Monthly Archives: May 2017

Faith is a Force You Can Wield

Living with fear is the worst way to live, but it seems to be our default human state. Behold, my current fears:

*Now that Jack is in residential care, my family won’t be special anymore. We won’t retain the lessons we have learned through him. We might become worldly, prideful, un-discerning.

*Jack will be unhappy in his new home. He will feel abandoned.

*I will have nothing to offer other parents who are still in the thick of special needs parenting. I will lose my connection to them, my understanding of their world, my writing purpose.

I hate even voicing them. But naming the monsters can reduce their size and threat. It can remove the thorn from my foot and cast it off into the scrub oak, where it belongs.

Alternatively, thinking about one’s fears can also invite them to set up camp in one’s mind. I don’t want them to feel welcome. I don’t want to nurture them at the campfire of my inner self, feed them stew and bread, and tuck them into their bedrolls. I’d rather head them off at the pass, with a shotgun and some salty words.

I see you, my fears. I know you are there, you can’t hide from me, you lousy, unwelcome turds. Don’t think I’m going to let you in so you can take over my life. Go on now, git!

(When you are using a shotgun on a figurative mountain pass in the wilderness to fend off your fears, you naturally use words like “git”).

I often instruct my sons in strategies for minimizing, calming, and disempowering their many fears. I’m good at telling them how to do it. I’m less good at rushing to do it for myself.

This morning I listened to Ether chapter 12, which is filled with iconic scriptures about faith, strength, and weakness—all of which I’ve read and heard many times. But the words never before struck me like they did today, like a gong sending waves of vibrating sound through my spirit.

“I would show unto the world that faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith.

“For it was by faith that Christ showed himself unto our fathers, after he had risen from the dead; and he showed not himself unto them until after they had faith in him; wherefore, it must needs be that some had faith in him, for he showed himself not unto the world.

“But because of the faith of men he has shown himself unto the world, and glorified the name of the Father, and prepared a way that thereby others might be partakers of the heavenly gift, that they might hope for those things which they have not seen.

“Wherefore, ye may also have hope, and be partakers of the gift, if ye will but have faith” (Ether 12:6-9).

I thought about the last few years of parenting Jack as I listened to these words. I couldn’t stop the heartache and the suffering we experienced with Jack’s disabilities and his violent behaviors. I couldn’t change our dysfunctional life by myself. But things actually DID begin to change when I underwent my non-ironic spiritual journey fifteen months ago and figuratively turned my life and Jack’s life over to my Heavenly Father. We became “partakers of the heavenly gift.”

Before that time, I understood the idea of faith. But I hadn’t, before that point, 3-D printed it as it were, into a fully-realized concept that I practiced. Before, faith for me was vague, a nebulous Sunday School answer. Last spring, faith became a real force.

It materialized into something I could wield.

Faith isn’t born of weakness or a dismissal of science. It isn’t blind religious obedience or academic naivete.

Faith is the magnetism of divine power interfacing with our desire to believe God and believe that He will help us.

Faith is us knowing that Jesus loves us so much that He died to redeem us, and because He did and because we believe it, not only do we believe He is working for our good, we see it.

“For if there be no faith among the children of men God can do no miracle among them; wherefore, he showed not himself until after their faith” (Ether 12:12).

Here’s what I learned while I listened to these words this morning:

Faith is a real force.

There’s nothing wishful or vague or flimsy about it.

It’s the power through which God brings any good thing to fruition.

It’s not something that Christians made up. It’s the power underscoring all human life. It’s the reason we live on earth, with tragedy and hardship as our daily companions in this vale of tears (was there ever a more apt description? Answer: no).

Faith is the force which compelled us to choose life on earth, so we could grow as we demonstrated our faithfulness to God. Faith is what will bring us back to Him.

You guys, I know this because Jack is my son. Being his mother has never been easy. I have labored through sorrow these last thirteen years. But experiencing sorrow can bring discernment, clarifying what is good, valuable, vital.

Raising Jack has taught me that faith isn’t nebulous. It’s real and it’s our connection to God and to Jesus Christ.

Vacation Mode

I watched “The Notebook” today as I am in vacation-without-kids mode. I’ve never seen it before, and it seems to be this movie that people reference all the time as a quintessential romance film, so I felt it was time. What I found is that it’s just another Nicholas Sparks story, with a fairly high level of sap, predictability, and all the overused tropes. And yet, I watched the whole thing. By myself. On the center of the lovely king-sized bed, with no interruptions or outside demands. I didn’t love it, nor do I regret it.

A true vacation, from the mom demands.

My mind feels like it has gone somewhat dormant over the past week. I had been in such a high state of stress and grief for so long, with a ramping up of both to peak levels in recent months. Now, I feel a bit like my brain is floating in a dish, disconnected from everything around it. My mind is resting, I guess, along with my body.

I created a list of all the things I would like to do, now that my life isn’t so rigidly confined by Jack’s needs. But it seems a little daunting to me, at the moment. I’m still exhausted by grief, which inexplicably saps one’s energy. Even when you’re not actually doing anything, it’s nevertheless emotionally strenuous.

Exhibit A: I woke up late this morning, ate breakfast, and got back in bed where I promptly took a nap. I think it is my psyche allowing myself to be still and relaxed after years of hyper-focused attention on surviving. I’m not fighting it.

But there will come a day when hibernation won’t be enough. I’ll be ready for something more. I’ll grow bored of grief, maybe. I’ll need distraction. It will be time to dust off the list of pursuits and begin working at them.

For now, I’m not sure how my writing qualifies as “true stories in special-needs parenting,” unless we decide to embrace the grief part of disabilities parenting. It’s still the story of my life and my family’s life. It’s still being driven, to a large extent, by the needs of my children. But for the first time in a very long time, I do not feel that my life is tragically, painfully limited. I sense an opening, an expansiveness that was not there before. It couldn’t be there before. Jack needed structure, organization, routine, and boundaries. Those boundaries confined me, even as they reassured him.

In his new home, Jack finally has the intensive structure and constant level of care that he needs.

Meanwhile, the walls have fallen away from around me. I am open, and in a transitional state of preparing to see what comes next. I pray for Jack’s peace of mind and adjustment to his new surroundings, and I sort of wonder what God has in store for me, now that I’m not Jack’s caregiver. I’m not ready to start asking God for insights yet. But I’m open to possibilities. I feel unafraid of change, perhaps because all of it seems so much easier than what I was living before.

During the awful period leading up to Jack’s placement, I dreamed of a boat and a beach. They are beautiful and reassuring images to me. I’m holding them in my heart, which can mull them over while my brain is dormant in the dish.

 

How and Why

A few people have asked me how we made the decision to move forward with residential care for Jack. I guess it all seems kind of obvious to me (see: this whole blog for the last five and a half years), although maybe to people who aren’t living it, the tipping point isn’t obvious.

We always knew Jack would one day live in a group home, but we believed it would be when he was 18 years old and an adult. Most minors don’t live in residential settings. It’s less common.

As Jack’s behaviors became more difficult over the last three years, I often wondered to myself how we would possibly survive another 5, 6, 7 years until Jack turned 18 and we could make this change happen. I have lived in dread of Jack getting even bigger, taller, stronger, and fully entering the process of puberty. But we hunkered down and kept going, because there aren’t any other options when you are a parent.

In the past nine months, we have seen a steep decline in the availability of respite workers to help us with Jack. I simply didn’t have enough help. Jeff works sporadic hours, which are out of his control. He often works late into the evening, when I would be home alone with Jack and the two little boys, who, incidentally, also have autism. Henry, a teen, was usually at basketball practice or with friends.

In this setting, I was the only grown up managing all the people through the toxic witching hours, when Jack wanted all the food, all the attention, and all the rides in the car. If he didn’t get these things (and even when he did get them), he was violent and unpredictable. Many nights I texted Henry and said, “Please come home. I’m alone with Jack and the boys. He is losing it and I need help.”

And Henry, bless him, would come home.

A family member with disabilities makes people wise and compassionate beyond their years. It’s one of the perks.

The short version of the story is that for months, I was one woman caring for Jack and two other kids with autism, when the reality is that Jack requires one-on-one help at all times. If he doesn’t have the right kind of help (like a big, burley man), then truthfully he needs two people laser-focused on him. Without the right help, Jack was hurting me and his brothers at home, he was violent toward me in the car while I drove him to and from appointments, and he was destructive to property at home and school on a daily basis. And we can’t forget about Costco.

My ability to cope unraveled, and God began to point out to me that there actually was another way. I did more research into group homes. But I couldn’t comprehend turning over all care of my disabled son to other people: buying his groceries, filling his prescriptions, communicating with the school, taking him to his medical appointments. I felt it meant I was abdicating my job as his mother.

“We can’t do this,” I told Jeff.

A few weeks later, I took Jack to his psychiatrist appointment, where we discussed all the ongoing behavior problems resulting in a crisis-level home life. Dr. M said, in passing, something that went right to my heart. “When you’re ready to pursue residential care, and I sense that you’re not there yet, I will help you.”

These words were spoken casually and in the midst of a much larger conversation, and yet they plucked a chord within me. As it reverberated, the Spirit said, “Listen to her.”

But how do you change your life in such an extreme way? Answer: It has to grow so bad that you can’t continue as things currently are. Painful change is the only viable option. Every violent act, every near-catastrophe was a clear paving stone leading me to this thing that God knew Jack needed.

The promptings were subtle, as is the nature of the still, small voice.

It was hard for me to hear it amid the chaos. When I finally accepted that this decision had to be made, I made it. Then I asked God to tell me if it was the right thing. I’ve already written about how quickly Jack was approved, and the speed with which everything fell into place. After I brought up residential care with Jeff and he backed me in the decision, God took over and worked the miracles that made it happen.

At times, I am sad. I miss Jack. My family feels incomplete. My mothering muscle memory jerks, remembering the years of being on edge, always moving, always intercepting. I feel lost.

But since we decided to move forward with Jack’s group home, I have unequivocally felt that it is the right thing.

I also have not been left alone, even in this lonely, strange journey. I feel my Savior’s love both directly and through the many angel people who have reached out in many ways to ease my pain.

I believe that Jack is feeling this too, because Jesus loves him.

 

Calm Reassurance

Jack has had a hard couple of days. Or rather, the staff has had a hard time knowing what to do to help Jack. This is something I expected. He is pushing to see where the boundaries lie. He is also making his needs known. Jack needs constant input. This is one of the primary reasons we could not effectively care for him at home. Complacency with Jack will lead to no place good. One always must be at attention, preemptively heading off behaviors with a steady sensory diet and a basically exhausting daily schedule.

They asked me for ideas. I gave them a whole bunch. They said they will try all of them. God bless them.

Meanwhile at home, it’s the last full day of school. Summer is here. I feel no panic, as I have continuously felt all the previous summers. It feels a little like being released from some form of confinement. I do not mean to imply that life with Jack was a prison. It wasn’t, but it was highly regimented and, due to the nature of his disabilities, extremely limiting. And stressful.

Suddenly, summer is my oyster. We can do anything we want. The pressure that pushed at me from all sides for so long is gone. I can make a choice and then do that thing.

What does one do with this sort of freedom?

Also, what do I do with this feeling that because I’m not always in a heightened state of anxiety, I’m not doing enough?

The new normal isn’t normal yet.

One of my friends had a dream about my family a few days ago. I asked her if she would tell me about it because people who read my life’s saga know that I straight up believe that some dreams have a divine origin and a revelatory purpose. My own life and dreams have taught me this.

This is what she said:

It wasn’t a very long dream. I was walking with a lady. She was someone close to you and she knew the concerns of your heart. I knew that without her telling me that. We were communicating without talking. I don’t really know how to explain it all. Sometimes dreams are hard to put into words. We were walking on a raised wooden platform. This lady knew I had been thinking about you and she reassured me that everything was the way it should be and that there was no need to worry—it was a calm reassurance. It was almost like she was a “guide” assigned to you and she knew you as well as you know yourself. I’m not even sure why I dreamt that. I haven’t thought of you for a couple of days, the last time was when I read your blog. The first thing I thought of when I woke up was that dream. It was a simple dream but I felt a lot of peace and reassurance. The lady and I agreed that Jack was where he should be (not that any of that is my business, I know).

When I read her words, I felt like electrical impulses were running up and down my spine. I was awash in gratitude for this astonishing perspective from someone I know, but haven’t seen or talked to in quite some time, who is just good. Her goodness, I believe, let her be a messenger of peace for Jeff and me during this hard, emotional week.

While I struggle with my own sadness and with the loss I feel, I have never once felt that Jack is in the wrong place. When I think of his house in his new town, I feel a sense of complete rightness. My friend’s dream reassured us, as well as her.

I am also deeply touched thinking that I have a woman guide or guardian angel. I have sensed the presence, these last few weeks, of some of my female ancestors, simply being with me and lending strength. The thought of the women in my family who preceded me in their earthly sojourns, now being present and giving me support and encouragement is beautiful and miraculous. It makes me feel loved—stronger because of their love.

Adrift

I am adrift.

This description is figurative, but super accurate. I don’t know what to do with myself. The obvious answer is, take care of my other children. And myself, I guess. And go serve people, I KNOW. I’ll get there. But if you look past the obvious to my unmoored self, you’ll find that I don’t know what to do because all of my energies have gone to Jack’s needs for so long. There is a void there that can’t instantly be filled.

The other night after school, Henry left to ball with the guys and Charlie and Truman played in a neighbor’s backyard. Jeff was working late. I literally paced the kitchen for like two hours. I thought about reading or watching TV, but my mind couldn’t focus on anything. I paced because that’s what I’ve always done with Jack—walked around being available for whatever he needed. If I ever sat down, he pulled on my arm, asking me in his way to take him on a ride or help him get a snack. If I ever got distracted by engaging in a project like laundry or cooking, Jack would get into some mischief and I would have a big mess to clean up.

When you have been Jack’s shadow/helper/intermediary with the world and now you aren’t, there remains a sense of “I don’t know what to do anymore.”

After much pacing that evening, fyi, I got out the shop vac and cleaned out my car. It no longer looks like Jack has been shredding everyone’s important documents in the backseat. It’s pretty clean and has stayed pretty clean since then. That’s another difference. Also, we don’t have to lock everything up anymore. We don’t have to hide our toothbrushes. We don’t have to hide the vacuum. I wrapped a birthday present for someone today, and it’s safely sitting on the table. I didn’t have to hide it so Jack wouldn’t open it. I bought my favorite coconut almond protein bars that need refrigeration, and I didn’t have to hide them in the crisper, beneath the vegetables, from Jack, who likes to open such things and then stuff them between the couch cushions.

During school hours, I feel pretty calm. After school, despite all the boys being here and there, the house feels empty. When evening rolls around, the time I used to call “the witching hour,” when Jack was unsettled and anxious and shredding everything—this is when I feel sad. The house is calmer, but one of my children isn’t here.

Everything feels wrong. How can anything be right when Jacky is gone? Not only is he my son, he is the son who has required all my attention since always.

Since I don’t know what to do, I find myself turning frequently to social media, which isn’t a source of fulfillment for me. I’m trying to have a different default response, like reading a book, listening to a chapter from the Book of Mormon, or cleaning something. At some point, I hope God will tell me what I need to do to be of use to the world.

I still have children at home, but they do not need the same level of constant vigilance. Their needs are more sporadic. If I’m here managing from a distance and stepping in occasionally, we are in a state of equilibrium. I guess this is what parenting is like for a lot of people, but I am not accustomed to it.

This post does not have a great point or any fabulous insights. It’s me working through grief.

I guess this special needs parenting blog has become a grief blog. And a spirituality blog, but we already knew that.

Pain and Joy are Opposites

I have not wanted to write, because if I write, I have to feel. I am only now beginning to wake in the morning without feeling like I will die when I remember that Jack isn’t here in our home anymore. I can go periods of time without crying wherever I happen to be—in the car, in public, while looking at baby pictures of Jack. There are times when I feel pretty calm, grateful even, that we aren’t clenched in the vice of trying (unsuccessfully) to meet Jack’s needs while still meeting those of our other three sons.

I haven’t wanted to sit and relive the trauma of the last week by writing about it.

Yet here I am.

Life as Jack’s mom is painful. It is also revelatory, spiritually expansive, emotion-deepening, and moving. But growing, especially in these inward ways, hurts.

As I look back over the last thirteen years, I see difficulty as the undercurrent of my family’s life. I don’t mean that in a martyr’s sense. I mean it because it is true. Jack’s life is not easy. Life for those caring for him necessitates that all energies are focused on him and his needs. I suspect this is intentional, so the people around Jack can learn love and compassion, and can practice doing unto others as they would have others do unto them.

During the sacrament on Sunday, I thought about Jack’s baby blessing. It was a simple blessing that included just three main points: that Jack would be a peacemaker, that his physical body would sustain him until he completes his work on the earth, and that he would love the Gospel of Jesus Christ. I have always thought that because this blessing was so brief and direct, God told Jeff to say only those things that Jack really needed, and that we as his family really needed to know.

How was Jack a peacemaker when he was throwing the Kitchenaid mixer across the kitchen? Well that’s the thing. I’m seeing now that the peacemaker part wasn’t able to happen any longer in our home. I felt, during the quiet of the sacrament service last Sunday, that Jack needed a change in venue, in surroundings, in lifestyle, so that he could grow in this capacity, and then share this gift with other people.

Jeff gave Jack a blessing the evening of his thirteenth birthday—the night before he was placed in his new home. This experience was spiritually overpowering, and not just for me. My stoic teen, my nine-year-old with autism, Jeff as he spoke—all of us wept as we were flooded with the peace that only Jesus can bestow, and love for our son and brother—the gift that Jack is in our family.

Jeff declared that Jack’s ears would be healed. I was dumbfounded. After 10,000 ear infections and surgeries and courses of antibiotics and all our efforts for so many years, this priesthood blessing promised an end to Jack’s ear troubles. He blessed Jack with protection from the adversary, a huge comfort for me as I handed his care over to people I don’t know. The love and peace I felt during this experience was a foreshadowing of heaven (I do not say this as a cliche). This is how it will feel, I knew, when we reunite with God and with each other outside of mortality. The worldly weights, the wide & deep river of hardship, they will all fall away. This is what will remain, the beauty of comprehensive love and joy.

Does Jack love the Gospel of Jesus Christ? I’ve had glimpses over the years that have taught me that while I don’t understand it, Jack does have a special relationship to his Savior. I have to believe that Jack has a conduit with heaven—that angels are helping him and that he has some deep, fundamental understanding of God’s plan for him. Perhaps his new home and new life will foster his growth in this area.

It’s a humbling thing for a mother to realize that her child can no longer learn what he needs to learn within her home. Why couldn’t I teach Jack everything he needs? Am I not enough? My friend Marla called me the day after Jack was placed and shared with me a little about her own trauma when her first child left home at an early age. She knew, even as her grief threatened to overwhelm her, that her son had to live somewhere new so he could rely on his Heavenly Father. This was the real reason he needed the separation. It wasn’t because she was not a good enough mother. It was because God had more to give her son, if he could first learn to need God.

During the long drive to Jack’s group home, I worried that I would be too distraught to leave him, that I would be sobbing and make it all worse for Jack than it needed to be. What I have in my mind though, is this memory:

Jack stood in the living room of his home, two vacuums nearby, all his groceries and meds carefully put away, his bed newly made and his clothes folded in his drawers. I grabbed him in a big, surprise bear hug. His face tilted upward and his face broke into a big smile as I kissed his soft cheek and said quietly in his ear, “I love you, Jack.” Jeff hugged him from behind, and we were a Jack sandwich.

I didn’t feel desolate at that moment. I felt peaceful and happy. Jack felt our love and it made him happy. We were united. The assistant house manager, a mom herself, wept watching us. But that memory for me is perfectly joyful. There is so much love running through the unbreakable cables that connect Jeff and me to Jack, and Jack to his brothers.

My eyes were a fount of tears the entire drive home, naturally. Jeff encouraged me to look back at Jack’s life to this point and be proud of what I have done as his mother. “It wasn’t me. I helped when I could. It was you. You did it. You raised Jack and helped him grow within our home for thirteen years. You did so much for him. If God were here, I think He would say, ‘Well done.'”

Grief is painful because when we love people, separation from them hurts.

But everything has it’s opposite and I don’t think that the opposite of pain in this case is relief. I think it is joy.

We drove through the canyon. It snowed off and on. The phrase, “weeping may endure for a night, but joy cometh in the morning” ran through my mind on repeat.

Weeping is part of the pain of now. It’s not forever though. Jack is God’s. I am too. He lets us cry sad tears so He can later fill us with joy and it will mean something to us.

 

 

XI. Mother’s Day is For All the Women Who Do Hard Things

I have low expectations for Mother’s Day every year. It’s not that I don’t love my mother and mother-in-law, and all the women who have raised me up and influenced me. I absolutely do love and appreciate them.

It’s just that my experience as a mother has, in many ways, been such a cluster cuss.

I love my sons, in their various incarnations. They have strengths and gifts that amaze me. But success as a mother in my circumstance feels elusive.

For thirteen years, I have not been able to do enough or be enough for Jack. In a general sense, I’m sure God sees me as enough of a mom, but the reality is that I really can’t fix anything. I have only been able to hold on, overseeing Jack’s medical & psychological care, education, sensory integration needs, and behavior therapy.

With Jeff’s help, I’ve facilitated Jack living in our home for thirteen years.

For the past few months, I’ve been feeling like there is no way to win in this scenario. We are losing, in every sense, with Jack at home. Now, this very week, he is entering residential care (see *ten* previous posts—not hyperbole, for real). While it’s necessary, it doesn’t feel like a success story.

There are no winners here.

And yet, as I drove the boys to my parents’ house Saturday afternoon so Henry could mow their lawn, I contemplated Mother’s Day, and clearly unearthed this insight:

Mother’s Day is to celebrate women who labor in all sorts of impossible situations.

It’s not about the cultural ideal of the curated Instagram mom who exudes glossy perfection. It’s not about the mother we wish we were. It’s about appreciating the real work that real mothers everywhere do.

It’s about valuing what I have done for Jack these thirteen difficult years.

It feels like I have shed a skin. I’ve sloughed off my old Mother’s Day lassitude. It’s energizing to think of these long years of serving Jack not as a failed experiment—a plodding, inevitable, doomed trajectory.

Instead I can see this season, when I was able to care for Jack in our home, as a baker’s dozen years—a consecrated time of serving, suffering, and growing.

I’m thankful all my boys got to live here with Jeff and me for a time.

I’m thankful Jack has a place to go so we can all be safe and keep functioning.

I’m thankful we are connected as a family by eternal bonds.

I’m thankful to be Jack’s mom.

Happy Mother’s Day to me.

Happy Mother’s Day to Shirley, Joyce, and Grandma Snow.

Happy Mother’s Day to the women in heaven who went before me and loved me: Grandma Goates, Beverly, Grandma Wilcox, Colleen, and Grandma Lila.

Happy Mother’s Day to all the women who do hard things, who keep going, loving, and hoping, despite the sorrows and disappointments of mortality.

 

*yiddle me and my mom (babe), circa 1979

X. Bandaging the Weeping Emotional Sores

Despite the absolute rightness I felt as we learned about Jack’s temporary placement, the doubts have begun to creep in. I feel like this is how the craptastic Father of Lies retaliates to undeniable, peaceful spiritual promptings. It’s like his only weapon is doubt, so he obnoxiously overuses it.

I feel extreme sadness counting down the last days when all my children will live in the same house.

I have anxiety about the people who will be caring for Jack. Will they treat him well and know how to meet his myriad sensory needs?

I feel desolate thinking of how Jack might feel when we drop him off and leave without him. How will he react when we visit him and then leave him there when it’s time to go?

Oh, and are we doing the right thing?

Jeff and I both felt the Spirit confirm the rightness of this decision. But the difficult reality is now hitting us in the face, the gut, and the feels.

I read from 2 Nephi this morning, where it says that if we feast upon the words of Christ, they “will tell you all things what ye should do.”

Yes. I thought, when I heard this. I’ve been reading the scriptures and searching for insights throughout this process. Jesus has given us what we have needed, which is direction with how to care for Jack. Chapter 32 continues, “if ye will enter in by the way, and receive the Holy Ghost, it will show unto you all things what ye should do.”

Jesus Christ, through the Holy Spirit, will tell and show me everything I should do. This is why I need Him, you guys. I need Him to tell and show me everything I should do. Jack’s life is far too important for me to stumble around blindly, driven by my own inadequate ideas.

This vital reminder—that if you study His life and beseech Him then He will lead you to the answers—adequately bandaged up my weeping emotional sores. My Savior has been guiding this process. If there is any consolation that Jack will be okay, it is knowing that Jesus is leading us to the right thing. I have felt the Spirit telling me what to do, and infusing me with calm and peace.

How do you overcome doubt and fear? According to the prophet, you study the words of the Savior because this invites the Spirit into your life. It’s a pretty straightforward formula, and I totes know because I have been testing it in a pilot program known as my weird, disabilities-overhauled life.

IX. The Hardest Day

Today is Thursday. On Tuesday, Jack’s group home placement fell through, just days before he was set to move in. We acted to secure the backup placement, immediately. This morning, that option also fell through.

I have remained calm, not because I am amazing at suppressing anxiety, but because I am inexplicably steeped in calm. I remembered the feeling of peace in the temple when I thought about Jack’s care. I remembered my dreams. I have felt, through this process, that God really wants the best for Jack and He is letting me know this.

This afternoon we secured a temporary placement for Jack. It is almost two hours from where we live.

Though the outcome isn’t what I hoped for, I accept that it is what we have been led to. We followed our instincts when pursuing the two previous options. Despite our efforts, they didn’t work out. Because I know that God loves Jack, He must have led us to this point because somehow it will be better.

Jack will spend the summer far away. As changes happen in other group homes near us, he will move closer. I have shifted from feeling sad for myself to feeling sad for Jack. There is no way for me to explain this move to him. How will I help him understand, so he doesn’t feel banished?

He played in the backyard tonight with his little train car, making happy sounds in the shade on the lawn. He doesn’t know that he will live in this home for just five more days, I thought miserably. This is the only home he remembers. He has never been away from his family in a new setting. He is nonverbal and intellectually disabled. He is much like a giant toddler. Driving and leaving him in an unknown house? It’s torture.

I’ve had a lot of hard parenting days, but this may be my hardest.

Jack’s too.

I love him so much and I want him to be safe and loved and happy. This is the subject of all my prayers (also, please help me know what I should do for Jack).

I don’t have the long view, so I’m leaning on the Savior. He knows us and how to help us. It’s really true—the worst things take us to the point of acknowledging our complete dependence on Jesus.

 

 

VIII. Beach and Boat

Today is Wednesday. Tomorrow we meet with the residential care coordinator for Jack’s group home. He could be placed as early as this weekend.

It’s all moving so quickly and yet, I’m struggling through each day. Jack is still waking up at five AM. He is still a full-time job (for two people) during all the hours that he isn’t at school. He still is breaking and shredding and bashing his head on car windows. He is still uber grumpy by seven PM. He is still practically impossible for Jeff and me to regulate regarding food/meds/activities.

I took Henry to his basketball game last night, while Jeff, who is sick and miserable, stayed with Jack and the little boys. We were gone two and a half hours, and it was too much. Jack shredded the house. Jeff, with two other kids to watch plus two neighbor kids, struggled to keep a lid on things. I know how it goes, because the night before last, I was alone with everyone for several hours. I couldn’t stop the destruction. I couldn’t manage Jack’s anger.

Every time I think that maybe we don’t need the group home, that maybe we can just keep going and keep trying, the reality of our life shows me that we can’t keep going as things are. We cannot do it. We have given it every effort for thirteen years. We’ve given more than we have in us, because God has given us strength we didn’t have. I can see this.

Whenever I question if we are doing the right thing, if this is really necessary, I have this image in my mind of all the events and near-disasters and actual disasters and injuries and violence over the last several years, and I hear the Spirit telling me that God is connecting the dots for me. My questioning is unnecessary because He has already shown me it is right.

I dreamed last night I was on vacation with my boys near a beach. I spent the entire dream trying to get from our beach house to the beach, but I was met at every turn with some sort of obstacle. I kept looking at the clear, cool water and the other families playing on the beach, and I had that old recurring thought that somehow, the easiness of the way was available to them, but not to me.

I woke up, feeling that I was close—so close, but not yet there.

We are on the brink of a big change. I am trying to have faith that it is the right change for Jack and for the rest of my family. I do believe that things will improve for all of us. I also hold no delusions that everything will be seamless. Transition and adjustment will be something difficult, but the beach from this morning’s dream, and the gorgeous sailboat of my previous dream are so close. If I lay one dream atop the other, like layered overhead transparencies, together they reveal the ongoing thorny walk and the nearness of both the beach (my inner hope for a measure of tranquility) and the sailboat on the sea (a symbol of Jack’s potential and future).

These dreams have been a gift, showing me that God is with us and knows just exactly how unexpected and difficult this thing is.

He speaks to me symbolically, which I love so much.

The boat is moored, the water beckons. It’s so close I can smell it.