Fashion Show Happiness

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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 are filled 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 HappinessΒ 

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. πŸ’  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.

   
 

Hidden Happiness

Seizures. 

 Totally.  

HATE seizures……….just when everyone was asleep. That awful sound when he goes down, that jolts you out of sleep just as you were dozing off. When you get to him that dang seizure is full blown. Awful. Helpless. We are here Joe. You’re ok buddy. Blood streams from his mouth. Slowly it starts to subside. We try our most soothing words. Breathing for him it feels. Now Joseph is sleeping. Tears are shed. Prayers are said. The house is quiet again. 

 But I cannot sleep. 

 I know all of us moms go through tough times with our kids, but sometimes doesn’t it make you beyond sad to see your kids suffer?  

Then I think of Blessed Mother.  I know that God is in charge, even in charge of seizures. There is a purpose to these difficulties. God will bring good out of all. Times like this make you feel like Abraham ️taking Isaac up the mountain. We need to surrender, and trust.

Think I’ll read more Bishop Barron……..Here’s the one I was reading at the end of today:

http://www.wordonfire.org/resources/article/bill-nye-is-not-the-philosophy-guy/5124/
   
    
    
 

Birthing a Baby Happiness

Oh my! Why do people NOT talk about POSTPARTUM hormones!

I am being hit hard!  “Hit by a truck” hard.

Mistakenly thought we were going to breeze right through it.

Then go home.

Yep, expected baby would be born, we would resume our unusual usual days and that would be it.  Life back to usual.

Um.

N.O.T.

No soul could ever be unchanged after childbirth.  Dare I say, especially when it is someone else’s labor.

Consider this a forewarning all you mommas out there.  The birth that might rock your world the most?  Just might be when the babies you birthed……give birth.

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I had no idea what a powerful experience this birth would be.  Left my heart so overflowing I can hardly think straight. Oh, brother.  So did not expect this!

The baby is fine.  Stunning actually.

But I am forever changed……

This birth.

Would be different from all others.

The birth of Eleanor.

No one prepared me for the beauty. I have gained an entirely new admiration for how much mothers bless the world when they go through childbirth.

Eleanor’s birth has left me a different person, a different mother.  The reality is, the entire experience is one of those life events that leaves a mom feeling like Moses coming down from the mountain with his hair transformed into that windblown grey with white streaks coiffure,  his eyes lit with the brilliance and radiant light of God’s glory!!!  (stop laughing)

It began at the end of the day. Babies do not yet know how tired moms and dads can be at the end of the day.

It was about 9:30 PM when we Maggie texted us ~ contractions were 3 minutes apart.  (Say WHAT???)

Less than five minutes later, she also texted that she thought Charlie should call the doctor.

I instantly agreed.  Those few words in her text, “about 3 minutes apart” and the fact that two of Maggie’s siblings had actually been born so fast they beat the doctor…….made me skip taking a shower.  Plan A (that the older kids would go to Maggie and Charlies and bring Evelyn back here, give me the car to go to help during the birth) was instantly cancelled. If there is only one thing I have learned in all my mothering of over 33 years, it is that Babies oftentimes have their own personal birth plans.  Yep, the difference between parental dreams, plans and aspirations and the child’s version?  That clash (battle, butting of heads, control freaks most challenging life lesson to learn) pretty much starts at conception. (when will we ever learn?!!!)

Plan A became history.

Instead it was a hurried grab for just a few things, Fr Kentenich’s relic for Maggie, and a mad dash to the car for mom, Bernadette and Agnes.  Geesh, the electricity in the air was so intense, We prayed, we planned.  Mom advice was torrential.  Above all, we talked about how we would need to check the excitement at the door and enter Charles and Maggie’s house with calm, quiet, peacefulness.  Calm.  Calm?  Bleh!  Blessed Mother, yikes!  I practiced my cleansing breathes.  Oh wait, its Maggie who is labor.  Gah, settle down Maureen, and pray again for God to give us the grace to be calm for Maggie and Charlie’s sake.  It was definitely a time to pray for the grace to be calm…….

It is pretty darn perplexing that one can birth babies, many babies; go through multiple miscarriages and birth of a baby God calls home the same day she is born…..Yep, hold God’s hand through all of those precious mysteries ~ and feel so unprepared to be with a beautiful daughter and her husband as they welcome their new little girl into this world. For days I had wondered how best to help Charlie and Maggie when they were in labor.  I felt completely lost for concrete ideas.  “What should I do?” “I’ll stand quietly in the corner,” I thought. “I’ll be their photographer.” “If it’s a long labor, I can wait on them, offer them food.” It was none of the above. I wasn’t lost at all. Just in a different place in the miracle of birth.  A very beautiful place.

(When Charlie and Maggie had their first baby, it was your standard million hours of labor AND we were at Mayo Clinic with Sam for his Heart Catheterization.) 

Truly it was a night of a miraculous birth.  God blessing the world with the gift of life….

God granted us the grace of inner calm and stillness of heart as we were blessed to enter into that night that will be forever etched into our hearts.  The birth of Eleanor.

Thinking back on the sacred beauty and radiance of those hours, it was like a dance. A very mysterious beautiful dance.

Awkward and painful.

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Overwhelming, grit, doubt.

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Determination, sorrow, struggle, offerings to heaven.

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Pain and comfort, intimate real love.

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Pain that became shadows dancing…a heroic husband’s love enveloping a young mother during even the most difficult steps.  His words of wisdom and yes, even humor.  What a gift his crack-up sense of humor is.  His timing always broke through the tension.  What a gift to have a husband who can make you laugh in the tough times.  His courage holding her up with his strength.  Love so pure….

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Suffering born with courage, pain “offered up” for many who are loved.

Sorrow.  Giving way to light.

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Joy, relief, breath. The breathing of a beautiful mother, with her cherished husband devotedly by her side even through some very rough terrain. The first cries of a babe in the quiet darkness of the night. These are the most holy and sacred of times.

Elation filled the air in the moment of Eleanor’s first breath.

I think there are few things in life as grand as indescribable joy breaking in after sorrow.

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It was relief of all worry she arrived safe and sound under the care of a loving, saintly physician.

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Erasing all of Maggie and Charlie’s pain.  (ok, Charlie, I see you rolling your eyes!) Eleanor.   A gift of God’s love through Maggie and Charlie.  A blessing for the world.

It is all a blur.  Such a beautiful blur.  Painted with the watercolors of The Masters hand and palette. It was birth.

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Moments so sacred and holy that all hearts who traveled the way of sorrow, were transformed and shining bright.

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It was a light reflected in the eyes of all blessed to welcome this very precious child. A gift so mysterious no monument or museum could ever display its majesty, essence or beauty. But it was there. I know. The light a new child brings to the world, the rarest of treasures more priceless than the world’s most precious gem….the priceless GIFT of life.

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As a dear friend’s father was being born to life in Eternity the very same day, this heaven sent sweet child blessed us all with her birth.

As I drove home close to dawn, how life with all of its mysteries of suffering and true joy filled my thoughts. Joy. Joy over her safe arrival. Joy in the pride of such a beautiful couple who were so champion the whole way of labor and birth. This is the kind of joy that can only be born of risk, challenge, trust in God, pain, sacrifice, suffering.  My joy also mixed with much gratitude, for the gift of a saintly doctor, whose father before him did the same…. came in the middle of the night to help those in need. A young couple welcoming a new child, with such a great man to see them safely through to the joy of birth.

As the doctor left in the wee hours of morning, and we all said our good-byes, it made my heart sing to hear Maggie remind the doctor, “Your dad delivered me”.  Moments like that?  A peace and joy the world could never take away…..

At the end of life, I wonder if we will look back and see that these were the most important times of our lives. I wonder.  Will all other achievements of my life pale in comparison?   #MyHeartOverflowsWithGratitude 

 

“Sunday Funnies” Happiness

Bought a long black dress for the Gala for Jen. Found it on sale for $8 at Target Online. Not sparkly enough for Jen. In the end, we ended up buying an evening gown for her because the Target dress simply was not formal enough. For the past two weeks I could not figure out where that Target looooong black dress went………..

Until today.

Jen, did you cut your dress?

“Yes, a like it?”

Yes Jen, it’s beautiful.

(Three inches too short to be rescued in the back though:))

Suddenly, music filled the room. “Let it go, let it go……”

 

3-21 Happiness

This Lent has really been Lent. A year we did not have to think of more sacrifices to “offer up”. Just to surrender our hearts as best we could, with Childlike Heroic trust in His plan. Tomorrow we will attend funeral services for a very special young woman who lived with Down Syndrome. Today, on Good Friday I could not help but meditate upon the fact that this beautifully bright soul started her journey into Eternal Life on World Down Syndrome Day 3-21……Our Lord was crucified on Good Friday at Noon over two thousand years ago. He hung on the cross for three hours. 3-21 kept repeating itself in my heart all of this Holy Week, 3-21. I think of all our radiant children who live with Down Syndrome, they have 3 of the 21st Chromosome. 3-21. We have met and been blessed by so many truly authentic, kind and loving people who give so much to help our special peeps achieve a better life. 3-21…….. and I wonder, is that the time when Jesus’s friends took him off the cross. Just a simple thought that I have felt beating like a gentle whisper in my heart this week. 3-21. βž•πŸ’  

Leprechaun UNhappiness

After a bit of an application process, and driving 45 minutes away for interviews and testing at a county Department of Transportation office a few weeks back, we finally received a decision which was the cause of great joy around here.

First you get an award letter…..

 
Then a card follows in the mail…..  
 Jen and Joseph were BOTH approved for PACE bus service!!! HOOOOOORAY!!!!

So I called today to set Jen up for her days going to GiGi’s Playhouse……
I forgot it’s St. Patricks Day….
We’re sure the leprechauns have been busy at work this day when ye get the following response when trying to help ye young adults, heroes who live with  disabilities access thee local transportation…….

Ye needn’t wonder if ’tis indeed a fine trick ‘o the young green hooligans, for I can assure ye it tis!

Call for transportation I did.

Och! This twas the man’s reply ~

“Well, we’ll pick her up at your house and take her on a Pace bus to Good Shepherd Hospital where she’ll have to transfer to another Pace bus to that will take her to the Crystal Lake Train station; where she’ll transfer to another Pace bus that will take her to the Fox Lake Metra Station; where she’ll transfer to another Pace bus that will take her to the Hawthorne Woods Mall; and from there you’ll need to call the Cook County transit to see how they will proceed from there……..what time did she need to be in Hoffman Estates?”

Saddest part was, the young man telling me this was literally kind of laughing as he said it all………

So much for well run government.

And so much for paying property taxes……….

And all ye need for your precious child to gain independence and access to vocational training at her beloved GiGi U a mere 25 minutes south of home?? Disappears faster than a Pot-O-Gold on St. Paddys Day.