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.
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.”
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!!!!
Please feel free to leave a comment below, and at the top of this page there is a “Follow” button. I would like to cordially invite you to subscribe to “Under the Happiness Tree”!