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I’m Thankful I Was Chosen To Be The Mom Of My Special Needs Son

Being a special needs mom means being someone that's always aware, and someone that's the first to advocate for them.

As Told To

As Told To is a recurring segment on xoNecole where real women are given a platform to tell their stories in first-person narrative as told to a writer. If you have a story you'd like to share but aren't sure about how to put it into words, contact us at submissions@xonecole.com with the subject "As Told To" for your story to be featured.

This is Ebonie Baxter's story, as told to Charmin Michelle.

My son is five years old and he's had over 100 bone fractures.

Yes, 100.

Byron Baxter Jr. entered this world in 2014, through emergency C-section, just in time for the new year. He came in fighting at six weeks premature, under four pounds, and had two broken legs, a broken arm, and a fractured rib.

My husband and I were so afraid. And not only because of his birth complications, but we just weren't sure if he would survive at all.

I was still pregnant when doctors told us Byron would be born with a disability. But to be honest, I took it all with a grain of salt. I had suffered five miscarriages in the past and doctors said that I wouldn't be able to have kids anymore—I was just happy for the chance to be a mother again. Despite my excitement, my husband and I knew that we would have to dedicate ourselves to Byron's needs.

He spent 6 tough weeks in ICU when he slowly began to show signs of improvement. He was such a trooper. And although his hospital stay was overwhelming for my husband and I, we continued to put forth our best efforts to remain positive.

Byron was formally diagnosed with Osteogenesis Imperfecta, a condition also known as Brittle Bone Disease. It's a rare disease that causes his bones to fracture and break easily.

Think of him as a thin layer of glass, or very fragile glass, that requires mindful handling.

Courtesy of Ebonie Baxter

Many, many days and nights were spent researching and preparing for him; expectations and best advice. We didn't have many outlets outside of our doctors, so online research became our go-to. We made it our sole business to care for, and protect, Byron however long God allowed us to (which according to doctors, wouldn't be long).

And before we knew it, due to his increasing progress, we were discharged and headed home.

Adjusting to home life was difficult. We could no longer rely on the comfort of the hospital as our bedroom, and we had to work out best practices on our own.

By the time my youngest son, Blake, joined our family, we had mastered our rhythm. Blake entered this world without any complications, so even though he's younger, he's often confused as the oldest of the two. As he's grown, we've explained to him the importance of being careful with Byron due to his fragility. And he has grown to be such a great little brother to him—sometimes even I'm surprised by his gentleness. Their relationship is so precious to me, a different kind of love.

As for Byron, Byron is a character! I mean, you guys see it, he's so full of energy and light. He's positive and loving; always happy. He has the heart of a lion and is literally the bravest person I know. And he loves WWE. We monitor everything he watches because he's such a sponge, but he has some of his funniest moments when watching. There's this saying that some of the wrestlers say, "You need an attitude adjustment." When Byron feels that someone is grumpy around him, out of nowhere he'll say "You need an attitude adjustment" in his cute little voice.

I love his little voice, I can always hear it.

My background isn't as colorful, but I wouldn't change it. I was born and raised in NYC, now residing in Georgia. I met my husband 8 years ago and we've been teammates ever since. I've turned lemons into lemonade more than I even care to count—probably more than the average, and I'm appreciative of all my life's experiences, good or bad. Other than that, I'm just a regular mama bear and wife who loves her family.

Courtesy of Ebonie Baxter

Our lives changed when one day, I decided on a whim to upload footage of Byron—just to showcase the joy we experience from him everyday. His videos started to go extremely viral; they gained more and more views, and before we knew it, our family had created an online community of over 1.3 million cyber aunts and uncles.

The world fell in love with my baby the way that I have. And now people are just happy to have the access to his journey everyday.
With this, comes its own unique sets of challenges. As much of the good we experience, we also have to take on the bad, and adjusting to the attention has been testing at times. It's funny because my husband says I am intense when it comes to my family—and he's absolutely right, I'm not a passive mom. I've had moments where I've had to request new doctors and nurses when the ones working with him weren't up to standard. I've had to frantically ask fans who were only excited to meet Byron, not to touch him if they see us out or at family events. And I've had to dismiss negativity on a daily basis. It's all in stride, of course, many have incorrect assumptions. But because we have so much going on behind the scenes that we don't show, my understanding of how this online world can be, keeps me focused on my family.


To take time for myself, I seek refuge in my bathtub. I'm a firm believer in soak therapy; it can be the cure for a hectic day. I love taking time for myself for all the various self-indulgence and vanity interests that us ladies enjoy. But mostly my happiness comes from simply being thankful that my children are such beautifully happy children, and that they are afforded the experience of having the proper childhood that I never had.

Nothing is greater.

I'm often asked what life will be like for Byron as he gets older and transitions into adulthood, and my response is always the same: Life will be great.

Being a special needs mom means being someone that's always aware, and someone that's the first to advocate for them. It doesn't matter if anyone has doubts or feel that they can speak on any of their obstacles. As long as your child is protected, safe, and full of love, let everyone know that for your baby, life will be great.

So, moms, aunts, grandmothers, and anyone who's blessed to care for a special needs child, count on God. Or count on whatever higher power you believe in to make the best decision for your child. Be their voice, even if it makes you look crazy. Doctors told us that Byron would be deaf. We told them he would hear pins drop. They told us he'd be blind. We told them he would have the sight of an eagle. They said my baby wouldn't make it.

We said...just watch.

To learn more about Osteogenesis Imperfecta, you can visit the OI Foundation. To keep up with the Baxters, follow them on Instagram or visit their website.

ACLU By ACLUSponsored

Over the past four years, we grew accustomed to a regular barrage of blatant, segregationist-style racism from the White House. Donald Trump tweeted that “the Squad," four Democratic Congresswomen who are Black, Latinx, and South Asian, should “go back" to the “corrupt" countries they came from; that same year, he called Elizabeth Warren “Pocahontas," mocking her belief that she might be descended from Native American ancestors.

But as outrageous as the racist comments Trump regularly spewed were, the racially unjust governmental actions his administration took and, in the case of COVID-19, didn't take, impacted millions more — especially Black and Brown people.

To begin to heal and move toward real racial justice, we must address not only the harms of the past four years, but also the harms tracing back to this country's origins. Racism has played an active role in the creation of our systems of education, health care, ownership, and employment, and virtually every other facet of life since this nation's founding.

Our history has shown us that it's not enough to take racist policies off the books if we are going to achieve true justice. Those past policies have structured our society and created deeply-rooted patterns and practices that can only be disrupted and reformed with new policies of similar strength and efficacy. In short, a systemic problem requires a systemic solution. To combat systemic racism, we must pursue systemic equality.

What is Systemic Racism?

A system is a collection of elements that are organized for a common purpose. Racism in America is a system that combines economic, political, and social components. That system specifically disempowers and disenfranchises Black people, while maintaining and expanding implicit and explicit advantages for white people, leading to better opportunities in jobs, education, and housing, and discrimination in the criminal legal system. For example, the country's voting systems empower white voters at the expense of voters of color, resulting in an unequal system of governance in which those communities have little voice and representation, even in policies that directly impact them.

Systemic Equality is a Systemic Solution

In the years ahead, the ACLU will pursue administrative and legislative campaigns targeting the Biden-Harris administration and Congress. We will leverage legal advocacy to dismantle systemic barriers, and will work with our affiliates to change policies nearer to the communities most harmed by these legacies. The goal is to build a nation where every person can achieve their highest potential, unhampered by structural and institutional racism.

To begin, in 2021, we believe the Biden administration and Congress should take the following crucial steps to advance systemic equality:

Voting Rights

The administration must issue an executive order creating a Justice Department lead staff position on voting rights violations in every U.S. Attorney office. We are seeing a flood of unlawful restrictions on voting across the country, and at every level of state and local government. This nationwide problem requires nationwide investigatory and enforcement resources. Even if it requires new training and approval protocols, a new voting rights enforcement program with the participation of all 93 U.S. Attorney offices is the best way to help ensure nationwide enforcement of voting rights laws.

These assistant U.S. attorneys should begin by ensuring that every American in the custody of the Bureau of Prisons who is eligible to vote can vote, and monitor the Census and redistricting process to fight the dilution of voting power in communities of color.

We are also calling on Congress to pass the John Lewis Voting Rights Advancement Act to finally create a fair and equal national voting system, the cause for which John Lewis devoted his life.

Student Debt

Black borrowers pay more than other students for the same degrees, and graduate with an average of $7,400 more in debt than their white peers. In the years following graduation, the debt gap more than triples. Nearly half of Black borrowers will default within 12 years. In other words, for Black Americans, the American dream costs more. Last week, Majority Leader Chuck Schumer and Sen. Elizabeth Warren, along with House Reps. Ayanna Pressley, Maxine Waters, and others, called on President Biden to cancel up to $50,000 in federal student loan debt per borrower.

We couldn't agree more. By forgiving $50,000 of student debt, President Biden can unleash pent up economic potential in Black communities, while relieving them of a burden that forestalls so many hopes and dreams. Black women in particular will benefit from this executive action, as they are proportionately the most indebted group of all Americans.

Postal Banking

In both low and high income majority-Black communities, traditional bank branches are 50 percent more likely to close than in white communities. The result is that nearly 50 percent of Black Americans are unbanked or underbanked, and many pay more than $2,000 in fees associated with subprime financial institutions. Over their lifetime, those fees can add up to as much as two years of annual income for the average Black family.

The U.S. Postal Service can and should meet this crisis by providing competitive, low-cost financial services to help advance economic equality. We call on President Biden to appoint new members to the Postal Board of Governors so that the Post Office can do the work of providing essential services to every American.

Fair Housing

Across the country, millions of people are living in communities of concentrated poverty, including 26 percent of all Black children. The Biden administration should again implement the 2015 Affirmatively Furthering Fair Housing rule, which required localities that receive federal funds for housing to investigate and address barriers to fair housing and patterns or practices that promote bias. In 1980, the average Black person lived in a neighborhood that was 62 percent Black and 31 percent white. By 2010, the average Black person's neighborhood was 48 percent Black and 34 percent white. Reinstating the Obama-era Fair Housing Rule will combat this ongoing segregation and set us on a path to true integration.

Congress should also pass the American Housing and Economic Mobility Act, or a similar measure, to finally redress the legacy of redlining and break down the walls of segregation once and for all.

Broadband Access

To realize broadband's potential to benefit our democracy and connect us to one another, all people in the United States must have equal access and broadband must be made affordable for the most vulnerable. Yet today, 15 percent of American households with school-age children do not have subscriptions to any form of broadband, including one-quarter of Black households (an additional 23 percent of African Americans are “smartphone-only" internet users, meaning they lack traditional home broadband service but do own a smartphone, which is insufficient to attend class, do homework, or apply for a job). The Biden administration, Federal Communications Commission, and Congress must develop and implement plans to increase funding for broadband to expand universal access.

Enhanced, Refundable Child Tax Credits

The United States faces a crisis of child poverty. Seventeen percent of all American children are impoverished — a rate higher than not just peer nations like Canada and the U.K., but Mexico and Russia as well. Currently, more than 50 percent of Black and Latinx children in the U.S. do not qualify for the full benefit, compared to 23 percent of white children, and nearly one in five Black children do not receive any credit at all.

To combat this crisis, President Biden and Congress should enhance the child tax credit and make it fully refundable. If we enhance the child tax credit, we can cut child poverty by 40 percent and instantly lift over 50 percent of Black children out of poverty.

Reparations

We cannot repair harms that we have not fully diagnosed. We must commit to a thorough examination of the impact of the legacy of chattel slavery on racial inequality today. In 2021, Congress must pass H.R. 40, which would establish a commission to study reparations and make recommendations for Black Americans.

The Long View

For the past century, the ACLU has fought for racial justice in legislatures and in courts, including through several landmark Supreme Court cases. While the court has not always ruled in favor of racial justice, incremental wins throughout history have helped to chip away at different forms of racism such as school segregation ( Brown v. Board), racial bias in the criminal legal system (Powell v. Alabama, i.e. the Scottsboro Boys), and marriage inequality (Loving v. Virginia). While these landmark victories initiated necessary reforms, they were only a starting point.

Systemic racism continues to pervade the lives of Black people through voter suppression, lack of financial services, housing discrimination, and other areas. More than anything, doing this work has taught the ACLU that we must fight on every front in order to overcome our country's legacies of racism. That is what our Systemic Equality agenda is all about.

In the weeks ahead, we will both expand on our views of why these campaigns are crucial to systemic equality and signal the path this country must take. We will also dive into our work to build organizing, advocacy, and legal power in the South — a region with a unique history of racial oppression and violence alongside a rich history of antiracist organizing and advocacy. We are committed to four principles throughout this campaign: reconciliation, access, prosperity, and empowerment. We hope that our actions can meet our ambition to, as Dr. King said, lead this nation to live out the true meaning of its creed.

What you can do:
Take the pledge: Systemic Equality Agenda
Sign up

Featured image by Shutterstock

As Told To is a recurring segment on xoNecole where real women are given a platform to tell their stories in first-person narrative as told to a writer.

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