Friday, August 11, 2017

Do I wish Caroline were a typical child?

Do I wish Caroline were a typical child?

This is a question I've been asking myself since she was diagnosed in 2011. The answer is yes ... and no. You're probably wondering how I could possibly include a "no" in my answer.

At an appointment today, I was describing Caroline's condition to a medical assistant, and her reaction reminded me that yes, Rett Syndrome is indeed an awful disorder, but no, there's no need to apologize and be sad for us. She's still alive and looking right at you, wondering why you suddenly look so sad. I get it. I wish for Caroline's sake that it didn't happen, but I get it. I know it comes from a good place. I usually try to lighten the situation with humor, but I realize that our sense of humor and way of coping doesn't always translate well outside our household. Me joking to Caroline "let's try not to throw up or have a seizure during the exam" resulted in a smirk and an eye roll from Caroline but an even more uncomfortable and sad look from the lady.

So back to my question. Do I wish Caroline were a typical little girl? I'll start by explaining the "yes" part. Rett Syndrome is horrible, plain and simple. I wish, multiple times a day, that I could take away her seizures, her inability to breathe properly, her discomfort, her pain, her frustration, and everything that Rett has stolen from her. I wish she could do regular things that 7-year-olds do -- hang out with her friends on her own, read books by herself, explore her surroundings, do silly things, share her thoughts and feelings with others, ask us questions, and so many other things I took for granted when I was her age. I would do anything to make her life easier, and I am continuously in awe of her patience, bravery, and strength. We try our best to give her -- and ourselves -- some semblance of a normal life. But the truth is that Caroline has been dealt a very difficult and challenging life, and that pisses me off. At times, I am both angry and devastated that instead of worrying about raising Caroline to be a strong independent woman, I'm having to worry about what will happen if she dies young...or if she outlives us (very unlikely). Both scenarios cause me to stay up at night. I know life isn't fair, but I'm going to say this anyway. It's unfair that just staying alive and fairly stable isn't something that she can do without so much intervention. I hate that Mike and I need to have conversations about all the things we need to do to make sure she suffers less and lives a little longer. Our biggest fear is losing her. Even though we have accepted that will eventually happen, the pain and loss is still unimaginable to us.

Now to the part that is hard for me to explain....why I don't wish she were a typical kid. This is my selfish and brutally honest answer. In short, I love and (or as my mom will describe it) worship the Caroline I know. She is perfect to me, and I love her for who she is. And even though she's first and foremost just Caroline, Rett Syndrome has shaped and continues to shape everything about her. This will probably sound like a terrible thing to say out loud, but I don't find myself wishing Caroline would suddenly turn into a typical version of herself -- a parallel version of herself who talks, walks, and can do things on her own. I don't know and love that little girl so I don't wish for her. It doesn't make sense to me. People often assume that I want what they have. In fact, I've had a number of friends (even close ones) distance themselves from me because they feel bad for me. They feel guilty because they have their healthy kid and I have Caroline. My catty side causes my eyes to roll a few times to the back of my head at this. I can understand their perspective. I used to resent it, but when I put my hypocrisy and defensiveness aside for a minute, I realize that I kinda feel the same towards parents with typical kids. I fear some aspects of having a typical child as much as they fear the challenges often associated with having a medically fragile child with severe disabilities. When Caroline started losing her skills 6 years ago, I was desperately trying to hold bring them back somehow. I looked at other kids and wondered what it would be like to have a conversation with my baby. But months went by and my memory sucks. The only reality I know is the one in which I am lucky to have a child who looks exactly like Mike with a hint of my Korean side, and who is bright and sassy and funny, but whose time on this earth is more limited than others and who happens to need more care and assistance than most. I love the family we have become because of Caroline's condition. I like the person I've become because of Caroline. I just wish that these things had not come at such a high price to her.

Last, do I wish for a cure? I would give anything to alleviate Caroline's Rett symptoms

Thursday, July 6, 2017

I told Caroline's story at a protest outside Trump's Hotel while he held a $35,000-$100,000/plate fundraiser inside

Thank you Public Citizen, Resist Here, Americans for Tax Fairness, and Working Families Party for the opportunity to share my daughter Caroline's story.

I am feeling deeply thankful for the opportunities I've been given to tell our Medicaid story and add my family's voice to the health debate. I still find public speaking excruciatingly challenging -- it's not something that comes naturally to me. I've also had to set aside my family's privacy. But I recognize my own privilege and the flexibility it gives me to be able to voice the concerns of so many families like mine.

The protest received a a lot of media coverage. Below is a link to a news clip with a very (very!) short clip of my interview.

You can view video of the protest below. My message to the Republican Senators supporting this bill starts at the 21:30 mark.

My message to the Republican Senators supporting Trumpcare:

You are putting my daughter's life at risk. You are taking away the lifeline of so many children with disabilities and/or chronic illnesses by cutting $800 billion from Medicaid to finance tax cuts for corporations and billionaires. Do you even understand what's in the bill? This is a matter of life and death for millions of Americans across the country.

Do the right thing. Do NOT pass Trumpcare. America will be watching you.

Sharing Caroline's story with Whip Steny Hoyer on

On June 23rd, I was given the opportunity to share our Medicaid story with Whip Hoyer. We are deeply grateful to him and so many other champions in Congress for fighting so hard to protect children like Caroline -- who have with disabilities and chronic health issues and depend on Medicaid to survive and be part of society. 

Our conversation was filmed as part of a video series on featuring members of Congress interviewing Americans about the impact TrumpCare would have on their lives.

These stories are shared by millions of Americans across the country. Let's continue to call our Senators every day and tell them to vote NO on the Senate health bill/TrumpCare. We are not asking for much here. People need their healthcare coverage to just live and continue to be part of society.

Video of my conversation with Whip Hoyer

The video below includes clips from a few stories including ours (and some cute pics of Caroline!). You can hear my message to the Administration and Republican members of Congress at the end of the video.

Tuesday, June 27, 2017

Press Conference Outside Children's National Hospital

Thank you so much, Leader Pelosi, Rep. Jayapal, Rep. Yarmuth, Rep Norton, Rep. Raskin, and Rep. Sarbanes for showing me genuine compassion and for fighting for Caroline. And thank you to the Arc of the United States for inviting to share the importance of Medicaid for children like Caroline. 
Link to the video of the speeches:

Thursday, June 22, 2017

Senator Mark Warner is fighting for Caroline and others like her

Thank you, Senator Mark Warner and the Arc of Virginia, for giving me the opportunity to share Caroline's story and talk about the crucial role Medicaid had played in her/our lives.  
Please call your Senators today. Everybody stands to lose with the terrible health care bill the Senate is voting on next week.

Wednesday, May 31, 2017

Kicking off the #HandsOff Campaign on Capitol Hill -- May 24, 2017

I had the honor join advocates and members of Congress to speak out against Trump's budget proposal. What's at stake? Pretty much everything that American families care about.

Thank you Congresswoman Lee, Whip Hoyer, Leader Pelosi, Congressman Yarmuth, and the Center for American Progress for the opportunity to tell our story today.

Tuesday, March 28, 2017

Caroline's Medicaid story in the Guardian

I was given the opportunity to be interviewed by Mary O'Hara, the reporter who wrote this article about the impact of Trump's Administration on the most vulnerable Americans. The article includes Caroline's Medicaid story. As a society, we will need to keep fighting for each other against the threats of dangerous policy proposals.

News article below
For a link to the news aricle, please click HERE
America rose to defend healthcare. But Trump’s attack on the poor is not over
Mary O'Hara
Obamacare will be the law of the land for the “foreseeable future”, the speaker of the US House of Representatives, Paul Ryan, admitted in the aftermath of the abject failure of Donald Trump or the Republican party to “repeal or replace” Obama’s flagship Affordable Care Act (ACA) after seven years of bleating about it. The colossal and humiliating collapse of the proposalswas met with jubilation last Friday by millions of people, especially the poorest and disabled, who were in line to lose access to healthcare if the American Health Care Act had been successful.
Watching the events unfold I wondered: what if there had been a similar sudden downfall of the austerity programme in the UK in those early days when the dire warnings of the harm it would unleash were being shouted from the rooftops? How many people would not now be turning to food banks or battling to access social care if austerity had been stopped in its tracks? 
The political rollercoaster in the US as the new health bill failed to garner the necessary votes to be passed in the house (partly because rightwing hardliners wanted an even harsher version) was stunning. The debacle came against a backdrop of months of anxiety and fear at what would unfold if it were passed and, the closer the vote deadline got, the more it hit home how much ordinary citizens would suffer. Across the country, individuals and groups rose to oppose it, highlighting the potentially devastating consequences for access to reproductive health services and the disproportionate impact on low-income women and children. Disabled campaigners worked tirelessly to draw attention to the particular injustices they would face if the law passed. Last Wednesday, more than 50 disability rights activists were arrested in Washington DC for protesting against it. 
As longtime campaigner Bruce Darling from the disability rights organisation Adapt explained, many people risked being placed in institutions rather than supported in their own homes if proposed cuts of $880bn (£705bn) to Medicaid, the government-funded programme that assists the very poorest and disabled people, went ahead. “Disabled people will die,” Darling told me. 
Leading up to the healthcare vote I talked to people who were terrified about the impact of the new act. One of these was Marta Conner, a charity consultant from Virginia whose seven-year-old daughter, Caroline, has Rett syndrome, a neurological condition that severely limits her control over her body and means she needs round-the-clock care, expensive medication and specialist equipment. Conner was like many of those speaking out. She told me she felt “it was important to have our voices heard” because children like Caroline and millions more disabled and seriously ill people could lose a lifeline.
According to independent analysis from the non-partisan Congressional Budget Office, the AHCA would have seen 24 million people lose health cover in the next decade – and sent insurance premiums for older people rocketing. And, just to rub salt in the wounds, it would have meant a doling out of tax breaks to the rich.
Nevertheless, despite the healthcare reprieve, if you are poor or disabled in the US right now, the fight for rights to support and quality care is far from over. For a start, the healthcare debate isn’t going to disappear: health insurance remains prohibitively expensive for many and even with the advances of Obamacare, it is not a universal system. 
But there are other reasons why complacency is not an option. The attack on the poorest is coming on multiple fronts. Trump’s “blueprint” budget, which was also published this month, is a source of widespread anxiety. It has been overshadowed somewhat by the healthcare issue, but with clear echoes of cuts in Britain, initiatives that help the most vulnerable could be decimated if Trump gets his way. 
In a similarly absurd vein to Tory claims of “compassionate Conservatism” while they slash budgets, preside over soaring levels of child poverty and pummel the NHS, Republicans have had the gall to argue that culling anti-poverty programmes such as after-school nutrition initiatives and Meals on Wheels are acts of compassion towards taxpayers. The question now is, can these radical proposals come crashing down as the healthcare bill did? For the sake of the most vulnerable, let’s hope so.

Friday, March 24, 2017

Medicaid Matters Press Conference with Senator Cory Booker (NJ)

Republicans pulled the plug on the House vote to repeal the Affordable Care Act (ACA) with their American Health Care Act (AHCA) bill (aka Trumpcare). This victory is the result of a widespread and tireless advocacy effort by the progressive community and impacted individuals. 

Two days ago, I was given the opportunity to speak at a press conference with Senator Booker (NJ) along with folks who depend on Medicaid (or have loved ones who do), as well as people who work with Medicaid recipients. This effort was led by the ProtectOurCare coalition. The Senator showed heartfelt compassion towards our needs and promised to fight hard for us. 

Senator Booker posted a video of our speeches on his social media to help get our stories out there and show the dangerous impact of Trumpcare

This is the Facebook version of my speech. If you'd like to see the comments, click on the title of the video below


And below is the YouTube version

Below are pictures and tweets about the event

Below is a Facebook version of the short highlights video of the press conference 

And below is the YouTube version

Senator Booker was gracious enough to take a selfie with me!
Senator Booker was gracious enough to take a selfie with me!

Friday, March 17, 2017

I testified at a hearing held by House Democrats on the impacts of the Republican ACA Repeal Bill

Yesterday, House Democratic Whip Steny H. Hoyer held a hearing with House Democrats on the GOP bill to repeal the Affordable Care Act. Whip Hoyer invited me to testify about the importance of Medicaid for children with disabilities. House Republicans did not hold a hearing before the House Budget Committee passed the bill which is unconscionable and irresponsible.

Thank you Whip Hoyer, Congressman Pallone, Congressman Neal, Congressman Scott, Leader Pelosi, and the other Members of Congress for holding this important hearing and for inviting me to testify. What an honor it was to share the crucial role Medicaid has played in Caroline's life

You can click HERE to watch the live video Democratic Whip Steny Hoyer posted on his Facebook wall. My testimony is at the 1:40:00 mark. FYI--the Facebook version is better and you don't need a Facebook account to view the video. You can also watch the YouTube version below but you won't be able to see the speakers because the camera points at our backs.

Pictures from the hearing

Capitol Hill 

Whip Hoyer, Congressman Pallone, Congressman Neal, Congressman Scott, Leader Pelosi,
and the other Members of Congress 

 With Congressman Pallone, Congressman Lewis, Whip Hoyer, Congressman Scott

Dr. Sam Zager, me, Dr. Nitin Damle, Peter V. Berns, Dr. Samuel Ross

My testimony

More information about the hearing

Democratic Whip Steny H. Hoyer (MD-05)
Rep. Frank Pallone, Ranking Member on the Energy & Commerce Committee (NJ-06)
Rep. Richard Neal, Ranking Member on the Ways & Means Committee (MA-01)
Rep. Bobby Scott, Ranking Member on the Education & the Workforce Committee (VA-03)
House Democrats

Economic and Coverage Implications
Doug Elmendorf, Dean, Harvard Kennedy School, Former Director of the Congressional Budget Office
Andy Slavitt, Former Acting Administrator, Centers for Medicare and Medicaid Services
Mike Kreidler, Washington State Insurance Commissioner

Patient and Provider Perspectives
Dr. Nitin Damle, President, American College of Physicians
Peter V. Berns, Chief Executive Officer, The Arc
Dr. Samuel Ross, Executive Vice President, Bon Secours Health System, Inc.
Dr. Sam Zager, Patient Advocate
Marta Conner, Mother of a child with Rett Syndrome covered under Medicaid

UPDATE: Materials from the hearing (including my testimony) can be found on Democratic Whip Hoyer's website HERE

Wednesday, March 15, 2017

"What’s at Stake for Americans with Disabilities in the Trump Era" (Panel at CAP)

On March 8th, I was given the opportunity to tell our story on a panel at the Center for the American Progress (CAP). For information about the speakers and the panel, please click HEREKeynote speech by Anastasia Somoza. 

You can watch our conversation by clicking HERE

Photo credit: CAP