Friday, February 24, 2017

Caroline's Medicaid Waiver Story

Caroline's Medicaid waiver is on the Arc Of Northern VA's website.

Caroline is one of 11,000 people currently on a long waiting list for a Developmental Disabilities waiver, which will help her get additional services that are important to her health and the quality of her life, like a case manager, more nursing, and the opportunity to adapt our house so she can get inside safely. It will also help provide therapies to keep her stiff body from permanently getting stuck in certain positions.


Thursday, January 26, 2017

Medicaid Fulfills Crucial Role for Children with Special Health Care Needs Like My Daughter

This blog post was first published in Georgetown University Health Policy Institute Center for Children and Families's blog "Say Ahhh!" 

My daughter Caroline is alive because of Medicaid. The medications, the equipment and the nursing care that have helped us manage her severe disability would not be possible without the federal program’s support. Now, with Congress and the White House considering cuts and restructuring for Medicaid, it’s important to consider children like Caroline.

We welcomed our little girl into the world seven years ago. We were in love the second we met her. She was sweet, bright, and observant from the very beginning.

Caroline’s early infancy was easy and uneventful, and she met most of the first year milestones on time. However, during a routine check-up around 10 months, Caroline’s pediatrician worried that she still wasn’t crawling and urged us to contact Early Intervention services.

Her evaluation determined that she had low muscle tone and needed physical therapy, and services began soon after her first birthday. Within a few months, it was clear that Caroline had the motivation to crawl and explore the world around her, but the coordination necessary to move forward was missing.

At 15 months, we noticed that Caroline was performing a strange repetitive movement with her hands. The movements were subtle at first, but my heart sank the first time I noticed them. This involuntary behavior was a sign that we were dealing with more than just gross motor skills delays. We immediately took Caroline to see her pediatrician, who expressed concerns about the possibility of Rett Syndrome.

We were stunned when we first read about the progression of the disorder. We were referred to a neurologist and a geneticist in the hopes that we could rule it out.  However, the hand movements soon became constant and Caroline began to lose the ability to use her hands to play with her toys, feed herself, and hug us. Around this time, we noticed that she was losing her words and struggling to vocalize sounds. She was verbal early on, and communication had always been her strength, which made her regression all the more noticeable. Caroline also developed problems with chewing and swallowing.

We experienced dark days filled with grief and anxiety as we watched Caroline struggle with the loss of these skills. At 17 months, doctors told us she had Rett Syndrome, a heart-breaking diagnosis that finally explained her inability to walk, talk, or use her hands. We were devastated.

Rett Syndrome prevents Caroline from expressing herself and moving the way she wants to, making her completely dependent on others for every aspect of her life. At age 7, she still wears diapers and can only eat pureed foods and drink out of baby bottles. The disorder, however, doesn’t affect Caroline’s intelligence or her ability to love.

She is very observant and engaged, and she understands everything we say to her. She uses her eyes and makes sounds to communicate, and she is also learning to tell us what she wants with a computer that tracks her eye movements. Caroline is not defined by her missed milestones, but by her strength and sweet spirit. She loves spending time with her family and friends. She is daddy’s little girl. She loves books about dinosaurs, and her favorite movies are Tangled and Beauty and the Beast. In a lot of ways, she’s just like any other girl her age.

But unlike typical girls, Caroline’s medical needs continue to worsen and grow more complex with time. Even with four medications to control her seizures, they keep coming. Caroline had 85 seizures last year alone. She also needs medication to keep her from vomiting and medication to let her know when it’s time to sleep. Caroline’s muscles and tendons are often very tight so she has to take yet another medication and wear braces on her ankles and hands to keep contractures from developing. Caroline’s condition also makes her susceptible to pneumonia and respiratory failure.

Caroline has been in the Pediatric Intensive Care Unit (PICU) five times since 2014, sometimes for several weeks straight. One visit in 2015 was particularly terrifying and heart wrenching because we weren’t sure we would get to bring her home again. Luckily, her great team of doctors worked hard to save her life and figure out a plan going forward. To reduce the number of expensive hospitalizations and also prolong the quality and length of her life, Caroline’s doctors put her on a daily regimen of lung therapies at home.
Several times a day, she receives a round of various nebulizer treatments, followed by therapies to keep her airways clear and help her cough. These lung therapies are administered through two different types of hospital-grade medical equipment. At night, Caroline also receives additional oxygen support through a BiPap respiratory machine that helps her inhale and exhale properly.

Caroline is alive because of Medicaid. Medicaid has also allowed my husband and me to care for her in our home and watch her grow into the beautiful, sassy, and funny girl she’s becoming.

We found out about Virginia Medicaid’s Elderly and Disabled Consumer Directed (EDCD) waiver six months after Caroline’s diagnosis when our circumstances started taking a toll on our mental and physical health. We were heartbroken, sleep deprived, and extremely stressed. My husband and I were working full-time while doing our best to ensure that Caroline saw all of her doctors and therapists each month. We hadn’t yet found a solution to address Caroline’s inability to sleep so we were functioning on just a handful of hours of sleep each night. We also spent every free moment educating ourselves on how to best care for our daughter and navigate this new uncertain path. When I shared our concerns with Caroline’s case manager from our local Early Intervention services, she told us about the EDCD waiver, which would provide us with some hours of personal assistance and respite care each month. We were initially reluctant to enroll in this benefit, but we recognized that the pace and complexity of our lives was not sustainable, and we desperately needed help.

The EDCD Medicaid waiver allows elderly and disabled people to live in their homes instead of an institution. Caroline receives nursing care for a few hours each day on weekdays (and sometimes on weekends), allowing my husband and me to work and take care of our family needs. We never imagined that these nursing services would one day save Caroline’s life.

In 2014, during one of the monthly required visits as part of the program, the agency’s head nurse took Caroline’s vitals as usual and noticed something that alarmed her. Caroline, asleep during this routine check-up, wasn’t taking enough breaths per minute. The nurse instructed us to get prescription for a Pulse Ox machine and see a sleep specialist as soon as possible. These two actions changed the course of our lives. Caroline’s sleep specialist and pulmonologist ran tests that revealed she had severe sleep apnea. Apparently, Caroline often stopped breathing throughout the night, and she wasn’t fully inhaling and exhaling which caused her system to retain higher than normal levels of carbon dioxide.

A few months later, the Pulse Ox machine’s alarm suddenly went off after Caroline had been asleep for a while. We ran to her room and noticed that her breathing was labored and her oxygen saturation was dipping. During the day, we had observed symptoms of what appeared to be a mild cold and never imagined that she was rapidly developing pneumonia. We rushed her to the hospital where she was immediately admitted to the PICU and ended up staying for 17 days.

The EDCD waiver also helps cover the rental of the lung therapy machines and other medicines that are not covered by our private insurance. The rental of Caroline’s two lung therapy machines alone amounts to several thousand dollars a month. These machines not only keep Caroline out of the hospital but also allow her to do something most of us take for granted – to breathe normally…and stay alive.

The uncertainty about Medicaid’s future has compelled me to speak out on her behalf and on behalf of the millions of children like her who rely upon a strong Medicaid program.
Since its creation more than 50 years ago, Medicaid has been a successful, cost-effective federal-state partnership. Several proposals have recently surfaced that would impose an arbitrary cap on the federal Medicaid contribution and shift more costs to states. These proposals would severely hamper state leaders’ ability to respond to the fluctuating needs of their residents and pose a real threat to families who rely on Medicaid now or may need it in the future.

Our family story is not unique. Babies are born every day to parents who never expected to need Medicaid to help them meet their children’s needs.

Nobody knows what the future holds. None of us knows whether we or one of our loved ones will face insurmountable medical costs due to an accident, illness or the birth of a child with special health care needs. The decisions our leaders make today about the future of Medicaid will have a dramatic impact on the future of our children and families. Strengthening Medicaid would build a brighter future for our children, but proposals to weaken the program through arbitrary caps would leave families wondering whether or not Medicaid will be there for them in their time of need.

Friday, June 13, 2014


Life is unpredictable. That much I knew. I just never expected there would be these many sharp turns. Rett Syndrome is relentless, throwing one obstacle after another. And just as we start to catch our breath, a new challenge creeps up around the corner. I'm exhausted.

Caroline started having seizures last fall. We were desperately hoping she would never join that club. Sadly, an EEG test in December revealed that Caroline suffered from partial complex seizures several times a day. Of all the challenging symptoms associated with Rett Syndrome, seizures are among the worst. Seizures are dangerous and unpredictable. The International Rett Syndrome Foundation website reports that "factors most strongly associated with an increased risk of sudden unexplained death in RTT are uncontrolled seizures, swallowing difficulties and lack of mobility."  It destroys me that Caroline now suffers from all three complications.

Caroline's seizures were dangerously long and uncontrollable until about two months ago when, after trying a number of treatments, we found that a combination of two different medications diminished the frequency of her seizures. They are mostly under control at this point, but it's still hard for me to accept that seizures are part of our life now. These episodes are incredibly difficult to watch and I always feel the same: disbelief; fear; sorrow; and complete and utter helplessness. Crushing helplessness. There is nothing we can do but hold her unresponsive convulsing body while we wait for this scary thing to release its grip.

I feel as though something has been lost this past year. Caroline is not the same little girl she was last summer, before seizures began. Regression seems to have picked up its pace: her motor skills are steadily declining; she fatigues easily; her body is increasingly stiff; her ability to swallow is worsening so she chokes and vomits a lot; her appetite is low; and her tremors are more frequent and intense. I hate even writing this, but we also noticed that a little bit of her spark has dimmed. Something has also shifted in me that I can't quite articulate yet. I still smile and laugh and look forward to each day. I feel incredibly lucky for having support systems that give Caroline a healthy and happy life and also allow us to retain some normalcy despite living under chronic stress. Maybe what's changed is knowing for sure that my heart is irreparably broken.

This is not the life I thought we would have when we became parents, but Caroline is and will always be the best thing that has ever happened to me. She is my heart. She is my life.

Caroline getting hooked up to the EEG in December 

Her 24-hour video EEG was conducted at home

Saturday, January 4, 2014

It doesn't have to be weird

For many (though few would ever admit to it), interacting with someone who has severe disabilities can be awkward. I get it. A conversation with a non-verbal person can feel one-sided and uncomfortable.The fear of saying the wrong thing or not knowing what to say often results in not saying anything at all, leading to a situation where Caroline (and people like her) are often ignored or forgotten.

I'm not here to judge. In fact, I can absolutely relate. Before I had Caroline, I was uncomfortable in those situations as well--not because people with disabilities made me uncomfortable, but because of my own fear of doing or saying the wrong thing. What I didn't know was how much I would learn about myself, relationships, and love through those interactions. I would like to help take some of that weirdness away by offering a little bit of guidance that will hopefully make your interaction with Caroline a more meaningful one.

Approach spending time with Caroline as you would any other child. Caroline is like most little girls her age; she just can't express herself in the same way. She loves one-on-one interactions so she'll be very grateful that you talking to her. You can talk about yourself or mention her interests to her (she gets super excited to hear that people know about Belle or Yo Gabba Gabba!). And it's totally okay to ask her questions. I used to struggle (feeling silly and even guilty) when asking her questions she couldn't answer, but her bright eyes and smiles showed me that she appreciated my efforts. I understand that it's easy to question the cognitive level of someone who is unable to show their true intellect, but I encourage you to assume complete understanding even if you aren't getting typical feedback. 

She may look away or appear disinterested, but she's still listening. It is difficult for Caroline to focus her eyes on anything for too long. Rett Syndrome prevents her brain from sending the right signals to her body, resulting in the inability to control movement. This is manifested in the constant involuntarily motion involving her hands, as well as the various spastic/jerky movements in the rest of her body. She may close her eyes or look away, but we believe it's easier for her to process information that way. It may also take her around 30 seconds to respond. I should note that 30 seconds of silence and waiting can seem like an eternity when you are talking to someone.

It's okay to kiss and hug her. People often ask me if they can touch her. Yes, absolutely! Caroline is constantly smothered in kisses and hugs. We spend a lot of our time together cuddling. She LOVES it. She's used to my style of affection which is loud and intense! If you find that you don't know how to talk to her (which happens to me too sometimes), please feel free to hold her on your lap, or simply smile and make eye contact with her. I spend a lot of time doing just that. I'm always amazed at how much can be communicated without words. 

Please feel free to ask me questions. This goes without saying, but we've very open about Caroline's condition. I believe that talking about "difficult" issues in an honest and respectful way can reduce the stigma, fear, and discomfort around those issues. If Caroline's around, I'm happy to talk about how she communicates, how she uses her adaptive equipment, or how she goes about doing various activities. I'm also willing to talk about the hard stuff as long as it's not right in front of Caroline.

My message here is that any type of interaction is greatly appreciated (with or without the use of words). I believe that you will gain something profound out of it as well. 

Sunday, December 22, 2013

Toy stores and Rett Syndrome don't mix

It’s not easy for me to admit this, but toy stores make me feel sad, anxious, and even resentful at times. For me, walking around a toy store is like getting a tour of various landmarks that scream “this is what Caroline’s life would be like without Rett Syndrome.” 

It’s been almost three years since Caroline lost purposeful use of her hands. I got my first glimpse that something was wrong while watching her play with her toys. That first image of Caroline struggling to pick up one of her stacking cups is permanently ingrained in my memory. By the time we got a diagnosis, Caroline could no longer grasp or hold anything. Her toys quickly became a painful reminder of all that was lost. I was so consumed with feelings of grief and helplessness that I ended up giving a lot of them away.  

When Christmas rolled around that year, Mike got a bunch of toys for Caroline “from Santa.” He didn't focus on the fact that she couldn't manipulate them. He just wanted her to experience Christmas and Santa the way he did as a kid…the way most typical children do. Inspired by his approach, I decided I needed to make a real effort to get over my issues by finding Christmas and birthday presents for Caroline on my own. This is a very basic task for a parent so I should be able to do it, right? Well, it’s been more than two years and I have not made much progress. I still struggle with the concept of toys; the pain associated with them is still there. I noticed that I go through the same thought process every single time I attempt to find a gift for Caroline that doesn’t come in the form of a book, CD, or DVD. But I still push myself to do it even though deep down inside, I don’t really want to. Before I leave the house, I always say something along the lines of “I don’t know what to get for Caroline. This is really depressing.” And Mike always responds with “I know. But, it will be okay. Just get her something that’s age-appropriate.” I tell him I have no idea what kids her age are into so he gives me a few suggestions. And off I go.

Here’s what goes through my head when I visit a toy store.   

This is not my world. 
I always start by telling myself the same thing…maybe if I walk around long enough, I’ll somehow magically find a toy Caroline may be able to enjoy. But as I look around, I notice things I've somehow trained my eyes to ignore at all other times…images of children doing typical kid things. All around the store, I see pictures of little girls playing, running, drawing, holding hands, and doing things I daydreamed about when I was pregnant. I can barely look at these images without getting knot on my throat. If I dwell on my feelings too much, my eyes start to well up. How is it that I manage to live in a bubble all year around? The last thing I want to do is get emotional in public so I pull myself together, and do my best to act like the other parents in the store. When I’m around typical families, I don't feel like a "real" parent. I feel like I'm faking my way, pretending to understand a world I know very little about.  

Caroline is not a baby and yet here I am in the baby section. 
Inevitably, I find myself in the Baby section. That aisle has a tendency to create a sinking feeling in the pit of my stomach. It reminds me of our life before Rett—a time before wheelchairs, braces, sensory issues, complex communication needs, therapies, IEPs, seizures, and parents outliving their children. I always seem to gravitate towards the baby section in hopes of finding something Caroline may enjoy that’s not too “baby-like.” The truth is that there’s no such a thing. I often feel like I’m being punched in the stomach whenever someone compares or associates Caroline to a baby. It undermines her. So why am I in the Baby section looking for a toy that doesn't exist? 

Caroline is missing out on so much. Life can be so unfair sometimes. 
Still empty-handed, I drag myself to the section with age-appropriate toys for Caroline. I start to wonder what four-year-olds are into. Barbies? Dolls? Kitchen sets? Why are there toy brooms in the “girl” section only? Sigh, I don't want to reinforce gender roles. Wait a minute, why am I even worrying about things that have no bearing on Caroline's reality? I find myself standing in the middle of the aisle, feeling clueless around all these toys and activities. I catch myself observing other kids and their parents for clues. Gosh, their lives are so different than ours. These parents have no idea how lucky they are. They have the luxury of hearing their kids’ interesting and complex thoughts. Their kids are able to express their individuality. Why was Caroline given such a difficult life? She’s so full of innocence and love. She doesn't deserve this. But life doesn't come with any guarantees. Crappy things happen all the time, whether you think you deserve them or not.

But Caroline is still a kid--she should experience these “typical” childhood things! 
Usually, after 30-45 minutes or so, I realize I need to do what I came here to do. So what am I going to get for Caroline? She’s into princesses right now. Will she enjoy dressing up like one? She also seems fascinated when she watches me put makeup on. Maybe she would like pretend makeup? Or is she too young for that? What message am I sending? Ugh, I need to just chill out and stop over-thinking everything. Besides, Rett Syndrome is horrible, and I have no idea what the future holds. I should get something fun. I should just spoil her. Still, as I place toys in the shopping cart, I can’t help but resent the fact that she can’t use any of these things on her own. But this is not about me. Caroline shouldn't miss out on silly or fun things because of her condition. I guess we'll have to "play her toys" for her. It will be wonderful, fulfilling, and sweet…I hope.

When I get home, I show Mike what I got. He knows how difficult this is for me, and expresses support and appreciation. I don't know how he always manages to find toys with so much more ease than me. And he seems genuinely excited to share them with Caroline, which in turn makes me less sad about the whole thing. 

When it comes to doing things that feel awkward and unnatural because of Caroline’s disability, I wish I could learn to put my sorrow aside and focus on the beauty. I just don't know how to fill that hole sometimes.  

My heart

Caroline's Christmas presents

Saturday, November 2, 2013

My "new normal" is not what I expected

When Caroline was diagnosed, I understood that everything in my life would be very different from that point on. I made a few assumptions...but life is always full of surprises.

I thought the gut wrenching grief that invaded my being would eventually be replaced by a feeling of acceptance, which I mistakenly equated to a return to some kind of normalcy. That initial debilitating grief did eventually subside. But I've learned that feelings of sorrow are constant, even when I forget they are there. I now know that my heart will continue to hurt for Caroline for as long as I live.

I remember wondering if I would ever feel joy again. What I didn't expect was to experience happiness on an entirely differently level. These moments are brief but they are powerful. Something as simple as Caroline giving me a sweet smile, or sharing a good laugh with a someone I care about, is enough to remind me that life is beautiful no matter how dark and challenging it may seem at times. I've finally learned to live in the moment and just focus on today. I've learned to be fully present with people. And gestures of friendship and support from those around me are crucial in getting me through each day. The good, which is plentiful, certainly outweighs the sad.

I feared my heart would harden, and I worried relationships would change. Relationships did change. I developed stronger and more authentic connections with people in my life. My heart didn't go numb, it actually grew bigger. Caroline taught me the meaning of profound and unconditional love, which in turn, has made me more in tune with the love I feel for people around me. But Rett Syndrome has also exhausted my ability to put up with judgment and insensitivity.The few people who pitied us or were uncomfortable with Caroline self-selected themselves out. No hard feelings.Things have a way of working themselves out.

I thought I would be left with just one identity--special needs mom. To clarify, of all the different hats I wear on a daily basis, being Caroline's mom brings me the most pride and fulfillment. But for many months after Caroline's diagnosis, I could not see myself succeeding or finding satisfaction in any other role. I realized now that I am not defined by Caroline's diagnosis. I can still be "me." I'm still a partner to Mike beyond our parenting roles. I can still pursue my career, which is incredibly fulfilling to me. I can continue to nurture relationships with family and friends. And I can be silly and light. Aside from grounding me, these different aspects of my identity help me become a better mother to Caroline.

I thought I could remain part of the "general parenting world" (for lack of a better word). Instead, I find myself sitting on the sidelines. My only experience as a mother is with a physically disabled child. When the issue of (typical) parenting comes up in conversation, I often feel like a stranger trying to fit in, trying to understand social norms that no longer make sense to me. Priorities and visions for the future are fundamentally different. These paths are certainly not created equal. And I often get harsh reminders that our life is considered far from ideal when I stumble into conversations reminding me that Caroline represents every parent's worst fear. I completely understand those concerns because I was once there too. But it still hurts to hear those things. My protectiveness towards Caroline overpowers my ability to think rationally in those moments.

I've found that I cope better when I tune out society's messages about what happiness and success should look like. For whatever reason, Caroline's diagnosis has brought everything into focus. It's made me more aware, more awake. I like who I've become. I just wish it hadn't come at such a high cost to my Caroline. She suffers and struggles in ways that are unimaginable to most of us. And that's just not fair.

Thursday, September 26, 2013

Some dreams are still possible

Almost two years ago, I wrote a post on this blog titled "what would Caroline say?"
I read it again this past week with an overwhelming sense of wonder and gratitude. In the post, I described my dream to communicate with Caroline. I also talked about our wish for Caroline to have access to an eye-gaze computer.

Rett Syndrome can really do a number on hopes and dreams. Looking into the future can make me spiral down into a rabbit hole of fear and dread. I had to accept what was robbed, but I also allowed myself to remain cautiously optimistic about certain things. For some reason, I've always felt communication was within our reach. That dream is now closer than we ever imagined it would be at this point.

Before I continue, I'd like to share my personal opinion about skills and Rett Syndrome. I feel like parents are often inadvertently blamed or praised when it comes to their disabled children's skills. To me, Rett Syndrome is the ONLY culprit for missed milestones. Conversely, its occasional mercy allows for some skills to flourish. And each and every single one of our girls has unique strengths. I believe our girls' particular skills are a reflection of how the disorder has decided to manifest itself. I think therapies are incredibly important and necessary (and can often maintain or improve skills), but they can only do so much to fundamentally change what Caroline can and cannot do. Some girls walk, some girls have better use of their hands, and some girls can communicate with a little more ease.

Rett has left Caroline severely physically disabled, but it has also cut her a break by allowing her to express certain needs. I still feel like Caroline and I are separated by a wall that prevents me from hearing what she's telling me, but her eye-gaze computer has started to crack open a door. Caroline can now tell us when she's thirsty, hungry, sad, happy, etc. She tells us if she likes something, and she certainly lets us know if she doesn't. She is able to call for specific people. She even picks who gets to feed her. Most importantly (for her!), she has mastered the use of several different symbols to express her most frequent and urgent need: "Want. Yo Gabba Gabba. Please. Play. Yo Gabba Gabba. Want. Please."

I savor every word she says. And I hope we can eventually kick that door wide open.

I will work on taking video of her using her computer. In the meantime, here are some pictures.

Caroline's main page (each symbol opens up options for more words)