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.
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.
With the recent ALS Ice Bucket Challenge, we have seen ingenuity lead to a spike in funds and awareness for a horrendous disease. Fundraising for the organization is at an all-time high. I hope, sincerely and with my whole heart, that this influx of funds is well-managed, that it gets into the hands of researchers, and that is yields major steps towards a cure for this heart-breaking syndrome.
All this awareness raising got to me this week. We donate what we can to our church, and various charities near to us, but this week I got reflective. I donated to ALS and three charities that were not ALS, and have nothing to do with PTEN. My donations will not impact the world in an earth-shattering way, yet it felt good.
I’m getting my gold porch light ready for September – Childhood Cancer Awareness month.
Other people suffer, and all of us – disease specifics not to be debated, could stand to have a cure around
But, regardless of your opinion, I think this ALS Ice Bucket thing did more than raise awareness for ALS. I think, it increased our awareness of humanity and other people’s struggles.
A few days ago in Costco I had over estimated my strength. And as I wondered how I would get the chair into the car, two gentlemen came from nowhere. Different places I might add, to work together to fit the chair into my car.
Then I received a card in the mail. It had a check enclosed for us the for a charity of our choice, or something fun. The handwritten note told me that Meghan and my story was impacting at least one life. The need to keep sharing was renewed.
And I connected on Facebook to a man who we met in Disney last year. He and his wife and Meghan struck up a conversation on a long bus ride. He had a service dog. She was enthralled. She was raising awareness of Cowden’s Syndrome. He tried several times to send me a link to a song that made him think of Meghan. He was finally able to get it through. I cried. My little girl is making a difference and this man took the time to let us know.
In the mail was a package from a friend, a former student, with a “big sister” type of compassion for my girl. There was a letter (which wasn’t for me to read,) and a key chain for Meghan, and one for me too.
None of these people could have known I was having a pretty tough time. I don’t so well in chaos, and the house was absolutely upended. In the year that everything broke, the bay window was being replaced, the house needed new… lots of things, and the leak in the pool was becoming evident.
Random acts of kindness.
That’s why they matter. So much.
We try to pay it forward as much as we can. So special to be on the receiving end as well.
Whatever the cause. Whatever the reason. An increased awareness of others will make the world a better place.
Do something nice for no reason. With no expectation of anything in return. Just because.
It’s been a while since I’ve written. If I have my way I’m about to get so focused that you’ll get tired of hearing from me.
Life has become a bit overwhelming. And some days all of this, this whole chronic illness thing, is just too much to handle.
There are days the path looks like this.
There are days when it is easy to wonder, “What now?” or, “What next?”
But that is the very mindset that can find us in a heap of trouble.
So we are trying to work on shifting our focus. Instead of panicking when the bottom feels like it’s falling out, we are working on reinforcing the structure.
We all need a bridge, a support system of sorts.
With two members of the house who are the 1 in 200,000 unique that comes with having a RARE Disease like Cowden’s Syndrome, it’s so easy to let the illness try to creep into your identity.
I don’t talk too much about me. Mostly because as any Mom, my needs are second to those of my girl. But, I too get overwhelmed. And when I feel like Cowden’s is trying to choke me out – it’s time to pause and reclaim.
I am more than the paperwork and medical records. I am more than the bills and prescriptions. I am more than the scheduling and the appointments. I am more than the mastectomy scars. I am more than the synthetic thyroid hormone.
I am a mom.
I am a wife.
I am a friend.
I am a Christian.
I am a teacher.
I like music. I like reading John Grisham. I enjoy Law and Order. I like to laugh. I CAN’T get by without my Isagenix, and my Ionix. I appreciate photography, and I really, really like to sleep.
And with each piece of my identity, the pieces of my foundation get stronger.
There are things I have to do as a person with Cowden’s Syndrome. There are things I have to endure. There are an unnerving amount of tests and appointments and the constant nagging notion that things may spin out on a dime. But if I am honest – isn’t that what life really is – for everyone? While the issues may not always be medical, the reality is that despite our best efforts, we have no control. So, we do “the best we can with what we have where we are.”
And as I get my foundation in place. As my stones are strategically placed – so they can be stepping stones along the way if needed, I can work on helping Meghan build her bridge.
I figure once I have it together enough that I can catch her if she falls… she’s free to establish her own pace, and find her own way.
We will forever do outreach work. We will forever share our story. We will forever create fund-raising opportunities for research. That will be part of our lives. Cowden’s Syndrome will be part of our lives. But it will not BE our lives.
My daughter has seen more in 10 and a half years than most adults see in a life time. She has been medically poked, prodded, and cut. She has been in and out of hospitals. She has seen doctors hired and fired. She has been listened to and she has been ignored. She has had arteries ablated, and a body parts removed. She has vomited pure bile from a stomach torn apart from pain medicine. And she has pushed each day through that pain. She tries to be like the other fifth graders, but she struggles. She struggles to be understood and to fit in.
But, from my stones, my own developing identity, I can see her clearly. Perhaps more clearly than she sees herself some days.
I don’t profess to know all things. She’s a bright preteen. There are things I’ll never know, and that in and of itself is OK, and normal, and even healthy.
What I see when I look at Meghan is not Cowden’s Syndrome.
I see a beautiful smile. I see a kind heart. I see compassion. I see love. I see competitiveness. I see a swimmer. I see a singer. I see a reader. I see someone who loves to play hard, and relax just as hard. I see raw determination. I see high standards. I see someone, a young woman who makes me proud to be her mom.
This summer we are going to work on building. I want to be able to provide her stepping-stones. And then I want to help her build her bridge, with a healthy mix of guidance and independence.
I want her to see she has Cowden’s Syndrome, but it does not have her. It is an inconvenient part of our lives – but not our entire lives.
We are going to make memories. We are going to create situations that have nothing to do with doctors or hospitals. We are going to laugh and play. We are going to continue to “Live Deliberately.”
And we are going to write it down. It sounds so silly to think that we have to write down having time for fun, but we do – for now. Maybe one day it will become so automatic that life’s adventures will become common, and our medical world will fit in the empty spaces.
It’s not going to happen all at once. There will be days we have to remind each other. But, we will get there.
And along the way we will slowly build the team of medical professionals who look at us as people, and keep our best interests at the forefront of their practice.
Because as we become empowered, we will be rid of the others. Positive influences only. We deserve that.
She made swim practice tonight. No small feat.
The pain – evident, but managed.
Endocrinology consult Thursday.
Hopeful.
A balanced thyroid certainly would help a few (dozen) things…
While we were in the hospital last week, a good friend, who is chronically ill herself, sent Meghan a very interesting article.
It was about “The Spoon Theory,” and explained chronic illness from the perspective of one who lives it every day.
Meghan being incredibly literate, and a master at figurative language, picked up the analogies quite quickly, and while the author wrote about lupus, a disorder Meghan does NOT have, she found the text and related analogies very meaningful.
Our dialogue this week has already begun to include questions about how many “spoons” she has today. As someone who lives with my own share of issues, but none as severe as my daughter, this has opened up communication in a fantastic way.
The author has copyrighted the story, so I have permission only to link you to it, but I encourage you to give it a read.
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 like fall. I prefer the optimism and new beginnings that come with spring, but I do love fall. I like the sweatshirt jacket weather, and the pumpkins and apples, and the beautiful fall leaves. I like basking in the mystery and wonder of the beautiful colors as they fall through the branches to the ground, and blow through the air with the brisk wind. But, this year I almost missed it.
I sat on the steps Saturday as my husband frantically gathered leaves into bags so they could stop blowing all over our neighbors lawns. And, in our haste I almost didn’t notice, or even take a minute to appreciate the beauty of what was before us.
A testimony on life, and a sad one.
We, like so many others, are busy. We are painfully busy at points. There is school, and work, and homework. There are Physical Therapy appointments, and swim practices. There are lessons to plan. There is a house to maintain, laundry to do, dogs to clean, floors to wash, and marathon grocery shopping every few weeks to keep my allergy girl well-fed. There is mail to sort – regular junk to be shredded, bills to pay now and bills to pay later. And that’s just here.
There are family members grossly under-visited. There are people we love so much that live right close to us – who we never see. There are friends short distances away we haven’t seen in years.
And yet, usually we find a few minutes in the fall. A few minutes to toss some leaves around. A few minutes to giggle. So many thoughts flooded my mind as the last of the leaves hit the bag for this week. One more clean up and the trees will be bare for winter. And I looked up at that bright red tree above my doorway and took a minute to give thanks.
I needed to give thanks for the tree, above the new roof on the place we call our home. I needed to give thanks for my husband and the family and friends that helped it happen 13 years ago.
The fall leaves, like so many things that happen each year, are a beautiful reminder to give thanks – for beauty, for love, for hugs, for smiles…
Meghan got new glasses this week. She got her first pair in 2009, and her eyes have worsened steadily. As we picked them up, and she said, “WOW,” and “THANKS!” all at the same time – I was reminded of the little girl, who is now a young lady. I am struck by the genuine gratitude as her sight is restored. I am thankful for my vision, and the doctors who are able to help her have clear vision.
Meg Glasses 2009Meg Glasses 2011Meg glasses 2013
“Oh how the years go by…”
I have a friend or two who have given thanks every day this month, and I enjoy reading their thoughts and thankfulness each day.
For me I am thankful – but it’s more like a flow chart. One thing, one blessing, one bizarre set of circumstances leads to me being reminded of how many reasons I have to be thankful.
Tomorrow we go for that brain MRI. The one that will confirm that the suffering endured these last few months by my 10 year old who has seen so much, is “probably” migraines. Brain MRIs really suck. The only part to really be thankful for there is the part when they tell you they didn’t find anything.
These have been some difficult weeks. My heart is heavy, and worn. But I am thankful:
For my daughter, and her unfailing determined spirit.
For my husband, and his loving sense of humor, and his unending patience.
For my parents and grandparents, and the blessings of having them.
For my siblings, as we grow and experience life at different stages and paces.
For nephews of all ages and stages.
For my cousins and aunts and uncles all over the country – and for Facebook for helping me connect with so many.
For the friends who refuse to give up on me, even as I am not available – again. I take solace in knowing they will be there when I am.
For those I love who are sick in mind, body and spirit. Their strength inspires me.
For the doctors who care. Whether they get it right or wrong, my heart is open wide for the ones who care.
For Meghan’s teachers – past and present – school and church, and their ability to instill a love of learning.
For Internet friends – who support when other’s can’t.
For dogs, and their unending loyalty.
For two secure jobs in our home.
For giggling, and tickling and fake hand-made flowers.
For those of you who take the time to follow our journey.
I turned 40 last week and it wasn’t so bad. I am thinner and stronger, and more determined than I was in high school – albeit a lot more gray.
I guess that makes me thankful for hair dye.
And for boobs that don’t sag, and no need for a mammogram.
For size “small” – cause who knew people wear that?
For the Isagenix that taught me to eat nutrient rich food.
For the prayers of friends, and the strength and stamina to endure.
MRI tomorrow. Results to follow. Then, we will give thanks even for the torture of migraines, with the knowledge it beats the alternatives.
MOSTLY I AM THANKFUL FOR HOPE, as the Global Genes Project says – “It’s in our genes!”
And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!
The car isn’t fixed.
We had to take it back to wait for the “Field Tech” to have a look.
Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.
10 days in service and I left with the same broken car, with the same parts as when I dropped it off.
Except that a few “extra” parts were left on my seat and my console.
While we will make an appointment some time next week to leave the car for the “Field Tech,” I had to laugh in spite of myself at the irony of the whole thing.
We have spent the summer at doctors. Some doctors were routine, some were tests and follow ups for things that were not “ok.” While there are many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.
A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.
Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.
Too hopeful? Maybe. But, if I give up hope, where will we end up?
Raw with fatigue. Frustrated by “extra parts” and the people who don’t seem to know what to do with them…
Which ones do we put in? Which ones do we take out?
The similarities are almost uncanny. What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”
beatingcowdens 