Tuberous Sclerosis Complex

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    A Letter To My Son

    Dear Wyatt,

    I try everyday to put myself in your shoes. I try to see the world as you see it. It’s hard, my baby. It’s hard to see what you go through. It’s hard to relive the last 7 years of hospitalizations, surgeries, doctors appointments, therapies..ALL of it. It’s hard to look at the future to know there is more. I cannot imagine how YOU feel. I wish you could tell me. I see you cry, you see me cry, sometimes we cry together. But remember that, I will always be here to let you cry on my shoulder, and I will always be here to cry with you.

    Your strength amazes me. That’s one thing I love reliving. You ARE SO STRONG. One thing I know for sure, whatever comes your way, you fight your way through it (literally ????).

    I wish I could change the world for YOU. I wish I could give you my voice. My health. My everything. If there was a way, I would. I wouldn’t trade you for the world, but I would change the world for YOU. I would make sure the only songs that were ever played on the radio were, Catch by Brett Young, How to Love by Lil Wayne, and Sit Next To Me by Foster The People. See? I pay attention. I can tell when you love a song. You kick my seat when the song is over and then I play it again and you’re happy. You have crazy taste in music, as do I and I think that’s why we travel so well together.

    I wish so badly you could tell us the decisions we make for you are the right one. At 7, you should have a voice to speak your mind and opinions. But no worries my baby, I will always be here to be that voice. And as long as you smile, I will know I’m making the right decisions.

    Love,

    Mommy.

    #TuberousSclerosisComplex #tscstrong

    #Autism

    #MedicallyComplexChild

    Post

    A letter to my son.

    Dear Wyatt,
    I try everyday to put myself in your shoes. I try to see the world as you see it. It's hard, my baby. It's hard to see what you go through. It's hard to relive the last 7 years of hospitalizations, surgeries, doctors appointments, therapies..ALL of it. It's hard to look at the future to know there is more. I cannot imagine how YOU feel. I wish you could tell me. I see you cry, you see me cry, sometimes we cry together. But remember that, I will always be here to let you cry on my shoulder, and I will always be here to cry with you.

    Your strength amazes me. That's one thing I love reliving. You ARE SO STRONG. One thing I know for sure, whatever comes your way, you fight your way through it (literally 😘).

    I wish I could change the world for YOU. I wish I could give you my voice. My health. My everything. If there was a way, I would. I wouldn't trade you for the world, but I would change the world for YOU. I would make sure the only songs that were ever played on the radio were, Catch by Brett Young, How to Love by Lil Wayne, and Sit Next To Me by Foster The People. See? I pay attention. I can tell when you love a song. You kick my seat when the song is over and then I play it again and you're happy. You have crazy taste in music, as do I and I think that's why we travel so well together.

    I wish so badly you could tell us the decisions we make for you are the right one. At 7, you should have a voice to speak your mind and opinions. But no worries my baby, I will always be here to be that voice. And as long as you smile, I will know I'm making the right decisions.

    Love,
    Mommy.
    #TuberousSclerosisComplex #tscstrong
    #Autism
    #MedicallyComplexChild

    Post

    When a Tuberous Sclerosis person wants to be a pro singer

    My name is Alexis Fernandes, I have 34 years old, since 5 years old that I used to say "I want to become a singer" but honestly I only thought on being a pro singer when I was about 14 years old. I am a person with TSC (Tuberous Sclerosis) so it is normal for me to have another diseases accompanied with TSC because that is what Tuberous Sclerosis is about. It is a disease that affect many parts of your body. In and outside. On my cass it only affected outside until now which is excellent, I am even considered one of the less affected with the disease. There are some people with this disease that already went through a wheelchair.
    So...from my 14 years on, I started to participate in contests and going to music schools in order to learn more, and now with 34 years old I am a producer (I even won an independent label contest as a producer but I had to refuse their contract because it would limit my actions), I am a singer, I am a dancer, a songwriter, a lyricist, I already did all that stuff. But it does not end here. Recently there was a friend of mine, who decided to make a documentary about me, about autism (yes I do have a little bit of autism as well) and how the music has an impact in our lives. It is a documentary very well elaborated by a medic that has been studying and living in Canada for a long time. Now she is back to work in my island and also she finished the documentary here. I hope you enjoy it.

    m.youtube.com/watch

    #Autism #TuberousSclerosisComplex #Music

    1 comment
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    Not super mom, just a regular mom with a chaotic life. #TuberousSclerosisComplex #SpecialNeeds #SpecialNeedsParenting #InfantileSpasms #Parenting #Epilepsy

    Special needs parenting comes with many challenges that vast majority of people don’t necessarily understand. We are out here quietly struggling and pretending to be strong because nobody wants to see us weak.
    Once someone hears that your child is different abled, people start to picture a incredible strong women who is a fierce advocate that doesn’t take no for an answer.

    While I like to think of myself as such, the reality looks very different. I’m more like a typical hot mess, coffee addicted, messy bun, dropping kids off in pajamas - frankly my house is a mess too and my memory really SUCKS! I would love to say how organized I am, flawless med schedule for my youngest, how I meal prep and everyone is on Keto gluten free whatsoever diet. But... I would lie– Our pancakes come out of a box. TADAAAAHH!! Wellll... Actually, cereal is more of a breakfast choice in my house.
    What I am trying to say is, NO, I am not the special needs mom you picture. I cry tons, my mind is packed with worries about break through seizures, forgotten meds, Tuberous sclerosis complex, arrhythmias and the list goes on.

    We are humans, we are moms who just want the best for our children. I think majority of mothers do. Bottom line is, we are not super heroes, we are fragile too! If you know a special needs mom, check on her. If you know someone is a special needs mom but you’re not close to her (yet), go talk to her. She will appreciate it. Some of us don’t get a lot of social interaction but we need it more than you can imagine.

    Post
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    I see you!

    I am not good at writing, in fact mommy really sucks at this!
    But... I want to tell you something

    I see you and I am sorry!

    I am sorry for the long days/nights in the hospital, you 3 didn’t know what was going on– this was way past anything you could’ve understood.
    I see you walking up and down that hall, Nathan - I see you Emily trying to keep Samuel calm and giving him half of your cookie. I see your concern for your baby brother Elijah, wondering why is he again in the hospital? I hear you (Emily) whispering into Nathan’s ear that ”only sick babies go to the hospital”. I see you, Samuel– craving for all of my attention and wanting to explore this big world, yet here you are sitting in your stroller in the NICU waiting area.

    You 3 just come along the ride - it’s a true roller coaster with Tuberous sclerosis complex. You never fail to smile and see the positive in each situation - we drove half way across the country so your baby brother could get the help he needs. Not once heard I complain anyone of you instead you were excited about the hotel pool. You need so little to be happy and yet you deserve the world! You 3 are truly special and I hope you will grow into remarkable adults with tons of compassion for individuals that don’t fit the “norm”.

    I could not be prouder of you - I am truly blessed with such kind hearted children.

    Just know,
    Mommy sees you and I love you! #TuberousSclerosisComplex #InfantileSpasms #Epilepsy #SpecialNeedsParent

    Post

    Meds, Condition, and I

    Anyone else struggle to know what is me or the meds and medical condition talking, partially because you’ve been on meds and had the condition for so long?
    #PersistentDepressiveDisorder #Anxiety #MentalHealth #PreexistingConditions #ChronicIllness #Medicationstruggle #TuberousSclerosisComplex

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