Ativan and Lavender

Dear Friends,

I always think there will be a tiny snippet of time to sneak to the computer, and somehow squeeze in a couple of weekday posts. Not.

The whirlwind of life only picks up speed.

This past week was joyful. This past week was brutal. This past week was glorious.

The week started out joyful. We had a wonderful Art project to prepare a saint peg doll for a big exchange party.

 

  

The second joy of Monday was our deciding to give Dad a special “We Love You” dinner. Xavier helped me make homemade Chicken Kievs that actually turned out pretty spectacular, and tasty, thanks to Xavier’s genius prep work!

But we all know that all of life is not joy.  There is the good and the not so good.  The peaks and the valleys.  It is all a part of life.  And face it we must.

Brutal came after all that joy. Brutal so fierce it almost mocked all the joy of the previous days.

We live in a state that ranks 48, in terms of services for people who live with disabilities. Bottom line? Years and years on waiting lists. Paperwork that could at this point easily have wallpapered every room in this house. Appeals. More paperwork. More waiting. Applications for special equipment denied. Appealed. Denied. It means finding a black hole where services should be. It is kind of like a black hole that swallows hope in one gigantic gulp.

This past Wednesday, we met with the “team” for our Joseph. Well, not “we”. Me. This is all so hard on my husband that I worry he is reaching the breaking point. And honestly, I don’t even know what it looks like when a person has a nervous breakdown, but I think I was getting peeks of seeing it this week. Kevin provides so much of Joseph’s day-to-day care. Shaving him every morning. Getting his work clothes packed into Joe’s backpack. Getting him on the bus, and driving him to school on mornings when Joseph cannot get up at 5:30 due to medication issues. Tension in the air grows to the point that it was palpable. Kevin asks more than a few times, “Are you sure this is the best thing? Is this what we really want to do?” No, this isn’t what we really want to do. No, this is NOT what we want. But all school services will abruptly end as of Joseph’s next birthday, this coming June 16th. There are no offers of further programming. That’s it. The end. Zero services. NO job training that will continue. How does one describe the helplessness of parenting a young adult who has a significant intellectual impairment? It is agony. An agony we are feeling very painfully right now. I think because Kevin does a bit of driving during the day, he has more time to feel the pain. But he never expresses it in words. Pain fills the air. People act totally out of character. Like a lion with a thorn in its paw; there is lashing out for no reason. Pain. Not a lion, but still a thorn. In the heart of a father.

Wednesday morning was the absolute worst morning of our married life. I think that is why I was holding off, thinking it poor etiquette to write such a brutal, honest thing. But there is no sugar coating reality. My poor husband was planning on being at the meeting, but just a couple hours before the meeting, he fell apart. We fell apart.  How could we face no longer having our Joseph living with us?  Someone else taking care of him? Yes, that is enough to bring the strongest to their knees.  Sorrow too difficult to face.  What darkness.

I know the reason for his behaviors, yet in my weakness, I lack the ability to be compassionate in the moment…..all the pain is compounded.

What is the cause of all the sorrow that comes out with such ferocity? Losing a child. Not to death. But losing a child nonetheless. It is the loss of dreams and hopes. It is the pain of surrender. It is the sorrow of letting go. And it just plain stinks. There is no sorrow that can compare to looking up into the eyes of your beautiful boy, now grown into a man ~ as he tells you over, and over, and over, with every fiber of his five-year old mind, “I be good. I not want to go to a home.” Until, a mere ten minutes later when he is getting into mischief again. Then you don’t feel the sorrow, you just want to put him in a room and close the door. And so the roller coaster ride of parenting a disabled young adult goes on.

With all the twists and turns, the ups of him behaving good as gold, to the depths of him being totally out of sync and really acting in a way that defies description. Meds work. Meds don’t work. Keep on trying. Trying. If only we tried a little harder; if only we could keep our cool and patience when he is upsetting the entire house. If only we prayed more. If only seems endless. If only we could come out of this three-year nightmare since going on Topamax, the poison that altered him forever.

But when the day is done, there is one inescapable reality that breaks the heart of a parent. A river of sorrow that overtakes the the most stalwart of hearts………knowing that soon, there will be eight hours of the day with no alternatives, no continuum of programming after graduating High School. No bus continuing to arrive at our door ready to whisk Joe off to a star studded Young Adult Job Training program par excellence. Thoughts and dreams of our hard working Joe achieving employment will vaporize soon. When the nurturing of school district services end early this June, there is nothing.

There is ONE option. ONLY one.

Residential placement.

Talk about a feeling of helplessness.

The pain overpowers all that could be. All the dreams in our minds of what should be? It all crumbles to dust even while only a dream held in our hearts. There were times when we thought we could almost reach out and grasp at the promise of Joe being able to get a job. A real job. The harsh reality is that those dreams never came to be. No family should have to put a loved one in a home because of a lack of services. We totally understand that there may be families that prefer that route in the best interest of their family (and perhaps their sanity). But if a family wants to keep their family member with them, and needs more support services to do that, it should be their choice.

If I were a millionaire, I would build a little house on our property, let Joseph live there, and staff it 24/7. But we aren’t millionaires, therefore, reality.

Here in Illinois, if your loved one needs constant care, there is NO choice.

My heart breaks typing those words. Just. Breaks. It is in these moments when all of life bears down upon our hearts making us doubt all we know. There were moments when I shocked myself with tears pouring down, “Where are you God?” “There is no God! You are not there! You are NOT watching over us with tender care. There cannot be a God in all this sorrow.” I suffer from the brutality of such faithless thoughts. Did I really just say that out loud? Dear God, forgive me. I wrestle with God. I seek Him and He hides. I tell myself to pray more, I am too exhausted. I resort to just calling out to Jesus and Mary through the night, in my restless sleep.

When Wednesday’s team meeting was set up, it was with the intention of discussing options for residential placement for Joseph. People from three different agencies attend. They tell us the steps we will all need to take to move forward. They will send out a referral packet to many places. If any of the facilities have an available “bed”, and want to meet Joseph, we will go visit. So we move forward into the great unknown, darkness all around.

“Little children, little problems. Big children, big problems.” A dear friend first shared this wise priestly maxim with me many years ago. Now, we are beginning to live the reality of it. Stinks really. My Faith is too weak, really. Why does life have to be so hard? For me, the only answer is to throw myself into God’s arms. To let go; to trust. And it does not come easy to me. (I think I am at the doctorate level of control freak) Mother Mary, help us. Intercede for us. This I pray with every beat of my heart.

Our wise doctor once spoke at a conference saying, “Be kind to your children. Life is tough enough. Always be kind to your children.” Yep, doc, life is tough enough.

Life is tough when it doesn’t go well, when there is real suffering that you cannot change. I hang onto the example of the saints and others who shine as great examples of courage and strength in suffering. This past week, this video came to me:

Suddenly, our suffering is nothing. Jonathan’s courage inspires me. I cry watching him endure so much pain, I cry again when he shares that butterflies have the heart of a warrior. I cry again as I share this video with Kevin. I cry again as I share it with the other children. Jonathan is such a mighty warrior. What an incredibly full and healthy personality! Such a hero! What we live with seems so little in comparison.

It helps my heart just a little. The searing pain quiets enough to breath.

With Wednesday’s team meeting over, we were invited to the glorious part of the week. It was a little more than hard to savor and appreciate the good of all that followed. It was almost as if the pain of Wednesday still lingered enough to taint the beauty of all that followed. But we did our best to let go of yesterday to be present for the joys of a new day. Not so easy this week.

The children were asked to be greeters at the Prayer Vigil for Cardinal George, down at Holy Name Cathedral, downtown Chicago. For my friends who are Catholic, you know what an honor it is to be asked to participate in the Vigil for such a saintly man.

Kevin had taken the van in to have the brakes fixed, just in the nick of time, so we could drive downtown. NOT.

Late in the afternoon we learned the van would not be finished, because the day before while the van was at the mechanics, the wind had been so strong, it blew out an open window. Glass had shattered everywhere, and a new window would take a couple more days. YIKES! I was supposed to have the kids at Holy Name Cathedral at 4:00 AM Thursday morning.

Kevin called just in time to tell us that the man who was working on our other car, the Passat, offered to pay for a rental for up to five days while the Passat was being repaired. Geesh, if this all sounds confusing, it was! We called Enterprise here in town, only to be told, “I am so sorry, I just rented out our last available vehicle. I wish I could help you.” I pleaded, telling him we were supposed to go to Cardinal George’s Prayer Vigil down in the city. With kindness in his voice, he once again apologized, “I am so sorry, I wish I had another vehicle to give you; all I have is a passenger van…..” “We’ll take it!” (little did he know that this is exactly what we drove, a 15 passenger van!)

Cardinal George’s prayer vigil was indeed glorious. We got up at 2:30 am. Never has it been more difficult to pull my tired body out of bed! My legs felt like solid lead. But we did it, and the kids did fabulously!! There was a tremendous peace driving into the city so early in the morning. And I kid you not, when we plugged the address of the Cathedral into Mapquest, we got directions with an estimated travel time of 38 minutes! (during typical traffic it would be an hour and a quarter, at least!) Yep, never have I seen the expressways so empty; never before such a short trip into the city! Where I would typically be freaking out about all the crazy city drivers? They were all still in bed! Driving in was a breeze. Even though it was pitch black outside when we left home, the approach of morning was felt in the air.  There is such a sacredness to that feeling.  When we arrived, the news station vans were already setting up in the darkness of early morning twilight.  Security was tight.  There was such a peace…..

  

Cardinal George, pray for us.

In a spirit of reverence, pictures were not allowed during the vigil. Honestly, it was such a sacred atmosphere I wouldn’t want to take pictures. I was so very proud of Xavier and Agnes as they held vigil beside the Cardinal’s casket, standing with the Knights of Columbus for a half hour assigned time slot.  They looked so grown up.  Here before us was a man who lived a radiantly saintly life. He suffered much. He lived to help others to realize that there is meaning in suffering, that our suffering united with those of Christ could become a gift for others; that our suffering is not the end. In heaven every tear will be turned into joy………

At the end of the week was joy, pure joy! It was Jen’s Graduation from GiGi’s Playhouse – GiGi University Program!

Jen with Program director, Mary Jo and volunteer extraordinaire, Karen!

Jen receiving her diploma from mentor, Christine!

Jen with her sweet friend, Brian!

This photo is Jen with GiGi Playhouse founder, and mother of GiGi, Nancy Gianni! ❤

And thank goodness for our great organizing Homeschool mom who arranged for our group to go to the Marriott Lincolnshire Children’s Theatre so we could end the week with a little laughter going to see the play “The Princess and the Pea”. It was soooooo good to laugh after such a week! (Honestly, I was kind of surprised I still possessed the ability to laugh after a week like this!) (Really)

Have to tell you that as I was writing this post, Kevin just called me upstairs to help. Joseph is having such a rough night. My head is splitting from all we just went through with him; calling the doctor; giving more meds; talking him through all his anxiety for two straight hours; his never ending questions about when he will not be handicapped…..finally getting him quiet, and rubbing lavender on his palms. Finally, finally he stopped fighting sleep.

It all seems so complicated. It is all so simple, really. All we can do is let go; and turn him over to God. Yes, the joyful, the brutal and the glorious.

And when life is so overwhelming I see what the littlest children do. They go outside in the sunshine, spring breezes blowing so gently and pick flowers…..

I remember once, a very old and frail priest, whose being was lit with gentleness and kindness, pointing out the window and telling me, “Do you see all those beautiful trees?  God put them there to make you happy.  Look at them.  He wants you to be happy, and gave all these things so that you could have something beautiful to look at.  Just for you!”  And he smiled with such a sweet, holy smile.  It was a simple conversation with him that day.  His message has always remained with me.  And so, I went outside with Jen today, to enjoy what she had already gone outside to enjoy…… the trees just beginning to bud, the mesmerizing green of Spring, and many, many beautiful flowers…..

Friends, I hope you have a wonderful, wonderful week!

Maureen

3 Rays of Sunday Sunshine ~

It is the end of the day.

I look back and sigh.  Was this a Sunday?  In some ways yes, in some ways no.  At least not a Sunday in the ideal of my mind.

When I think of what a Sunday “should be” I think peaceful, restful, a time to go to Mass and bring all the endeavors of the week to put on the altar followed by rest and fellowship with friends.  I imagine Sunday rest, serene and peace filled, kind of like what I see in the photo above, taken long ago on a peaceful morning that was.

Today was anything but.  As a matter of fact the day started in the opposite direction of the picturesque scene above.  There isn’t a picture a person could take that could capture the bleak atmosphere of early hours of today.

I would like to introduce our Joseph.  The pics below are from Joseph’s good days, some from best days.  How do I describe the love I hold in my heart for this Stud Muffin?  How do I describe the anguish we all feel watching him just trying to be.

   

Joseph lives with Autistic Spectrum Disorder.  He had an incredibly wonderful ten or so years from the age of 10 to 20.  And then a doctor put him on a medication that not only rocked Joseph’s world, it sent our entire family into stormy seas.  For these three years we have done our very, very best to find the Land of Peace; the land where our Joseph doesn’t have to struggle living with himself on such a frequent basis.  We have found an incredible doctor whose compassion and caring has accompanied us along this journey.  We have finally, finally after all these years of month after month med changes, FINALLY found the right meds to make daytime so rocking awesome that Joseph can pretty much be himself.  But, there is that hour or more in the morning when his meds haven’t taken effect yet.  Today, was one of the worst ever.

It all sends me to the pits of such deep discouragement.  If any of you, my reader friends are prayerful people, please add our Joseph to your prayer list.   This morning Joseph was so in outer orbit, all of life was turned upside down.  As the morning wore on, suddenly there was a voice laughing into my ear, “You, you and your family inspiration? BWAAAA-HAAAA-HAAAAAA.   Give up now, quick.  Quit.  You need to quit!  YOU don’t belong blogging anything.  There is NO inspiration in this!!  You, YOU have no hope.”  I agreed.

But…….

As my dear sister said when we talked later in the morning, “That is exactly the reason you need to keep writing.”

So here I sit, at the end of the day thinking of the wee hours of early morning that were so tough for this guy that we had to call the police.   EVERYTHING about the entire morning felt so much like TOTAL FAILURE.  As Joseph kept getting more and more upset, striking out at the people he loves the most, I could only think, “Great, here we go……. on the roller coaster of horrendous Mental Health care for disabled adults.”  If you wanted to define the opposite of running to the joy of Disney World, this is it.  I kid you not!

     

Only Joseph can be so angry and upset with that mischievous twinkle in his eye and smiling as he verbally threatens you,  telling you (with that grin that makes you almost want to laugh, but not laugh) he will throw a shoe at you!!  Stinker!

These photos are from last November the last time we ventured into the abyss of NO MANS LAND.  This was our local hospital where we were told that they had closed their psych unit two years ago; no money you know. (No, I didn’t know. Not at all.)   And just in case you are looking at Joseph’s sweet face here, feeling so sad for him………let me tell you, anytime we got near to him, shoes were aimed right at our heads!  When you cannot use language to express your upset and anguish, you let your actions say it all, right? (and someone tell me please, how is it that he does not possess enough physical coordination to brush his own teeth, all the while he has NBA professional accuracy when he wants to throw something at someone, and hit the bullseye of your head every time??!!!)

After two entire days in that ER room and bed, Joseph was (reverently?) treated to a middle of the night transfer to another hospital.  Yep, took that long for them to “find a bed.”

Only problem was the first hospital did not fully disclose that Joseph has an intellectual impairment, and so the social worker at hospital #2 told me, “This is not an appropriate placement for Joe.”

Mom to the rescue, went to pick him up from that hospital thinking I would drive him to one of two possible choices we had learned would be a possibility after telephoning anyone in Chicagoland recommended to us.   Dumb idea, Mom.   Ended up having to call 911 while we were driving, Joseph was just too upset at going to anyone medical……..

Hospital #3, at last.  Breathe.

At last, we were at a place that we thought would help Joseph. Hospital #3 (November 2014)

NOT.  Hospital #3 said they wouldn’t take him either.  Finally, deep in the dark of night, an ambulance transfer to the ONLY hospital in the Chicago area willing to take him.  I cannot remember how many back to back Mother Theresa Novenas Sam and I prayed going into the city.  If every beat of my Mother’s Heart were prayer begging God to help us; then I prayed more than any mother.  Ever.  “Please God, send someone who can help our Joe.”

  Into the city following after our precious boy……

    Welcome?  REALLY?????????????

Is this just a bad dream?  Why can’t I wake up and make it stop.  Hospital #4 (November 2014)

After a week, Hospital #4 said they had to discharge Joseph because he said he wanted to go home.  They could only keep him if he were violent. REALLY??  Didn’t matter that his meds weren’t right, they had no choice.

Joseph came home.  We were so happy to have him home.  (Talk about a mother’s worry.  Geesh, leaving such a defenseless person entirely in the care of strangers is enough to test any mother’s heart.)  We were even happier that Kevin and I, now beyond exhausted, no longer had to take turns driving into the city to visit him every night. (5-9 pm the ONLY visiting time allowed) I think the whole experience had shaken Joseph quite a bit.  Coming home was a definite celebration, but also filled with trepidation.  What now?

All this precious guy asked over and over during his hospital stay was, “I be home for Kanksgiving, Mom?”

He was SO happy that night.  So happy to come home that cold November night in 2014.

Holding his newborn niece, Evelyn, the night Joe came home.

  

Gifts from Aunties and dearest friends.  (In the hospital Joe kept asking “Why people not send flowers?”  Yikes, we had to tell everyone to hold all gifts until getting home; we didn’t want him thinking a person goes to the hospital to get presents!!!!!!!)

Now, four months later, we are still making additional med changes trying to help Joseph be the best, most peaceful, most functional Joseph can be.

Are we there yet?  NO.  Are we getting there?  Hoping!  We are praying fervently that we will get Joseph back to HIS “normal”.  Mornings like today feel a lot like going backwards.  Hope seems to slip away when you are in the throngs of upset.  But at the end of today, in the depths of my mother’s heart I know God is here; I have to look back over the day to try to see where God was, in all the darkness, and in all the discouragement.   I think God has helped me to see 3 “Rays of Sunshine” this day.

#1 Whenever God sees fit to let a Sunday be as peaceful as that old photo at the beginning will only be in God’s Plan, in God’s Time and in God’s Way.  Being at peace, for me, means accepting the limitation that applies to all of us, and I am talking every. single. human being.  (Whether or not I want to admit it! It is a universal truth that no matter how much a person “plans” out their life — we WILL encounter times, circumstances, relationships, illnesses — over which we HAVE. NO. CONTROL.)  Peace, true inner peace will only come when I completely accept that I am not the one in control in so much of what comes my way in life.  “God’s Will.  Be still.”  This little prayer becomes one of my favorites the older I get!   The more I can surrender, the more I let go of my will, the less agitated I will be. I am at that crossroads again; surrender and acceptance, or the constant inner pain of being miserable.  Acceptance comes slow.  At the same time, letting go is a choice.

#2 Kevin and I may not be in control when these mornings happen, like I said in #1; BUT what we do have is the opportunity to take what God gives us and do our best (Hilarious thought that is!  This morning was pure darkness, nothing “best” about it.  It was just gut wrenching sorrow.  It was me feeling all our helplessness to the core of my being, like the blow of a chisel).  So what are we to do?  Ahhhhh, there is something I can do!  Do our best, no matter how ugly it may look, and offer that back to God as a gift!  I am so grateful that as part of my Catholic faith, I can take all of it.  And I mean ALL of it.  And offer it, united with the sufferings of Jesus at the point of the Consecration of the Mass.  It can become a gift…………….

#3 My sister called this morning, and listened, and listened, and listened. Support.  Lord, what have I ever done to deserve such an incredible kind, loving sister who I know really, really cares about Joseph?  Then, this afternoon, we had a meeting of a group of families.  Our Sam watched our special peeps so we could go.  In this group of families, we are all living that time in our lives when we are raising our children.  In sharing, we find we are not the only ones.  Every family is dealing with something; some difficulty that just is.  Something they might not ask for, but one that comes into their life.  Every family has a struggle of some kind.  And then we know we are not alone!  I came away hugged, listened to, filled in my heart by the love of the gift of precious friends, and family who care so deeply, and suffer along with us trying to help Joseph.  And how it filled my heart with so much gratitude to know their prayers may open a door somewhere (in God’s time and in God’s own way) where we can provide all that Joseph needs to live his life in as much joy as possible.  I always worry that by sharing all we are going through that I don’t want to be the Debbie-Downer always sharing hardship.  But these dear souls are brave enough, and ask, “How’s Joe?”  What a gift it is to have family and friends!  You are a Ray of God’s Love in the darkness.  You give us strength!  I am so grateful for every time I can share.  It isn’t easy to talk about things that aren’t easy in life.  I am grateful for every time a girlfriend hugs me and tells me they are still praying for Joe.  A praying friend is a friend indeed; a most precious friend.  What a beautiful ray of God’s love to be surrounded with family and friends who care!!

Dear friends, it is my hope and prayer for all of you tonight that your life, with whatever difficulties you are experiencing in your family, in your work, studies, in your own heart ~ that God blesses you with the Sunshine of His love so that you know He is right there, by your side.   Especially in suffering.  Suffering is such a mystery.  I know that I will never understand it completely in this world.  But there are some things I am sure of.  Suffering has purpose, has meaning and can even become a gift of love.  And I pray that you are as blessed as we are!  That you feel God’s love for you even in suffering.  I pray that you see how God loves you through the love of others.   Blessed by family and friends who hold you up, and obtain God’s strength for you by the gift of their prayers……

Good night my Joe.  My precious child who will always be a child…….

You are precious in my eyes.  And I love you.

   

IN THIS MARATHON CALLED LIFE, YOU MY JOE, ARE NUMBER 1!!!

YES, #1 IN GOD’S EYES!!!!

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Thank you!

Maureen