21 Reasons ~ Down Syndrome Happiness

Jennifer is 34, she has Down Syndrome.  Down Syndrome does not define her.  Can life be difficult for people who live with Down Syndrome?

Each of her brothers and sisters will tell you “Yes”, probably with a smirk on their face.

Should the United States government be in the business of ridding our country of people who have Down Syndrome?  Should people who have disabilies be put to death before they are born?

Here are 21 reasons why people diagnosed with disabilities should be embraced, supported, and nurtured.

Not killed.

Reason #1 – They are first, babies.  Babies who explore their world, just like other babies.IMG_3119

 

Reason #2 – They have to put up with a lot of idiotic stuff inflicted on them by others, like trying to give them curly hair.

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Reason #3 – Birthdays mean the world to them.  Just like you and me.IMG_3166

 

Reason #4 – Holidays give them GREAT joy.  Just like you and me.IMG_3164

 

Reason #5 – They take ADORABLE pics with Santa Claus.  Just like our other children.Processed with VSCO with c1 preset

 

Reason #6 –  They cannot wait to open presents Christmas morning.  Just like their brothers and sisters.  (Well, one year, she opened every single one while we slept.)Processed with VSCO with c1 preset

 

 

Reason #7 – They will go outside to play, swing, swim, sled.  Just like all children do.Processed with VSCO with c1 preset

 

Reason #8 – They will be adored by their grandparents, and great grandparents, just like every child.  Jen and Maggie with Great Grandmother, “Gigi”.Processed with VSCO with c1 preset

 

Reason #9 – They can be helpers and bakers, enjoying the fun of the every day.IMG_3133

 

Reason #10 – They will start to love clothing,  even dressing in the same dress as a sister.  How the heck did I pull that off when they were all little anyway? Geesh!Processed with VSCO with c1 preset

 

Reason #11 – Every once in a while, God will let someone get a shot that shows their deep beauty and dignity.  Just like all our other children.Processed with VSCO with c1 preset

 

Reason #12 – There will be the photo shoots when everyone wants to just be silly.  Laughter fills a room with joy.  The laughter of ALL children, not just able bodied children.  Processed with VSCO with f2 preset

 

Reason #13 – They are just part of the crew.  Just like all siblings in all families.Processed with VSCO with c1 preset

 

Reason #14 – They will pick every flower in the garden.  Because every family has one child who does.  Processed with VSCO with c1 preset

 

Reason #15 – Some days they will be naughty.  Some days they will be like beautiful flower fairies.  Because that is the nature of a child.IMG_3178

 

Reason #16 – They will find joy in discovering new talents, like being in a play with great friends, and an incredible director who sees you as just one of the crew! Singing and dancing is good for the soul.       Something we all need more of!                                                  JEN 526086_341714165893431_313960920_n   JEN THREE 523173_340301676034680_842616822_n

 

Reason #17 –  Experiences with friends and community will give them joy, just like our other children. JEN FIVE 535210_340041009394080_2125325089_n

 

#18 – Beautiful people will come into their lives to teach them.  People you would have never known so well if it were not for “this child”.   Blessings we don’t want to miss.IMG_3147

 

Reason #19 – Their siblings will rejoice in their achievements.  Because it is in the family where a child learns to be happy for the other.IMG_3149

 

Reason #19 – It gives others opportunities of grace, of doing for others in a way that can light the whole world on fire.  This was a birthday party that friends threw for Jen, with Laura baking a cake from scratch, and all the girls taking Jen shopping to Claires.  For we have the words of Jesus, “Every time you did this for the least, you did it for Me.” Nuf said. Amen.JEN TWO 560031_373321456066035_181901621_n

 

Reason #20 – They are just as beautiful in a wedding party as every other bridesmaid. Sniff.Processed with VSCO with c1 preset

 

Reason #21 – They are blessed by so many very special people who give so much, to help them grow, even as adults.  With the love and nurturing of special mentors, teachers and friends.  Their light will continue to grow, and they teach us how learning is life long, and continue to bless us all.JEN SEVEN 15941104_10210395838665984_6378777886148397850_n

So, if you happen to read this page, especially if a doctor has offered to “terminate” the life of your unborn child because they have 3 of the 21st Chromosome, think of these 21 reasons to say “Yes” to life.  I hope you can see how rich this baby’s life can be.  Don’t let anyone tell you otherwise.  We would never tell an athlete training for the Olympics that all the work isn’t worth it, would we?  People who have disabilities face incredible challenges, and they give great joy.  Just like YOU and ME.

 

Love from Jen, our nailpolish, jewelry thieving, fashion loving, shopping expert! Who knows how to be silly too. Just like………Processed with VSCO with c1 preset

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World Down Syndrome Day Happiness

This is one post that has left me perplexed.  Where do I begin?

I think I may write two posts for today.  The second will be about our Jen.  She is 34 and lives with Down Syndrome.  We joke that in heaven we will not be able to touch her toes.

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My first post?  Is not going to be about rockin’ any socks either.  Because I am just too rockin’ saddened, momma bear angered into a stupor of disbelief at what I read this afternoon.

For those of you who know our family, it has become very apparent over these past two years of struggling for Joseph (who is Autistic and does not have DS, but nonetheless, our experiences of the past few years with Joseph represent real lived encounters with a young adult who lives with a disability) ~ encountering repeated discriminatory, insurmountable barriers when it comes to accessing health care at various local community hospitals.

Today, I read the following words below.  These quotes are from the National Council on Disability, September 30, 2009 report entitled “The Current State of Health Care for People with Disabilities”

Health and Health Disparities Research

  • Dissonance is evident in the research goals and objectives of key agencies of the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH) between the longstanding public health goal of eliminating disability and disease and the emerging view fostered by the U.S. Surgeon General’s report “Call to Action To Improve the Health and Wellness of Persons with Disabilities” and Focus Area 6 in “Healthy People 2010,” which for the first time in public health parlance, defines disability as a demographic characteristic.
  • Much of the Federal research effort remains focused on disability and disease prevention rather than on improving access to, and quality of, health care for people with disabilities, reducing their incidence of secondary health problems, and promoting healthy living.
  • Here’s the link for the entire report for those who want to read more:  Disabilities and barriers to health care

Suddenly, quite a bit becomes clear.  There is a real reason that we are encountering the horrific state of medical care for adults who have disabilities, and the complete lack thereof.  It is because our government does not think they should be born.  Disabilities should be eliminated.

I am starting to feel like I live in a Sci-Fi movie, a very bad one.

Do you know that no one with Down Syndrome has been allowed to be born in Iceland for the past nine years?  Please, do not use your vacation dollars to see beautiful Iceland.  Knowing this news makes it not so beautiful at all.

Well, how about here in America?  Land of the Free Home of the Brave?  We are a strong people, hardy and come from great immigrant stock ready to meet life’s adversities, right?I wonder if we are losing our way as a people.  We scream for equality, but have no idea what the bandwagon is really all about before we jump on it. End discrimination?  There is NO. POPULATION. IN. AMERICA. THAT. SUFFERS. FROM. DISCRIMINATION. MORE.THAN. PEOPLE. (HEROES ACTUALLY.) WHO. LIVE. WITH. DISABILITIES. (hey, wordpress, where’s the yellow highlight button?)

  • Over 92% of prenatally diagnosed infants who have Down Syndrome are aborted.
  • Young couples pregnant with a pre-born baby diagnosed with Down Syndrome are pressured to “terminate” every single day in this country. (Believe me, I hear from them) (some of them are pressured to the very end of the pregnancy, not lying)
  • Unemployment rates for disabled adults is over 80% in some areas of the country.
  • Colleges don’t offer programs for them.
  • Towns don’t have housing for them.
  • Hospitals won’t admit them.
  • Public Transportation for them is a joke.  Non-existent in reality.
  • They are considered a liability instead of a blessing. (Ya, life is tough. Whose isn’t?)
  • Some people think they shouldn’t be allowed to live.
  • Some people think they shouldn’t be allowed to live. (just in case you read it too fast the first time)

Have you ever heard of Peter Singer?  I met him long ago, in the English book at the local junior college when our kids took classes there.  I had never heard of him before.  I wish I never had heard of him.  But that’s the idea.  Most people don’t know who he is, nor how quietly, stealthily he has been at work in a very important business.  Shaping minds.  Shaping opinions.  Of people who will be future leaders in this country.  Sound alarming? It is.

This man has been appointed as Ira W. DeCamp Professor of Bioethics in the University Center for Human Values at Princeton University.  Of course, there is no hidden government health goal (riiiiight) of social engineering the bright minds of students who will be future law makers, future doctors, lawyers, judges, hospital administrators, employers…  Somehow people who are intelligent should surely see a person born with a disability as, as, as.   All intelligent people’s thinking should be in line with enlightened and learned people like Peter Singer, right? I mean we do want to think of ourselves as highly educated, progressive thinkers, right? Well, read for yourself:

“Worlds most influential philosopher”

Need to read more?   Here are his own words, (because people will tell you that the person who wrote the above article must have misunderstood Mr. Singer’s teaching):

http://www.wnd.com/2015/04/princeton-prof-kill-severely-disabled-infants-under-obamacare/

Princeton University, can you please give someone of real intelligence, non-discriminatory compassion the job of Ira W. DeCamp Professor of Bioethics in the University Center for Human Values?
Or is this the kind of “BioEthics” you’ve always intended be taught at Princeton?  Here are few words from the professor himself:

definition of un-voluntary, in-voluntary euthanasia includes handicapped infants

Well. yes siree Bob, I think about now my good grandmother is about rolling over in her grave.  How the heck?  Does a man like this get a JOB, a real bonafide, paying job, a tenured professor at that (!!) (??) teaching such things to the impressionable, idealistic minds of American youth at one of our country’s most prestigious universities?

Princeton University, why are you allowing this?  Why, oh why would you hire such a man?

America, what are you going to do about it?

All discriminatory attitudes towards disabled people affects every one of them.   It affects their siblings, their parents and their grandparents.  Did you know there are more than 57 million people in the United States who live with disabilities. Oh wait, the government is working on that…….

And tonight, my little family, with all its warts, frustrations, lack of answers to such perplexing questions, will pray in a special way for Peter Singer, and any who thinks the American government should be in the business of making sure our country rids itself of handicapped citizens el pronto.

As we all sat in our Cinderella dresses, with hundreds of other people at the Gigi’s Playhouse “I Have a Voice” Gala last weekend, Nancy Gianni, founder, CEO and chief belief officer gave a heart rousing speech, and drove one truth home, “We are all one accident, one birth, one stroke, one fall off of a bike away from becoming different, or loving someone who is different….”

As just so I finish this post on a POSITIVE note, Heeeeeere’s NANCY!  give her a listen, then open your wallet. Donate to GiGi’s Playhouse today.  Tell them its for Jen Donnelly and all her friends!!! Support all these heroes who live with Down Syndrome, because (and please hear me, Mr. Peter Singer) IT. IS. THE. RIGHT. THING. TO. DO.   (oh, wordpress, need a yellow highlight button again…..)  Does anyone know right from wrong these days?

Support these heroes who live with special needs!!! Help their light to shine, help it to grow!!!  Please give to GiGi’s Playhouse today.

Nancy Gianni Founder and Inspiration, helping thousands of kids who live with Down Syndrome and their families

“Each of us has power to change the world.” Nancy Gianni

So what kind of world do we want for our children, and their children’s children?

I’d much rather our nation be a little poorer for having helped her own people, than a nation entirely poverty stricken for having killed off those deemed “unworthy”, “unproductive”, “too costly”,  or “inferior”.

I totally think “preventative” medicine, improving people’s life choices to achieve the best health possible is a noble goal, murder is not. (and you are pretty darn lucky I don’t start on the lack of access to fitness anything for people who live with disabilities.  I know. I know. Why bother.) (Heaven help us.)

Here’s to next year , that people will choose to do right, to be better, to be giving ~ so all of us can  have a better World Down Syndrome Day!!!

Maureen

 

 

 

 

Uncontrollable Happiness

As the Christmas season heads towards it’s closing, and New Year resolution ideas pop up more frequent than the stars, I have spent many an hour lost in thought, wondering about what this time of year really means.  When life is filled with suffering, grief;  how does one find joy at Christmas?

Certainly, to a child it is wonder and joy.  As a parent, nothing gives me greater joy than to foster an atmosphere of joy for the children; making memories filled with happiness to tuck into their hearts as they grow.

Christmas time can be a difficult time of year for some, perhaps many.

There is probably not a one of us who doesn’t know a family experiencing difficulties during what commercials and movies promote as the most festive, joyful time of year.  This year was not our most joyful.  In fact, it has been a very, very difficult Advent, Christmas, New Year included…..

We know others who are experiencing the same.  Difficulties, sorrows, life challenges can leave a person feeling the exact opposite of “merry”.   Loss of spouse, loss of children, loss of job, sickness, children problems, infertility, mental health issues, lack of family geographically or emotionally……..

The list goes on and on.

Now that I have a few years of life under my belt.  I am certain of two things.  Life is constantly changing.  Suffering is a natural part of life.

What to do?

Especially in our helplessness?  Our frailty?  Our weakness?

Give up control is the only answer that has come to my mind, and to my heart.

Our little Evelyn has really taken to the short animated version of “The Little Drummer Boy”

drummer-boy.

She has watched it over and over when she visits.  There was so much in that sweet story that touches deeply into the human heart.   In the story, Ben Haramed, a thief, vagabond, “wily old desert jackel” kidnaps Aaron, the little drummer boy and forces him to perform for the crowds. Ben Haramed believes riches will make him happy .

drummer-boy-ben-haramed

Ben Haramed thinks of how much money Aaron’s drumming and singing will make; breaking out in song, “I want to live like a rich man lives, with life in my control…….”

I always want to break out laughing at that point.  Right. Control.

What an illusion.  (Not to mention Ben Haramed’s using another for his own personal gain, his own selfish, hardened heart completely oblivious to Aaron’s grief and suffering)

When I was a child, my eyes were completely on the Little Drummer Boy.

Now?

It is all the adult players in the story who speak to my heart.

Certainly, it is a tragic story.  A deeply profound and beautiful story.  This year even more profound because we seem to be living so immersed in constant difficulties in more ways than just our Joseph.

There is no “present” that can take away the fact that there is suffering in this life.  Not for any of us.

As the story progresses, poor little Aaron.  His heart becomes spiritually ill, imprisoned by his own inner anger, bitterness, hate.  He is absent all joy, and cannot find peace in his deep distress.

When BaaBaa, the Little Drummer Boy’s sheep gets hit by a speeding cart (tragedy and helplessness) and is lying in the street, Aaron seeks help from one of the Three Wise Kings. “The kings, the kings.  They are wise, they can help BaaBaa.”  When Aaron asks for help he is dismayed by the king’s response, “He is close to death, I cannot save your little friend…..I am only a mortal king.  But there is One who is the King of kings. He can save your little friend.”

drummer-boy-baabaa

“I do not understand,” Aaron’s grieving heart replies.

“It is not necessary for you to understand. Go. Go to Him.”

“I do not have a gift to bring.”

“Go, look upon Him.”

With tears streaming from his face and heart, in anguish that is heartbreaking, Aaron carries his beloved lifeless friend to the Crib, to the One who could help.

drummer-boy-at-the-crib

I found myself meditating on the beauty of this beloved childhood story every time Evelyn would watch it.  “A little child shall lead” Isaiah 11:6

We are celebrating Epiphany now.  The story of the Three Kings.  They followed the star. What is our star?  The world is filled with all kinds of “guides”.  It is up to us to discern where the guides we are following are taking us, God will not violate our free will.  Are the ones we follow taking us closer to God and His Truth?  Or farther away?

The Three Wise Kings possessed endless worldly wealth.  They also possesed something more valuable than earthly wealth.  Their humility.  Their open hearts.  Hearts open, not to the false, nor their own stubborn wills, but to God.

There are so many, many false guides in the world in our time.  If we allow ourselves to follow those false guides out of a sick self-will, we will soon become as blind as the foolish souls we follow.  There is a lovely little prayer that Father John Hardon always encouraged us to pray, “Jesus, I believe, help me in my unbelief.  Jesus, I want to see, make me see.” 

What is the true meaning of Christmas?  The Incarnation.

God loving us so very much, he came to earth in suffering and poverty, humility and surrender.  The Star led the Three Wise Kings to Bethlehem, which in hebrew means “house of bread”.

It was a glorious night, a mystery.  There is nothing like suffering that leads us closer to the mystery of that Glorious night.  Suffering can become a star.  The means God uses to draw us closer to Him, away from all that is fleeting, false, even our own inordinate attachments.

It was suffering that brought Aaron to Him the night of the Incarnation.  It was God who accepted all the sorrow, bitterness and suffering that so enveloped Aaron’s entire being.   It was God who restored the peace and joy in Aaron’s  heart.

God revealed Himself to the shepherds, who most would think know nothing.  He revealed himself to the Three Wise Kings, who knew so much, but knew they did not know everything; so their hearts remained pure and open.  The minute we think we know it all, we close the doors of our hearts.

In the glory of the Christmas Mystery, He came to help us, to love us where all earthly love fails us.  He was laid in the manger, a place of food.  The manger made of wood.  I wonder, was that the very first “altar”.  His entire life led back to wood.  The wood of the Cross.

There, right there is where God wants me to bring my weary heart, helpless, anxious, sad, hopeless.  Just as I am.  Knowing nothing; seeking only to look upon Him.  He is the One who governs all, despite my obstinate heart, despite illness, handicaps and lost directions.

For the this New Year I have only one resolution.

To surrender my heart, to offer all that we are, all that we have, all that we do not have.  Give Him our hearts and our lives,  asking Him to be our guide and our Savior.

We offer our hearts in quiet stillness at the Crib, at the foot of the Cross.  At the crib, and cross, we find Blessed Mother; our Mother.  She so patiently waits for the broken hearted child.  She will take care of all we cannot, according to God’s Will,  in His time, and in His own way.

Surrender in the midst of darkness and suffering.  Sometimes, it is the only way we learn to turn our hearts towards God. That is a very great Christmas gift indeed.

Dear friends, I pray your Christmas time was filled with blessings, love and joy.  Even more, I pray that you find rest, a renewed strength for whatever difficulties you will face in life, through the intercession of Mary, whom God chose as our mother too.  May She intercede and be your guide, leading you in peace and joy, into the radiance of God’s Triumphant Love.

Last night at Mass, Father said we could never begin to comprehend the mystery of what takes place at every altar, at every Holy Mass.  When all that we offer enters into direct contact with God, where all is offered as a gift to God’s Divine Love.  There our hearts can be transformed, filled with Divine Love.  Father had such a quiet, sure, joy and awe as he said, “Do you ever notice?  That when we leave Mass, there is such a joy in us that was not in us when we first arrived?”

Yes, Father.

Even in the deepest sufferings, we can have peace and joy.  Not in false gods, nor false guides.  Only the pure love of surrender, in heroic childlikeness, offering every joy and sorrow of our lives to Him.  Relying on Him alone for strength and guidance.  Only in His care can we live life to its fullest, in joy and peace. We can let suffering, handicap, loss, disease, hardship rule and break our hearts and darken our lives, or not.

I don’t want a bitter heart.  I don’t want to follow wrong paths.  This means for me, only one choice.  To let go of all that is out of our control and give it to heaven.  But the best “gift” of all is that God does not expect anything of us, and gives His Love so freely in return.  God’s radiant triumphant love entered the world more than 2,000 years ago through His Son.

The smallest One lying in the crib.

drummer-boy-and-the-star

Now I know I don’t have to have a New Year’s resolution that could vaporize before February!

We didn’t get cards sent this year, so we hope you know this greeting comes with love and so much gratitude to all of our family and friends, and we humbly continue to accept all prayers offered for our family; especially our Joe.

And we always pray for all of you!

Sweet Pea & Lace

Sweet Pea & Lace

Sweet Pea & Lace

Sweet Pea & Lace

Sweet Pea & Lace

Sweet Pea & Lace

Sweet Pea & Lace

Sweet Pea & Lace

Wishing you all a very blessed Happy New Year 2017!

Stolen Menu Happiness

  
The language of Autism. Sometimes. Often. A language of its own if we have the ears to listen; enough quiet in our own hearts to be perceptive 🔦💡💡💡; at times it is embedded in OCD’s 🔒🔑🔐🔓💥. And every once in a while, a great while, the thoughts of Joseph’s heart can shout. Out. Loud. 📢📣📢. Yep, took him to a new little pizza place in town. Tonight, a hidden (stolen) stash of these treasured babies fell out of one of Joseph’s piles. (Yes, he kind of smiled his quirky mischievous smile and laughed as they spilled to the ground!) (how could he? 😱😩😩😩😩😩😩😩). JOSEPH TRANSLATION: Mod Pizza is like MADLY DELISH PEOPLE!! Total YUM!!! You HAVE to try it!!!#autismspeaks #anotherForeignLanguageAtTimes #autismChallenges #HappenEveryDay #TheNeverEndingGameOfDeciphering #SpecialNeedsParenting #SpecialNeedsParentingAnOlympicEvent #WithoutGoldMedals #MODpizza #MODtober #BetJosephTookEverySingleOne #SoSorry #ButItMeansTheFoodIsFAB #ReviewByJoe 😱😇👍👍👍🍕🍕🍕👦😏😇🍕🍕🍕

Stolen Menu Happiness

  
The language of Autism. Sometimes. Often. A language of its own if we have the ears to listen; enough quiet in our own hearts to be perceptive 🔦💡💡💡; at times it is embedded in OCD’s 🔒🔑🔐🔓💥. And every once in a while, a great while, the thoughts of Joseph’s heart can shout. Out. Loud. 📢📣📢. Yep, took him to a new little pizza place in town. Tonight, a hidden (stolen) stash of these treasured babies fell out of one of Joseph’s piles. (Yes, he kind of smiled his quirky mischievous smile and laughed as they spilled to the ground!) (how could he? 😱😩😩😩😩😩😩😩). JOSEPH TRANSLATION: Mod Pizza is like MADLY DELISH PEOPLE!! Total YUM!!! You HAVE to try it!!!#autismspeaks #anotherForeignLanguageAtTimes #autismChallenges #HappenEveryDay #TheNeverEndingGameOfDeciphering #SpecialNeedsParenting #SpecialNeedsParentingAnOlympicEvent #WithoutGoldMedals #MODpizza #MODtober #BetJosephTookEverySingleOne #SoSorry #ButItMeansTheFoodIsFAB #ReviewByJoe 😱😇👍👍👍🍕🍕🍕👦😏😇🍕🍕🍕

Bottom of the Heap Happiness

Life.  

Can often be overwhelming in this house.  

There are days when every positive song that rises from my heart, is snuffed out by difficulties.

But tonight.

As I gave in to seeking solace in a freshly baked batch of our most favorite Fall Gingersnap cookie recipe.  God decided to spoil me with a little gift.

No.  It’s a BIG gift.

Kind of a miraculous gift. 

So miraculous I asked her to do it again.  I videotaped it on her Communication device to share with her teacher (Whom Bel adores!).

So stupendously miraculous, I asked her to show me a third time, so I could “capture” it on my phone.

Isabel has been home from school for a few days with a nasty cold, back on her inhaler.  She sat at the kitchen counter watching me make cookies while she self soothed playing playdough.  

After the dough was done, she begged to help. Together we rolled and dropped little balls of sugar coated comfort; the kitchen filled with Motown and delightful Fall breezes mingled with the heartwarming joy of ginger, cloves and cinnamon.

When the third tray popped out of the oven, Bellie giggled as I scooped the crispy chewy goodness from the cookie sheet to the cooling rack, keeping time to the music.  Not sure if I delighted more in the joy of baking or seeing that impish twinkle in Isabel’s eyes when she laughed.  And suddenly there was this……

My eyes filled with tears.

Take that Neurodegeneration With Brain Iron Accumulation.

Chronologically, she is 14.  Her diagnosis is degenerative.

Isabel keeps amazing many because she keeps progressing.  Tonight, she totally shocked me.  I count it all as rubbish all the sparkle we chase after sometimes.  For a child who should not have the ability to do what she does is a very real Nobel Prize worthy effort indeed.  My girl, you made quite a few of us surprised tonight.  God exalts the lowly; and to me this makes you a queen, little Isabel!! 

Or maybe it was just an unexpected side effect from her inhaler medication?? J.K.   Ha!! Not!  

I’m not going to look back at all the valleys of today.

I’m going to fall asleep thanking God.

For the gift of Isabel.

❤️

(Yes, she is already living in her costume for Halloween:). We are lucky it still fits from last year.  Because really, I’ve given up baking.  Almost.)

Fashion Show Happiness

I want my words with this post to be few because the pictures tell such a beautiful short story.

Early in the week we received an invitation to attend a fashion show at Gigi’s Playhouse.  Knowing how much our Little Jen loves clothes and shopping, it was an easy yes.

When the day arrived, it was Jen herself who brought the curling iron and my makeup bag, to help get ready for the party!   


Some days Jen gets tired so early, and it shows in behaviors that are difficult for everyone. We try to increase our singing and dancing to help make her smile. Despite her strong desire to go to the fashion show at Gigi’s, I was not sure we were going to make it.

“Jen Jen, are you too tired to go?”

Very often Jenny can be slow in responding. Not this day. 

“No, no, I not too tired.”

Our glam session went on…  

When we arrived, Jen was greeted with a beautiful open arms, and smiling faces all around.    

  
It’s pretty close to impossible for mere human words to fully capture what it’s like to enter into the incredible world of Gigi’s Playhouse.  Joy filled. Happy. Such a positive electric atmosphere. But most of all love.  LOVE that supports, embraces, accepts and encourages. Even though it can sometimes be a struggle to get her ready to go, including mornings when she verbalizes she does not want to go ( I know it’s just her tired side speaking)…..the minute she gets there, it is as if she has climbed to the peak of Mount Everest.     

 All the negative clouds vaporize.  There is a light that fills the atmosphere at GiGi’s Playhouse.  Jen’s eyes become radiant with joy. 

   It seems a little mysterious, but not really. The reason for this atmosphere of joy is very simple.  Coming together in community with our beautiful special peeps, we become enveloped in the majesty and beauty of God’s creation.  God does not make mistakes.  In his eyes, these children are perfect.    

These young adults who have Down Syndrome, their families, the incredible staff.  It is a great life gift to be blessed by the deep happiness of this place.     

 One more time, we think we are doing something for those the world considers handicapped, when it is really these incredible heroes who live with Down Syndrome who have so much to teach us!!

The Cabi Fashion Show was fantastic! 

  
    
 The models so beautiful….
   

 Thinking back of all my grumbling as Jen and I had left the house earlier, kind of along the lines of “I’m too old to keep doing this, Jen’s too tired at night, blah, blah, blah, blah blah……”

I think back to a beautiful quote from St John Paul II, (and he was wagging his finger in admonishment as he said it), “Sometimes, doing too much is called for.”

Yes, sometimes it is.

Thinking of Others Happiness 

Whenever we travel into the city, we encounter the homeless, the poor. What can we do to help? Pope Francis keeps trying to wake us up, encouraging us to shake off indifference and selfishness.   It always breaks my heart the way we walk past the homeless, often along the bustling city streets. I know we should not give them money.  We have given food before, at times many food items already piled by their side. Today we took a group of girls to Chicago, including a sweet friend from Germany. As we rode the train into the city, my dear friend, Julie was passing out Subway gift cards to the girls. I thought it was such a sweet gesture. Little did I know! As we reached the Magnificent Mile where the city was teeming with life, people by the tens of thousands, shops and restaurants, people of all kinds chatting, shopping bags on arms, happiness on this lovely sunny day….my friend’s daughter looked at her mom, to a nod of affirmation. I could hardly believe what I saw next as her daughter walked towards a homeless young man sitting on the first corner we approached. She greeted him. As he looked up, she gave him the gift card and a prayer card. I had never seen this before. I could hardly keep from crying for the beauty of it! That’s why Julie gave the girls all those gift cards!!! Of all the trips to the city I have ever taken, this is the most joyful thing we have ever done. The photo below was Bernadette giving her gift card away.  By far, the best of the day was when Julie and I slipped into a Chic-Fil-A to buy a few more cards to give out while the girls were sightseeing. As we came out the door of the restaurant there was a man feeding the pigeons. Julie approached him and the light of joy on his face was beyond description, “Oh WOW! Thank you!!!” And he fairly flew, almost skipping as he beelined for the restaurant door!  Such incredible happiness. At the same time mixed with such a deep sadness to think that a person could be so hungry while being virtually surrounded by opulence and fragrant breezes of delectable food coming from kitchens all along the street. I don’t think Julie and I will ever forget how much happiness such a little thing could bring to someone. No matter how great any difficulty we face, having food, a home, family, parents and relatives who truly love and care about us, really are great blessings that we should not just take for granted.  Are we even grateful for all these blessings?  Or would we cast them aside in exchange for living a life of “self” satisfaction?  I am riding the train home thinking of all the blessings we have, instead of getting stuck in any suffering. Today was just one more time we experienced the mystery of doing for others; we can feel deeply it is they who give us so much more. ❤️ Thank you, Zania, Jeff, and the other beautiful eyes that looked up at us today.  It was a very small bit of time, but the encounter was real.  There we met Christ suffering.  With one of the men we greeted today, I am convinced I was looking into the eyes of Christ.  I wish there were no such thing as homelessness, or hunger, or war.  But today, as insignificant as these little offerings were, I know all our hearts were touched; with joy, with really seeing each other, an exchange of hearts that interrupted all too briefly, the pain of being forgotten or uncared for.  Giving joy to others, thinking about others instead of being trapped in “self”, is the way to ease our own pain.  Funny how that works isn’t it?  When we are in pain, or suffering, it is in easing the pain of the other that we conquer the madness that serving “self” drives us into.  I get so tired of the siren song of our modern culture, falsely screaming that we will only be happy insisting on selfishness or self gratification.  That siren song is a lie, the dead-end path for those who choose it.  No, real happiness will only come in dying to self and putting others first.  That is the only way to get our lives back on the path of true peace and real joy.  We need courage to live contrary to the worldly mantra. 💝  I am especially grateful to have a dear friend who is such a great example of putting others before herself.  

Struggling to Surrender Happiness

This.  

  

This has been on the wall at the doctor’s office for as long as we have been going there.

Feeling “inadequate” could not begin to describe how I felt going into this appointment Monday.  Beyond helpless; smaller than small; perhaps even completely depleted and defeated would have hit the mark more accurately.  Heads swimming, lost in worry, face to ground.  Yep, there.  Face to the ground.  Lord, one. More. Cross.  

Those who know us well, know our Kevin has suffered from depression for years now.  Over the past few years a list of physical ailments were added to his resume.  Tests. Doctors. Medication after medication. More tests. Doctors puzzled, the downward momentum unchecked. More medications, more tests.  To no avail.  Watching someone dear slipping further and further away.  Nothing working.  Hope fading.

I suppose it is only natural that people’s spontaneous remarks in the realm of, “Well when you look at all your family has going on, with all those difficulties, of course he is the way he is…….” (As if my intellect was faulty for not having already come to the same enlightened conclusion)

Ouch.

Wait.  Other people can handle their crosses better?  Because we have more difficulties than many other families,  it’s only natural this should be the expected  outcome?  Seriously?  My mind finally gave in, that must be the explanation.  Giving up all hope became a given, my mind and heart began the arduous work of surrender.

How much I have been dragged close to despair with such hurtful observations.  

And suddenly, an answer.  A real answer. Just last week, after years of searching.  A real physical reason for decline.

The real kicker?

It isn’t just Kevin who is sick.

After a hunch based on helping our family through so many stormy seas with our special peeps, a good doctor recommended testing our family.  For Lyme disease.  To start, out of the whole family, five of us were tested.

All five.

Came.

Back.

Positive.

Even the doctor was surprised.

It has been a storm unlike all the others.  The more I read about it, the more devastated I feel.  Frightened. Helpless. So much they just don’t know.  So much about Lyme is not being acknowledged, even denied.  What will it mean for our family?  I can’t handle yet another medical hurricane.  

Yes, I know.  No choice. Just helpless. Small.

Monday, just a few days after getting the baffling news of test results, I drove to a doctor’s appointment. There is no way to describe the heartache of feeling so low, pretty much devastated with all of it; trying to absorb and accept, the diagnosis. Knowing we will need to have all our other beloved peeps tested.  I was living between the tension of needing to read everything I could get my hands on; and trying to pretend this couldn’t possibly be real.

God, what are You thinking?  Haven’t we had enough?  This could have such immense consequences for our children, their health, their families, their children….

If I let my thoughts run, even breathing became difficult.  God, if you are all knowing, You should know it is a mistake to think we can do this.  “Mother Mary, I am perishing, help me,” became a constant prayer.

It’s funny how little you know about something until it happens to you.  I have zero interest in becoming a Lyme Disease expert.  I think God intends for us to be Lyme PhD’s.  

How did this get missed?  For years? We have been to sooooo many doctors over these past few years with Kevin.  How did it get SO missed?

God’s Will.  Be still. 

It is what it is.  I have yelled at God quite a bit these past days all a blur.  Feeling anger, sorrow, and then more sorrow.  I have run away from it all, hopping on a train to the city with Bernadette, determined to fight all the grief with experiences of joy.  And it waits.  It is there.  There is no waking from a bad dream as I wish I could.

The day before we received our results, this article was published…

https://www.lymedisease.org/kristofferson-huffpo-parish/

And dang it, why did Sr Marie have to say it just days before the devastating news, “When God gives us suffering, we should not ask why, instead we should ask what for.”

There is the reassurance in my heart that we partially understand the “what for”. We will not fully know the answer until we die.  But, in all the darkness that seems to envelope us, there is the little glimmer of light.  God does have a reason.

So I pray for the grace to surrender.
I think of the scene in the movie of “Mother Teresa”.  She is sitting on the floor in front of the Tabernacle, talking to Jesus in the Blessed Sacrament (suffering from so much, with no apparent understanding of why God wanted her to suffer all these things). “Lord, if it pleases you…..”  

Offering up her suffering as a gift to God.  This was how she dealt with it.  So simple.  But I am no Mother Teresa, so the inner struggle is fierce.  

But none of the above is the reason I am writing this post.

I am writing because as I read more and more about Lyme disease, I am alarmed by one fact.  Many, if not most, doctors do not  know much about it.  It is strangely very, very, VERY frequently MISdiagnosed.  Kevin isn’t alone; I don’t really have Fibromyalgia…..we both have Lyme.  If you, or someone you love deals with depression, Lupus, Fibromyalgia, Arthritis,  MS, sleep disturbance, aching joints, lethargy, headaches, Alzheimers symptoms, ADHD, memory issues, mood and/or anger outbursts,  balance problems, or any Auto Immune (check the Mayo Clinic Lyme page) issues at all……get PROPER screening for Lyme Disease with the Western Blot and ELISA.  And it’s very important to find a Lyme literate physician.  

For more information, brochures and even an online screening checklist go to lymedisease.org

As a Mom, it’s always been important that our kids don’t become complainers, so all these months when we’ve been reassuring our youngest, Bernadette, that her aching knees were “growing pains”, we could never, in a million, not in a billion years, have ever guessed it was something so sinister as Lyme disease.  Only now are we discovering that in pediatric cases, Lyme often begins with joint pain (if there was no obvious tick bite and rash).

Did you know that more than 75% of Lyme patients never had an obvious tick bite or rash?  Neither did we.  After all, Lyme was something we thought was an Eastern Coast disease…..

Back to that sign in the doctor’s office.  How often on the rough days do I remind the children, “You are a child of God”.  I sure didn’t feel that way that day as I drove to that appointment.  I read Nelson Mandella’s words as I have more than a few times. “We were born to manifest the glory of God that is within us.”  

That day it was as if any “glory” surely was NOT within me.

Yet reading it reminded me of something my dear friend Jeannie always used to say, “God can bring good out of everything.  We must hold on to that.” 

Remembering that brought peace to my heart.  I know it will be a long time to process this new news, and most likely it will be a long and winding journey.  I pray God will use it for good, and only He can use it for His glory.

Pray for us, friends.  Pray for us.