Do you think that I'll ever be able to just post photos/videos of Sophia w/o vile comments, ignorant questions, judgments & criticism? When a typical mom posts moments of joy, happiness, pride, love, sadness, fear etc. they aren't met with this experience, for the most part.😔 I even get criticized for being too positive or inspirational. I'm proud of Sophia and I like to share the pride that I feel for her. Would this be said to a proud mom of a typical child?

We made it to the hospital for surgery #27(reallyyyy early) and there were several emergency surgeries so we have to wait. Not sure when surgery will begin.

I’ll make a thread of this tweet when there are updates.

Thanks for the love! It makes a difference. #SweetSophia Stillllllllll waiting for surgery....⏱ but glad my girl is resting.

This is Ella. She’s been a part of our family for 7.5yrs. She was Sophia’s 1st nurse aide
I cried the night before she started bc it was the realization that I had to depend on others to help care for my child. This is when Sophia received 2ndary Medicaid bc prv ins wasn't enough Ella has been there through it all. She has been the most dependable person in our lives. Without Ella, I wouldn't be able to go to the grocery store or take my other kids to the park. Without Ella, we wouldn't be able to sleep through the night. She has changed our lives💜

In two weeks, we will have a production/film crew in our home. They’ll film our life for 3 days. This will air in 150 countries. You will see the pain, struggle, joy, and happiness but what you will see through it all is the love. You will realize your family isn't all that different from mine. Sure, we have to go through a lot more than most and Sophia needs a lot more to have a good quality of life but the love is the same.

I’ve been thinking about the damage the @GOP & @realDonaldTrump is causing me & parents like me who fight for their child’s quality of life everyday. It feels like they are terrorizing us. I’ve lost time with my family while fighting and gained increased anxiety & fear. In order to live a happy life with all that we go through, I’ve learned that I must live in the moment. I haven’t been able to do that over the last year and a half. I’ve had to think about my child’s future death & what would happen if she lost her healthcare. It’s been horrible

My daughter has epilepsy.

@realDonaldTrump & the @GOP want to allow insurance co. to deny preexisting conditions

This means no seizure meds & increased seizures.

This means no emergency seizure
meds to stop dangerous seizures.

This means brain damage.

This means death. Hey @realDonaldTrump & @GOP Have you ever watched your child’s body uncontrollably shake and jerk all over? Can you imagine an insurance co. denying coverage & losing the medication that decreases this from happening & losing the emergency meds that stops brain damage & death?

Throughout the fight to protect healthcare, ppl would say to me that the Nazis got rid of disabled ppl first. I never thought that could be possible in the US, until now. The @GOP has unveiled another attempt at ripping healthcare from the most vulnerable, my child included. Why are they hell-bent on making healthcare impossible to receive for people w/ pre-existing conditions? While kids are being ripped from their parent's arms, they unveil their attempt to harm disabled Americans, AGAIN!

Someone emailed me & said I shouldn't use my child for anything political.

I'm guessing she doesn't have a child whose life is threatened by the healthcare bills proposed.

My fight would have zero impact if I didn't share our life and how these changes would harm us. If I stayed silent and didn't share my story, many wouldn't know the impact that these harmful bills would have on our lives. People wouldn't know what it takes to care for a severely disabled child. Silence = Zero Awareness + No change.
I'm sure that's what the @GOP prefers.

I'm often met with stares of pity & discomfort when people see Sophia. Some people think that a child who is severely disabled is living a life of misery. I'd like to change that belief & invite you to open your eyes a little wider.

Sophia is the bold queen of our house. It may be hard to see at first glance but she has a huge personality. If you take the time to get to know her, you will see it. She has an attitude too! She gives a mean side eye and rolls her eyes at me when she thinks I'm being annoying! She is silly and makes us laugh.

Please join me & share why #MedicaidMatters to you.
⭐️I'd like to retweet your story.
⭐️It's important to educate people about Medicaid while destroying misconceptions.
⭐️Call your MOC, tell them why it's so important to you. #ProtectMedicaid
202-224-3121 Here's why it matters to me

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by @nataliew1020 view original on Twitter