Tag: cerebral palsy

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Putting My Dreams on Hold

When I was young, I always dreamed of being a writer.

I would write short stories. Mostly horror since Stephen King and R.L Stine were my favorite Authors.

At Fifteen, my dreams took a shift. I was blessed with an amazing little angel, but because of a medical mistake, my daughter suffered from seizures. Which led my daughter to being diagnosed with Cerebral Palsy.

I soon realized that my life was going to be consumed with a lot of therapy and doctor appointments.

My mom insisted I go back to school and graduate high school. My sweet mom took care of Ciara while I attended high school, graduated, and while I attended college.

I was unable to finish College due to Ciara’s needs getting more demanding.

After years of therapy appointments, doctor appointments, SSI meetings, fighting medicaid and her daily care, I felt depressed.

I did what I had to do but never went above and beyond for Ciara.

Ciara grew closer and closer to my mom because my mom gave her the attention she craved.

I was hurt that Ciara loved her more and couldn’t figure out why she didn’t love me as much as my mom.

After many prayers, God opened my eyes!

I realized, Ciara didn’t ask to be born to a single, Fifteen year old mom, and she sure didn’t ask for a medical mistake to take place that led her to having to struggle for the rest of her life.

I sat back and saw how strong my daughter is. I saw the impact she has on others in her life. I saw that my girl has a purpose in life, greater than I can ever imagine, and I was very blessed to be a part of her journey.

Ciara has the kindest heart, and the best outlook on life. She warms people’s hearts with her amazing smile. I am very lucky to have her call me mom.

Now, I live for her, to help make all her dreams come true, and to make sure she always has a reason to smile.

Of course, I still live my own life. I go out with friends, not as much as I would like, but life gets in the way of that.

I also make sure my son always knows that I love him. I try to spend extra time with my son and husband, so they don’t feel like my whole life is about Ciara.

Ciara is my best friend, and I can’t imagine my life without her. I am so proud of the young lady she has become. Ciara and I are a team so, when she succeeds, so do I!

Of course, I haven’t given up my dreams of writing. I have my blog, and I hope to one day, write a book about Ciara. My dreams are just on hold, just until God let’s me know it’s time.

Of course, I’m not saying you have to give up your dreams, if you have a special needs child. I know a lot of very strong moms that do it all. Putting my dreams on hold, was just what I felt was best for my child.

Don’t give up on your dreams, just put them on hold!

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Make Your Own Rules

Having a Special Needs child comes with its own set of difficulties. There is no rule book for how to raise a child with disabilities. Books about reaching children’s milestones do not apply to your child’s specific special needs.

Even learning about your child’s diagnosis does not help prepare you, because every disability is so different. For instance, Ciara has Cerebral Palsy and cannot walk or talk, but there are others with CP that can walk and talk normally. So finding the right information or help, can be exhausting.

I have learned that we have to make our own parenting rules and go by our own knowledge.

After 21 years, I am still learning about Ciara. I am still trying to figure out what I am doing and questioning if I am doing the right things for her.

I thought I had everything figured out and then..she became an adult! I thought getting her through school and puberty was my most difficult challenges. I was wrong. Now, I am learning how to transition her into adulthood and prepare a future for her. I feel as if her whole future depends on the decisions I make now for her.

There is no manual to tell us what to do to prepare our kids for the future, so we have to what we feel is best for our children.

On top of all the stress of raising a special needs child, there is always judgment and pressure coming from professionals. “What are you doing for her future?” “What is your next step?” The questions never stop coming! Seriously, I don’t know what I am doing with my life, then I have to tell them exact plans for my daughters future!

People never stop judging, you just have to get past all the questions and realize you are doing whats best for your child. People can make you feel like you are not doing enough for your child, but you are. You cannot completely exhaust yourself trying to be perfect, you just have to do what you can do.

There was a point in my life where I let Ciara’s disability control my whole life. Everything I did in my life was directed towards Ciara. I was was consumed in therapy appointments, Doctor appointments, special needs conferences, and lots of research.

I still do what needs to be done for her, I just don’t let it consume me. We have a life outside of her disability and we also have a nice balance of special needs activities. I feel she is happier now that I am not obsessed with her disability. She is not reminded constantly of her disability and it helps her to feel more normal.

People may judge me that I don’t have her in tons of therapies and Doctor appointments to consume our weeks, but I make the rules and do what is best for my family.

She still sees her Doctors when she needs to and I am still working on preparing for her future, but we are going to enjoy life in the process.

Make your own rules for your special needs child. Do what you think is best and forget about the judgments and questions. You know your child better than anybody, so you will make the best choices.

Don’t let your child’s disability consume you, enjoy life with your special needs child.

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Her Voice

As a special needs mom, you learn to be the voice for your child.

Whether it’s knowing their facial expressions, sign language, body language or their own language. You learn to know what your child wants and needs.

My daughter speaks to me frequently about life and what’s bothering her. People may not understand her words, but I do.

I am her voice and here is her words.

“I love it when people talk to me and include me in their conversations.”

“Just because I am silent does not mean I am not listening, I hear every word.”

“I do like attention but I do not like being treated like a baby. “

” I startle easy and it embarrasses me so please don’t make a fuss.”

” I love to be included, even if I can’t do everything, I try my best. “

“I like helping people, if you give me a task I will try my hardest to succeed. “

“I face every problem with a smile on my face, but that doesn’t mean I am not sad. “

” I may laugh in a serious situation or if I am in pain but that does not mean I am laughing at the situation.”

” I do wish I could walk and wonder why I cannot. “

” I want to do what others my age are doing, and cannot understand why I can’t. “

” I am scared of my future, and what will happen to me when my mom is no longer here. “

These are Ciara’s words, not mine. This is her voice.

Just because she sits silent in a wheelchair, does not mean she doesn’t have a lot to say. You just have to listen.

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Cerebral Palsy Awareness

Today is Cerebral Palsy Awareness day. Today I decided to share with you what Cerebral palsy looks like for my daughter Ciara.

On October 8th 1999 I gave birth to an amazing human being. She was full term and I was ready to be induced so I could meet my beautiful little girl. After a medical mistake and loss of oxygen my baby girl began having seizures which led to her brain damage.

After two years of her not meeting her milestones she was diagnosed with cerebral palsy.

There are many types of Cerebral Palsy. Ciara is Athetoid and spastic which is a little more rare than usual.
Athetoid effects her muscle movements and can cause uncontrollable body movement and also effects her speech. She also developed Dystonia because of the Athetoid CP which led her to having Deep brain stimulation surgery.

Spastic CP is more common and it makes her muscles stiff and tight. She has had to endure countless Botox treatments to try to help the spasticity in her muscles, but it never really helped in her situation.

Neither of the types of CP she has affects her intelligence, she is super smart and listens to every word spoken. She remembers songs and will sing them to you.

Ciara cannot walk and uses a wheelchair but she does not let that stop her. She competed in special Olympics, no limitations sports and leads a special needs girl scout troop.

At twenty years old Ciara has accomplished so much in her life, with a smile in her face. If only I could be that brave.

Ciara graduated from high school, she was nominated homecoming queen and attended her prom.
Her future is so bright. I know she can do whatever she sets her heart to, with a little help from mom.

Even though Cerebral palsy looks different in every person diagnosed, one thing remains the same. They all want to be excepted and included. They suffer greatly with smiles on their face and bring happiness to all they encounter.

I cannot image my life without Ciara. There has been many tears but a lot of smiles on this journey.