“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you’re going, but you know that so long as you spread your wings, the winds will carry you.” ― C. JoyBell C.
(Image is of Mary trick or treating at school with one of her iPads mounted to her wheelchair. On the screen are two icons, one is “Happy Halloween, and the other is “Trick or Treat.”)
We’ve been struggling with this whole language thing for years. I know she has so much to say, so many thoughts and ideas just churning in that beautiful mind of hers…. We’ve tried speech, American Sign Language, PECS, and multiple iPad programs. The iPad is the most consistent formal language we have from her.
So much is going on in that beautiful mind. You can see it… Just watching her think is a gift…. But what is she thinking? What wonderful little morsels of dreams are swirling around in her head? She has no way to tell me….
So today, after three years of working with the iPad on our own, we finally went for a formal AAC evaluation. She has had the same program for three years. Over the years, the data has built up, and the program doesn’t run like it used to, but there are so many more communication options for her in it now. It has been a gift to have this tool- to have some method of proving to teachers that, yes, she does know what they are talking about, and yes, she is understanding the concepts… But still, she cannot navigate it independently, so we have to guess at the right questions to ask… Her hands fail her frequently, isolating that pointer finger is still a major hurdle…. It’s the best we have, but it is far from perfect.
Today we met with the experts. Years of speech therapists, finally we found our way to the AAC specialists. At first I resisted, thinking how much more therapy could we cram into a day? We already have an AAC program….. But then I suddenly became oddly hopeful- maybe they would have a silver bullet- some mind-reading device that could finally unlock the door for her….
We were met by two speech therapists, an OT and a grad student. Our feeding therapist stopped in as well, and Mary’s behavioral aid came along for the evaluation. It was clear that this was all hands on deck. And they saw clearly where the issues were. They were impressed by her tenacity, by her intelligence, by her joy. But they could see what in many ways I feared. This was not necessarily the autism that was keeping her from progressing on the iPad- it was physical – neurological. It was not some nuance that could be taught or quickly overcome with a different program or device. Her wrists are weak and the effort it takes to lift them at the angle needed to position her index finger in just the right way to strike the button is exhausting and frustrating. Low muscle tone and lingering hand apraxias taunt her. Because she has a thin corpus callosum, it has always been difficult for her to bring her hand across the midline of her body, leaving the buttons on the left side of the screen frustratingly far from her right hand. And they pointed out to me that in many cases, children with this type of brain structure may not know which hand is going to come up when they decide to lift a hand to make a selection- an added level of frustration and motor planning for her to overcome. The visual field may also be overwhelming to her on pages with too many choices. She has always been fairly consistent when choosing from a field of 3 and has worked her way up in some areas to a field of 8, but after three years, that’s as far as we have gotten. It is far from conversational or useful in terms of navigating the app independently.
I get angry thinking of the amount of effort it takes for her to answer a simple question with yes, or no, or more, or finished. There’s the processing time it takes for her beautifully wired autistic brain to translate a question and formulate an answer. But then she has to overcome so many physical barriers to simply lift just one hand, balance her torso, lift her wrist, make a fist and extend just one finger and somehow manage to guide that finger to the correct response on the screen, assuming that the word she wants to say is even on the screen and she can find it. I have to find an easier way for her. There has to be a way…..
They did have some suggestions, some wrist support to prompt her to hold her wrist up a little better. More support for her when she is seated so that she feels more secure lifting an arm to make a choice. A list of physical accommodations. A slew of new devices and programs to look at. An overwhelming amount of possibilities, but a lot of caution, a lot of hesitation… and no silver bullet, no magic key. We will start a new round of speech therapy with a new team of therapists, pairing a speech therapist with an occupational therapist in intensive sessions….
As kindergarten looms on the horizon, I am starting to feel a renewed sense of urgency to find some reliable means of communication. I fear the hushed conversations among some members of her own educational team, I am tired of screaming into the wind that she understands all of it, she knows the material, please stop re-teaching her the same concepts she has already learned, over and over again…. But with no means to tell them herself, they brush me off as an overly optimistic mama bear, someone living in denial.
She is amazing. She is smart. She is attentive. She wants to learn so badly. I feel so much like I have failed her here, in not being able to find a way to uncover her voice, to give her the means to prove herself, because sadly the burden of proof somehow falls to a five year old little girl. It is we who should be ashamed that we have not yet given her the means to communicate with us. But now, with a new team filled with new promise, I am hopeful we will find something. What that will look like, I have no idea. But I do have hope, because I have her. She is a beautiful, joyful, loving soul filled with promise, filled with stories and ideas, and I know that someday those ideas will find their way out. For now, I suppose the best we can do is to just enjoy the excitement of watching her unfold her wings. And that is a gift.
(Image is of Mary, dressed as Princess Anna for Halloween. She is holding a leaf in her hand and looking up towards the trees as though to thank them for this precious gift. The sun is setting on the forest behind her. )
Five years. My baby girl is five years old today. I have to keep repeating it to myself, to make it real…. She’s not a baby anymore. She is growing into such a strong intelligent little person. She is advocating for herself now. She is engaging in life on a whole new level now, no longer the little baby to be carted around by her mama and told what to do by her sister and brother… She’s a big kid. She’s five.
We celebrated her all last week in Disney World. (I promise a post of pictures and details on that later. 😉 ) There couldn’t have been a more perfect place to celebrate my little princess. My husband says she is like a completely different person when she is there. If you don’t believe in magic and pixie dust, then spend a day there with my sweet baby girl. You will be swept away by all that magic you say you don’t believe in. My normally serious and observant little girl becomes a cheering, giggling smiling royal princess when she is surrounded by all this magic. And of course, thanks to her birthday button, everyone at Disney knew her and wished her a happy birthday.
But the real treat came this morning at school. As I walked her in, I could hear her friends – she has so many wonderful friends at this amazing school- saying to each other, “she’s here! The birthday girl is here!” As they each approached her, excitedly but quietly to wish her a happy birthday. She happily tapped her birthday button and smiled with delight. My heart was so full, I had to leave before it overflowed oh of my leaky mama eyes.
As special needs parents, we make so many decisions for our kids, and we are often uncertain of whether we are making the right ones. Watching Mary’s friends approach her today with such an easy respect and acceptance and watching her smile so proudly as they started celebrating her special day, it was so clear that we got this one right. They know her- they know not to overwhelm her. They like her, they celebrate with her, and they treat her as an equal. What a beautiful gift they all are to each other.
I am so proud of the person she is growing up to be. I am so grateful for this time we have been given. While we never know what the future will bring us, I am so excited to continue this amazing journey with this little blessing. In so many ways, we have found in her the magic that so many people spend their whole lives searching for.
Happy Birthday sweet Princess.
Why are there so many songs about rainbows
And what’s on the other side
Rainbows are visions
But only illusions
And rainbows have nothing to hide
So we’ve been told
And some choose to believe it
I know they’re wrong, wait and see
Someday we’ll find it
The rainbow connection
The lovers, the dreamers, and me
Who said that every wish
Would be heard and answered
When wished on the morning star
Somebody thought of that
And someone believed it
Look what it’s done so far
What’s so amazing that keeps us stargazing
And what do we think we might see
Someday we’ll find it
The rainbow connection
The lovers, the dreamers, and me
All of us under its spell
We know that it’s probably magic
Have you been half asleep
And have you heard voices?
I’ve heard them calling my name
Is this the sweet sound
That called the young sailors?
The voice might be one and the same
I’ve heard it too many times to ignore it
It’s something that I’m supposed to be
Some day we’ll find it
The rainbow connection
The lovers, the dreamers, and me
– The Muppets
All our dreams can come true, if we have the courage to pursue them.
– Walt Disney
Months of planning, daydreaming, plotting, researching, imagining, remembering….. It all comes down to this.
When I get them up for school tomorrow morning, Mary will have her iPad out. She will tell them. Last time, the little joke was that she was the only one of the three who could be told, since she wouldn’t tell. This time, the tables are turning. This time, she will do the telling.
We’ve been practicing. Her teachers have been getting excited with her. And today, on the way home from school, I really thought she might spill the beans. She was dancing, flapping and giggling all the way home. She knows. She is excited. She is so ready.
Tomorrow morning, when they come downstairs for breakfast before school, Mary will use her iPad to tell her big brother and sister that instead of school, we are going to Disney World!
The best part? We’re celebrating her fifth birthday while we are there. Our amazing little miracle is turning five. If you’ve been here for a while, you know why that’s a big deal. You know how big a deal it is that she will do the telling tomorrow. Tomorrow the magic begins. Magic celebrating our little miracle. I promise pictures. I promise I will do my best to tell you how the new and much talked about disability system works for us down there. But more than all that, I promise to savor every minute of it.
Right now, I have to get back to packing!
“May it be a light to you in dark places, when all other lights go out.”
– J.R.R. Tolkein
It’s September. Things are busy. Really busy. Kids are transitioning back to school. I am working overtime trying to make and laminate little picture schedules for each of my three, trying to get a new routine in place, communicating back and forth with new teachers, trying to help them to understand the needs of my little crew while trying not to make it sound as if I am trying to tell them how to do their job, getting a new year of Girl Scouting underway, and planning something spectacular for my kids. (And apparently writing a lot of run-on sentences!) It is a busy time of year for everyone.
But I am reminded to be grateful. Grateful that my children are healthy enough to go back to school right now. Grateful that the seemingly endless rounds of doctors appointments are just monitoring, watching. Grateful that even though Mary is being closely watched by the hematology team, she is not considered an oncology patient. Grateful that even though we had a brief scare in preschool, Troy’s counts came back normal and we were able to disregard the enlarged spleen. Grateful that the countless tests they have run on Mary, searching for cancer, have all come back negative.
People will often ask why they should be “aware” of a disease, especially if it doesn’t directly affect their own family. Why should they care? Why should they pin a ribbon somewhere or change their porch light, if it doesn’t affect them personally?
My answer: Because it didn’t affect these families personally either. Until one day it did. Until one day that doctor walked into the exam room and told them four little words that rocked their whole world. “Your child has cancer.” Can you imagine? Can you even fathom the sheer terror that must come with such a statement? Can you imagine the helplessness? Because until that one day, it didn’t affect them either.
It’s September. It’s the last weekend of summer. It’s a time for barbecues with family, jumping off a rope swing into the lake one last time, catching a leaf as it falls from the tree, sitting next to a fire in the back yard sipping on a glass of chardonnay with good friends. But it’s also a time when a certain group of families asks you to do something very simple. To pay attention to their children and their fight. To put a little gold ribbon on your shirt or on your bag, or maybe change the bulb in your front porch light to gold (which supposedly helps keep the bugs away at night too, so win-win. ) Even if you don’t think this affects you. Awareness leads to funding and funding for research leads to treatments and hopefully one day a cure. But awareness does something else too. It brings community. It brings light into the darkness. It brings hope. And I can’t imagine a moment when community, light and hope would be more needed than when someone hears those four terrifying words.
So, what can you do? Go to the fabric store and get a little bit of gold ribbon and a safety pin. And stick it somewhere. Then, when someone asks you what it is, tell them, it’s for Childhood Cancer Awareness Month. Well, gee, does that sound too easy? What, no bucket of ice water to dump on your head? I’m not asking a whole heck of a lot here. Just a sea of gold ribbons. It’s a pretty color, it will match your fall wardrobe. Go for it.
We got a few extra yards of ribbon and made enough for our school. I even got my husband and his fishing buddy in on the craft project.
Then, if you’re feeling like maybe you want to do a little more, make a donation. I’ll make it easy for you. Try clicking on these links:
Do you feel like you need some numbers? Here you are:
I know a lot of folks who come to this space are special needs parents. Whether it be autism, mitochondrial disease, epilepsy, or a host of other conditions that affect our children. I think that we, as a special needs community, understand better than most, just how important and comforting awareness can be. Awareness does not have to be a competition either. We can celebrate Childhood Cancer Awareness Month in September, and still get out our green ribbons in a couple weeks to celebrate Mitochondrial Disease Awareness. Green and Gold actually go pretty well together- they happen to be the school colors for my children’s school. So go ahead and get your bling out.
And if you’re feeling generous, make a donation. It can be financial, or it can be a platelet donation at your local blood bank to help a child going through cancer treatments. Or sign up as a bone marrow donor. There are loads of ways that you can directly help a child with cancer. But you can start with a little piece of golden fabric.
Thousands of candles can be lighted from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.
What’s in a name? That which we call a rose
By any other name would smell as sweet.”
-William Shakespeare, Romeo and Juliet (II, ii, 1-2)
I’ve been back and forth about writing this post. It’s been a very long time coming. And yet, it’s still not quite the whole truth yet…. But perhaps it’s something.
We finally have a semi-official diagnosis for Mary. I met with genetics again last week. It’s nothing really earth-shattering, except that some scientists (the ones in Europe I have been back and forth with) now have their paper published in the latest edition of Nature. They linked the set of symptoms that they believe to be related to the same mutation that Mary has to something called Primrose Syndrome, something that previously only 5 people in the world had ever been diagnosed with. And now, on paper at least, my sweet little girl has Primrose Syndrome.
But does it fit? Well, yes and no. She has some of the features mentioned, but certainly not all. I could go line by line and argue this way and that, but the fact is, that there simply isn’t a large enough sample size to be sure of anything. She has a lot of concerning symptoms that are apparently not part of this diagnosis. But then again, when there are only five other stories to compare to, why isn’t her story just as valid as those of the others?
There is certainly enough evidence for me to look at this seriously. To consider that the path that has been followed by those who have gone before her in this diagnosis may be relevant to her. It is, as the doctors have long suspected in her case, a progressive and degenerative disease. That said, it is not as fast-moving as many of the others we have looked at. If the researchers are correct (which, in my mind anyway, is still a pretty big if), then she will likely experience brain calcifications, joint contractures, and muscle wasting by her thirties. Cataracts and insulin-resistant diabetes should also be expected.
So what the hell am I supposed to do with this?? When there are only five people in the world with the same syndrome, it is highly unlikely that a big pharmacy company is going to put this on their priority list….
So what do we have?
There is only one way I can answer this.
We have more time than what they told us before…. So much more…. For that I can’t help but be grateful.
So, in our typical fashion, we’ve been doing our best to enjoy that gift and have a little fun this summer. I cut way back on the therapy schedule. Irresponsible? Perhaps… Worth it? You bet.
We got season passes at a local amusement park. It’s an hour and a half away, but they accommodate my kids, and they have an attached water park. We’ve been there three times in the last week- therapy in the morning, amusement park in the afternoon. It’s an exhausting schedule (especially since for whatever reason, Daddy has had a surplus of trips this summer, so I’ve been flying solo a lot..) but I would do anything for that smile.
A few times while we were here, I met the same woman, waiting in the same spot for kids to get off of a roller coaster. The first time, we talked for a while. She took immediate interest in Mary. I recognized the look in her eyes as she cautiously asked her questions. It was a familiar look. Her son was a special needs child too, she explained. She had lost him, only a few short years ago. On another day, when we met again, it was already as though we were old friends. Somehow, once you’re part of this club, even after your child leaves, you will always belong. She spoke of him with such love, as though he was still here, and in a way, even though I only knew him through her story, as she spoke, it was evident to see that he was… still here… It hurt my heart to see the pain in her eyes, but to know, so clearly, how blessed I still was to have my three beautiful gifts still here, still laughing on the rides, still enjoying it all…..
We also invested in some kayaks, and have been kayaking nearly every afternoon- at least the days we’re not at the amusement park. 😉
We even managed a couple of weeks so far to spend with our families up in Cape Cod. We enjoyed beaches, toured sand dunes in Provincetown, and even got to Heritage Plantation where the kids got to sit in a real Ford Model T. We made new friends, it seemed, wherever we went. Folks would notice Mary’s hearing aids and suddenly we had a whole new deaf community to meet and sign with, finding familiarity in a shared language. We found new buddies to jump in the surf with because wherever Joyce goes, she makes a friend.
That’s some of our summer so far… We have so many more plans and there is so much I want to tell you about all of this. But for now, the pictures will have to do. Because we’re busy enjoying this gift we’ve been given. We’re busy enjoying this time, and we’re busy preparing for our next adventures.
And what comes will come, and I suppose that there’s not a whole lot we can do about that. This is the same limbo we’ve been living for years now, facing an unknown future, trying our very best to make the best of what we have, right here, right now. Trying to enjoy the light through the trees, dancing in the silence, laughing at the moon.
“Do not spoil what you have by desiring what you have not; remember that what you now have was once among the things you only hoped for.”
I’m a little afraid to say this out loud. I’m afraid to say it at all, because so many times before we’ve seen a glimpse of this, and then it has disappeared.
But I’ve been watching this come for a little over a month…. Here and there…. A taste….
I thought it was just a stimmy noise she was making….. I was afraid to hope, to believe that it might be… That it might just be what it is….
One perfectly shaped, spoken word.
She is calling to me. “MaaaMaaa…”
She is asking for me. She is speaking.
One word. I don’t know how long we will get to keep it this time…
But, for now…. It is a rare and precious gift…..
(Image is of Mary in a garden. She is smiling.)