My dear friend Laura shared the message below the day after Emma was laid to rest. Beth (Emma's mom) is really one of a kind. She's the kind of person whose warmth and openness makes you feel like you've known her forever. She's the kind of person to always put others before herself. I am in awe of her strength and grace. Please consider making a donation in honor of Emma.
Since our daughter was diagnosed with Rett syndrome almost four years ago, there have been a lot of sad and difficult days. But yesterday was one of the most heartbreaking. Yesterday, I watched my dear friend say good-bye to her daughter Emma, who was only 5 years old and died this week from complications of Rett. Beth may just be the strongest woman I know, and even when her life was crazy, she was always there for anyone else who was struggling. If you know Beth or know Rett syndrome (and even if you don't), please consider making a donation to help the family cover these unexpected funeral costs. (See info below.) And please send out into the universe wishes of strength and peace for Emma's grieving family.
There has been a fund set up at BB&T bank in memory of precious Emma, to assist Beth and Sean with funeral costs and medical bills. If you want to donate, you can make a check payable to "The Emma Claire Reilly Memorial Fund" and mail to the BB&T bank branch in Mt. Airy.
The address is:
443 E. Ridgeville Blvd.
Mount Airy, MD 21771
If you would prefer to donate via Paypal instead, please login into your account and send money to the following email address: email@example.com. After denoting your amount, please click the tab "Personal" and click on "Gift." This way, Paypal will not deduct any fees from the money.
Those two words are changing Caroline's world!
Last December, I wrote about longing to hear Caroline's "voice" (please click here for the post). I remember being heartbroken, but hopeful. We always knew Caroline understood what she heard. Yet unlocking her voice seemed so daunting and overwhelming. Apraxia basically traps Caroline in her own body. It prevents her from forming words and using her hands to point. Her only tool for communication is her eye gaze.
This past month, we experienced a major milestone. Caroline started indicating "yes" and "no." For a while, we were encouraging her to use head movements (please click here for more detail). We soon found that the motor planning involved (not to mention Caroline's involuntary movements!) was adding yet another obstacle to an already challenging task. She would often get frustrated. It was also difficult for us to distinguish between a "real" head tilt and an involuntary movement. We decided to rely on one of her strengths instead: her eye gaze.
Caroline's newfound ability to make choices has marked a real turning point in our lives. She seems less frustrated. She has higher expectations! She gets excited when she's able to tell us what she needs...and she yells at us when we can't figure it out! Ideally, we should aim to give Caroline two choices with "something else" as a third choice. This method allows Caroline to truly express her needs. It also lays the foundation needed for her to use the PODD communication system expressively. But reality isn't always ideal. Sometimes, we just ask her to chose directly between two items in front of her. This method is much more limiting, as it prevents her from expressing a need that may be completely different than the choices presented to her. But I may only have two snacks available. Or I may not want to offer "rocking" as option because she's just had something to eat and may end up throwing up (a common problem for us). We're doing what we can. And Caroline now gets to enjoy choosing activities, snacks, videos, toys, and even who she wants to hang out with!
Our next goal is to help Caroline tell us what's wrong when she's upset. When she's crying, she obviously has very little patience for using "yes" and "no." And yet these are the times when I most need her to be able to communicate her needs. I feel so helpless. Eventually, another big goal is to have her communicate in a more autonomous way. I'd love for her to tell me what's on her mind, as opposed to have me guide her into a specific topic. This is where PODD comes in. We hope Caroline will start using this communication system expressively soon.
This development was the result of a team effort. I want to thank Megan (Caroline's speech and language pathologist), Linda Burkhart, her school teacher and speech therapist, and everybody who believes in her potential.
Caroline picking out a snack.
Caroline choosing an activity.
This is our home-made eye gaze board. Right now, it enables Caroline to use her eyes to communicate "yes," "no," and "I want." The board is also training Caroline to eventually apply the same method of communication to an eye-gaze computer.
Outside our home, we use the "yes" and "no" switches we made. We hold them up at a similar distance as the images on the eye gaze board.
We use laminated pictures to facilitate choice-making. Have I mentioned how much I love laminating?
We are still in the modeling phase of PODD . We're currently reinforcing the meaning of the images in the first few pages of the book by showing them to Caroline when we use key words (we plan on gradually shifting to only using the book in the next few weeks).
Here's a video of Caroline and I chatting and playing. (warning: this video is almost 8 minutes long!)
Caroline had a playdate with Daisy this past weekend. They dressed up in their costumes and watched Yo Gabba Gabba videos together. For me, the best part was watching Caroline having fun with Daisy without needing my hand-over-hand assistance.
My friend Sherry (Daisy's mom) is just so good at finding activities the kids can all enjoy together. She's also great at answering questions and always pointing out the similarities. Please click here for a great post Sherry wrote on how to talk to young children about Caroline.
When I watch scenarios like the one pictured below, my mind often races to the future. Will Caroline have friends in 5 years? In 10 years? I want to think "yes, of course she will!" But the truth is that I just don't know. I then have to stop myself from thinking too far ahead before I ruin a perfectly nice moment...and just focus on what's in front of me right now. More often than not, it works.
I never really know how to answer that question without burdening people with what is essentially a conversation stopper.
The truth? Some things get easier. Or maybe we just get used to dealing with them. Other things seem to get tougher as Caroline gets older. Another truth? The sorrow never fully goes away. It comes in waves. I've just learned to tuck those feelings away where nobody can see them. I especially never want Caroline to sense that her condition makes us sad.
I'm not the same person I was before I became acquainted with Rett Syndrome. I don't have the same dreams. I don't have the same patience or energy. My perspective and outlook have certainly changed, perhaps for the better and perhaps for the worse too. Strangely though, I like the "new" me. I'm more honest, more authentic ...and so are my relationships.
We want to give Caroline the very best life. At the same time, we're coping with a reality that is emotionally devastating and physically exhausting. And we're up against this reality every single day. There's no escaping it. This is not just a "phase" in our lives. It is our life. There are a lot of complex pieces to juggle. There are stresses most parents will never have to deal with or think about. A painful example is my constant awareness of Caroline's shortened lifespan. I try to use that information to celebrate her life, but I still think it's unfair and unnatural to know that I will outlive my child.
Mike and I often feel like we are struggling to just make it through this life in one piece at the end. I hate admitting that.
Given the challenges we continually face on a regular basis, we do our best to avoid additional stress that could easily tip us over the edge. We often end up having to cancel plans when Caroline catches even the slightest cold. Coughing often results in vomiting because Caroline has acid reflux, sensory issues, and weak muscles. We've had enough experience with messy vomiting sessions to want to avoid them outside our home. Trips are tough too. After a few taxing experiences this past year, we've made the decision to avoid long car rides and short overnight trips. Being in a car for a few hours exacerbates Caroline's involuntary movements. These movements become more frequent and spastic. They also continue into the night. They keep her from falling and staying asleep. A sleepless night, in turn, messes with our own ability to recover from an already exhausting week.
What keeps us going? Mike and I have each other's backs. Humor is a huge part of our lives too. We also rely on our parents a lot. We have a great support system. Nursing assistance is absolutely crucial. Connecting to other Rett families is a lifeline. Working out feels like therapy. My career is also important to me--it's one of the few links I still have to my "old" self.
Despite Rett Syndrome and all that it has stolen from us, when I watch Mike and Caroline, I still feel like I hit the jackpot. The good moments definitely trump the difficult ones.