Meghan received a special invitation a few weeks back. She kept quiet about it – even though she was bursting at the seems.
On February 27th, as we were preparing for Rare Disease Day, Meghan met and shared her story with Borough President James Oddo. They hit it off instantly, and spoke like old friends for quite some time before he broke away to introduce the “Readers are Leaders” Campaign to our school.
Well after their extended conversation, the Borough President gave Meghan his Email address and reminded her she had a “friend in Borough Hall.”
They exchanged Emails at least once, and Meghan was THRILLED to receive an invitation to sit with the Borough President AT Borough Hall – 4PM, March 28th.
And the make the whole thing even more exciting, her efforts on advocacy and awareness and fundraising earned her the nomination for NY1 “Staten Islander of the Week.” (More on that segment which will air next Friday to follow.)
We arrived early, a rarity for us, but this was a REALLY big deal. Meghan had carefully selected a few gifts for the Borough President which were tucked in my bag. She proudly donned her “previvor” tee, and we sat anxiously in the comfortable waiting room.
This kid is clearly a “FORCE” to be reckoned with!
We were given a tour of the basement and first floors, and showered with some gifts by “AJ.” A giant help, and a generally nice guy.
Meghan and “AJ” our helpful tour guide!
Then, it was time.
Meghan and I were greeted with hugs by our warm and extremely genuine Borough President. He repeatedly introduced Meghan as his friend. He told stories of how she inspires him. His staff and constituents walked in and out, joined the conversation, and came and went, as if a 10 year old in the office was a normal occurrence. They talked about health and advocacy, about her denim ribbon necklace, and her Cowden’s Syndrome Awareness card. They talked about her surgeries and her medical struggles, but also about reading, and literature, and the healing power of dogs. They have quite a lot in common and my heart sang to watch my 10 year old in the arm chair hold her own with a well-respected politician as if they had been friends for years.
The NY1 interview was comfortable. She speaks clearly, and flashes an award winning smile.
Meghan gave Borough President a rock with the word “courage” in it, after he shared a touching story with her.
He reminded her if she needs anything, she is to contact him directly. And as the year goes on as she thinks of new ways to spread the word about Rare Diseases, he will help in any way he can.
Her eyes brightened. Her goals got larger.
“You can be angry, or you can DO something, So I decided to DO something,” she told the reporter.
And she did.
And she will.
Watch out world.
Thank you Borough President Oddo. Staten Island is in good hands. You are one of the good guys.
In the spirit of one day at a time… today she feels well.
Today homework is already done.
Today her stress level is low.
Today she swims in the water like the fish she longs to be.
Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.
Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.
Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.
No one can figure out why the drug works for her, but it does. And I am grateful, but scared all at the same time. The list of medicine grows. The knowledge of Cowden’s Syndrome remains spotty at best.
We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….
One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up. Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.
Sometimes I feel like with all the doctors we see, there is still no one minding the store. We travel between specialists, between symptoms, between surgery and recovery.
The blood for the thyroid won’t be drawn for a month. She slept 14 hours Friday night and another 12 Saturday night. No major plans for us for a while.
The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.
Sometimes I like to play mind games, and forget about Cowden’s all together. I daydream a bit…
And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be. Like that ‘ever changing puzzle” my Dad used to tell me about.
And I think of my friends and family. They are contending with diagnoses new and old. None of them fun. I would never say to them that experience shapes who we are. That is a personal belief that the wrong person just might deck me for.
Especially on my heart is my internet friend from Australia. Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.
Today. Today my girl feels good.
Today I will do as I have been taught and let tomorrow worry about itself.
So it’s almost 2 AM on Sunday. And I have to say, I didn’t see this one coming.
This is the part where I remind people over and over that just because you CAN live without a body part, doesn’t mean your body doesn’t miss it when its gone. I mean we were made in one piece…
So the recovery was going pretty well, but that’s mostly due to her feisty determination.
But there is a point where you look back over the last 9 days and consider a few major things. That point came at about 4, and 5 , and 6 this afternoon as she was violently and quickly vomiting herself into dehydration.
If you consider that there was the stress and worry of HOW we were going to get to the surgery, then the brief pleasant stay at Ronald McDonald House, followed by a 4 hour surgical delay, coupled with a less than smooth hospital stay that had its share of communication issues… you start to get a sense of the stress that has been this February “vacation.”
Sorry we didn’t send a post card, but it was a blast …
Really it extends way farther back than that… but rather than bore you again with all the back story I’ll stay current.
So on the 13th the thyroid came out. It was a three hour procedure with lots of general anesthesia junk for my pretty organic girl. Then there was the whole removing an actual PART of her body. And then there was the introduction of the synthetic replacement hormone. And there was lots of fidgeting with calcium levels. And there were narcotic pain meds for a few days too to keep the edge off.
And at some point around 4 today her body had had enough.
I love when Meghan vomits and people say, “Is she sick?” And I say “nope.” Rarely, (knock on wood – NOW please) does Meghan get a “stomach virus,” but she’s not a stranger to vomiting. She vomits when her body has had enough.
And today, her stomach hurt. Her knees hurt. Her hips hurt. Today I couldn’t keep the pedialyte in cause it all happened so fast. And, since there’s a first time for everything – we actually had to go to the ER for fluids. Except she’s Meghan. And she’s only a bit over a week post op. And they just wanted to be careful… so she’s asleep in the bed. I am typing away as I won’t even attempt to sleep until after the 3 AM meds.
And after the ER was over and we came up to the floor for a bed – in a place we have spent some time before- we passed by the NICU where she started her life in 2003. While I was reflecting I looked at our nurse and thought she looked a little familiar. Once she told me her name I was incredibly grateful I had been kind to her son when he was in my 5th grade class some (AHEM 13 – or more) years ago. You never know when you’ll need Karma on your side…
And now this poor, lovely nurse was left to contend with my daughter, reading package inserts and discussing medications before they were given. Meghan talks a lot. But I didn’t feel guilty about that part (GRIN.)
So the fluids kicked in and she began to perk up. She had time to share with the doctors and the nurse her denim ribbons, her Cowden’s card, AND her movie for RARE Disease Day. They want us to bring them some ribbons for the floor.
Me, I got my nutrients in my – thank goodness I always stuff a meal bar and an EShot into my bag… ALWAYS. That knocked that pounding headache right out.
She bounces back. Quickly. But sometimes a little too well. I have to watch her. Determination can’t do it all. The body has to help too. And as strong and tough as she is, we all need to be reminded that, well she has this RARE Genetic Disorder called PTEN Hamartoma Tumor Syndrome… or Cowden’s Syndrome… and well, even though we may not always want to admit it – that darned syndrome can make life a little extra tricky.
At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.
That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.
Because sometimes you need to sleep, and think carefully before you type.
The surgery went smoothly. The surgeon did a fine job, and so did his team. It was not their fault we were delayed by hours. Someone else’s baby needed their attention. And I can respect that. He followed up personally, listened to Meghan, was cautious but not paranoid. His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.
Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together. Things on her skin – even band-aids annoy her. This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.
But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.” By the early afternoon she looked better. The surgeon said to watch her till 5. A fair number considering she didn’t hit recovery until 7 PM the night before. If she was still good at 5 PM he would clear her to go.
And then there was endocrinology. Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.
When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function. That being said, even when they aren’t damaged, they are often traumatized for a bit. Low blood calcium is OK for a few hours, but not a few days. Like everything else, the body needs all things working together for smooth operation. Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover. They had to just see if it tanked out. The decisions for her post op supplementation would be made based on these blood results.
So, she had blood drawn at midnight after surgery. Then there was the draw at 1 AM for blood sugar. Then there was a draw at noon. Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw. I insisted that was not the case. Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.
Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw. I waited until 8PM and started hunting down results. I was told that the ionized calcium had dropped from 4.8 to 4.3. I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3, Apparently the 6PM draw held at 4.3 There were two other tests, and I wanted the numbers.
Run around. Run around. Run around. Finally after much work and some heated conversations we got the numbers from the other 6:45 tests. The calcium held their own, indicating a drop off to be unlikely.
Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw. Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week. NOTHING overnight.
Now it was after 10.
The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium. At least I was able to respect that she apologized right to my daughter for muddying up the entire process and raising her anxiety.
The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.
The passing of the buck that took place around the endocrinology department – disgusting.
And this is the clean version.
Facilities. Doctors. People. Can rest on reputations previously earned. And then one feeds into another and that reputation carries them – sometimes too far.
We have been there, and done that. And we are far from done. So loyalty lies in individual treatment and care by individual doctors and nurses. There is no one perfect facility. There is no one perfect place. Not even in Manhattan.
We gathered our things quickly.
We were in the car at 10:45PM.
My wise daughter asked what the lesson learned.
I said,”Trust your Mom.”
My husband said, “Educate yourself. Advocate for yourself.”
I guess we are both right.
The ride home was tough. Painful. You use your neck for an awful lot of things.
But we got home in time to give her a well deserved Valentine’s Day Gift
She certainly is our Hero. And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night. Especially the one to “Trust your Mother.” For now I can be the advocate. She has to find some time to be the kid.
Valentine’s Day 2004 – our first hospital stay.Valentine’s Day 10 years later…
She walked away today. She broke the rules. She updated the plan. On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses. The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.
That didn’t last long… You only get a moment or two to pull it together. Then there was some really rotten cafeteria food, and WAITING.
They took her in at 3. Three and a half hours after she was scheduled. She was tired, and hungry. And more grown up than I am at 3 PM when I haven’t eaten.
What a whirlwind! Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed. Stupid Cowden’s Syndrome. Makes people quick to pull out whatever seems to be misbehaving. And (SIGH) they are usually right.
So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while. I thought there was no way it could stand in the way. The surgery was scheduled. She was ready. The throat clearing has reached epic levels.
Faith.
Faith that it was going to be fine. Initially faith that the storm would pass. Faith that we would arrive on time to an early surgery Thursday morning.
Then, as happens so often I was reminded that FAITH, is not about me. It’s not about my terms, or my time, or my way. FAITH is knowing, trusting, believing. that God will provide what we need. Whether it fits my plan or not.
So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.
HOPE
So much talk about HOPE this month. Rare Disease Day, and “HOPE – It’s in our genes.” Hope became necessary. The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in. (HEY, I never claimed to be perfect!)
Back and forth to the surgical team, to the social worker, the secretaries. Pleading. Help us. Hotel rooms that were available running several hundred dollars. Offers from loving people to pay the bill. But in the end money wouldn’t have stopped us. We would have paid whatever we needed. Because we had to be here. Right here. Right now.
So finally around 2 O’Clock on Weds. the call came. “We can put you up at the Ronald McDonald House for the night.” The fee – incredibly reasonable. The location- perfect. The reality – it was time to pack us up and be out of the house by 8.
Packing to take Meghan away is an adventure. It’s not the electronics, or the “stuff” but rather the food. Not even a major hospital can safely prepare Gluten, Dairy, Soy free food. So there has to be a cooler. Dad made fried chicken and plantains. I picked up a pound of a Boar’s Head staple. Cookies, granola, ginger ale, and other necessities. Showers for all. And Grandpa picked us up at 8.
We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time. I have to admit I was worried. Really worried about what I would find through the doors. But what I found was… love.
s
I had heard of “The Ronald McDonald House- The house that love built.” But I never gave it any thought.
I have a new charity on my favorite list.
We were welcomed – almost embraced by love and kindness. There was a nonjudgmental compassion the radiated out of every staff member. We were given keys to our rooms, and a tour with the rules of the “house.” We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room. And, after she was given a backpack – with a special monkey, and a monkey blanket.
And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket. Her grateful smile. My heart – full of love in this house.
Our room was on the 11th floor. Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic. And there was the most beautiful view.
LobbyLobbyOur RoomView out the window
And as we each found our way last night into our own level of sleep, there was LOVE. Everywhere in the room.
We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.
View out the window on this “Beautiful Day”Waiting for surgery with the new monkey from the bag last night!
By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.
A beautiful chaplain met us this morning, and clearly spoke Meghan’s language. She compared God to a loyal dog… always there – forever understanding of our needs.
The doctors took extra time with someone else’s baby this morning. I am glad they have that level of compassion. I am glad they take their time.
Now they need to take their time with mine.
The last status update came 15 minutes ago. They only began around 3:40. Prep took a while. She is stable, but its slow going. What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules? Why make it easy.
Thankfully – she has some very special guardian angels on the case today. And the prayers of countless others.
In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”
“Hope” is the thing with feathers—
That perches in the soul—
And sings the tune without the words—
And never stops—at all—
And sweetest—in the Gale—is heard—
And sore must be the storm—
That could abash the little Bird
That kept so many warm—
I’ve heard it in the chillest land—
And on the strangest Sea—
Yet, never, in Extremity,
It asked a crumb—of Me.
Emily Dickinson
Lots of talk about HOPE this month, as RARE DISEASE DAY approaches. The phrase “Hope, It’s in our Genes” has become one my family relies on when we struggle. Hope is complicated. Or its simple. I guess it depends on how you look at it. Regardless, its necessary- for all people at all times.
I can not imagine living my own life devoid of HOPE. FAITH and HOPE work hand in hand here, and at our most desperate hours one is always there to shine a light in the darkness. I am convinced HOPE is there, even in the darkest hours. When we look. Here’s what HOPE looks like at our house.
HOPE is the kiss of a dog when the tears just won’t stop.
HOPE is a hug, or an,” I love you.”
HOPE is an EMail or a text, or a phone call at just the right time, from the person you’d never expect.
HOPE is believing that it’s all going to be OK. Somehow – some way.
HOPE is pain relief, even if it’s fleeting.
HOPE is quality Physical Therapy.
HOPE is the friends, (and the people we barely know) who “Care about RARE” because of us.
HOPE is an answered letter from someone you’ve never met, whose willing to help – just because.
HOPE is laughter.
HOPE is medicine that works.
HOPE is butterfly kisses.
HOPE is the internet, and connections to old and new friends.
HOPE is family.
HOPE is knowing you’re not alone – ever.
HOPE is when that special thing you thought was lost forever… shows up out of nowhere.
HOPE is believing that the surgeon will have the right answer.
HOPE is confidence that you are doing the best you can.
I am actively, consciously, deliberately, trying to get out of my own way.
I have hopes, goals, dreams, aspirations. I love my daughter, my husband and God and my family and friends.
I want to be stellar mom, an outstanding wife, and a good friend.
I want to be a Christian woman who leads by example.
I want to shout from the mountaintops about the organic superfood changing lives in my house, and giving us energy and clarity of mind we never thought possible.
I want to teach people about health and wealth and how they can go hand in hand.
But I am stuck.
Right in the middle of my own way.
We had Meghan to the neurologist today. We left Staten Island at 1:45 and traveled the approximately 17 miles to the appointment in Manhattan. It took an hour and a half. I just about worked myself into a migraine on the way.
But, fortunately, the torturous migraines of the fall are a memory. Controlled by a medication I would rather her not take. Today we got a dose increase, and something to help her sleep. It should be noted the ONLY side effect the neurologist would even discuss from the medication was drowsiness. HA! Not here. There’s my Meg… doing it her own way.
This was an easy appointment. We were home by 5:30 although wiped out by the journey – all of us. The follow-up is in a few months, the new script is in hand.
They are asleep.
I am sitting at the computer. Thinking. Researching. Typing. Organizing. Planning. Attacking everything. Accomplishing – not so much.
Today I called to reschedule the thyroid surgical consultation. Suddenly 5 weeks seems like a really long time. The tickle in the throat is troublesome. It turns into coughing when she gets nervous, and is only pacified into a tickle by the boxes of cough drops on my counter. I try to ignore the reality that we both know exists. I try to tell her it’s no big deal, and to casually ask her to show me where it bothers her.
“It’s not sore till I cough. It just feels weird – right here.”
And there on the right side of the thyroid is what has begun to feel like a small stone. I try not to let my imagination get the best of me as I picture it pushing on her windpipe.
“It’s fine,” I tell her. “We’ll just get the doctor to take a quick look.”
She’s not dumb. Not by any means. And that is a good deal of the problem. Gone are the days when I could lie through my teeth and protect her from the evils of Cowden’s Syndrome – lurking behind each corner, hiding under the bed, and in the closet. Now the monster is real. And it gives real life nightmares.
So in 2 weeks, on February 6th we will head to Sloan Kettering to meet the pediatric surgeon. No one can be sure what he will say. And I am not sure there is a statement he will make that will soothe me or make me happy.
And the waiting game continues. One appointment down. Two weeks till the next. Then on the 11th I have 3 and she has one. I still haven’t figured if its better to consolidate or spread them out. They just keep coming. One after another…
“Beatingcowdens” will suck out your energy if you let it.
But I won’t. That’s why I have gotten so involved in this superfood, and this fabulous company called Isagenix. Recently they named their 100th millionaire. A school guidance counselor from NJ with no network marketing experience. We three start every day with our shakes. We use the snacks and the meal bars, and the tea, and tonight they both took the melatonin spray to sleep. We are feeling better and better. So in the time I have at night, I listen to podcasts, I learn all I can. And I try to share with my family and friends that I am finally not that sickly little girl they knew. I try to share with them the health and wellness opportunities, and the vision for financial freedom. I am here. I am ready. If they will listen.
meghanleigh8903.isagenix.com
And its a good thing I am a master at multitasking, because there are lesson plans to write – for a subject I love across a LOT of grades. Trying every moment to be the best I can be.
As I sort through the last boxes from Dad’s apartment. And I laugh, and I smile, and I cry. As I make binders of beautiful 8×10 prints I found everywhere. As I sort through the photos on CD and prepare hard drives for my brother and sister. And I chuckle at the bills that come in, and I make contact with the members of his platoon in Vietnam, and his old friends – one at a time. Unearthing buried treasure from a man I loved dearly. Not a saint, but who is? And so much wiser than any of us really gave him credit for.
And I make list after list of the things I need to do. In the house, in life, on the computer… Supplements to order, new pants for my growing girl, laundry, and a haircut, and all sorts of other random yet necessary things.
I think about my friends who I love. The ones I never call, or barely talk to. The ones who I text instead of calling or visiting. I think of how busy our lives are… and for what?
Rare Disease Day is coming. February 28th. Our school is celebrating. Meghan is thrilled. There will be Tshirt sales, and a movie night, and proceeds to the “Global Genes Project.” It gives purpose. Hope. A distraction.
Somewhere in the midst of all this I have to stop and wonder. How do people do it?
Our lives have their own brand of busy – a medical type – which may be different than that of my friends, but it bears similarities. Over run. Overworked. Exhausted. Worried.
How do they get out of their own way? How do they manage to keep the balance of friendships and “play dates” for adults and kids? How do they get the laundry and the grocery shopping done, and still find time to play?
I think I am a pretty organized Mom. But yet – I need to use my time better. I won’t part with my writing. That’s therapy for me.
I’ve minimized the clutter in my house (just don’t look in the closets.) Now its time to minimize the clutter in my head.
Cowden’s Syndrome Awareness
This card was created out of her need to “teach” others about Cowden’s Syndrome.
Rare Disease Day
Doctors, surgery?
Isagenix – health and wealth
Reconnecting with old friends
Making the time to exercise… cause I like it.
FOCUS
Now if you’ll excuse me… I have to find my way out of this maze…
I am a huge fan of online shopping, and normally I anticipate my orders my counting the days till their arrival.
Except this one – not so much.
It was a purchase made out of necessity, not desire. It sat in my online shopping cart for 2 months before I hit send last night. It will arrive some day next week. It leaves me with mixed emotions.
Gratitude, that it is not a full time arrangement.
Anger that it has to be part of our lives at all.
Frustration for my energetic girl who would rather run, than walk. And would love to do both without pain and bone-crushing fatigue.
Anxiety, about all the ignorant folks who will pass judgment that I hope she doesn’t hear.
Guilt, that my child can walk and so many others can not.
My beautiful girl, as you know by now, has suffered with health issues her whole life. They have ranged in severity, but they have been consistently problematic. The diagnosis of Cowden’s Syndrome in the fall of 2011 answered some of the questions, but by no means all of them.
Research is scarce. The cancer risks associated with our PTEN mutation are real, and documented. But, the rest of the symptoms are shared though anecdotal conversation in small internet groups, worlds apart.
I can not know if, or to what extent, Cowden’s Syndrome explains the other maladies that have plagued her virtually since birth.
There are food sensitivities, on the narrowest list we have ever had she is gluten, dairy, soy, dye, and preservative free.
There was the gall bladder removal at age 3.5, and the pancreatic insufficiency that requires digestive enzymes with every food.
And, despite the most serious precautions, as well as daily probiotics and nutritional supplements, there are still daily stomach aches.
There is the AVM in the knee – the one that needed 4 procedures to finally cut off the abnormal blood flow – for now.
There was the vascular malformation in her hand that the kind surgeon was able to correct last summer – after MUCH angst.
The lipoma on her back was almost certainly Cowden’s related.
And the biopsies. The three thyroid biopsies – the most recent of which still wreaks havoc on my nerves- those are Cowden’s too.
But the chronic pain? The joint issues that make 200 mg of celebrex a necessity – not a luxury…. who knows?
And the physical therapy that is a necessary part of her existence – just to function.
What about the migraines – now well controlled, but not gone?
And I sometimes wonder why she is a bit absent minded? Shame on me. It’s undoubtedly necessary for her to survive. Imagine if she thought of all that every day, and all her daily activities? She would lose that magical smile. And I don’t want that.
The frustration is as palpable as the largest nodule in her neck. She WANTS to do EVERYTHING the other kids can do. She wants to run, and play, and participate with them. She is TIRED of being different. She is TIRED.
Swimming is a good idea, but it takes so much out of her. Last night’s practice got in the way of tonight’s. School was tough. Clammy, hot flashes, uncomfortable. Maybe she’s coming down with something, but more than likely she’s just wiped out.
Three practices a week was the plan. Two became the goal. This week it was one. But somehow its worth it, for her to be able to say she is on a team. To be able to say she swims competitively. To feel somewhat “normal.”
When she was younger I could hide things from her. Now she’s just too smart.
When she was younger I could convince her all the kids get tired. I could deflect her attempts to play too hard.
When she was younger she might not have noticed that an hour in the snow on Friday knocked her out for the weekend.
When she was younger…
But she’s older now. Wise beyond her years. And I have been where she is, and I hated it. She has it worse, and I know she hates it too.
She can swim – pretty fast. Just not too often.
She can run- a few laps back and forth in the gym – as long as she has her Celebrex and PT.
She can play outside for a bit – but not too long.
She can walk too. Until the pain in her legs, or her hip, or her knee wipes her out. Or until she has to surrender to fatigue that will keep her in bed for 13 or 14 hours.
I am grateful. You bet. And sad too. And I think it’s OK to be both.
She spent a few years in a MacLaren push chair when the walking was extra long. Now SHE is extra long – adult sized at 10. Time for adult sized reality.
SO if you happen to run into us when she needs that wheelchair, just smile and say hello.
We will remember to be grateful we don’t need the wheelchair full-time.
When you are tempted to pass judgement on my healthy looking daughter – be grateful you don’t need it at all.
Unwinding from another wild week I checked in here to find that at some point very soon this “Beating Cowden’s” blog will clear 50,000 views. The number is almost incomprehensible to me. I am humbled by the support, and the ability to raise awareness of ours and other rare diseases.
This week Meghan endured ANOTHER MRI. This time her head was firmly fixed in a cage as she had her brain scanned on every level. while receiving 8ccs of the gadolinium contrast dye that I suspect has been helping cause the headaches to being with. Irony. Exasperation.
The bright spot came in the words, “There is no tumor. There is no AVM.”
Sweet relief and agonizing frustration simultaneously.
Grateful beyond measure that there is no need for brain surgery. Relieved to my core that there is no evidence of any suspicious mass or vascular malformation.
Distressed, worried, disturbed, and sad about the diagnosis of chronic migraines. Please spare me “It could be worse.” I know. So does she. But I have to tell you about 3 hours after starting a migraine I am done. She has been at it 2 months. She has not missed a day of school, managed an almost perfect report card, and made it to some swim practices. She just keeps plugging.
So, we doubled the medicine – striving for the day the pain scale hits 0 again, and hoping it’s soon.
Lots of kids without Cowden’s get migraines – but somehow as the detective in me uncovers her triggers I suspect they will be linked.
And one day soon she will feel strong enough to get back into the pool for swim practice. Her health has allowed her only about one practice every 2 weeks. Her goals are much higher. Patience.
Working on ways to safely rid her body of gadolinium and other toxins not proven to cause, but clearly not helping the headache situation. We will figure it out. The stakes are too high to give up.
The rest of the stuff. The worries that are just real life worries, and not Cowden’s worries at all. The ones I can’t blog about. They are the ones keeping my heart extra heavy.
I can credit someone else’s Facebook post for even allowing that random wondering to slip into my head. But it has served as a distraction… so I am grateful.
It’s hard for me when I need to choose my words carefully. I usually just lay it all on the line and that’s how I keep it together. Except when your heart is heavy because of matters that just need to be private, that makes it extra hard. So that is why I haven’t been posting much. But without my writing the voices just stay in my head, and then…
But my heart is full for so many reasons, and some I can share with you. Blessed by my consenting 10 year old, as long as I don’t disclose anything embarrassing – to educate the world about “beatingcowdens.”
The headaches have been around on and off for a while. So long that I don’t actually remember. It sounds awful that I as a mom could say that, but it’s true.
I remember the pediatrician saying to me that I should take her to a neurologist because he kept hearing me mention headaches. I remember being overwhelmed by too many doctors. I remember last year blaming the prescription change on her glasses. I remember blaming chelation. I remember blaming allergies…
But the headache hasn’t quit. It’s been weeks now.
It varies with intensity. We are trying to get her to understand and use a pain scale to get some consistency.
But pain is such a personal thing. It’s just not easy. We can never exactly know the pain of another because every body perceives pain differently.
What I do know is that there has been a headache to some extent for over a month and that’s too long.
What pushed me into action was last Monday night. Homework was finished, and I was ready to bring her to swim practice- the place she loves more than anything. And she told me no.
She said she didn’t feel right. She said she wasn’t strong enough. So I let it go and kept her home. But THAT didn’t feel right to me.
Then there was the day that she was waiting in my classroom for the school day to start and she said, “There it is mom! Feel that pulsing?” As she put my hand on the side of her head I got queasy. We all have pulsing in our heads to some degree, but once you have dealt with a vascular malformation – or a few – the pulsing takes you to a new mind numbing level of anxiety.
And when the teacher gave her a shell and she held it to both ears, and said , “I can’t hear it the same in my left ear…” And then there is the ringing that comes and goes…
So tomorrow we head back to Manhattan to visit a neurologist. A little later than the pediatrician would have liked, but we are going. And with every deep fiber of my soul I hope with all my heart that he tells me my girl has the worst fall allergies in the world. And in a few weeks it will all be just perfect.
That’s the story that will get me through the night.
beatingcowdens 