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.
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…..
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!