(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.
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.
(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.)
“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
― Henri J.M. Nouwen
It’s been a rocky last few weeks in this house. It’s been stressful, filled with anxiety attacks, meltdowns, frustration… and gratitude.
I’ve heard it said that an autism parent’s job is not just to prepare his child for the world, but also to prepare the world for his child, meaning we have to make the world that our children enter into one that is a little more understanding. I’ve always agreed with that sentiment, but I think on some level I worried that it might be unattainable for my little crew.
I was wrong.
Thanks to you.
We’ve always been pretty open about our three children and their three different brands of autism. Even with their friends. Maybe especially with their friends. Just before Easter I found out that Troy was being bullied at school. To be fair, the bully has his own personal issues, but still, I was livid. I’ll admit, when I found out, I had a few choice words I wanted to share with that child. As it turned out, I had to get in line– behind an entire class of fourth-graders. It was all I could do to remain composed in front of Troy as he told me how all of his friends had surrounded him and confronted the bully head on. Because they genuinely like him, for exactly who he is, just as he is. As far as Troy’s little band of brothers was concerned, nobody was going to be allowed to pick on him for his differences. It was just a little harder to stay angry when my heart was bursting with gratitude for these little boys.
And then on Easter, we made an attempt at a crowded holiday mass, knowing that it was unlikely our crew would make it through. And we didn’t. Not even close. But, we were surrounded by friends, so we smiled, got up and got out. Sure, there were probably a few dirty looks for our disturbance, but after having been on this wild ride for a few years, I’ve managed to train myself to pick out the gentle smiles of understanding in a crowd. There was a time (in fact there are still many times) when we wouldn’t have even tried. Or when we did, I was never sure who was in more tears- them or me…. But now, with more people sharing in our journey, it’s… different.
And then, last week, I drove the kids up to Massachusetts to see some of the extended family. They are people we don’t see every day. They are people who don’t see the ups and downs, who maybe shouldn’t be so familiar with the little things. Many of them, are some of you. And that made it so much easier.
Easier because I didn’t have to explain over and over again why Mary still isn’t talking. Because you already knew.
Easier because I didn’t have to ask people to wait for Joyce’s response to a question, or to be patient and try to decipher her scripts as she processed the excitement around her. Because you already knew.
Easier because I didn’t have to apologize for Troy hiding in the bedroom with his computer, escaping the overwhelming number of people that descended on my parents’ home for a party celebrating my new nephew. Because you already knew.
I didn’t have to have to have the same conversations over and over again, because you had taken the time to read it in snippets here. And it’s maybe a few minutes out of your day every once in a while, but it meant the world to us. Because it connected us- because it made our two worlds feel a little less far apart.
I had an old blogging friend over for a short visit last week before we left. We found ourselves talking about the separation between the blogosphere and the “real” world, how she has her blog as a very separate entity from her “real” world friendships. But she said something that struck me- something that in so many ways felt like a truth I already knew. She said that in many cases, it was easier to talk to these virtual friends- the bloggers- than it might be to say something to someone you have to see in real life every day. It felt like truth because, at least for me, it is easier to pour it all out here, onto a page, than to say it out loud.
While my corner of the blogosphere is relatively small, it is sacred to me because you are here. And I know you are all here for various reasons. Many of you are friends I have met through other blogs. Many of you I have found along this bumpy road of special needs parenting. Many are family and friends, or friends of friends, following along via Facebook… Or perhaps you just stumbled upon this space while searching for something totally unrelated. But you stayed long enough to read this. And you stayed long enough to get a glimpse into our little world, and maybe it changed you.
And however you got here, maybe it helped you to understand our family just a little better. My hope is it may have helped you see my children (or even your own) through a different lens. And maybe you slowed down and noticed the light through the trees in a different way, or the dancing water droplets in the fountain. Or maybe you offered a smile or a nod to another family struggling in line at the grocery store.
Or maybe, as I clumsily tried to explain why my kids were acting the way they were, you just smiled in a familiar way that said you already knew…
So thank you for being here. For listening. For following. For accepting. For being a family to us- whether that be in the “real” world, or in the “virtual” one. For changing a little corner of the world just by making it a safer place for all of our children.
“You must remember, family is often born of blood, but it doesn’t depend on blood. Nor is it exclusive of friendship. Family members can be your best friends, you know. And best friends, whether or not they are related to you, can be your family.”
― Trenton Lee Stewart
“Out beyond ideas of wrongdoing
and rightdoing there is a field.
I’ll meet you there.
When the soul lies down in that grass
the world is too full to talk about.”
It’s April. When our family first started down this path, April felt momentous. It felt like this amazing community of people coming together quietly, sharing stories, sharing support, just sharing….. It felt innocent….
Now it feels loud. It feels angry. It feels like groups of parents fighting against groups of autistic adults. It feels like there is absolutely nothing anyone can do or say that won’t piss off someone.
Large companies like Panera Bread and Chili’s Restaurants are confused on how best to show their support. They want to do something to mark the month, to help the folks who need it. So they pick a charity, and suddenly folks start screaming from within the community – that is the wrong charity. So they pick another…. More folks start yelling…. So they give up (I mean, really, at this point, wouldn’t you?) and even more people start yelling and boycotting. You just can’t win with this community.
I think we’ve forgotten. I think we’ve forgotten who this is supposed to be about. We’re so busy being insulted, we’ve forgotten. We were supposed to be spreading awareness and acceptance for our children and the autistic adult community they will someday join. We’ve forgotten to listen to them, to the people who get it in ways that we just can’t.
And most importantly we’ve forgotten that we should be building each other up, instead of tearing each other down. So much progress has been made in terms of better understanding, better supports, better advocacy, more community, and more acceptance of differences. But it will all stop if our community can’t stop fighting against each other. We will never get what our children and friends need if we continue down this divisive road.
We’ve forgotten that we should be celebrating instead of fighting. We’ve forgotten the joy. We’ve forgotten to stop and enjoy the dance.
I know there is a lot of hard, but if you spend all of your time focussing on the hard, you’ll miss the incredibly beautiful parts.
You’ll forget to slow down and just be. To just lay in the grass and watch the clouds and rejoice in the trees.
You’ll miss the happy scripts, the joy of her speech as she tells you what your answer to her question will be, and the incredible sparkle in her eyes when you find that connection – because instead of changing her script, you followed it.
And you would miss the ten thousand amazing facts you never thought you’d need or want to know about Wheelhorse tractors. And while you may think you would never care about a Wheelhorse tractor, you would miss the fun (yes, fun!) of planning for and looking forward to the Wheelhorse Tractor Festival next summer, or the countless car cruises and reruns of the British motoring show, Top Gear. And if you missed all of this because you focussed on the hard, you would miss the big thing: his smile and all the joy that comes along with it.
I am tired of the noise. Tired of the anger. I don’t think that’s what April was supposed to be about. We need to stop fighting against each other and try to remember who we were supposed to be fighting for. And that doesn’t come from arguing about vaccines, discounting the voices of autistic adults who have worked so hard to express themselves, or jumping all over a company that was trying so damned hard to support our community and then finally, understandably threw their hands up in frustration. It comes from supporting each other, and more importantly if comes from supporting our children, autistic or not, by slowing down and trying to see things from a different perspective.
“It turned out all she could see was the fountain; she’d taken it in and was ready to move on to the next sight.
I hadn’t finished looking at the fountain yet because, to my vision, the fountain was a collection of dancing interlocking patterns that each needed attention.
Though it took me much longer to take in that fountain, I realized that the richness I experienced was so much deeper than most people ever see. I began showing her the textures in the water, the way you could see the individual water drops held in mid air sparkling in the light, the unusual colors blended in the pool .. endless vignettes that to me were huge and visceral and to her were just a fountain.”
~Michael Moon, autistic musician, artist, and author
Maybe we need to be reminded. Slow down. Enjoy them. Stop trying to fix them. Stop fighting about them. Just enjoy them for the gift that they are.
“When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies.”
― J.M. Barrie, Peter Pan
Troy is giggling mischievously as he runs around the corner and pops out from behind the wall. The glint in his eyes is unmistakable joy, because as he emerges, Mary is laughing so hard she can barely catch her breath, celebrating by waving her little strips of paper excitedly in front of her. Happily, Joyce is behind Mary laughing equally hard as she feverishly flaps her fairy dolls up and down in the air, as she bounces up and down on her toes. They are all laughing. They are all rejoicing in each other’s joy.
These three children are autistic. You’ve probably heard about the newest autism rates released by the Centers for Disease Control. Based on data collected four years ago, 1 of every 68 children in the US has autism. Three of those happen to be mine.
And if you happen to be at all involved in the autism community, you have probably seen or heard the passionate cries from either side of the aisle about vaccinations, about curing these stricken children, saving them from being lost forever….. Light it up Blue for Autism Speaks, Light it up Red to sound the alarm, save our children, fix them…. There is so much, just too much. It makes my head spin….
Because I just don’t get it. I don’t see that my children and my friends need fixing. I don’t see where they need a cure for who they are. Because in our house we don’t declare victories over autism. We don’t try to recover our children from autism. We don’t try to separate them from a part of themselves that paints every single perception they have with its multicolored brush. And I believe our children are better for it. They are happier. They are more complete, learning to work with their super powers (as we commonly refer to their autistic gifts) instead of trying to hide them or change themselves to conform.
Sure, there are hard days. Lots of them. Life would be simpler, easier, and more “normal” if we didn’t have autism in our family. Life would be simpler if Troy didn’t have hour and half long meltdowns like the one he had yesterday. Life would be easier without the anxiety attacks that come on suddenly. Life would be easier if Joyce could better interpret the social cues in her first grade classroom. Life would be simpler if her language came a little faster and more clearly. Life would be easier if Mary could speak. Life would be simpler if Mary could play with her friends. Life would, indeed, be simpler without the autism.
But we would miss so much.
We would miss the satisfied smile that he gets when the tractor engine starts up and the mischievous glint in his eyes as he revs the engine on his dirt bike. We would miss the seemingly endless dissertations on the marvels of British and German engineering, and the crinkling of his nose as he processes new information. We would miss the pure joy that going to a good car cruise brings him. We would miss the boundless energy and the intensity with which he is able to pursue his passion…..
We would miss the dreamy way that she smiles as she regales us with another story of what her princess dolls are up to now. We would miss the imaginative way she compensates for her struggling language by seamlessly weaving scripts from various movies together in a sort of coherent conversation that for so long was the basis for much of her language. We would miss the bounce of her hair as she happily skips down the hall, and the way she is so open with her affections, and carefree in her expression of joy. We would miss out on the simple fact that fairies are real, and all that that means…..
We would miss the opportunity to watch the trees bend and wave in the wind and the leaves flitter and dance individually in the breeze, as the sunlight filters through the branches. We would miss the floating, bouncing droplets of water in the fountain, or the rush of the waterfall. We would overlook the beauty of the bubbles moving and reflecting the late afternoon sunlight in the aquarium. We would miss the gentle caress of her hands exploring our face, the quiet touch of her forehead pressed against our own. We would miss the joy of the dance, free and intense, as she smiles and squeals in delight, staring into our eyes….
We would miss so much.
There was a time, not so very long ago, when I asked my friends and family to place a blue light on their front porch. So many of them did. They did it not to support Autism Speaks, but to support us, to offer light in the darkness of confusion during those early days of our journey. I am still so grateful for the quiet support we received.
As I explained here in my post Community, my children have come to look to April 2nd as a sort of party day – a day when they celebrate that special part of themselves that makes them a little bit different. But as I have come to understand more about this community, I have found myself torn between wanting to celebrate this day in the way that my children have come to expect and enjoy, and realizing that those blue lights are somehow supporting a group that is hurting my children and the community of autistic adults that they will one day join. So last year I wrote this in Blue Lights and Rainbows, explaining why our house would look a little more like a disco.
And then the other day, my sister, wanting to do something to show her support, but understanding that after Suzanne Wright’s awful op-ed last fall that there was simply no way I could bring myself to ask anyone to support Autism Speaks, asked me what color light she should put up this year. After giving it some thought, I realized, my kids see this as a party day – a day to celebrate themselves, their autistic friends and everything that makes them, well, amazing. So maybe we should quit with the candlelight vigil attitude. Because, despite what Suzanne Wright may think, I haven’t lost these kids to autism. Autism is just one of the many fabulous things that makes them who they are. It brings challenges, but the gifts are still worth the celebration. So no more quiet blue lightbulb. Nope. Those Christmas lights that we just haven’t been able to get down yet (it’s been one heck of a winter. ;) )…. Well they’re being switched back on tonight. Just because we’re not lighting up blue, does not mean we can’t still celebrate our fabulous family.
“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”
― Albert Einstein
Tuesday has become our zoo day. The weather is finally starting to warm enough to have afternoon outings with Mary again. Since Tuesday is not a therapy day, we’ve been sneaking off to the zoo in between picking her up from school and picking up her brother and sister from school. It’s a quick trip- we squeeze in about an hour and a half of zoo time before we head across town to Troy and Joyce’s school, but since we have a membership, it’s no big deal to only see part of the zoo at a time.
So we went last week, and again this week. And if the weather holds, we’ll probably go every week. She’s starting to recognize the routine and was cheering in her own way as we entered the parking lot this week. I felt so grateful to have found an outing that she is finally really enjoying. When she was younger, we would go to the zoo regularly, but it didn’t look like she really cared about it one way or another. I am learning, however, that I should know better. Because even when she doesn’t appear to be paying attention, she is absorbing it all.
She may not look like she is watching, but she is probably taking in more information about that encounter than you or I could ever hope to. This picture was from last week. Last week, she absorbed it all. Today, she celebrated it all, and it was a joy to see. Usually she sits politely in her chair while we wait in line to get in. Today, she was pushing her chair up in the line, hurrying me along, and singing and screeching in her celebratory way. She just couldn’t wait to get into the zoo.
First up on our list today was the red panda. She danced back and forth with him. I wish I had snapped a picture for you, but I was just too caught up in the dance. She was cheering and swaying as he dipped his head down against the glass over and over. He seemed to enjoy the pressure of the cool glass against his head in much the same way that Mary enjoys pressure on her own forehead. They were quite a pair and she was so happy to share in the dance with him. And me, well I just felt blessed to even share the same space with the two of them.
There were of course the old standards, the rhinoceros, lions, tigers, giraffes. These are all fun, of course, but she definitely has some favorites.
and of course, the elephants….
But every time we come, her favorite spot is the aquarium. She loves her precious penguins. They seem to swim right up to her, and the squeals of laughter and delight that they bring are so welcome. But as I’ve shown you before, she has a favorite tank. And I think it has much less to do with the fish inside of it, and much more to do with the way the afternoon sunlight hits the water as it flows into the tank creating the most incredible display of bubbles. She loves to dance with the water.
After dancing with the panda, and cheering for her bubbles, it had been such a fun day. We had counted elephants and discussed the monkeys playing in the trees. All of that was perfect. But just before we left for the day, something seemingly small happened.
We decided to stop and watch the sea lions before we left.
And that’s when it happened.
I pointed and she looked.
I know, it seems small. But I can’t tell you how many times I have pointed at something or told her to look at this, and nothing. I think the official term for it is “joint attention.” Well, it was never there. But twice, while watching the sea lions from above.
Twice. I pointed and she looked.
It is not enough to pray for miracles. We have to be willing to recognize them when we see them. And today, she looked.
A daughter is a gift of love. ~Author Unknown
I’ve never known anyone with such a capacity for love as her. I’ve never met anyone with such a keen sense of justice at such a young age, such a sense of loyalty to her friends and to her brother and sister.
She’s been so much in her seven years. She’s been the dutiful little sister, playing her role in whatever adventure her big brother has dreamed up for them. She’s been the patient big sister, waiting with me through countless doctor and therapy appointments so Mary could get the help she needed. She’s the caring and compassionate comforter, stroking her baby sister’s forehead when she was upset, or patiently trying to teach her how to play dolls.
She is my dreamer. To her all fantasies are real. The princesses in Disney World were there just for her; the dolls in her closet all have feelings and need to take turns coming on outings with us, just so they don’t get lonely.
She is the one who stole her father’s heart. Our little princess who needs only smile to get exactly what she wants from her doting Daddy. She has the most beautiful smile, and a gentle heart to go with it. She is firey and sprited, but dreamy and caring.
Just last week, she asked me to cut her long locks of hair. She’s been having trouble brushing her hair, in large part because of her sensory issues. So she decided, on her own, she wanted to donate her beautiful golden mane to a child with cancer. You’ve probably heard that people with autism lack empathy? This has not been our experience- especially with this little princess.
She is the one who keeps me grounded in the things that are really important- she’s the one I can always blame the dirty dishes on, as she gently and cheerfully pulls me away from the kitchen so we can play dolls or work on a puzzle together.
And even though she just turned 7 this week, she will always be my baby girl.
Happy Birthday Joyce.
“When we truly realize that we are all alone is when we need others the most.”
We saw more doctors this week. Every three months we start making the rounds at the hospitals, but sometimes it winds up just being constant. It’s different and the same each time. New ideas each time, new worries, but no answers….
About a year ago we had our first hematology visit. We’ve been there and on the phone with them many times since then. Mary’s red blood cell counts are low and have been for quite a while. It appears to be a production issue- her body simply is not making enough red blood cells, and there really aren’t any good options to encourage her to make more outside of a bone marrow transplant, but her numbers aren’t quite low enough to justify that either. Since she is still undiagnosed, we still have no reason for why her counts are low, and so we have no idea if they will get worse, or if other types of blood cells will start to change as well…. So we watch… we monitor… we draw more blood… and we wait… we wait for impending doom, or an answer, a diagnosis, a path.
We saw neurology this week as well. I adore Mary’s neurologist. She has become very much a friend on this journey- someone who seems to genuinely understand that remaining undiagnosed is exhausting, lonely and tortuous. When the other doctors on our team seem to want to throw their hands up in defeat, she presses them to keep going, because not knowing is not acceptable. But she is also a great diagnostician. She sees what the others may miss- she looks for the zebras when others are looking for horses. Mary has been having these episodes of suddenly falling asleep, mid task again. She has also been having episodes of unexplained intense pain. Cycles of intense fatigue followed by cycles of intense thirst. The endocrinology team we started seeing last fall has already tested her for diabetes mellitus, common in mitochondrial patients. But there is another possibility- diabetes insipidus, where the kidneys- either due to a kidney problem or a neurological problem- fail to concentrate urine effectively, resulting in constant thirst and lots of wet diapers. This is something that has developed only over the last 6 months or so, and I am hopeful that somehow this is just behavioral- that perhaps Mary is only experimenting with a new sign of sorts- she bangs her fist on her chin, not proper ASL, of course, but it gets her what she wants. Because if it’s not behavioral, then it is another change, and more reason for more worry with no answers. Her neurologist wants to find a way to re-sequence her exome. We had the full exome sequencing done last year, and the results were disappointing. We didn’t really discover anything new about our girl, except for this ZBTB20 gene, that simply doesn’t explain her symptoms. Mary’s doctor believes they may have missed something and that perhaps another lab with different technologies or different technicians may see something that the first lab missed. But the test is expensive and I’m not sure our insurance company is going to want to pay for it twice… She also thinks we should continue seeing her colleague in Cleveland, hoping that between the two of them they may think of something- something familiar about my sweet girl that may give us a road map.
Right now Mary is doing well. She is not nearly as sick as she was last year. Somehow – perhaps it’s been all the snowy days away from germ-filled schools- she has managed to stay relatively healthy this winter. There is no big test result waiting on the horizon for us. But there is still the constant parade of specialists, taking up more and more of her precious time. I have a list sitting here on my desk- 14 more specialists we have to set up appointments with.
Last year I remember sitting alone with Mary, in the hematologist’s office, adjacent to the inpatient pediatric oncology unit. I sat there and waited as he walked out of the room to look at Mary’s blood under a microscope, and a familiar knot, formed and twisted in my stomach as I waited. Because we don’t know, we can never assume. Because I knew that this kind doctor could walk back into that room at any moment and say something to me that would destroy my whole world. It’s like that every time we see a new specialist. And even on those visits that are seemingly routine, that knot is there, the memory of the fear never goes away and it comes back into full focus, every single time I sit in one of those tiny exam rooms with my girl. We watch Mickey Mouse on the ipad, and I try so hard to put everything I have into counting the Big Red Gooey Fish that Mickey is trying to catch in his boat with Pluto, while on the inside the knot tightens and the emptiness of not knowing grows.
I am tired. I am exhausted. There are so many symptoms to manage, so many unknowns to monitor, and all I really want to do is just be with my girl. All I really want to do is be a mom to my kids. But I can’t let it go. There are too many potential disasters on the horizon if every single system in her tiny body isn’t constantly monitored- or so they tell me, but even they don’t know…..
It is so strange to admit this out loud. I have multiple friends with children who are diagnosed with different devastating illnesses. Each day they have together is a hard-won blessing. And while I would never want any of these diagnoses for my own child, and I would do anything in my power to take away their pain, at the same time there is this strange twinge of jealousy- an ache for the community, the bond that comes with a word that defines a set a symptoms. And maybe this hurts even a little more to admit: as much as Mary has improved in her ability to make herself understood in very simple ways- tapping on her mouth to say she’s hungry or thirsty, for example, and as much as I have said so many times that it is okay with me if she never speaks, I still ache for that connection, for some reliable form of communication. When she cries, she can’t tell me that it hurts, or where, or that she’s scared or why… When she’s happy, I can guess at what she is rejoicing in, but she can’t share it with me out loud the way other children can. And while that silent celebration, or that quiet connection we get when she presses her head into mine is so beautiful, I still feel like I am not getting the whole story. Selfishly, I want the kind of back and forth relationship that I see so many of my friends sharing with their children. And somehow going through all of this, all of the unknowns, all of the fear, without really being able to communicate with her in the way that so many other parents can with their children… I just feel so lost, like I am guessing about so much, and then second-guessing myself. And then I feel guilty for even feeling that way, because in reality the connection that we share is so beautiful, it seems selfish to want anything different from what we have…
So many people have told me to go somewhere else- see a different doctor in a different hospital, maybe they will have some answers. But where do we go? You see, while we have seen more than 20 different specialists with Mary, there still is no place, no one doctor to check in with, even if it were to mean a trip across the country, or across the globe. There is no path laid out for us, no road map. We are so very alone here on this journey, with no guide, no map, not even a footpath blazed through the woods. And I just don’t know at what point do we get to stop searching. When do we just get to be a family? And when do we get to stop feeling so lost and alone here?