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.)
“I almost wish we were butterflies and liv’d but three summer days – three such days with you I could fill with more delight than fifty common years could ever contain.”
― John Keats
You won’t find me here much this summer. We’ve been busy, soaking up life. I’m sorry to say you won’t even find many pictures of our summer here yet. We’ve been so busy enjoying this young summer, I’ve forgotten to document it.
But really, isn’t that the point? To soak it up in such deep breaths that there is no need for pictures because those moments simply become imprinted on your heart in ways that no two dimensional image ever could?
We’ve started kayaking together around the local pond near our house. Each of us has our own boat, except Mary who sits in front of me on mine. She loves it. The kayak is low enough to the water that she can run her little hands through the water as we move. Her giggles and squeals of delight mingle with the sound of the kayak cutting through the water as eagles soar above us and great blue herons startle out of their hiding at the edge of the water, opening their enormous wings and taking flight just over our bow. Sometimes we drift in the middle of the pond, while other times we skirt just under the overhanging tree branches on the edges, the leaves on the gently bending boughs tickling Mary’s outstretched fingers as we float by. This is ecstasy.
Troy has been dirt biking every chance he has, sometimes just around our property, other days on grand adventures with Daddy. They load the bikes into the back of my husband’s 1965 F100 and head to the trails. Other nights we have been to the drive in movies. Some nights it’s just me and the kids in my minivan. But when Daddy comes, he brings the truck. Every time they venture out in this magical vehicle, he comes home with reports of which drivers of what cars complemented them on their amazing truck. And each time I smile, enojoying the predictable nature of his excitement…. The way he crinkles his nose, squeezes his eyes in excited blinks and pumps his arms down at his sides as he tells the stories. I fall in love with this man child all over again….
Joyce has been soaking in the lazy days of summer with her netflix. It would seem she memorized each show as she watches it, quietly repeating each word a character utters just behind the script. Her language is increasing in leaps and bounds. Her expression, once translated though these scripts is amazing. She loves kayaking too, she loves the taste of freedom it gives her. She can lead us, exploring the little coves and bays in our tiny lake. She is becoming so independent, so wondrous.
We’ve been busy. And it’s only going to get busier. We are due for another seaside vacation with my family, once this hurricane lets up. We are planning trips to DC, a repeat trip to Gettysburg- we were just there a couple weeks ago for a Wheelhorse Tractor Collectors Club Fair – these are the kinds of things you find yourself doing for your kids- especially when said kid has an Aspergers style obsession with a certain thing.😉 We now have a season pass to a local amusement park, that has such wonderful accommodations for our kids, that I have been able to take them there for the day on my own. And of course, in my “down” time I’ve been working diligently, planning and replanning our top secret mission to that amazing place that did so much for my kids, especially Mary, the last time we snuck down there.
But tonight, as I was tucking my youngest into bed, I was struck by the enormity of what we have been given. So many times we were told that we might not make it here. That we might not be able to enjoy what we are now enjoying with these amazing children. Too many parents, including some friends, won’t tuck their children into a peaceful sleep tonight. Some are sleeping fitfully next to their little ones in hospital rooms. Others have only a grave site to visit. And me? How on earth did I get so lucky? How did I get to have these ones? The gratitude some nights is just so overwhelming. How many times were we told to prepare to outlive her? All those things that were supposed to happen, and just didn’t….. Sure, we have some struggles. But I see so much in this community. So much heartbreak….. So much isolation…. So much sadness… So much fear…. So much hope…. So many triumphs….. So much beauty….. So much love….
It overflows. The love, the pain, the beauty, the gratitude…..
It overflows in the blessing of one soft good night kiss on the cheek of a sleeping angel.
“Listen to the mustn’ts, child. Listen to the don’ts. Listen to the shouldn’ts, the impossibles, the won’ts. Listen to the never haves, then listen close to me… Anything can happen, child. Anything can be.”
― Shel Silverstein
(Image is of the three most amazing children in the world, standing at a cannon on the battlefield in Gettysburg, where we did a quickie visit after our pilgrimage to the Wheelhorse Collector’s Club Festival)