anything they want, birthday cakes, candies, pizza, ice cream, and many other things hurt. This is just some of the things that I come across on a daily basis. You learn to cope, you become stronger and stronger each day, and most importantly you get your child and family through anything and everything your faced that day, week, month, or year. 

You can follow Tristan's page: Here

You can follow Alphae Toys for Special Needs: Here

Don't Dis My Ability- Guest blogger Nicole Small

My name is Nicole and I just turned 24. I have Spina Bifida… more specifically, Myelomeningocele with Hydrocephalus.

When I was growing up, I didn’t really have that many friends that I could relate to or who could relate to me. I felt that it was because of my disability. My parents and my older brother were the only people who I could turn to for guidance and advice on things, but they really did not understand what I was going through with my disability or just life in general.

I found it very difficult to succeed in school, both because I had a learning disability and because I was in and out of school due to check-ups or having yet another surgery. This made it hard to make friends. In addition, when I would have a complication from my Spina Bifida they would make fun of me.

When I was younger, I felt that other children either didn’t like me or did not have the same interests because I was in a wheelchair. I felt that people who saw my wheelchair automatically thought I could not do anything in life whatsoever… that I would just be in a wheelchair and have someone take care of me for the rest of my life. Granted I do have the help of my parents, but it really is not 24/7. As I am getting older I am learning that people just do not have the knowledge about Spina Bifida or are misinformed. All they see is a wheelchair. But it is more than just a chair! We are strong human beings because of what we have had to go through both medically and socially.

Over the past year or two I have really embraced my abilities and have tried to figure out ways I can help others learn more about Spina Bifida. I have found great support groups via Facebook. For Special Needs is also a great outlet for those of us who have Spina Bifida because of the sense of community. We all know what the other person is going through, and we can lend a shoulder to lean on and ears to listen if needed. It’s a great place to make friends with individuals who share a common interest. We need that community to provide a safe social outlet!

You can join Alphae Toys for Special Needs community here

You can contact Nicole here

For Science!

Three's a Crowd: Parenting a Special Needs Child. Part Two

 If you ask a mother what sex she had hoped her child(ren) would be, most likely she’ll say,  “I didn’t care as long as I had a healthy baby”. Sometimes, however, things don’t go quite as planned, and mother’s find themselves digging deep for strength where they thought there was none. 

The two mom’s highlighted today had to do just that. Each of their children was born with special circumstances that most have the luxury of never facing.  Not only do they face their circumstances with brave faces, but they also have other children to tend to as well. Physical and mental energy, time and money are all things given to children naturally, but a special needs child may need just a little more. How do you give a child all of that when life continues to move? More importantly, how do you ensure your child gets all the love and attention they need when there are others that ache for the same amount of attention and love?

Amanda Rivera has two beautiful sons, is married, and splits her time between amateur modeling and being a homecare facilitator. From the outside Amanda is in a great circumstance. You would have never known that most of her family time is spent in hospitals and emergency rooms, fighting insurance companies and doctors, because her youngest son Tristan was born with eosinophilic eosphagitis. Eosinophilic Esophagitis, or EE is an allergic condition of the esophagus. Basically, Tristan has food Allergies. A lot of food allergies. This goes beyond your typical peanut or gluten allergy; Tristan must be a feed a special formula through a feeding tube in his stomach to sustain his health. He is limited in the food he can actually eat because there are so few choices. Peanuts, soy, gluten, dairy, meat, tree nuts, corn, this is the short list of some of Tristan’s Allergies. 

Amanda highlights milestones on her facebook support page Battling Eosinophilic Esophagitis, Tristan’s story. “Day one... ate a whole apple slice... let’s see how this goes”, and the pitfalls, “Tris is in pain again, I wish I could take it all away..”, but recently she opened up to talk about her oldest son Aiden. Amanda talks about how hard Tristan’s disease is on Aiden, and how he hates watching his brother suffer. He is only 8 and does not understand, but he knows he wants his brother to get healthy.“We try to bring him with us to less serious appointments. He didn’t understand when he was younger, but as he has gotten older he sees it and it upsets him.” 

When asked how she balances all of it Amanda said that, “Aiden actually came up to me and told me that he was not happy. I was devastated. I did not realize that he felt that way. I knew something had to be done. Jose (her husband) and I try to have days exclusively for Aiden. Whether it is a movie, taking him out to eat, whatever, we try to give him as much individual time as possible”. Individual time can be hard, but Amanda knows that it is worth it. 

“This disease affects the entire family, not just Tristan.” Amanda went on to talk about how she wonders if Aiden holds things in so he doesn’t seem selfish, but that is not what she wants for her son. “They both need attention and love and I’m going to give it to them”. Her best advice? Balance. “It is hard, and it’s not always going to work out the way you want it to, but putting the effort to recognize what you are capable of doing, and what you have accomplished is important. Don’t put yourself down”.

She’s taken to yoga and going to the gym to battle the mounting stress that occurs on a almost daily basis. Sometimes Amanda worries that she will not get the opportunity to go back to school to become a nurse, but she knows that she is doing the right thing and the opportunity will come when the time is right. “You just have to modify your plan and not beat yourself up because it didn’t go the way you wanted it to the first time around”.  

Cathy Wimple is a charming woman. She is funny and warm, and smiles often. We met recently for Alphae’s spring photoshoot and I immediately took a liking to her. Her daughters, Taylor and Brooklyn, were shy at first, but opened up and played as the day progressed. When the shoot was done Cathy began to open up about Brooklyn’s medical condition, Interrupted aortic arch & ventricular septal defect,a heart condition she has had multiple surgeries for. Heart defects like Brooklyn’s are the most common birth defects and are the leading cause of birth defect related deaths. 

Cathy praises the doctors and nurses at Michigan University Hospital as the main reason Brooklyn is still here to bless us with her sweet smile and head full of blond ringlets. “The hospital becomes a second home, and being able to trust the nurses and doctors that you see on a regular basis is an important factor”. The conversation went on an hour after the shoot was done. Cathy, talked about being in the hospital with her daughters and laughed when she understood my feelings of the dreaded “emergency cell”, a cell phone given exclusively to parents when a child is undergoing major surgery. 

Her daughter Taylor is protective of Brookyln and included her in all the games the kids played, making sure she felt comfortable and that she noticed all the different types of toys.

“I have worried that my oldest, Taylor, will end up having some kind of resentment towards her little sister, Brooklyn. With Brooklyn needing so much medical attention and therapies, a lot of our time is consumed with that.”. This seems to be a common feeling among parents of special needs children and Cathy seems to have found the important factor in making sure Taylor feels the love she and her husband have for her. “We strive to always make Taylor a part of it all. We talk about it, the processes of how and why we do things. She loves to help with the at home therapies we do with her sister, such as showing her word cards and trying to help her form the words to talk. “

From what it seems like, Cathy is doing a great job. Constantly she is updating her status or posting pictures of the girls playing together or funny things that were said. Her worries are not superficial at all, but the credit she deserves for her efforts is monumental. While like any normal household the girls may sometimes quarrel, they are in fact very loving and giving to each other like families can only hope for. 

Cathy knows that “ Finding a balance can take time. It's trial and error to see what does and doesn't work for the entire family unit.” She goes on to advise other families facing similar circumstances that, 

“The best advice I can give is to take it one day at a time. Some days will be tough, and push you to your limits. You have to keep in mind that tomorrow will be a new day, and that new day might just be the brightest day that finally puts you on a path in the right direction”.

Truer words could not have been spoken. 

Three's a Crowd: Parenting a Special Needs Child. (Part One)

Surgery.

It’s one of the few words I remember from Alejandro’s first appointment to the orthopedic surgeon. He was only two weeks old when we made the Michigan University Hospital our second home. Alejandro was born with  a severe case of congenital talipes equinovarus, otherwise commonly known as club foot. His right foot seemed to be ok, as far as club foot is concerned, but his left, the leg curved out like the limb of a bow, seemed to worry the surgeon, and we thought he might need corrective surgery on the entire leg. 

Alejandro's first attempt at transitioning to just Dobbs Braces

The surgery didn’t come till years later. Week after week of twisting his feet into cast. His crying sending me into a fit of uncontrollable giggles that resulted in more than one dirty look from nurses or physicians. There were braces, and cast, corrective shoes, custom plastic FABs, special sneakers, physical therapy, and exercises. Once a week we made the long trip out to the hospital, and once a month my entire day was consumed with not only twisting and crying, but MRIs and Ultrasounds that went on longer than necessary, because he was still a baby and did not understand how this scary situation was meant for him. 

When he was four the surgery finally came. By then Alejandro was a pro and wise to his situation. He knew he couldn’t run or play like the other kids without falling or getting tired easily, but he did it anyway. He started walking at nine months and has been unstoppable ever since. I should have known this powerhouse of a kid would take it like a pro, but thinking about him in surgery was too much for me. 

Seeing him go under, and having to carry around the tell-tale emergency hospital cellphone had me chain smoking outside the hospital for the two and half hours it took the surgeons. When they finally took us back to recovery and told me his spinal tap had not taken and he was going to be in a severe amount of pain, my heart hurt. The recovery room was crowded with screaming children fresh from surgery, and I found my little man at the very end of the long room surrounded by a gaggle of cooing nurses. His big blue eyes dampened with tears as one of the nurses rocked him gently. 

Alejandro on the trampoline despite a serious amount of "No's"

When we received a room, another child was already in there fast asleep. His head was shaved and neat stitches zig zagged across like a well loved rag doll. The few days we were there I learned that he had just received brain surgery for his epilepsy. His mother was going through a divorce because the father could not deal with the situation. She ran back and forth between her job and the hospital, enduring little to no sleep, and to top it all off she also had another child. 

That’s when it hit me.

Mother’s, like that woman, were epic beyond all belief. My situation was minor in comparison. Yes, it is a heart wrenching situation to go through medical procedures with a young child, but there is always someone out there that is going through their own private struggle that makes you look like you are crying in the baby pool while they swim out in the ocean. I still could not imagine going through Alejandro’s procedures with multiple children. I felt worn down all the time and my tiny view of the world was focused only on catering to his needs. Surely if there were two children, one might suffer the injustice of the little bit of attention I had left. 

Alejandro is great now. He runs and plays after relearning how to walk. After a ton of physical therapy, you would have never guessed. The image of that mother, however, keeps me humble and appreciative. 

Alejandro age 6

Tomorrow I’d like to dedicate part two to other parents, like that mom, who have children with special needs and are superheros in my minds eye. They do it all with multiple children, and make it look easy even when it isn’t. 

Sweet treat

I love holidays.
Not just most of them, or the big ones, but all of them. National pie day, halloween, christmas, teacher's appreciation day.. the list is enormous. Maybe it's the kid in me, or the idea of making a day a little more special than the rest, but whatever it is,  I can never resist finding new ways to treat little chef.
These white chocolate covered strawberries are perfect for  parents who want to make a healthy alternative to all of that candy, and maybe (just maybe) you can let the little ones in on the project.

aren't they adorable?

If you're not so much into DIY you can always buy a bunch from Harry and David