Dear Meghan… Mother’s Day 2018

Published on May 13, 2018May 13, 2018 by beatingcowdens2 Comments

Dear Meghan,

Almost 15 years ago you entered this world kicking and screaming. You scared the heart out of us, the doctors, and the nurses. The NICU nurses called you “Miss Attitude”. Even in distress that August day you showed them all you were not to take anything without a fight. You made me a Mom under the craziest circumstances, and looking back, maybe they were fitting. How could we know back then, when we were discharged, a few days later, and all of NYC went black in the blackout that no one will forget, that was just the beginning of all things epic?

I look at you now, taller than me, beautiful and smart, athletic and talented, and I burst with pride. You are good in your core. You are pure in your heart. You hold yourself to a fiercely high standard, and you hold others there too.

We’ve long passed the point where summarizing your history is easy, or even practical. Truth is, most people’s heads would explode to hold inside the medical journeys we’ve taken, and the emotional bumps and bruises along the way.

You made a decision many years ago, that your struggles would be only part of you, and that they would NEVER define you. You want to achieve, and you do achieve, in spite of your struggles, and not because of them.

Facing your teen years with the cloud of Cowden’s Syndrome always hanging nearby is daunting, to say the least. You possess knowledge, statistics and realities about your own body that no one your age should have to try to understand. You have more memories of trips into and out of operating rooms than most people would ever know in a lifetime. You have been held down, poked, prodded and examined so many times, even I sometimes try to forget. You have been through Physical Therapy and rehabilitation so frequently that we have the numbers for multiple surgeons and the best PT in the world, saved into speed dial.

Before you were 11 the threat of cancer stole your thyroid, and as normal teenage hormones kicked in, yours were just a bit more complex. Precancerous cells in your uterus before the age of 12 necessitated more synthetic hormones, and your body… sigh. Beat up and abused, no wonder it gets annoyed.

The PTSD (Post Traumatic Stress Disorder) diagnosis was not a shock, rather the exclamation point on the end of a very long sentence. Before the start of the next paragraph, in what will be a very long story…

The struggle to deal with it takes place mostly behind closed doors, and most people would have no idea.

You just keep going.

It’s not a sprint, it’s a marathon.

The longer, and harder the battle, the more determined you become.

You excel at school. You continue to make strides at swim. You are learning to use the beautiful voice you were gifted with.

You are my pride, my privilege, my daughter and my friend.

You have strengthened my resolve. You have helped me fine tune my “Mamma Bear”.

You have helped me learn self-restraint when I have had to allow you to handle things on your own.

You have helped me become a better human.

Sometimes, my dear, I want to scream, as your stubborn, rigid, principled self, clashes with my “I want to fix it” attitude. And yet, I count myself lucky in this day and age to have a daughter who is so sure of her principles that she will not bend to the whim of the crowd.

I wish for you the ability to find joy and laughter. I wish for you, to be able to smile among the good people you meet, and allow them into your world. I wish for that the kind souls you meet are able to understand that there is more to you than initially meets the eye.

I want you to know that you are good enough, and that you are enough. Yet, I want you to remain hungry and goal oriented and kind and compassionate too.

A wise woman (your grandma) once told me, you do more changing in your 20s than you ever do in your teens. You will continue to grow and learn and change, and develop your personality. Set your goals, meet them, exceed them, or rewrite them. Life is fluid, and full of change.

No matter how hard things get, never ever lose HOPE, and NEVER GIVE UP.

You gave me a beautiful necklace today. The compliment of being referred to as “Wonder Woman” is about as high praise as a mom of a teen could ask for.

If I possess those qualities they are because of you.

We will continue to take this long journey. The road will never be smooth. But I would take no other path if it meant traveling without you.

Together we remain #beatingcowdens.

Thank you my dear. Thank you for allowing me to be part of your world.

Thank God for selecting me as your mother.

Love you always,

Mom

Dear Mom…. Mother’s Day 2018

Published on May 13, 2018May 13, 2018 by beatingcowdensLeave a comment

Dear Mom,

You’re small but mighty. You’re a force to be reckoned with. You are a role model, and an inspiration. You are a survivor. You never give up. You were my very first hero.

I’ve learned a whole bunch through the years, and I’m quite sure I still have a ton to learn. This year, as you celebrate your first Mother’s Day without your own mom, the enormity of that is not lost on me. I just wanted to make sure you know that.

You raised three of the most different humans imaginable. And, yet, you did an awfully great job on each of us. That’s mostly because you did the best you could to give us what we needed. An impressive juggling act.

For years you told me “You’ll do more changing in your 20s than you ever did in your teens”. Truth. But, did you stop there so as not to scare me? The changing in my 30s- I still shake my head in amazement. And I’m quite sure now, half way to 50 – I’ll look back at 40-year-old me and find a stranger.

Nothing is easy. Nothing ever was. I remember.

Yet, I don’t remember a life couched in sadness or despair. I remember focus, drive, determination, and a whole lot of Never Give Up.

I remember a single mom who worked two jobs so we could have all that we needed, and lots that we wanted.

I remember you positioning us with your parents, so that right upstairs would be stellar role models. I know it must not have been easy. We don’t always agree with our parents. And, now, as a mom myself, I get how it might have been a challenge for you sometimes. But, I can tell you with confidence, it was right. Living downstairs from Grandma and Pop was a fantastic, life changing move. Thank you.

I remember the hours you worked, in the city all week, and then on your feet every holiday and every weekend, serving other people’s parties. I can only imagine how tired you must have been. Only now do I have a much better idea. And, I have a much better understanding of how you just kept going.

You made choices. You chose to keep us involved with all our families. You could have chosen differently. You had every right to. Thank you for choosing to allow me to choose.

You modeled for me, things I never knew I’d need.

And every day, as I dig deep to give everything I can to Meghan, I think of you.

You, and “The Little Engine that Could,” and Tinkerbell too.

Thank you for being tough as nails, and soft as a marshmallow at all the right times.

Thanks Mom, for the things I can put into words, and the things I can’t. Thanks for the stuff you just know, and the things in my heart.

Please know, no matter how old I get, or how busy you think I am, a call, or a visit, or even a text with my Mom brings a smile to my face.

Every. Single. Day.

Happy Mother’s Day.

Thank you for preparing me for #beatingcowdens, long before we had any idea of what was coming.

I love you forever.

I love you for always,

Lori

Reflections on Mother’s Day – from a “Rare Disease” perspective

Published on May 11, 2015May 12, 2015 by beatingcowdensLeave a comment

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

By Brian Handwerk, for National Geographic

PUBLISHED MAY 09, 2014

“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.

Motherhood

Published on May 11, 2014 by beatingcowdens4 Comments

MOTHERHOOD

I’ve only been a mother for less than 11 years, but I have been shaped and molded by some of the best around.

At 40+ years old, I can still boast THREE Grandmas that have all been a huge factor in my life.

I have my Mom – my hero.

And, I am friends with some of the best Moms in the business.

Not to mention – I parent a pretty darn smart 10-year-old – who has shared many life lessons with me.

So in honor of Mother’s Day – a most unusual one for me – I thought I’d try to reflect on some things I’ve been taught, and some things I’ve learned all by myself.

1. Motherhood is messy. Despite the best laid plans, no matter how your child, or children have been brought into this world it is a messy job. Things don’t go according to plan. Ever. So stop planning and stick your fingers in the mess of it all. Heck – jump right in and play. Your kids will remember your smile more than your polished table, organized closet or streak free windows. (I’m still working on that one!)

2. Motherhood is exhausting. Just when you think you have it – something will throw you into a new stratosphere. You will be tired for the rest of your natural life. Eat as well as you can. Take care of yourself. Try to give up caffeine. Splurge on under eye concealer. Then get in the car and head to swim practice, doctor’s appointments, shopping, therapy. While you are in the car – TALK. Children in the car are a captive audience. You can have some of your most important conversations there. Plus – it’s illegal to text and drive.

3. Motherhood is different for everyone. Comparisons are just not a good idea. As a matter of fact – make a habit of NOT comparing. There is no need to justify having one child, or claim you’re more exhausted with three. Each one, however the child became yours is a gift to be cherished. They are not potato chips, and having one doesn’t make it “easy” any more than having 3 or 4 makes it “hard.” Avoid telling anyone how much tougher it is to have a boy, or a girl. Avoid generalizing and making excuses. Just love your child.

4. Motherhood involves paying attention. Stop texting. Put down your cell phone. LISTEN to them. TALK to them. You may be very impressed by what they have to say if you get to know them.

5. Children are unique. Let them learn early to embrace their individuality. Create an atmosphere of unconditional love. Build their confidence, and keep them grounded enough not to become arrogant. Develop gracious losers, and equally gracious winners.

6. Motherhood is like being on stage. All day. All the time. And they watch EVERY thing you do. If you wonder how they learned that habit – good or bad – look at yourself. They want to be just like you. And chances are good they will. BE someone you want them to be.

7. Motherhood involves worry in a way you’ve never ever thought of before. That little heart beating outside of your body – no matter how old they become – will always and forever be more important than your own. You will worry about sniffles, and scraped knees, and heartache, and doctor’s appointments, and surgery, and pain, and healing. You will worry about doing too much, and doing too little.

8. No matter what you do, and how hard you try, you’ll never have it quite right. So always do the best you can with what you have where you are. That way you can rest your head peacefully every night.

9. Teach compassion. They won’t learn it unless you do. Teach them that “everyone has something.” No matter where you go or what you do or who you meet each day – EVERYONE is struggling with something. Whether it’s physical, mental, emotional, financial, greet every person with the knowledge they are bearing a burden. Try to frame all of your interactions with everyone around that knowledge.

10. Motherhood involves NEVER GIVING UP! Tenacity like you never imagined is necessary to do it well. When they are down and out and done, look at them and reassure them. Hold them. Support them. Forgive them. Love them with all your heart. The returns you get on the best investment of your life are immeasurable.

So as we sit tonight in the hospital, waiting, wondering, and worrying – we are still thankful. We have so many blessings in our lives.

Take a look at some of the women who helped make me who I am today – and enjoy what’s left of your Mother’s Day.

GGMa - a gift we got later in life. — GGMa – a gift we got later in life.

For those "like a mom" to us! — For those “like a mom” to us!

For those whose children are our Guardian Angels.

For the one who teaches me every day how to be a better human.

And we still squeeze in some time for fun!

HAPPY MOTHER”S DAY TO ALL!!

“Count Your Many Blessings…”

Published on May 12, 2013 by beatingcowdensLeave a comment

“Count your many blessings, count them one by one. Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon. I remember as a youth singing the song in church. I must have sung it plenty of times, because the lyrics are stuck in my subconscious. And, as things int he subconscious tend to do – they often pop out at just the right time.

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad. 25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen. Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband. I was greeted by my beautiful daughter and lots of hugs and kisses. Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad. We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew. Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again. How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life? How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted. That song started in my head.

“Count your many blessings…”

I thought of the friends I have who are desperate to be mothers. The friends who had to struggle to have the children they have. The friends who have miscarried, and friends whose young children live in Heaven. I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago. I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired. How lucky am I to need a list to shop for Mother’s Day Cards? How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone. But, I am aware that those years will come all too soon. For now – let me run, and visit, and hug and chat. Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight. I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow. A rampant virus, and her rotten immune system are not a good match. She won’t plant with her science class the way she likes to. She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease. A day of differences and disappointments. A day she will handle with the same graceful smile she uses for every other aspect of her life.