life – Page 19 – beatingcowdens

Changes – big small, and in between

Published on March 31, 2013 by beatingcowdensLeave a comment

All sorts of changes… and today on Easter, one of the most significant.

My Mom said to me many times when I was a teen, that I would do more changing in my 20s than I ever would in my teens. She was absolutely right.

I guess she didn’t want to overwhelm me, because she never mentioned the volume of changes to take place in your 30s.

You grow up sure. You have strong opinions. And slowly… they evolve.

I’d like to say the values I was taught as a youth are still at my core, but my expression of those values has changed over time.

And, while all that was taking place – I managed to meet the love of my life.

Sometime after we married we purchased a true “handyman special,” which we are still polishing up 13 years later.

Then there was this beautiful little girl – rocking our worlds from the very beginning. NICU, colic unceasing, OT,PT, Speech, hospitalizations, chronic viruses, tests, doctors, surgeries – and eventually Cowden’s Syndrome.

She grew into a beautiful young lady – despite the odds stacked against her. Her very existence changed my long standing beliefs on modern medicine, and strengthened my faith in God every step of the way.

My family unit is so strong. We are incredibly blessed to hold each other’s hands through the twists and turns and changes life has in store.

Today was a big one.

On this, Easter Sunday, the Celebration of the Resurrection of our Lord, my family stood in front of the Moravian church and professed our intention to become members of their community.

My history, my heritage, my core, was developed as a Lutheran. My heart is now Moravian.

And their motto, “In essentials unity, In non-essentials liberty, In all things LOVE,” speaks to my soul.

We make decisions every day – guided by the power of the Holy Spirit, with faith that we are moving in the direction intended for us.

The fact we now attend worship as a family of THREE, leads me to be sure we are on the right path.

My 30s have sure been a trip. I have only a few more months left and I wonder what else is in store. But heck, then there are the 40s to look forward to. One day my mom will get a few minutes to sit still, and I’ll grab a bottle of wine and ask her all about them.

Good Friday – for the “first” time at the age of 9

Published on March 29, 2013 by beatingcowdensLeave a comment

I grew up taking some things for granted. And, when you are 39 it is quite easy to forget there are some things even the brightest 9 year-olds don’t know.

It has been a long week. One of doctors, and appointments. Lots of homework. Running errands to try to catch up on our lives. Felix’s grandmother, who Meghan and I barely knew, passed away this week. Emotions. Pain. The hearts hurt. The hand hasn’t healed quite yet. Physical Therapy. Lots of processing for my deep thinker.

I know Meghan knew this was “Holy Week,” if f0r no other reason, than I had told her.

She participated in the Palm Sunday Service last Sunday and understood everything in great detail.

Wednesday our church set up “stations,” where you could travel to experience Jesus‘ last days. There was fragrance, 30 pieces of silver, bread, wine, a cross to nail your sins, a stone to imagine the weight of the one in front of Jesus’ tomb. There were 13 stations in all. Each one a meaningful experience – traveled through alone or in a pair.

At each station there was a Bible passage, and a scenario. There was a way to put yourself in the situation. Meghan and I traveled most of the stations together, talking and sharing as we went. Long productive conversation that night.

We did not make service last night, but tonight, we headed into the “Good Friday” service.

I had never experienced a Tenebrae service, or a service of shadows. There was a huge cross of candles in the front, extinguished one at a time as various readings were completed.

And, knowing her so well I watched Meghan through the service become increasingly uncomfortable.

When we left and asked her about it, she told us she never knew the story of Jesus’ death. She had heard it told, but never read from the Bible. She had no idea the extent of His suffering. She was amazed that He could still love us after all the awful things that went on.

Long, long discussions. Just starting to wrap up.

My first reaction was guilt. Had I failed as a Christian mom?

Then I realized, as always, things were happening as they were supposed to.

I was learning lesson upon lesson just hearing her speak.

We are so weighed down by the earthly problems, that we sometimes forget. We sometimes lose focus.

Cowden’s Syndrome, cancer, PTEN, AVMs, viruses, surgeries, whatever the suffering,… we are children of a loving, forgiving God.

Jesus died to save us from our sins. To lighten the load. To eliminate the judgment and condemnation that sometimes weighs on our hearts – so we can concentrate on the important stuff.

And on the third day He will rise again…

How blessed are we? Sometimes I need my 9 year old to remind me.

Ramblings and Random Thoughts

Published on March 28, 2013 by beatingcowdens1 Comment

I am not who I was before.

Before there was Felix.

Before there was Meghan.

Before there was Cowden’s Syndrome.

Before there was breast cancer.

I am just not who I was before.

But every change has been part of a process, a transformation that is still taking place.

Perhaps the biggest change has been in my attitude towards others.

I try to surround myself with positive people.

Knowing full well that we all have our moments.

I deliberately seek out tolerant people.

Tolerant of changes. Tolerant of others.

Life is short.

Judgement brings anger, hatred, contempt.

I have no time.

So one by one I have worked to let them go – the toxic ones.

And I cling tightly to the others.

But such transformations affect your whole self – your core.

When I was much younger I had ideas. I was sure I was right – all the time.

Not so much anymore.

Now, I am sure that I make mistakes.

I am sure that everyone I truly love does the best they can with what they have where they are.

I am sure that everyone hurts.

I am sure that everyone struggles.

I look with a softer heart.

I see things from the other point of view.

Once I might have said that I found others beliefs to be “wrong” or “immoral.”

Now, I respect that others have beliefs and feelings that deserve to be respected – just like mine.

Maybe its the Cowden’s.

Maybe its the stress, or the fatigue.

Maybe its just me – growing up.

I tend to stay out of politics, and I don’t really comment on religions other than my own.

But I know I was raised to love my neighbor.

I know I was raised not to judge.

Really in the end – I just think if we all loved each other as sisters and brothers…

… well maybe more things would make sense.

I am not who I was before-

I am a work in progress.

I am surviving.

I am beating cowdens one day at a time.

I am embracing lessons learned.

I am wiser and more tolerant than I ever hoped to be.

Cowden’s Syndrome – You’re NOT the boss of US!

Published on March 3, 2013March 3, 2013 by beatingcowdens1 Comment

“You’re not the boss of me!”

Sometimes little kids can be misguided. Sometimes, Mom, Dad, or teacher is in fact the BOSS of them. But that statement from the mouth of a child is the beginning of their move towards independent thought. And, if nurtured properly can lead to a productive, independent, determined adult.

That’s what we are getting at here.

You see I spend enough time around children, that their words and phrases sometimes stick with me. And this one is stuck with me this weekend. So I reflect how it applies to my 9 and a half year old daughter and my 39 and a half year old self.

See, even though Meghan is very good at realizing I am often the BOSS of her, she will not be easily ruled. And while I love her independence, I love more the fact that she remains respectful towards her father and I – and dare I say, all the adults she deals with. She, as an only child has lots of bosses, but I encourage her to rise up against the tyrant that is Cowden’s Syndrome – and she does.

If Cowden’s Syndrome were her boss, she would sit idly by while the pain persisted; in the knees, the ankle, the shoulder, the wrist or whatever joint it currently is attempting a choke hold on.

But, since its not – she goes to dance class on Monday, Swim practice on Tuesday, Music and Movement on Thursday, and Swim Meets on the weekend. She often cries in pain in the hours following these events. But never once does she talk of stopping.

You see, Cowden’s Syndrome is not the boss of her.

Cowden’s Syndrome would have her hide in a corner, ashamed of an “orphan” disease that no one can really understand. But hiding is not for my girl. Instead she asks for a denim ribbon necklace. She learns about the Global Genes Project, she understands “Rare Disease Day,” and she actively participates in the “Wear that you Care” campaign. She makes thousands of denim ribbons, and informational fliers. She gives 2 speeches at her school. She even wrote a book about it. HA! Don’t tell her no one really knows about Cowden’s Syndrome – because she will take it as a challenge, and fix it.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!" — A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

https://www.facebook.com/photo.php?v=10200149863021946 (To see Meghan’s speech)

Cowden’s Syndrome – with its biopsies and cancer risks would like to leave us terrified. Instead, we are empowered. Meghan got the anesthesia she needed and deserved, to have her last thyroid biopsy with dignity. The terror is gone. We will have anesthesia next time too. And, if the cancer hits – we are ready. We are empowered.

Cowden’s Syndrome – You’re NOT the boss of us.

You certainly don’t rule me. 85% risk of breast cancer – yeah, so? Endometrial cancer? Nope – don’t need that either. Thyroid cancer – half gone already, and checked every 6 months. Melanoma – nope. And annual skin exams just to be sure. Colonoscopy – did that. Clean enough to wait until 2015. My spleen – well. That’s still in limbo. But you know what? Whatever. I have stared down worse.

Just came back from my girl’s first swim meet. Time to relish in the satisfaction that something normal happened here today. We will handle the pain, with the smile of knowing – she’s pretty fast.

I know you’re staying Cowden’s Syndrome. I know we can’t ever get rid of you. But, seriously. Unpack in the basement closet and stay away from us.

Cowden’s Syndrome – You’re NOT the boss of US!

This one’s for you Mom – HAPPY SWEET 16!

Published on February 24, 2013February 24, 2013 by beatingcowdens2 Comments

This one’s for you Mom.

My Mom doesn’t have Cowden’s Syndrome. The tests confirmed that.

What she does have is strength, stamina, and courage unrivaled by most. She is a tough cookie. An inspiration with her determination. Not once throughout her life have I ever known her to give up.

Mom is a survivor.

Long before she was a breast cancer survivor, she was a survivor of life.

She survived a divorce, two jobs, and raising 2 kids alone – with the help of my grandparents.

She survived sleepless nights, and worry.

She battled for her kids- fought doctors, insurance companies and the like. And, she even battled with us on occasion… If you can imagine that!

Long before she was a breast cancer survivor, she was my Mom. And she taught some valuable lessons I still use today.

(My sister posted the other day that “Some days I open my mouth and my mother comes out!”)

These are her words coming out of me these days….

But God is good - all the time! — But God is good – all the time!

And….

I really think I am OK with this concept, but we all need a reminder sometimes!

When my Mom was diagnosed with breast cancer I was 23. I was scared. She might have been scared, but she attacked it with her “matter of fact” attitude that I think is what has gotten her so far.

She went for her first mastectomy on February 24th of 1997. She was just 48. The second mastectomy followed in April when cancer was found in the other breast. 6 months of chemo followed. 5 years of Tamoxifen followed that.

And she just kept right on going. Even though some days she felt like this…

Truth be told, maybe we all did. But I did what I could to help out with her, around the house, and with my little sister. I was really just amazed by her drive. But I think I still am.

Last year when I was scheduled for my mastectomy, the surgeon asked me who had been with my mother during hers. I told her my dad and I had. She said, “Well call mom and tell her its time to return the favor.”

I called her on the ride home and although I can’t imagine it was an easy call to take. She never flinched. She took the week off that I had the surgery (a HUGE compliment from someone who sparsely misses a day of work.) My recovery went so smoothly. And I had some of the best conversations of my life with Mom that week.

When my pathology returned DCIS, she was the first one I called. Neither of us were surprised. And, yet her reassuring words, that she knew I had “done the right thing,” gave me such peace.

Before Mom was diagnosed she dreaded turning 50. After all she had been through she embraced 50 with grace and charm, and a few years ago gave 60 a great big hug.

Mom's 64th birthday - and 4 generations of tough ladies! — Mom’s 64th birthday – and 4 generations of tough ladies!

This is a picture from her 64th birthday a few weeks ago.

My mom may not be like everyone else’s. She can be a tough lady. She hasn’t had an easy life. But she has a heart of gold. And I love her for who she is.

As I grow I realize everyone does the best they can with what they have where they are.

I am thankful – so thankful – for these last 16 years with my Mom. I am grateful she got to know my daughter. I look forward to having her around for a long time.

A mother bonds with all her children, and she is close with my sisters – differently than how we are close. That’s what makes each relationship special.

We share some things that can’t be put into words…

Just past the finish line. Aren't we "Pretty in Pink?" :-) — Just past the finish line. Aren’t we “Pretty in Pink?” 🙂

She will always be my friend. I hope she knows just how much she is loved.

Happy Start to your 16th year - CANCER FREE! — Happy Start to your 16th year – CANCER FREE!

Crying is OKAY here

Published on February 13, 2013 by beatingcowdens2 Comments

I cried today. Yep. That was it. Couldn’t hold it in one second longer so I pulled the car into a lot. Thankfully I was alone. And I rolled up all the windows, locked the doors – and sobbed.

It only lasted about 10 minutes, but I caught a wicked headache, and a bit of stress release from that good old-fashioned hissy fit.

I generally make a habit of not allowing them. I am a look at the bright side of life kind of girl. I like to remind myself about others who have it worse, and try to put myself in other people’s shoes. It usually works.

Today the emotion got the better of me. And its OK.

Work was stressful.

Supporting my dear husband while he works his tail off three nights a week at school is well worth it, but stressful for all of us.

Homework. Constant. Ever changing. Tests that need to be studied for. Worry about things not yet complete. Yep, its only 4th grade. The teachers are lovely. The stress is really almost unreal.

Today we went to the Urgi center for X-rays of a foot and ankle that has been bothering Meghan since dance class Monday. She limped for 2 days before I thought – negligent mother should have a doctor take a look. Sprained. Takes time. (Besides the 2 hours out of the afternoon.)

In addition to Cowden’s Syndrome, Meghan has a few other neat things. One of her diagnoses is “Benign Hypermobile Joint Syndrome.” Great – if you can manage your flexibility. If you can’t it leads to all sorts of random injuries. We keep a really good PT around… just because.

But, if I am really really honest – I don’t think any of these things pushed me over into that screaming sobbing cry I so desperately needed. I think it was sadness. Sadness, mixed with raw fear.

Last night I sat with a friend and her 7th grade son at the wake for the little boy who died last week. I couldn’t for a minute imagine that any more sadness could fit in that one room. I had a lot of time to think while we sat. Maybe too much.

I looked first at his family. Mom and Dad poised, and carefully greeting each on the never-ending line. Big Brother and Little Sister, beautiful, supportive, composed. I told you. They could have been any of us. And I am sure they never in their worst nightmare imagined they would be standing there.

And I looked at the police officers, standing in honor. Each one with red eyes as they tried so hard to remain stoic. Undoubtedly they had kids of their own, or they knew the young man well – or both.

Children. Everywhere. Out of order for a wake. Except this time it was theirs. It was their friend. The kid they sat in class with. Young preteens – so many of them former students. Faces raw with emotion. A night they will never forget.

Tomorrow my friend and I, we will go to the funeral mass. We will represent our school. We will try to keep ourselves composed. But, her thoughts will wander to her boys, and mine to my little girl. I will think of the “close calls” we have endured, and the many the Cowden’s Syndrome has on the horizon for us. I shudder at the horror… at the potential.

And yet, if I let it consume me, what life will that be for my girl; my beautiful, generous, compassionate young lady?
If I let the tragedy overwhelm me with the reality that at any moment, any of us could be this family, I will lose track of what I have.

If I lose track, if I stop cherishing the blessings I have, I do not give any honor to the memory of this little boy.

Instead, I hug tighter. Try to strengthen the duration of my patience. Smell the flowers. Say I love you. Believe in angels. Remember what really matters.

I can not comfort this family. My words are useless. They have to find their way.

But, I am quite sure now why I cried, and why I had to cry, and why I continue to cry. I can weep and mourn, with them and for them.

I can hug my little girl, and then hug her again. I can make memories that matter.

Maybe if we all take some time to show some extra love. Maybe then we can find a way to keep his memory alive forever.

God, hold them in the palm of Your hand – tomorrow, and forevermore. Amen.

There are just no words

Published on February 8, 2013 by beatingcowdens3 Comments

Tonight it’s not about us.

No matter how hard I try. No matter how much I trust. No matter how much I pray. There will be some things I will never understand. Ever.

Today a generally healthy 11-year-old boy, a 6th grader from the neighborhood died. A few days ago he stopped breathing, and today he is gone.

The details leading to the tragedy just don’t even matter, as much as the fact that it happened at all.

When I began teaching, his mom taught with us. It wasn’t long before she would take childcare leave to build her family of three. We were not close friends, but colleagues still the same, and close enough that I am absolutely sickened by the loss she and her family are enduring.

Years later the children would come, first through my school, then another local elementary school. The two boys are in Junior High. The 8th grader, the oldest, is just two years ahead of the little brother who passed. Their sister is a 3rd grader.

The family is just like any of ours. The mom was a teacher, dad a police officer. They were the “regular” family.

This is the stuff nightmares are made from.

Even though we live in a “big city,” our borough is a small town. There is so much interconnection in this area it seems everyone knows someone.

I was not “friends” with the family. We chatted when we saw each other, but our kids didn’t play together. We weren’t “close.” Yet still I am heartsick.

I know families who have lost children. I know mothers who continue to function after burying their babies, and fathers who get up and one day go back to work. I am in awe of their strength. I can not imagine the depths to which the loss of a child changes you.

And we seem to hear of it all the time. There are tragedies, school shootings, traffic accidents, and the like. There is cancer and its far-reaching effects. There are countless rare diseases that I learn more about each day, that rob parents of their children way too soon.

Chronic illness is not fun. It can be downright difficult to bear at times. But tonight again I will thank God for Cowden’s Syndrome, because despite the headaches and trauma it can cause us, it is a blessing. We have a warning system. We have constant screenings that will likely protect us from the ominous cancers looking to attack. We are blessed.

I do not by any means think that any type of loss is easy to bear.

The loss of my cousin shaped my existence as a person, but even I never fully recovered. I still pray for her parents and her sister.

I was in the 6th grade when a friend from my church was hit by a car and killed on the school bus stop. No criminal charges. Just regular kids playing. And then they weren’t. I remember the whole experience vividly 30 years later.

A few weeks ago I stood by the side of a work associate whose 39-year-old daughter had died of cancer. No words.

One of these parents told me there is a reason there is no word to describe a parent who has lost a child. The grief can not be contained in words.

I just can not for even a moment imagine the shock and trauma when you put your healthy 11 year old child to bed, and he doesn’t get up.

Tonight my heart is with the family. The mom and dad, the brother and sister, as well as all the extended family and close friends whose lives are forever altered.

I will pray that God holds them all so tightly, and that He binds them close together, and showers them with His love.

There are just no words.

Dead Poets Society

Published on February 3, 2013 by beatingcowdens3 Comments

The church bulletin this morning had these words from Henry David Thoreau…

Poignant. Especially as I sat, in my “new” church, watching my daughter participate actively in a “Family Friendly” service. They do those about every 6 weeks, in cycles, and I really enjoy them. This one, this week, focused on growing up.

So, as Meghan stood singing, in a small, multi age group, I thought about the backdrop behind her. Initially it still felt “wrong” to me. I somehow expected her to be in front of the church I grew up in; with the same smile, and the same voice. I imagined the picture behind the altar that became ingrained in my subconscious as a youth, and the striking stained glass windows. I was looking for the familiarity of my childhood, even as I myself, and with my family, am still, at almost 40, “growing up.”

Things did not work out. After 38 years that was initially so hard to swallow. I was angry. I was sad. I was generally heartbroken. But maybe it was time. Time for me to “grow.”

For years I prayed for a place where my family could worship together. We have spent 6 months now, almost every week, as a family of three in the pew. The motto of the Moravian Church, “In essentials unity, in non-essentials liberty, in all things love,” speaks to my soul.

I looked at the cross, and the Moravian Star, and I smiled. The backdrop has changed, but not the meaning. “It’s not what you look at that matters, it’s what you see.” She was standing in a different place, but there was the same love, and acceptance I have come to equate with my faith.

When I got home I couldn’t shake the images from “Dead Poets Society.” Quotes from my all-time favorite movie from 1989, with my all time favorite actor, Robin Williams flooded my head.

Thoreau, along with other famous poets wisdom peppered this movie with all the perspective I needed as I high school student. And, now as I “grow up,” decades later, the meaning of the words changes a bit, but the movie “grows up” with me.

And the reality that…

The scene that spoke to the teacher and human in me, as Robin Williams hopped onto the desk…

The reminders that we are to always look at things from a different perspective.

These are the words that shaped my youth. These are the words that give me strength – decades later. I love words, especially straightforward ones that speak to my soul.

In 1989 I thought life was complicated. I had no idea that just shy of 25 years later I would be facing a rare genetic disease like Cowden’s Syndrome, with all its risks, and perils. I could not imagine in my worst nightmares that my beautiful girl would be facing it too. And yet, these words, that became part of me – help give me the strength to endure.

My faith is strong. My understanding of others, and the need to always look at things from a different perspective is a large part of how I define myself.

Growing up. Changing. Doesn’t mean ending, but rather new beginnings.

It may be a while before Meghan is old enough – or even interested in my favorite movie, but I will teach her – one step at a time.

Every day – we work in this house on new beginnings. We work on finding our voice, and moving forward.

We try to live a little, learn a little, and to keep God involved in it all.

We make a few denim ribbons, we raise awareness, and we keep the reality that we are fortunate.

All this from a “Family Friendly” Church service centered on ‘growing up.’

I consider myself successful as a Mother, if my girl grows up – Cowden’s or not – with these ideas helping shape who she becomes.

Reblogged, and worth the read

Published on January 26, 2013January 26, 2013 by beatingcowdens1 Comment

Sometimes you read a story that just needs to be retold.

This link will take you to the world of a young lady I “met” through my blog and have come to respect.

She does not share my same genetic mutation, hers is the BRA-CA gene, and mine is PTEN. But the breast cancer risks are ridiculous for both, and she bravely as a young twenty something, underwent a prophylactic bilateral mastectomy.

In a rare request, she is asking for help, and I certainly feel compelled to share her reasonable request.

It is through social media that I have come to find others “like us,” to share mine and Meghan‘s story of our Cowden’s Syndrome battle. Without that outlet, I would feel incredibly lonely.

Please take a moment to read Rachel’s story, and another to respond to her request.

This world of genetic predisposition is terrifying, and should not be traveled alone.

Lori

Ticking Time Bombs

My mom is a member of the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. She has been paddling with the Pinks for about a year now. Last night, one of her teammates passed away after a long battle with breast cancer. Frances was my mom’s benchmate on the boat. On the Pink Dragons’ Facebook page, Mom writes: “Frances, your courage and determination was an inspiration to all of us. Your teammates will miss you so. Rest in peace, dear friend.”

Then scrolling down through my Facebook newsfeed, I was accosted by another heartwrenching message, this one from Bright Pink founder Lindsay Avner: “My heart breaks upon learning of the loss of Rebecca, a member of the Bright Pink Vermont family, who lost her battle to breast cancer at only 29 years old.”

29 years old.

Frances and Rebecca’s deaths are…

View original post 555 more words

Are you Santa?

Published on January 20, 2013 by beatingcowdens3 Comments

I can not take credit for the content of this letter. I found it on the internet, but it met my needs, as the questions started coming fast and furious. How can Santa…? How big is the tooth fairy…? All ways for her to let me know she “knew” and was ready for me to tell her. I on the other hand was not ready at all.

January, 2013

Dear Meghan,

You asked a very good question: “Are you and Dad Santa?”

I know you’ve wanted the answer to this question for a long time, and I’ve had to give it careful thought to know just what to say.

The answer is no. We are not Santa. There is no one Santa.

I am the person who fills your stockings with presents, though. I also choose and wrap the presents under the tree, the same way my mom did for me, and the same way her mom did for her. (And yes, Daddy helps, too.)

I imagine you will someday do this for your children, and I know you will love seeing them run down the stairs on Christmas morning. You will love seeing them sit under the tree, their small faces lit with Christmas lights.

This won’t make you Santa, though.

Santa is bigger than any person, and his work has gone on longer than any of us have lived. What he does is simple, but it is powerful. He teaches children how to have belief in something they can’t see or touch.

It’s a big job, and it’s an important one. Throughout your life, you will need this capacity to believe: in yourself, in your friends, in your talents and in your family. You’ll also need to believe in things you can’t measure or even hold in your hand. Here, I am talking about love, that great power that will light your life from the inside out, even during its darkest, coldest moments.

Santa is a teacher, and I have been his student, and now you know the secret of how he gets down all those chimneys on Christmas Eve: he has help from all the people whose hearts he’s filled with joy.

With full hearts, people like Daddy and me take our turns helping Santa do a job that would otherwise be impossible.

So, no. I am not Santa. Santa is love and magic and hope and happiness. I’m on his team, and now you are, too.

I love you and I always will.

Mommy

I cried for at least an hour. She handled it with her normal grace and poise.

I hope she never loses her sense of wonder. Sometimes I wonder how broad the shoulders of a 9 year old should have to be. I know they all have to find out some time, but life is tough enough, escpecially when chronic illness fills your days. They should stay young as long as possible.

She already has plans to fill my stocking next year. She said I shouldn’t have to do my own – lol. ❤

And… Just in case I was worried – she said, “Don’t worry Mom, Disney is still the happiest place on earth!”