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Bring on the Magic!

September 25, 2014

All our dreams can come true, if we have the courage to pursue them.

– Walt Disney

 

 

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One of my favorite pictures from the last time we were in 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!

Golden Light

September 1, 2014

“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.

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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:

Alex’s Lemonade Stand

St. Jude’s Research Hospital

Band of Parents

Do you feel like you need some numbers? Here you are:

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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.
~Buddha

 

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*I’ve written about this before too:  Light it Up Gold,  September Gold

 

By Any Other Name…..

August 1, 2014

 

 

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.

Awesome. (sarcasm)

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.

Time.

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.

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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…..

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We also invested in some kayaks, and have been kayaking nearly every afternoon- at least the days we’re not at the amusement park. ;)

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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.

 

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My side of the family on the dunes of Provincetown

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One of my favorites in Provincetown- Cabot Candy where they make the saltwater taffy…. So many choices… mmmmm. ;)

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The excitingly busy streets of P-town.

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Building a teepee with my husband’s parents.

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Hang on! Mary’s at the wheel of a Ford Model T! ;)

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Discussing an old car with his grandparents

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All this vacationing can make a girl thirsty!

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A sleepover with a new little cousin

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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.

 

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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.

 

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Quietly

July 19, 2014

“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.”
― Epicurus

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….

A word.
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…..

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(Image is of Mary in a garden. She is smiling.)

Overflow

July 4, 2014

“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

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(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)

Amazement

May 29, 2014

If I have a monument in this world, it is my son.
~Maya Angelou

Oh, my sweet boy.

Ten.

Ten years.

There are so many things I could say right now. So many things I want– I need to tell you.

You are, quite simply, the best thing that has ever happened to me.

You were a surprise. Twice! First when we found out you were growing inside of me, and then when you decided that you should make your grand entrance a full month early. But you are the best surprise I can imagine.

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You are an adventure. You never seem to stop moving. It’s full throttle all the time with you. And even on the rare occasion when your body stops moving quite so fast, it’s as though I can still see the gears in your head spinning, processing, inventing, and savoring life.

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You live life with such intensity. You are an amazing person. You are intelligent, considerate, caring, loyal, incredibly strong and sensitive.

You amaze me. You have to work so hard at your friendships. The effort of interpreting the social world takes its toll on you. I can see it. I can see the exhaustion at the end of the day. But, I’ve never witnessed the level of friendship that you show to people. As hard as it is for you, you go out of your way to befriend the underdog. Or maybe it’s just that you sense something familiar in them.

I’ve seen it in the way you interact with your sisters, the effort of the gentle calm you manage to give them, even when in the midst of your own storms.

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(Photo by Sara Piazza)

You are a gift. Not just to your sisters, but to everyone you meet. I’ve watched you with your other autistic friends, whether or not you knew that they were also on the spectrum, there was a special kind of magic there. And I know that those days are the most exhausting for you. I know that even the fun comes at a cost. But you amaze me each time for a different reason.

Everyone who knows you admires you. You might not hear them, but as you take off down the hill on your dirt bike, they will comment to me on how much you’ve grown up. How you handle yourself so well in those places that used to be impossible.

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I know it’s still hard. I know there are days when you struggle mightily – more than any little boy should ever have to. But I remember where we came from too. And I see the same stories repeated over and over by other moms, here in this strange cyberland. And I tell them about what used to be for you because it may help them to see the amazing young man you have become as a future for their own children. Did you know that you do that for people? That people who don’t even know you adore you?

When you were little, we just didn’t know, we just didn’t understand why you were struggling so much. We just thought you were incredibly shy when you shut down on the t-ball field. We thought you were just an overactive little boy when your preschool teacher kept pulling us aside to tell us what had happened that day.

We blamed ourselves for not giving you enough. For not giving you enough friends, enough discipline, enough routine.

And when things kept getting worse, I kept you and your sister home. After carrying you kicking and screaming out of the mall and church enough times, I gave up. We would stay home for days at a time.

It was so hard. It was so isolating. For all of us.

But when someone finally uttered the words autism to us, it was a game changer. There was a learning curve, to be sure….

But now that you’ve been given the right tools, the right village, the right supports…. You amaze everyone you meet. You inspire more people than you know. You have friends- such good friends. And you are a good friend in return.

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(Photo by Sara Piazza)

I am so proud of the man you are becoming. I know you think I talk too much. You tell me I use too many words. Maybe it’s because I can’t find the right words right now to tell you how very much I love you and how proud I am of you.

I love that this little boy who gives the obligatory lean-style hug, will on occasion spontaneously hug his mama. And have I told you how much I love watching you and your cat, Enzo? The two most active creatures in the house, snuggling together. The you each rub your heads against each other in the morning, every morning. The way you know that he will calm you when you need it. That you have identified one more tool in your box that can help you manage a difficult day. And this. This is beautiful.

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You changed me. And just like I still tell you every night before bed, I must be the luckiest person on Earth, because of all the little boys in the world, God gave me the very best one.

Happy Birthday sweet boy.

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Closer to You

May 11, 2014

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(Image is one of my Grammy holding and gazing adoringly at her newborn first great grandchild- you know him as Troy)

Death is nothing at all.
It does not count.
I have only slipped away into the next room.
Everything remains as it was.
The old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, that we are still.
Call me by the old familiar name.
Speak of me in the easy way which you always used.
Put no sorrow in your tone.
Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without effort
Life means all that it ever meant. It is the same as it ever was.
There is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval, somewhere very near, just around the corner.
All is well. Nothing is hurt; nothing is lost.
One brief moment and all will be as it was before.
How we shall laugh at the trouble of parting, when we meet again.
~Traditional Irish Saying

(For context, please read the old post this came from by clicking here. Thanks.)

It’s been a little more than two years. But she is still here. Some days, like today, it feels like she is even nearer than when she was living. Days like today the memories of all the little things she did come flooding in, like the way she would stand in the doorway of her apartment waving enthusiastically at us as we ran down the hall, and watching us as we waited for the elevator, or the cans of soda and full-sized candy bars she would keep in her fridge to offer us when we came (and how I think she probably did it just to drive my mom crazy!) the way she would do a little wiggle dance before an excited hug, or the little sayings she had, “Gotta get my bearings here,” when parking a car, or “it’s just a material thing. Material things you can replace, it’s people that matter….” Funny how that works….

My husband lost his wedding band this morning. To say that he was distraught would be an understatement. He’s been on a trip in France all week. He’s been itching to get home to us. He’s actually even been complaining about the food- he feels like he’s gaining weight on all the pastries! (yeah, not feeling too badly for him on that one… ;) ). So this morning he decided to go for a run. He put his ring in his pocket, thinking it was somehow safer there. During his run, he continuously stopped to take pictures of European cars for Troy. At some point, while taking his phone out of his pocket, the ring must have fallen out. It’s gone. He looked for it all day. He heads home in the morning. As he was telling me about his awful day, I suddenly heard my grandmother’s voice echoing in the simple words I spoke- “It’s just a material thing. Just a material thing…” When I hung up the phone I smiled a little at how near she felt to me right then.

As I walked over to the dresser (the one that used to be hers) something drew my hand to my top drawer. Suddenly I remembered, the week that she had died. I remembered sitting with my sisters pouring over all of her old jewelry- much of it costume jewelry. I remember laughing about the giant clip on earrings she loved so much. I remember one sister being insistent that she get the engagement ring, the other wanting my grandmother’s wedding band. My husband later seemed confused as to why I didn’t ask for either. The truth was, I felt enormously guilty that I hadn’t been able to be there with her as much as I would have liked during the last years of her life. My focus had shifted, as she would undoubtedly say was appropriate, to her three great-grandchildren. We lived 600 miles away, and phone conversations are difficult for me under the best of circumstances, but it became a general impossibility with her quiet slurred speech competing against the constant banter of my babes. I visited her every chance I had, but still I felt like we had been distanced. And I remember looking at the jewels that my sisters were claiming and thinking this was how it should be. There should be no bickering back and forth right now. That’s not what Grammy would have wanted.  I took the ones that no one seemed interested in, the costume jewelry for Joyce, a few old rings and necklaces that I had bought for her over the years, the watch she bought while we were in Ireland together, but nothing that I thought my sisters might be interested in.  Then a tiny white box of very plain wedding bands emerged from the pile, and my sisters didn’t want them. One was broken- cut, in fact. The other had a simple spacer on it. They had belonged to my grandmother’s parents. My great-grandmother died when I was 7, a year before my youngest sister was born and probably to early for my middle sister to really remember her.

I quietly took the rings, relishing the quiet memory of my great grandmother’s quick wheezy laugh, and the gentle Irish brogue with which she spoke. I remember she wore hearing aids and her phone was turned up incredibly loud and being really entertained by that- the whistling of the aids and the super loud phone. I remember thinking she was just so fascinating. I remember loving her and laughing with her. I remember when she went into a nursing home, Grammy would play with me out in the hall so that my parents could visit with Grandma (what I called my great grandmother, because that’s what Dad called her). I remember Grammy letting me race down the halls of the nursing home in an unoccupied wheelchair. And I remember the day I came home from school and I stood in the kitchen while my mother told me that Grandma had died.

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(Image is my great-grandmother (aka Grandma) holding a newborn me)

Material things…. Sometimes they are not just material things, Grammy…. Standing by my dresser, I suddenly had an image of the simple white cardboard box. I opened the drawer, and, there, carefully placed inside of another box, I found it. Inside were three rings. The two bands belonging to my great grandparents, and a third. One that no one could identify at the time, but looked to be a man’s wedding band. I scooped them up and took them to the jeweler. The band once broken is being mended, it’s mate, is being resized to fit the great-granddaughter’s finger. The third band, is perfect, as it turned out. I think it may have belonged to my Grampa, Grammy’s husband. It is rose-gold, hand engraved, and apparently very rare. My husband comes home tomorrow, and we will again have matching bands. And the third band, it currently sits on my index finger, as a reminder of the love that flows between here and eternity.

As my children and I were strolling through a mall on our way to one of our favorite restaurants this afternoon, the scent of fading tobacco drifted through the air. There is a tobacco shop across the hall from the restaurant, but this scent felt different. It was distinctly the scent of my grandmother’s apartment. I smiled as I breathed in the scent, soaking in the memory, knowing that she was near. And I know she’s been with me even more now than before…

Certainly she was with me today, guiding me, finding the rings, comforting me with memories. Memories of her, and even memories of how much she loved my husband. I used to feel the need to jokingly remind her that “he is a little young for you, Grammy…” They would pal around in their matching black leather jackets together. He would easily offer her his mechanic’s jacket on a chilly evening and she would happily accept. She would thank him for culturing me when she found out the first gift he ever gave me was a Frank Sinatra CD. So I know she will be smiling on us when I give him her father’s wedding band tomorrow. Because maybe it’s not just a material thing after all.

I am ordering a replacement ring from the same shop in Dublin that crafted the first pair, because those are ours. But it’s nice to know that until it arrives, we will still have a perfect pair, and who knows, maybe we’ll keep wearing both, although Joyce is already eyeing those simple bands, in love with the legacy of them.

So maybe it’s not the Mother’s Day gift I had expected. But I can’t think of anything nicer than being able to spend this weekend, in some way, with my Grammy and Grandma.

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(Image is an old one of my two grandmothers- Grammy ( my Dad’s mom, on left) and “Mum” (my mother’s mother- hey that’s what she called her, so that’s what I called her..) I was so blessed to have had all four of my grandparents and one great grandmother when I was first born, and although Mum is not a part of this story, she still holds a very special place in my memories and in my heart.)

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