It never gets easier. No matter how sure I am about how fortunate we are, and no matter how much time I spend praying for those other mothers- the ones who are waiting through surgeries beyond the scope of my emotional grasp, it never gets easier.
Today she walked away alone. Into the operating room without her father or myself. She’s in good hands. I really like the surgeon, and I’m a tough sell. Even having repeated this waiting twelve times before- it never gets easier.
I tried on the way in, to make her feel like it was not such a big deal. That was dumb. It’s a big deal. No matter what. I was trying to make her feel better. It didn’t even make ME feel better.
Because the truth is, we know. We know it could be worse. We are grateful all the time. But that doesn’t mean it’s not important. It doesn’t mean it’s not a big deal, and it doesn’t mean it doesn’t matter. Even if it’s the third one in the last 12 months. Even if it’s the 13th surgery.
Maybe especially if it’s the 3rd one in the last 12 months….
You should know that I heard you. I heard what you said as you glared at my daughter. I saw you shake your heads in disgust and say, “There’s nothing wrong with that girl, I saw her walking at the hotel last night.” You seemed proud of yourselves, like you had “found us out.” Maybe that’s why you weren’t so quiet. Maybe you wanted the others to hear, and to look at us in disgust as well, while the bus took 4 extra minutes to load my daughter on the wheelchair ramp.
I thought about what you said on and off through the day, and that alone made me mad. The fact that I even gave you a second thought was so much more than you deserved.
Then we caught the same bus home, and I really struggled to hold my tongue as you went at it again.
But, on the way home, I was less interested in you, and much more concerned for my daughter. She wasn’t well, again. And in some ways we are used to it, but it’s never any easier to see. As magical as it is here, it doesn’t change our reality.
Our reality, the reality of daily struggle with an invisible illness, is with us all the time. And even though my daughter CAN walk, she is not physically capable of the walking required to navigate the parks. Maybe its the 6 knee surgeries. Maybe its the after effects of the thyroidectomy. Maybe its the low immune subclasses, or the severe GI issues. She tires easily. And today, because it’s day three, she is already worn out. And even with the help of a wheelchair, she needed us to cancel our dinner reservation and get her back to the hotel to rest.
So, yes. At the advice of her doctors, and the agreement of her parents, because she NEEDS a break from her life, and EVERY protection to help her feel well, she uses a wheelchair through most of the day. And every day before we leave the hotel room we say a prayer for all those who HAVE to be in a wheelchair all the time. We take a moment to pray for their strength and health.
You aren’t the only ones. There are plenty of others who look at my beautiful girl, and think that this is some type of ploy. Which would make us pretty sick people. Because if you really want to feel queasy, push your child around in a wheelchair. Go ahead. Try it for a week. We’d rather she walk. She’d rather walk. So sometimes we let her try. With advil, and about 3/4 mile round trip. There is ice for the knee, and a shoulder to rub. The body behaves like one 40 years older. But, she pushes. To keep her independence. To feel normal.
The next time you wait the extra 4 minutes for the bus to load, don’t judge. Don’t figure you know the who, or what or why, about the person in that wheelchair. Don’t pity them. Don’t feel badly for them. Just be respectful, and assume they fight a battle you know nothing about.
If you want to know more about them, ask. And if you don’t – just walk right on by. And cherish your mobility.
To the Midle School Girls who doubt my daughter’s medical conditons:
I want to start by telling you, I know it’s not your fault. You are generally healthy. You were raised by people who are generally healthy. You get sick. It gets better. You want your share of attention. You resent that sometimes my daughter needs a little extra help in the halls. It’s not fair that sometimes she needs to sit out of Physical Education. You are tired too, right? It doesn’t seem fair that she needs to leave early from the class right before lunch. You’d like to stretch your legs too. Why does she “get” to being her own food everywhere? And is she really “allergic” to all those foods? Because she doesn’t seem “allergic,” and why does her food wrapper say “milk” when she’s “allergic to milk? She must be lying, right? Looking for attention again? Why does she get to leave early so often? You’d like to get out of last period too. I get it. I understand. You look at people who look sick, and you are probably really compassionate. Except now that you’re older, it’s time for me to let you in on a well kept secret.
Not everyone who IS sick, LOOKS sick.
Take a moment and process that.
Now I’d like to tell you a little about my daughter. The real Meghan. Not the one you always see, but the one I see. The one who I have kissed before 13 surgeries, as she left me for the operating room. The one I have slept beside for nights on end as she gets poked and prodded in hospital after hospital. The one who has shed tears of pure frustration and anger over the things that have been restricted from her life. The one who longs for you to understand, but will not talk about it in depth, for fear that she will isolate you, or worse, that you really won’t care at all.
Let me tell you about the Meghan who knows your problems. The one who genuinely hopes you, and your head cold, stomach virus, sick grandmother, and hurt ankle are all ok. The one who understands deeply your anxiety about getting a blood test. The one who “gets it” on levels you’ll never understand.
Let’s talk about the paraprofessional. While she has been blessed with the classiest, most professional women through the years, do you think for a moment she WANTS to need help? Do you think she WANTS an adult escorting her through the halls? Think about that for a minute. She doesn’t WANT to be different. Six knee surgeries, and a Rare Disease diagnosis have taken that option from her.
And about the trips to the nurse. Any idea how annoying it must be to have to detour to a nurse to hand you medication before you can eat anything at all? Any idea what it is like to never be spontaneous about just grabbing a bite of something? Because your body simply doesn’t make the enzymes it needs to digest food without help.
Please don’t even get me started on the cafeteria. In our house her Dad is a masterful cook, who makes eating gluten, dairy and soy free taste fabulous. But, out of the house? Not so easy. You want to know about her allergies? About how she can be “allergic” to milk and eat a product that contains milk? I get your confusion. But, here’s a tip; when you are confused, ASK, don’t assume. She’ll probably willingly share the reasons with you if you are actually interested.
She spent a large part of her very young years vomiting a lot. Sometimes so much that she ended up in the hospital. Her stomach hurt all the time, and she even had to have her gall bladder taken out when she was 3. She had ear infections all the time and her head was full of fluid. She didn’t talk much, (I know – hard to believe) because her head was clogged up. She cried because she hurt so badly. She was allergy tested for lots of things. Nothing came up. Nothing at all. Then I used my brain. And my instincts. And we targeted some foods.
And do you know what we learned? We learned that without milk, she doesn’t get ear infections. And she learned how to talk right away. And her head stopped being so full all the time. And she could rest.
Then I kept looking. And I learned that soy, in its purest form, caused a rash all over her body.
And when I took out gluten, slowly her joints began to ache less and less, and I was able to decrease the medication she needed just to walk up the steps onto the school bus.
Are they “allergies” in a technical sense? No, I guess not. But, they are just as important. I am forever grateful that she doesn’t carry the danger of anaphylactic shock, but she does have the ability to end up in the hospital from dehydration after vomiting for days when she eats certain foods. Even strawberries. Or anything with seeds. Or anything too greasy. Or cross contaminated. (Like last year in DISNEYWORLD when we needed a doctor after a FULL day in the hotel vomiting.)
So the meal bars she eats at lunch, yes they say, “conatins milk.” But, you know what? They agree with her. She doesn’t love them, but she eats them for NUTRITION, so she can function through the day. The “milk” in there is primarily undenatured WHEY protein from NEW ZEALAND where the cows are GRASS FED and roam free.
Why would she be anything less than honest about not being allowed to have regular milk products? Do you know she has never had ice cream from the ice cream man? I have to send her own pizza and chips and cake to parties. Do you think she doesn’t want the donuts and cookies, and hot pretzels in the cafeteria or at fairs? Does that really make any sense? Ask yourself of all the things to be less than truthful about, does that even enter into logic?
And about physical education. Let’s talk about my daughter trapped in a body that likes to betray the athlete inside of her. Let’s talk about the young lady who can run like the wind, but might trigger a bleed of the vascular malformation in her knee, and at the very least will pay in excrutiating pain. The girl who wants to play longer and harder than any of you, but can’t. The child who craves the idea of just coming in in a gym uniform and competing, for better or for worse, all the time. But, she can’t. Because the surgeon said not yet. And even when she’s able to join in, it will likely be on a restricted basis. Let’s talk about the girl who won’t run Main Street in Disney because she will have to navigate the parks confined to a wheelchair. Walking more than about 1/2 mile consecutively is too stressful on the knee.
Oh, and the tired. Yep, you are tired too. I get it. You were up late last night. Probably watching a movie, or doing something fun. So you are tired. But, she went to bed at a decent hour. Hers is a different tired. Hers is the tired that comes from a body that refuses to accept the synthetic thyroid hormones as normal. Hers is from a body that makes a hobby out of defying her. You’re both tired. But, it’s not the same. Trust me.
This is the girl who stays on stage during drama even if it kills her. Even if the pain is at its greatest intesity, because no one has restricted her there, yet.
This is a girl who gets to swim practice as consistently as she can, so that she can feel, “normal,” while she pushes through the water. This girl has to go to PT 2x a week just to get into the pool. This is the girl who overcame emergency surgery in November of last year for a bleed in her knee to qualify for Silver Championships 2 months later on raw nerve. This is the girl who took less than 2 weeks off from swimming after her knee surgery in May. Because she WANTS to play.
And all those times I pick her up early. It’s not for a manicure/pedicure. Turst me. See, Meghan has a rare disease called Cowden’s Syndrome. She’d be happy to tell you more about it. She got it from me. It causes non-cancerous, and cancerous growths to grow all over the body. She’s been lucky so far, and even though it was a close call when they removed her whole thyroid last February, she is to date a “previvor,” (one who has surgery to remove genetic cancer risks.) But, there is a doctor, and often a surgeon, for just about every body part. There are MRIs and scans, and hours travleing to Manhattan. No, not to museums, but to NYU, Sloan Kettering, Lenox Hill, and St. Luke’s Roosevelt. We do the hospital tour. The average round trip is 4 hours, usually after a long day of school.
This is a girl who has watched her mother undergo surgeries she shouldn’t have to think about yet. This girl has had her mother diagnosed with cancer when she was in 3rd grade. This girl has the same genetic condition as her mother, and the same cancer risks. Some days she has a lot on her mind.
Meghan is not perfect. I know this, and so does she. And if you have a problem, talk it out. Sometimes you’ll be right, and sometimes she will be.
Just don’t assume things. There’s a saying about that… and it’s all true.
You see invisible illnesses, like Cowden’s Syndrome are very, very real.
Meghan is only one of MANY people you will meet in your life who “don’t LOOK sick.” They would ALL benefit from your compassion.
Constant doctors appointments, scans, and blood tests, are not where we want to spend such a giant chunk of our lives.
Food allergies is a term we use to protect her from ignorant or uneducated people who think sensitivities and intolerances are not serious. Forgive me the word adjustment. It’s necessary to ensure her safety.
You see the hardest part about all this for me, is not being able to give you this speech in person. For the last 12 years I have been her voice, her mouth, her protector. Now, on top of everything else she has to handle, she has to find her own way of speaking about all of this. She has to find her own comfort zone.
And I have to watch.
My confidence in with my daughter. She will pick the right friends. She will speak up at the right times. She will learn all about herself. She will become her own best advocate, to you and to the world.
And once she has figured all that out, you’ll realize she’s a pretty fun kid to have around.
The awareness that one day we’re not going to walk this earth anymore.
Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.
We face this reality at different points in our lives. Some are frighteningly young, and others are blissfully old. But, eventually, that awareness either creeps in or hits us like a speeding train. (Figuratively, or course.)
In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.
For me, my solace, my comfort, and my focus, come from my faith. My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.
Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.
As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young. (young for her, and for me too!) She got it. She found clarity, but it was a few tough months. And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.
I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer. But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality. I was 10 years younger than Mom was at the time of her diagnosis. I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior. When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.
And there was reality. Unable to ignore. Cancer had lived within me. Could it live again? Would it? When? Why was I going to be OK when so many others were not? Was I going to really be OK? What if they missed it, something bigger?
I was fortunate. Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer. I needed no treatment, no medication. But, my status had changed. In the eyes of the doctors, I was now an even greater risk. Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed. The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk. A significant risk.
Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages. An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age. The things we celebrate…
My Cowden’s Syndrome people are known to me mostly through the internet. We live across the country and across the globe. We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer. While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits. There is that “Sword of Damocles” hanging above our heads. There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry. We stare at our own mortality each time we look in the mirror.
We have an extra bond when it connects to our children. A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality. We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore. We have gently answered questions about family, and future, that have no real answers to date. We ache for them. We wish to take it all away. We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.
Mortality will bind you, and if you’re not careful it can blind you. That is why there are support groups, for cancer patients, and others who have come close to losing their lives.
This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.
I will protect their privacy here, and tell their story as generically as I can.
I connected with Alan, about 6 weeks after my father died. Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps. The award was never granted, and I wanted to pursue it on his behalf. So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006. I wanted to know who remembered him, and his story.
Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.
My Dad, the “Irish Marine”
I sent 20 letters out. EVERY SINGLE MARINE responded to me. EVERY ONE. Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences. Many shared some funny anecdotes. And as hard as I’m sure it was, they all connected with me.
I had heard about the Brotherhood of the Marine Corps. I could not have fathomed the depth of that bond. One after another, they all left me with the same heartfelt sentiment. “You are the daughter of our brother. We will help you always in whatever you need.”
Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned. My Dad battled his own demons for many years before our relationship began to form. But the offers of these Marines were sincere, and genuine.
Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries. In the end, we lost the battle on a technicality. Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.” The letter was cold. The case was closed.
We lost the Purple Heart but gained so much more.
I was sad, mad, angry and disappointed. But I was so grateful for the Marines who wrote letters of support. I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result. I wanted this for him, because he never fought for it himself.
And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me. He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.
So, this weekend I headed to West Virginia to thank him myself. I met a group of Vietnam Era Marines, several of whom had served with my father. I watched them together, in awe an amazement. I was welcomed into their group with instant acceptance. And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told. Surely a contrast to the realities they had faced as young men years ago. But, the bond between them was unbreakable. There indeed was the Brotherhood of the Marines, but there was something else.
Mortality.
They faced it in the most horrendous of ways. They lived it daily. They buried their brothers. They knew their return home was not a guarantee.
And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life. As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”
I was among a group of people who had faced their own mortality almost a half century ago. And they have a bond that can not be explained. It is amazing.
And among the most amazing to me was the woman I met. She was not local either, but she, like I, had traveled for this celebration. It was not her first time. She had been around for almost 10 years. About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with. She had never met her father, but here were father figures galore ready to embrace her. And they did.
A bit ago her father’s diary surfaced from his time in Vietnam. She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily. His diary ends with, “When will it be me?”
Once you have looked your own mortality square in the eye, you can not walk away the same person.
But, it is up to you what you do with the rest of your life.
As for me, I choose bonding with people who “get it,” be they old friends or new.
I choose focusing on what we can do, not what we can’t.
I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.
Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.
As for us, in this house, we choose to remain focused on
“Standing in the middle of nowhere, Wondering how to begin. Lost between tomorrow and yesterday, Between now and then.And now we’re back where we started, Here we go round again. Day after day I get up and I say I better do it again…”
The chorus to the old song rings through my head, as we prepare to return to work and school. Eight days post-op and everything checked out just fine at the surgeon. It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy. The surgery went well. The recovery is moving along. But, as with each time we’ve done this, there are no promises. There are some cautious words. There are some hopeful words. This is what I have to focus on. And I will.
But, sometimes it can be hard.
Like when you do research and turn up this page from an orthopedic clinic. (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”
Knee
Primary Inflammatory (Synovial) Disease of the Knee
Diagnosis
Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.
Injury or Condition
This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.
Cause
The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.
Symptoms
Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.
Treatment
Standard treatment includes:
Anti-inflammatory medication for six months.
Safe exercises to improve strength without aggravating swelling.
Ice, warm packs and knee balms can be used to decrease pain.
Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.
Precautions
Important precautions:
Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
Avoid stress.
Recovery
As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.
“Two – thirds of cases generally recover completely.” The math teacher in me is unhappy with those numbers. The mother, the mother of this child, knows that she defies statistics whether they are for or against her. She is her own special case.
Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork. Maybe it was a good distraction. After surgery 13, the novelty of the whole thing has worn off. Days are long. Recovery is mundane. People are busy. Texting helps a bit, but the hours drag.
We got to PT this week, twice. And already I see progress. That’s why quality therapy is worth every minute.
So during my days home I did laundry, and caught up on some household things while I stayed close to my girl. I also attacked “the pile.”
There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes. I try to get to it every few days. But mostly I don’t. Then it overwhelms the table. And somewhere under the pile is “the list.” The upcoming appointments line the top. Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.” Today was a good day to tackle it. I made some significant progress.
I also spent hours on the phone. I dredged up the anesthesia bill from my surgery in February. That took an hour. But, it’s done for now.
I started scheduling appointments. We tend to cluster a lot the first two weeks of the summer. Some have been planned for months. Some I’ve been blocking. I got a few more in. Then I got stuck.
In the hospital the pediatrician last week was really on my case. She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance. She didn’t like that I said, “ME!” (Maybe it was the way I said it… (grin)) But, truth be told, I really don’t like it either.
I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.
Meghan’s blood pressure in the hospital was low. Like at times crazy, scary low. I know she was just cleared by a cardiologist, but…
And the lesion on her hand dubbed “vascular” by the dermatologist…. What to do with that? The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her. The same doctor who said she’d help us. That one. Yep, she’s useless at this point too.
I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well. Apparently the fact that she’s “adult size,” doesn’t matter. I was left so frustrated I choked on a few tears.
This Syndrome is big. I can manage it. I can and I will, because there is no other choice. But, I need some help. I need a point person. Someone to force the doctors to listen. Someone to gather it all into one place and make sure it makes sense. Someone to make sure we don’t miss anything.
In desperation I emailed the genetecist who diagnosed us. He responded within an hour.
Dear Mrs. Ortega,
I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.
I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan.
Sincerely,
(The angel I need… I hope)
I will call tomorrow to make an appointment. I have a good feeling about this one. Please, whatever your faith, send some prayers. This would be huge. Really huge, in a life-changing good way. We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.
I just want to keep her safe. I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.
“…Where are all the people going? Round and round till we reach the end. One day leading to another, Get up, go out, do it again.
Then it’s back where you started, Here we go round again. Back where you started, Come on do it again…”
Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain. I’ve said this before, and I will say again, it is a blessing and a curse. It is a good thing to celebrate accomplishments, and the anniversaries of such things. It is dangerous territory to recall to be caught up in the negative aspects of any day. By doing so you give it power. And, if you are not careful you give it power over you.
It is a dangerous road to walk. I have done many miles on it. And my brain does not differentiate the “good” dates and the “bad” ones. I remember them all. The problem is, some fill my heart with gratitude and joy, while others seem to provoke anxiety unceasing – warranted or not.
I have never been a fan of “Hallmark” holidays. Valentine’s Day, even after I found the love of my life, has never held any appeal. Mother’s Day and Father’s Day don’t do much for me either. Before you jump on me for not loving my parents, I want to share part of an interesting article I read on the history of Mother’s Day.
From: Mother’s Day Turns 100: Its Surprisingly Dark History
“For Jarvis it was a day where you’d go home to spend time with your mother and thank her for all that she did,” West Virginia Wesleyan’s Antolini, who wrote “Memorializing Motherhood: Anna Jarvis and the Defense of Her Mother’s Day” as her Ph.D. dissertation, said in a previous interview.
“It wasn’t to celebrate all mothers. It was to celebrate the best mother you’ve ever known—your mother—as a son or a daughter.” That’s why Jarvis stressed the singular “Mother’s Day,” rather than the plural “Mothers’ Day,” Antolini explained.
But Jarvis’s success soon turned to failure, at least in her own eyes.
Even Anna Jarvis did not intend the holiday as it has become.
I have epic amounts to be grateful for. And I am. Every day. I think that’s why the pressure of having it all jammed into one day confuses me and stresses me out a bit.
In church we were taught, “Honor thy father and thy mother…” I believe the meaning was every day.
So yesterday I needed to do some soul-searching. And I think I figured a lot out.
I have a tough as nails mother. She is the strongest woman I know. Not a day of my life goes by that I am not grateful to her, and for her. And I try not to let too many days go by without telling her so. Life has taught some tough lessons, and sent some reminders about how fleeting it can be.
One of the many lessons I learned from Mom
I have two grandmothers on this earth. One I had the privilege to grow up with, and even though the recent years have been cruel to her memory, my memories of her, and of her love, penetrate my soul.
I have another grandmother, a gift to me 27 years ago, who inherited me as a teenager and allowed herself to love me. I am so grateful for that love.
And my grandmother Gen who left for heaven in October, whose smile I can see, and whose laughter I can hear… her memory warms my heart.
I am so very thankful I did not wait to acknowledge them only once a year.
My girl is recovering from surgery. On my couch. In pain. Feisty. Looking to move. Bored. There would be no grand family celebrations yesterday. My husband was fixing our deck that is literally falling apart. A labor of love – and safety. I stopped in for a quick visit to Mom and one Grandma.
I reflected about Mother’s Day a year ago. Spent in the pediatric unit at RUMC. Scared out of my mind. Not knowing what we were up against.
Then I thought about Mother’s Day 2008. A few days after the tonsils and adenoids came out.
Or Mother’s Day 2012, as I awaited my hysterectomy, a few weeks after my double mastectomy.
Then I thought about my friends. The ones who have lost their moms way too early.
And the others, whose hearts yearn to be a mother, or those who ache to have larger families than they do.
My heart aches for those who have lived through the unthinkable, and have lost their own children.
Why so much pressure put on one day?
Wouldn’t it just be easier if we celebrated our Moms every day? Instead of waiting for one day?
I know I may have an unpopular idea here, but so many unconventional things work for us.
I would never claim our lives to be “harder” or “easier” than anyone else’s. I’m not that kind of fool. But I will dare to say that maybe raising a chronically ill child makes it “different.” Maybe facing life with two rare genetic diseases in the family makes me think of things in a slightly unorthodox way.
I stick a note in my 6th grader’s lunch just about every day. And I will until she tells me to stop. I will remind her in as many ways as I can, of my love for her every day.
Life is scary. Our lives are scary. Wednesday some machines, and a very smart doctor breathed for her, for over 2 hours. This is not a rare occurrence. This is something that goes on regularly, for one of us. But, they told me she was, “stable and strong,” and in those words were the best gift I could ask for.
Mother’s Day is every day. From mother to child, and child to mother, and aunt to niece and grandparent to grandchild. Not in the, “buy me lavish gifts or send me to the spa” sense. But, in the, “I’m really lucky to have you. Right now. Today. and thanks. For that thing you do. For that smile. For that hug. For calling me. For calling me out. For driving me to the store. To school. To practice. For driving me insane. For making a mess. For sometimes cleaning it up. For sitting by my hospital bed. For getting me ginger ale. For helping me walk. For making me laugh. For never giving up on me. For understanding I won’t be here forever. For being my cheerleader. For supporting me. For listening to me. For shutting up. For saying just the right thing. For explaining the math. For butterfly kisses.”
Mother’s Day in our house may be low on pomp and circumstance, but it’s high on all things that matter. Right now we’re nursing a recovery. And it’s coming along, thank you very much. We are incredibly proficient at this.
And as Mother’s Day 2015 drew to a close, and as we ate our gluten-free pancakes for dinner together, I was struck with the thought that I would not have it any other way.
People count all sorts of things. Among the things we count are surgeries.
Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in. And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information. We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports. (Saved her another stick today when I could produce a recent normal liver enzyme panel!)
So today, surgery number 13, was not a surprise. It was anticipated and planned very deliberately for months on end.
The day started before 5, scheduled for a 6 AM arrival. But, in reality it started last night. Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.
We got up and out quickly. No fanfare. No time for a “selfie” of the three of us in our “Never Give Up” T-shirts. We checked in just past 6 and shortly after were performing all the typical surgery routines.
It is funny. There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries. The first group understands surgery “routines.” The second group raises some eyebrows. They are horrified at our use of the camera in the hospital. But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.
We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.) Several consent slips were tossed at me. The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask. Felix was given the necessary garb to walk into the OR. I stole a few extra minutes to clarify the plan with the orthopedist.
And I must confess there was some major anxiety. See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery. That’s why we coordinated surgery times. Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary. This was a far cry from the report after the MRI in January when we were told another embolization was necessary. But, it was now in the moment. They had a plan and I had to play along. The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary. He also promised me he would do his best. What more was there to ask, I guess.
In the waiting room I thought. Too much. But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.
After about three hours we were greeted by the orthopedist. His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.” He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.
She woke up slowly, but well, and soon she was alert. While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers. She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice. Lots of ice. For Meghan. And for me- as I managed to bang my head on the table. Insert exhaustion here.
The pediatrician on call was relentless reviewing the three sheet medical history. Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.
Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician. I have to tell you she succeeded on really aggravating my last nerve. She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions. By now the fatigue was starting to set in. I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me. I explained carefully that I was jaded by years of dealing with sub par medical professionals. She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications. Whatever… Truly. Spend some time learning about Cowden’s or ANY Rare Disease. Then we’ll talk.
Arrogant self- importance. Ugh.
We were called down to radiology at 2:30 so the feet could be X-rayed. The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy. Results tomorrow. In the mean time his caring makes him my current favorite.
Pain medications in place. Crutches safely in the corner. Lights are off. Movie is on. And the day is just about over.
Tomorrow we SHOULD be home.
For now, number 13 is in the books.
And my happiest news of the day came when the anesthesiologist said
The early hour usually means I would be at work. Instead, I am sitting on the 10th floor, in the waiting room. Again.
Right now my beautiful girl in undergoing surgery number 13, the 6th on her knee. The goal is to stop the blood that has been leaking into her knee and causing degeneration and chronic pain. This time there is a new doctor at the helm, an orthopedist from Long Island. Our vascular guy, the leader of surgeries one through 5 on that same right knee has taken a back seat. He is on standby. We are sitting.
Waiting.
Alone with our thoughts. Not always my favorite place.
These last few weeks have been a whirlwind. When we met the orthopedic surgeon in February, and Meg said May was a good time for surgery, she had certainly calculated her plan.
Over the last few weeks, we have been busy packing in as much good stuff as we could fit.
The school play, her first production, was April 30, and May 1. It was such a thrill to watch the spirited enthusiasm from my daughter and all the other children. She is hooked. And while drama practice was going on 5 days a week, she was still making three swim practices a week, working hard to finish out strong. As a result she received the “Coaches Award” at the team dinner last week, and she was moved “up” a level. She was able to practice with her new group starting Monday, so she got in 2 practices before this procedure will derail her for a bit.
She also almost finished the CYO Swim season. Making 7 out of 8 meets (the last one is May 9th) she swam hard and strong one day each weekend as well.
In the midst of all this, she managed to balance her time well and was inducted into Arista, the National Honor Society.
All the while we looked for spring clothes, and shoes (in 2 different sizes) for my beautiful 5 foot 5 young woman.
I know there are people who are busier. I know multiple kids jostles the world. But, I also know I am proud.
She ran on raw nerve. She pushed and pushed in ways that would have taxed a healthy child. And she made it. Sunday’s morning swim meet was a no – go, but I am just so impressed she accomplished all she did.
And just for fun she broke her first pair of glasses yesterday. Not bad for a kid whose had them since K. New pair already on…
And I’m impressed I got her there.
We like to convince ourselves that we are just like everyone else. But the reality is that this genetic disorder messes with our bodies and our minds.
As I said to the nurse this morning when she wondered why Meg was a little edgy, “It’s not you. You are just an ACCUMULATION of her life. Step by step. Poke by poke. Surgery by surgery.”
I think she got it. Maybe. As the woman in the bed next door in preop – clearly in her 60s, said she had never had surgery before.
So very hard to believe.
I’ll update later. I’m waiting. Cheering my kid on as she continues to be BEATINGCOWDENS.
I went to college, and graduate school, and took 30 credits above my Master’s Degree in Education. I earned a job as an elementary school teacher, in the school I attended as a child. And, after 18 years on the job I still love those moments when I am alone with my students, and things just “click.” But, nothing happens by accident. And despite the belief that a teacher’s day ends at 3PM, many a long night has been spent with those very students in mind, planning lessons, and creatively trying to reach them where they need to be met. I am not always successful in my execution, but I am confident in my planning and preparedness.
Because, you see that is what I was always told a professional is, and does. You LIVE your “job.” You are still the teacher, in the mall, in the restaurant, or even in CVS.
As a professional educator, I take pride in TRYING to meet the needs of my students at their level. It is my responsibility to help every child, not just the easy ones.
But, lately I am wondering if every professional has that same feeling.
Now, I mean no offense to the various healthcare professionals who go above and beyond for us, and for their other patients.
It’s just, well, the rest of them.
Having Cowden’s Syndrome sometimes feels like, well like I would imagine it might feel to have a plague, or leprosy. People, doctors, whomever, look at you tentatively. They look with caution. They don’t want to get too close. They are afraid to treat what they don’t understand.
And worse – no one wants to be in charge.
We are the worst kind of liability – more dangerous than a safe full of cash or a rare artifact.
Everyone wants to see us, all the time. But, they just seem to want to check boxes that say they’ve met their “I’ve seen a Rare Disease” quota, and send us on our way.
I am the CEO of my daughter’s medical care, and while frighteningly competent to do the job, NO ONE is listening to me.
To My Daughter’s Entire Medical Team:
You are dropping the ball here. Someone step up and take charge. Talk to each other. Get your egos out-of-the-way. LISTEN to me. LISTEN to her. Put her picture on her chart to remind you she is a REAL person.
She is charming and beautiful.
Believe her when she says it hurts. Even when it is not “supposed” to. Validate her.
And sometimes. as unpleasant as it is to see, there is a lot of very real pain.
She talks a lot when she’s nervous. Care about what she has to say. Care that she is nervous. Learn about her love of swimming and reading and performing. Adapt your plan, your day, your treatment to fit MY child, just as I would do to yours in my classroom. Treat her as a whole person.
We are tired of spending hours in the car, missing practices and play, and relaxing time, just for you to feed us a line of “maybe,” “watch that,” and “come back.” We are tired of going places where no one wants to give us answers, or even answer our calls.
We are tired of surgery. But we do it. Over and over.
It’s a real person enduring those procedures.
Call back when I have questions. Like within 24 hours. Because I carry my phone until it leaves an imprint in my hand when I wait for you. Nothing else gets my concentration while I wait for the ring. I carry my list for fear of missing that precious window with you.
Oh, and by the way, the foot with the AVM had stopped growing. Take a look. Someone. Please. It’s a bit disconcerting.
She’s hot. Often. And at odd times. And I’m not just talking a little uncomfortable. Anyone want to help address that one?
And yesterday the dermatologist said it’s a vascular malformation in her hand. Another one. Please don’t tell me it’s not all connected. I’d rather you tell me you don’t know.
Don’t ignore her symptoms because you don’t understand them or can’t explain them. Trust me when I tell you, she’s not making it up. Any of it. She spends her time trying to make the world better for other people. Isn’t it about time you all got it together and started making HER world better?
And when the knee is at its worst, there is still a way to press on.
The pain in the knee is constant. Yep, I know it “shouldn’t” hurt either. But, she doesn’t even ask for medication anymore for fear of the same issues her last pain medicine caused in her GI tract. She just endures. All day. And then she goes to drama, and then she swims, and manages an average of 97% and the National Honor Society. She limps a bit by the end of the day. It’s the mornings that are the toughest.
To you she is one of many. To me she is my one and only. And this child, young lady, has the capability to effect great, positive change in this world. I know you are tired. I know your schedule is busy. I know research takes time. Start by listening to us. Listen. Care. Let her know she matters.
Then maybe, just maybe, she’ll start to trust you. Then, slowly, together, you can try to make her life more comfortable. Because, with or without you, she and I are BEATINGCOWDENS together.
beatingcowdens 