Monthly Archives: May 2017

VII. There is No Protocol For This

As the days pass and we creep closer to Placement Day, I am discovering that there is no protocol for telling the world that your child is entering residential care, permanently. How exactly does one go about this? Do I make an official announcement to the Bishop and Relief Society President? Do I post about it?

This is all very new and weird and uncharted. And not only for me, apparently. I asked the pediatrician if he has ever had one of his patients enter residential care before. He hasn’t, until Jack.

My mother-in-law wondered, astutely, if Jeff and I might face PTSD after the placement and as we try to move forward. “You’ve lived in crisis for so long,” she said. When that constant, heightened state of anxiety and stress changes, how will our psyches respond?

The answer is not yet clear.

(Now I’m going to do what I tell my writing students to never do, meaning drop a cliché, unironically). Here goes:

Time will tell.

Clearly the only thing to do is give it time. Wait and see (there I go again).

Meanwhile, I want to plan that Disneyland trip I have longed to do with the boys since always. I don’t care if Disneyland is crowded and exhausting and corporate and cliched. It is the symbol of “normal family” vacationing, which for us has been unreachable, and I want to take my boys there and make memories not associated with violence or limitations. It might feel like a victory.

Jeff and I have goals for working with our other guys on some things that have been neglected in the name of survival. Things like trying more foods and reading.

And we are going to do something terrific for our twentieth wedding anniversary this year.

All of this will take time, and I’m not in any hurry.

Naps will be called for.

Grieving doesn’t stop overnight, I am told. I am going to have to demand patience with myself, and others’ patience with me. I will need to allow myself space to feel awkward about our new life.

Perhaps I will post about this unlikely journey. I’ll do it If God tells me to, which would be the only scenario in which I could stomach the Judgy Judgertons of the world taking note and weighing in.

“Don’t blog about it if you don’t want people to know,” ye olde Judgy McSmackfaces might contest. But they, bless their blackened hearts, aren’t in the arena.

Anyone inclined to condemn this decision hasn’t lived our life for the last thirteen years, and therefore knows nothing (Jon Snow). They haven’t been privy to the steady conduit of revelation that has accompanied the trauma, and which has featured God leading us through all the trials to this point.

I talked to Fred and Shirley before sacrament meeting today. They were astonished at the speed at which everything is happening. “We held on so tightly, for so long in an impossible situation because what else could we do?” I told them. “And then everything boiled over/reared up/came to a head and we said, ‘Here Lord. Take it. We hand all of it to You. We Need You.'”

In a classic Shirley response, she countered, “And He probably said, ‘It’s about time.'” This is why I love her. She’s the embodiment of honesty.

But truthfully, I don’t know if God was waiting for us to turn it over to Him. I have been praying for years for clarity and direction ALL THE TIME with what He would have us do for Jack. And, miraculously, I always got an answer, albeit a temporary one. We always found our way to the next step, the next not-permanent solution. We always had just enough strength to get through whatever fresh hell we faced at that moment to find a bit of relief in the next medication or the next caregiver or the next behavior intervention. These were stopgaps, but I suspect they weren’t designed to last. They were bridges across the chasms. They were bringing us to this point.

The Spirit told me, this spring and not before, that this is the right time for Jack to be settled in a new place where his care will be consistent, and where his needs will be met. I try not to argue with the Spirit. If the Holy Ghost says it’s the right time, then it is clearly the right time.

When you know that God created you and your family and the world you live in, when you know He loves you because He sent Jesus to be with you through all of it, and that He wants to help you and He always HAS helped you, then you (meaning me) trust His timing and His vision. The End.

 

VI. Resilience

I am reaching the tail end of my grading-palooza. Eight research papers left and then FREEDOM.

But I am pausing to note that I encountered yet another divine moment, even as I graded papers. I know. It’s true that miracles can come in any form, even the researched argument of a student who basically stopped attending class the last third of the semester.

She wrote about the research that is being done on the psychology of shame and it’s relation to vulnerability and resiliency. Of course, there was much talk of Brene Brown, who is driving lots of this popular work. Everybody loves Brene Brown, including me. I’ve heard of her books and research and her ideas, but the things she writes about have never resonated as deeply as they did today when I inhaled this student essay.

The paper that my student submitted, I am convinced, was written just for me.

She also wrote it beautifully, which really helped the ideas go down nice and smooth. I was reading with a critical eye and a figurative red Sharpie (no actual red Sharpies are used in the grading of electronically-submitted papers, fyi).

I recognized in my recent circumstances that shame is totally at play. Costco shamed me. The KSL commenters shamed me. Recognizing that Jack needs permanent residential care shamed me. Realizing over and over again that my life is always going to be vastly different than I imagined it would has felt like shame.

My student’s paper drew from a number of other researchers in addition to Brene Brown, whose work similarly focuses on the topic of shame and its potential to bring us to a place of familiarity with vulnerability, WHICH LEADS TO RESILIENCE.

Guys, this is what I needed to hear!

Shame, according to these academic women, is a valuable, positive emotion which leads us from a place of humility and self-evaluation, to deeper emotional connections which result in healing through emotional rebuilding.

Shame is a good place for a turning point. It invites us to take a good, hard look at ourselves and evaluate what is happening. It’s an emotion that gives us the chance to forgive ourselves and become stronger as we move away from being vulnerable, to using vulnerability as a tool. Brown calls it armor.

I write from the most painfully tender place, which is parenting my sons. It hurts more, I believe, when people condemn us for the things we are devoting our entire lives and hearts to.

Being honest in this place and sharing my life’s hard lessons on the internet has opened me up to scrutiny and sometimes criticism (being vulnerable). But in doing what I do with my writing, I also diffuse the pain of naysayers by owning my struggle (using vulnerability).

And, when I share my hardest things and my purest lessons, it draws me closer to other people, whose own struggles don’t look much like my own necessarily, but who feel my pain because they have their own pain. Human relationships are critical for happiness. Employing vulnerability lets us connect with each other, understand each other, learn from each other, and love each other.

So thanks, Maddy L., for your terrific paper. Thanks Brene Brown et al, for being smart and amazing. And thanks, readers, for engaging with me in the complexities of a real life, and in this writing which embraces and explores these complexities.

I do not claim to have a regular life. I do not apologize for the differences in my family. If anything, the shame and hardship have brought me the ability to be vulnerable and thus, resilient.

Connection and resilience are the gifts my travail has brought me.

V. Grace

Today was a better day. I think it might be because I have put all of my troubles on the figurative altar.

Jack’s well-being.

Jack’s chronic tonsillitis.

The hiccups with Jack’s placement.

The impending judgment of people when they hear of our decision.

My anguish at facing life without one of my young sons here in my home.

The transition from life in crisis to now what?

My remorse for the painful details of mortality in their dedicated imperfection.

All of these things have been weighing me down.

Today I tried giving it to the Savior, which is what He tells us he wants us to do.

Why don’t I automatically do this? Why do I hold on to my worst pain and then wish it wouldn’t hurt so much?

I think it’s because of the my will/His will thing. Humans are self-centered. We want things our way and we want them that way now. By “we,” I mean “I. It’s the natural woman/man. We (I) have a will and we (I) have opinions.

But truly, today has been so, so much better. It helped that it was clear and sunny and warm. But it wasn’t just the weather.

There have been even more issues cropping up with Jack, as well as my own fluctuating emotional state. I engaged with this miasma by envisioning myself piling all of it onto the altar (an altar; any old stylized altar. There is no actual altar at my house, people).

Here it is, Lord. Do what You will. I will accept it. I am completely dependent on You. I trust you, and please, take all of it. Help me manage ALL OF IT.

We are in a state of limbo. We are blind to the outcome of how all of this (our entire lives, really) will play out. We just don’t know.

But even in uncertainty, even in grief, I feel myself being sustained.

It’s counter-intuitive that we give Jesus our problems, and He gives us strength. And healing and forgiveness. I will never cease to be blown away by this—the economy of heaven. It makes absolutely no sense here on earth.

Hand over your heavy weights. Offer up your aching heart. Your life may not change, but you will change because of Jesus.

He will whisper peace that will cut through and subdue all of the chaos. Give Him your despair and He will take it and give you hope. And help. This is actually happening to me, so please know that I am not speaking in abstractions.

Oh, and He loves you. Perfectly. Deeply. So leave your weighted blanket of sadness with Him. He will wrap you instead with encompassing love.

I don’t understand it. It’s a powerful and beautiful force, grace.

 

IV. Everything Will Be Fine

I’m working through this inner struggle that looks like this:

On one hand, I don’t want Jack to be disabled. That’s the root of it.

I want him to live at home, with us. I want him to be a regular teen, with his charming, floppy hair. I want him to be his sweet self, but with words and the ability to live among us like a typical family. I want him to be able to go to Scouts and act like a nut with the rest of the deacons.

On the other hand, the reality is that he is disabled, and to a degree that precludes life continuing as it currently is. The Spirit has told us, more than once, that this change is what Jack needs, and that this is the right time.

So now things are changing in ways that aren’t comfortable for me.

The other day at Costco, I ran into my friend Jana. This was unusual, because she moved last year—she’s about an hour south, which is far enough that I never see her. She was in the frozen food section, and I told her what was happening with our family. When she heard about the series of miracles, she cried, right there next to the people buying dinosaur nuggets.

She told me about an insight one of her children had recently shared with her. He was thinking about patience, and how even Jesus had to exercise patience in waiting thirty long years to begin His ministry. It was what He had come to do, and still He had to be patient until the time was right. Jana then pointed out that her son had related this to the concept that all of us have to constantly work to subvert our will to God’s will.

The basic idea is that it doesn’t matter how great our plans are. Without God’s help and direction and strength, we aren’t going anywhere. It’s also the idea that God knows more than us and thus HAS BETTER PLANS THAN WE DO.

After this fortuitous conversation, which I recognize as another miracle (bumping into my spiritual mentor far from her town when I hadn’t even planned to stop at Costco but had to pick up emergency snacks for Jack’s class on a day when I was sad and adrift = miraculous), I have since thought much about the idea of my will versus God’s will.

I believe that the gap between what I wish could happen with Jack and what God is telling me needs to happen with Jack is the source of my angst and my sorrow.

I am conflicted, not because it is wrong (it’s right and I know it, even when I don’t want to know it), but because I’m still clinging to my own hopes and unfulfilled plans. I haven’t yet fully embraced God’s plan for Jack.

A few weeks ago, I went to the temple with Jack on my mind. The burden of not enough caregivers/the right kind of caregivers/inadequate support/etc. was smashing me. And as I sat there meditating, this cool breeze whispered through my mind, telling me that everything was going to be fine.

If I told myself everything was going to be fine, I would immediately contradict this notion with all the reasons why it wasn’t going to be fine. But when the spirit imprints it on your thoughts, there is no need to disagree. I felt it. Everything was going to be fine.

Everything is going to be fine.

So I’m holding on and conscientiously opening myself to the superior nature of God’s will.

It’s much better than mine.

 

III. Things That Are Keeping Me Upright

A) The musical number at church last week during sacrament meeting. My neighbors Talia and Ryan sang this angelic version of Where Can I Turn for Peace, which is a personal favorite. I’ve sung and played this hymn to myself probably 10,000 times over Jack’s lifespan. When they sang it, and my friend Kim accompanied them, I felt like angels were performing solely for my benefit. I closed my eyes and the four of us were the only ones in the chapel. The lyrics, penned by Emma Lou Thayne, are inspired. They are real. They are a lament and a prayer of thanks for Jesus.

“He answers silently/ reaches my reaching

in my Gethsemane, Savior and friend.”

I am reaching out and He is reaching back.

B) Then our Bishop spoke and poured some kind of a balm into my cracked heart. He talked about the handcart pioneers and related their deep physical suffering to the suffering of the enslaved people in the book of Mosiah whose heavy burdens persisted over a very long time, and yet which were eased by God, who gave them the strength to carry on. I have often felt that God was helping me to carry this heavy load that has pressed me down.

The Bishop talked about the people’s rescue from bondage, which came after much grief, and yet it happened literally overnight. When the time was right and they were chastened and humbled, God cleared a path for their deliverance and it was immediate. I have never before related this part of the story to my story. I’ve been stuck on the burdens/carrying on part. But when he spoke to the congregation, this voice in my mind said that this rescue applies to me too.

Eating has been difficult for me because I feel nauseous, of late. After hearing these words, I went home and ate dinner, and it tasted good.

C) People fasting and praying for us. Wow, I can’t even describe the strength I feel from this.

D) My sister Christina’s new baby daughter, Wren. She is the most beautiful baby and I feel that her birth has effectively reminded me that there is hope in the world, that things will get better, that life continues and is beautiful.

E) Jeff. He’s the only one, besides Jesus, who really knows. We have taken this path together. We have been toiling together these many years. He gets it and he is a huge comfort to me.

F) Spring. The leaves finally unfurled on the trees, right about the time I felt I would collapse from sorrow. They are basically exhaling life and beauty which I am inhaling deeply.

G) The gym. I’m going less frequently because issues, but when I am able to go, I honestly feel like I’m sweating out putrid stress. Endorphins, yo. They help a lot.

H) Books. My friend Emily Manwaring’s YA not-yet-published manuscript about teens in Wales held me rapt and took my mind off the heartache at hand. Now I’m reading Julie Berry’s All the Truth That’s in Me and again, for a time, I can forget about my sadness at the coming transition. It’s a beautifully written book about hard things. This is what I need in my life. Art mirroring life, with a side of escapism.

II. Hold On

We have made a decision on a group home. We are looking at a placement date two weeks out. Jeff and I have been learning a whole lot about the ins and outs of residential placement. I’m equal parts amazed and overwhelmed.

The thought of Jack living in another place with other people tramples every mothering instinct I have. He’s my red-headed squishy boy. In my mind, he’s still the tank of a toddler that I schlepped everywhere for soooo many years because a) he couldn’t walk for quite a long time, and then b) he would run off if I ever set him down.

He’s all freckles and curls and husky voice. He is my second son. How will I ever cope without him?

And yet, we aren’t coping with all of us under the same roof.

At church today I kept thinking, this is so not the life I envisioned for my family.

No one plans for this. No one wants it. No one holds their newborn babe in their arms and dreams about placing him in a group home when he is a preteen. It’s nobody’s ideal.

And yet, it’s what God is telling us to do because it is what Jack needs.

My friend Shirley told me that when the timing for something difficult is right, all guilt dissipates and there is clarity and an ability to move forward. Guilt comes from the father of all lies, and not from God. I’m so happy she told me this, because it is exactly the translucence I needed. Surprisingly, with all the emotions I’m cycling through on a daily basis, guilt isn’t one of them.

Weariness, depression, anxiety, and sadness—-yes. Totes yes. But guilt isn’t a factor.

My friend Sarah P. is well-acquainted with grief. She told me that thankfully, grief comes in waves, so it’s not always the same level of pain all the time. This is a perfect description (thanks, Sarah P.) and it gives me hope.

Yet underlying these waves of difficulty, there is an underlying peace through this strange journey (there’s that word we all love). I am amazed at how every step is falling into place. We began the process alone, but there is a great cast of characters around us helping, helping, helping. At every point of decision-making, it seems that God puts another helpful person right in front of me.

In Relief Society today, my friend Lisa slid next to me onto the piano bench as I played the prelude. “I know,” she said, giving me a knowing, loving look. She’s one of the first to know, and she did just exactly what I needed her to do. She told me it sounded like such a hard thing. It IS such a hard thing. She gave me a hug and her support without judgement and this is why I love her.

About a week ago, I had another of my really vivid dreams, right before waking up. I dream plenty of random, forgettable dreams, but this was one of my clearly symbolic dreams, etched with clear, descriptive detail. These are my instructive and meaningful dreams.

I was in an old neighborhood lined with mature trees. I was standing at the edge of the street, looking onto what I knew to be our home lot, though it didn’t look like where we currently live. I didn’t notice a house, but there was an enormous swimming pool. In the shallow end of the pool, sat a giant wooden sailboat. It was huge, with big canvas sails set, though there was no breeze. I saw that it was moored at a little dock in the pool.

What was this giant boat? It baffled me. It’s so big, I thought. It’s huge and yet completely familiar and super unwieldy and I don’t know what to do with it. I had this sense of being bothered that this big, beautiful boat was stuck in this little swimming pool when it had so much latent potential for something better.

In my dream, I then got into the water and began swimming in the deep end of the pool. The water was glorious. I swam down to the bottom of the pool, which was very deep. I looked up at the cloudy, pearly sky above the clear water, then I pushed off and kicked to the surface, which was much farther up than I expected. My lungs were burning. I needed air. “Keep going,” I thought. “Almost there.”

Just as the dream ended, I broke the surface of the water.

I told Jeff about my dream. I knew it was telling me something, but my befuddled mind couldn’t figure out what.

He decoded it instantly. “The boat is Jack,” he said. This instantly made sense.

“And the message of the dream is ‘hold on.'”

So that’s what I’m doing.

I. A Home is a Stepping Stone

I’ve started to write this post several times. They were false starts. It sounded like I was seeking validation and acceptance from the entire population of planet earth over what has been happening in my home recently. It felt like I was asking for permission to have the challenges we are having and for the choices we are making. This bothered me.

After the trauma and related fallout of the events of the past couple of months, I am disturbed by the niggling notion that not only is life in my house exceptionally hard, but we are also being watched and judged for the straight-forward manner in which we are coping with it.

I haven’t wanted to talk about the most recent issues, because a) I do not want to be judged for them and b) I am weary of feeling that I must apologize for my family’s life. This is the family that God gave us. We have massive issues, like everyone else’s families. Unlike many families though, our issues are 100% visible.

I have gotten over my fear of sharing what life is like for families of children with disabilities. Because God asked me to write about my life, I did it. I kept doing it, even when people asked me if it bothered me, all this public sharing about our hard, weird stuff.

“I’m over it,” I would respond to the question, meaning: it doesn’t bother me, telling people who we really are.

Then Costco happened and the ksl comments section nightmare wherein I learned what some people actually think about me and Jack. They don’t want us around. We are unacceptable. We scare them. We make their lives too uncomfortable.

This has all been very painful, but it’s not even the issue at hand.

THIS is the issue at hand:

We have been working for some time to find a residential placement for Jack.

We are moving forward with residential care, meaning a group home.

This is our new reality.

If you find yourself reacting to this development with any of the following, please know that you are entitled to your opinions (yay, opinions!), but feel free to NOT share them with me, xoxo:

*Things you might be thinking about our decision*

  1. They should have done it a long time ago.
  2. How disappointing. I can’t believe they are doing that. 
  3. I would never do that.
  4. What a nightmare.

In the spirit of full disclosure, I have also been thinking all of these same sentiments to myself, repeatedly over many years.

We were told to expect the approval process to take a long time, possibly many months. We have been gathering doctor’s letters, as well as behavioral data from the school, the behaviorist, and other caregivers. We documented all the aggression, injury, violence, and destruction that has happened within our home.

It was a pretty desolate feeling, seeing the trauma of our lives summed up all together like that. I sent it to Jack’s support coordinator and our attorney and they both responded immediately, dumbfounded at the crisis level in which we have been living for so long.

I read through the list of dangerous behaviors after I wrote it and had two thoughts. First, how are we still alive? Then, as I was mulling that over, a voice that wasn’t mine said, “All of these things happened so that Jack will be approved for the care he needs.”

That was the first divine moment in this process.

We pressed on, gathering documentation and expert corroboration. We began looking at possible placements.

I grieved.

Since we made the decision to pursue residential care, I have felt peaceful. Jeff and I know it’s the right step, the next step in Jack’s life trajectory as the Spirit told me three years ago in my car on the side of the road after Jack almost killed me and his little brothers.

The Spirit also said (after my thoughts immediately went to my failure as a parent) that this is simply the next step for Jack on his journey through mortality. Probably the most important part of this silent exchange happened next when I heard, “It will be alright,” and was flooded with peace.

That’s what I’m holding onto now. I feel peace, but also grief. The rightness and necessity of something doesn’t preclude pain and suffering. Jesus’s sacrifice on the cross was right and necessary, and yet how He suffered.

Our support coordinator completed the request for residential care over a weekend, texting me throughout church one Sunday to ask me detailed questions about Jack’s medications, sleeping patterns, behavior outbursts, and difficulty keeping respite workers. She submitted the request Sunday evening.

It was approved at 7:00 am the next morning.

That’s the next miracle.

Our astonished support coordinator called me, rendered basically speechless by this development. She has never seen an approval happen like this—instantaneously. It just doesn’t happen.

God loves Jack and wants him to have the help he needs.

We are now at the point of securing his placement. It’s a tricky process, even when you have months to prepare for it. Since the approval happened so fast, we are all a little stunned. But, fortuitously, we have two possibilities that are both nearby and both good options for Jack. We are considering them and will decide soon.

My brain is working in overdrive. I’m having a lot of thoughts, including these:

*I am still Jack’s mother. We are still his family.

*We will still see him and love him.

*Jack will do better and behave better when he has the right (one-on-one, male-staffed, continuous) care.

*This must be what the scriptures mean when they say “O Lord, wilt thou make my path straight before me! Wilt thou not place a stumbling block in my way—but that thou wouldst clear my way before me, and hedge not up my way.”

*Not only is the way NOT hedged up, it appears to have been pruned, plowed, paved, painted, and greased so that we can straight up glide forward, finding the things Jack needs.

*Jesus knows how we feel. He knows how Jack feels, living in a body with an imperfect mind and the inability to speak. He knows how to help us in our time of need. He IS helping us in our time of need.

*Life on earth is a temporary state, completely filled with sound and fury (wow. yes), but thankfully it’s not our forever state. Jack is living a subdued existence that doesn’t define who he really is. Thanks to Jesus, Jack will be restored. Hallelujah.

*The group home is a stepping stone. Our home is a stepping stone. Our parents homes, Jeff’s mission apartments, our college rentals and first Sugarhouse bungalow, our one-day assisted-living homes—all of these are stepping stones from spiritual infancy back to our real home with Father and Mother in Heaven.

But we are not there yet. This is where we are and this is what is happening.

God is clearing the way before us.