Monthly Archives: July 2017

Relief

While we were on vacation, I felt a deep sense of calm.

This seems like an obvious way to feel while vacationing, but I haven’t before experienced it at this level. I was truly peaceful. Truman shrieked and wailed a number of times—it didn’t rile me. Charlie had rigidity issues relating to clothing and other minutiae, meanwhile I was a placid pool of water, unfazed by the mini-meltdowns (all meltdowns feel small compared to Jack’s teen-sized tantrums).

When we returned home, I felt happy to be here. I’ve mentioned before that this is a novel feeling for me after leaving town. Before, a return from a trip meant stepping back into the constant gale force winds that blew through my life for thirteen years. One can’t approach the end of a vacation without foreboding and despair when one knows regular life is going to resume kicking one’s can as it reliably has for so very long.

I understand the “home, sweet home” sentiment now. While home isn’t perfect, it isn’t a boot camp with people screaming in my face or Code Brown cleanup duty at all hours of the day. It’s a pleasant place to come back to.

Home needs a lot of attention with regard to paint, flooring, and basically anything Jack ever touched. But home is ours, and it’s peaceful now. It’s a place of refuge where before, it wasn’t. We used to live in the equivalent of an airport. It was always chaotic. People were always stressed. There was always movement, hurrying, busyness. It wasn’t restful and the bathrooms were gross.

For many years, I only liked my house when it was dark outside (and in). When the boys were asleep and Jeff and I watched Victoria or The Crown or Downton Abbey, I liked the way the muted light of the TV played off the surfaces in the great room. In the dark, I couldn’t see the damage to the walls. The beat-upon dining table just looked like a table-shaped shadow. The kitchen counter tops gleamed dimly, and I felt that one area of my house/family/life was neat, respectable, and under control.

I only felt this way at night when the guys were in bed and Jeff and I claimed the evening as ours. Otherwise, the house was Terminal 2 of JFK.

I had a pretty decent sized breakdown last night thinking about Jack. No matter how much peace I find during the day or while on vacation, late-night exhaustion inevitably sneaks up on me at one point or another and I once again descend into the pit.

The pit isn’t a place where I question if we did the right thing. I know we did, because we did what God told us to do. But I am wracked with sorrow at the separation of Jack from our family. We no longer handle the daily struggle of Jack’s care, but we also don’t get to see his sweet moments. We are removed from the positive as well as the negative, and sometimes the weight of this lands painfully on me.

When I finally drifted off to sleep, the sadness remained. But I found that it was manageable, palpably contained by a calm steadiness that descended on me. This calm did not originate within me. It came after I prayed for relief, and for Jack, and for the ability to move forward.

I’m inching onward.

 

I Do Not Have Three Children. I Have Four.

You know that feeling when you have a night of no sleep, bookended by two big, busy days, that all merge into one enormous travel day/night/day of deep confusion and harrowing sleep deprivation? That’s where I am now.

But one really doesn’t feel that one can complain about post-Hawaiian vacation jet lag and the cruelty of the red-eye flight that is the hallmark of air travel leaving the islands. Know why? Because it’s a decidedly first world problem, that’s why.

Waaaaaaaahh, I’ve been gobsmacked by the inhumanity of jet lag following my trip to paradise, booooo hooooo.

See, no one cares. And rightly so.

I got to go to the big island of Hawaii for eight heavenly days. I don’t need sympathy. I just need sleep to return my sense of direction and fortitude.

Meanwhile, I just took a two-hour nap and sucked down a Coke. I’m feeling vaguely human, which probably means this isn’t the best time to write, but oh well. I spent eight days without a computer (my laptop is the size of one of the smaller Hawaiian islands, and thus, didn’t come along with me), so I’m ready to dive back in. This post may have to be deleted later when I am more lucid. We shall see.

The trajectory of my thoughts as we vacationed followed an arc that roughly went like this: 1) awe, 2) astonishment that we were in paradise doing regular/amazing vacation things! with our children, 3) a bittersweet aftertaste that Jack wasn’t with us nor could ever be with us in such a setting (at least until the resurrection, yo, when all the disabilities are excised and he is restored to his glorious eternal self), 4) a sense of incompleteness at the reality of being with my husband and sons, a family that never feels quite whole anymore,  5) defiant joy—at actually being in Hawaii with my three boys whose lives chart a different course than Jack’s, and who also need my time and nurturing.

So yeah, I swam through bunches of emotions. They weren’t all bad. I’ve found that any time I am away from home, it feels less weird that Jack is gone. I believe this is because I am removed from my daily routine anyway.

But then there are times like last Monday evening, when a professional photographer took pictures of my entire extended family at and near the beach. He was organizing us into family units for the big group shots and said something about how Jeff and I have three boys. Of course, he was right. We were there with three boys. But inwardly, in a way I suspect only a mother could really deeply feel, I had a sense of wrongness.

No, amiable island photographer, I don’t have three boys. I have four. I endured miserable pregnancies with each son. I gave painful birth and suffered through breastfeeding and lost all the sleep and carried their chubby baby bodies around everywhere for years, to the detriment of my sciatic nerve. I reordered my entire life to be their mother and raise them. And two months ago, I placed my second son in a group home, permanently, because I could no longer care for him due to the nature of his disabilities.

I do not have three children. I have four.

But if you don’t know me, or this blog, or our history, it looks like we are a family of five—four guys plus me.

There’s too much to say in this one post about all the things I felt and experienced over the last week of dream vacationing with my people. Especially because I’m still partially a bot and will be until I acclimate.

I will revisit all of it. But first, laundry. And sleep.

Mind Fog; Neglected Blog

This somewhat neglected blog has been on my mind—the same mind that struggles to hold a thought, but then occasionally grabs onto a disconcerting idea and clutches it with a death grip. That’s how my brain seems to be working as I continue the grief voyage.

Anyway, the blog. It’s kind of being ignored. Not intentionally, but I’m still trudging slowly and ineffectively along this prickly path. The daily living parts of my life are so much easier now, but emotionally I am dragging a great weight. I just don’t see any quick exit from this heavy process. I don’t think grief and healing work that way.

Yesterday after a day of church, my church calling responsibilities, and children/autism, I felt like I was going to crumble from exhaustion, breaking apart with a hiss of toxic steam.

Just living is wearing me out.

On the other hand, when I am busy with other things, I’m not worrying about Jack and I feel fairly calm. But when I check in on him and hear about the ongoing issues—the struggles that I am no longer able to help with—despondency and helplessness settle in.

People ask me how Jack is doing. We all want to hear that things in his new home are going perfectly, that the change has solved everything. But the reality is that he still has behavior problems and aggression at times (at this moment, much of the time). There is no such thing as a perfect day, behaviorwise, I am convinced. At least not until the resurrection.

The behavior issues remain. The change of setting didn’t eliminate them, at least not yet. The real, quantifiable change in Jack’s care is in the ongoing, rotating staff who stay and help for a shift, and who then leave the behaviors at work and go out to live the other parts of their lives. When they return, they are fresh and ready to engage with Jack again. For their efforts, I am utterly, unspeakably grateful.

When Jack lived at home, I did not have this luxury. Jeff and I had no break, nor were we able to focus our complete efforts solely on Jack. It simply wasn’t possible, nor sustainable. Hindsight tells me that we would have self-destructed if we had continued on as we were.

I can’t see Jack’s future. I don’t know how he will behave, going forward. I don’t know how he will do at his new school. I’m quite disconnected from the daily decisions and the constant troubleshooting that characterizes life as Jack’s caregiver.

I see this as the next step in facing my grief: this further letting go of Jack from my mother arms.

It has been such a raw test of my faith to turn Jack’s life over to his Heavenly Father. It hurts me. Even though I know what God wants for Jack because he has literally guided us to each successive step, I still struggle to accept it. I know God loves Jack and me and our family. I know Jesus is giving us strength. Knowing this, and coping with the everyday change of complete separation does not mean that the two are in perfect synchronicity, however.

I continue to hope that my faith in God’s plan for Jack and my acceptance of His will, somehow, eventually will be in perfect harmony.

Pleasant Surprises

My friend Ann is encouraging the practice of memoir writing among the population at large by posting regular writing prompts. I approve of this. Today, she encouraged all the people everywhere to write about a time they were pleasantly surprised.

Here are my thoughts.

Since Jack left our home, I’ve been on that oft-used metaphorical emotional roller-coaster. Some days are pretty good. Some days feel like my heart has been julienned. And then there was yesterday, when up until five pm, I felt happy, peaceful, content, but when I checked in on Jack via text, the rest of the night was a grief fest.

I’m not sure if it will ever feel right to me. Until we are all made whole in the next life and are unencumbered by disability, hardship, and sadness, I’m not sure that I will ever feel complete.

But, there have been some happy, unexpected things too.

  1. The ability to sleep late. It’s summertime. We are staying up late and, with no where to be early in the morning, we are sleeping in. Jack never slept in, which meant I never did either. But my other kids can putter around and entertain themselves for a bit in the morning while I slumber. This is an unimaginable luxury for someone who hasn’t slept late in roughly sixteen years.
  2. I am losing weight. Turns out stress is an excellent appetite suppressant. Grief has reordered my food cravings and my hunger cues. I still eat what I want, but I eat less. I’ve lost about twenty pounds, which feels like an okay accomplishment.
  3. I am no longer a ball of stress. Several people have remarked that I have a different energy about me now. I assume this is because I am not living a 24/7 fight or flight response. I can sit and have conversations with people without feeling antsy. I had forgotten that life can be peaceful. I am enjoying the ability to be calm and still.
  4. Jeff and I have the time and energy to focus on our other children. We are less testy, more patient. We are present for them. We can be spontaneous in a way that we never could before. It feels like freedom.
  5. Travel is suddenly a reality. We are preparing for a vacation with our sons that was out of the question for so long. I never thought it would ever be feasible. But here we are, after years and years of limitations, with a renewed vision of life playing out before us. I’m turning 40 in a few days, and I’m struck by the sense that life has various chapters that lead us to different, unexpected parts of our story. I find this exciting and rewarding.
  6. I’m so happy that Jack has kind, genuine people in his life still to care for him. They are a gift. I’m struck by the sense that God loves us enough to find us the help that we need. If it were up to me, I never would’ve found the good people in the small town who love Jack and take care of him now. But God knew who and what we needed, and he led us there.

Surprise.

Three Sentences That Turned Around The Worst Day Ever

I’m going to write about the type of mother I am, versus the type of mother I set out to be. But before we dive into the details, allow me to tell you a story about the Worst Day Ever.

Yesterday was that day, for no particular reason, other than it simply WAS. The Worst Day Ever. It started when I couldn’t sleep from five am on, until I dozed off around 6:50 and was promptly awakened by my alarm at 7:00. A grumpy kid snarled at me all morning. The entire family had to pile in the car early to be dropped off at my sister’s house for various logistical reasons.

The day in which I operated without enough sleep and with far too much sass from children continued. It was hot. The five-year-old had a couple of meltdowns, which isn’t unusual, but which was a sort of tipping point for me and my terrible, horrible, no good, very bad day.

I tried to take a nap. I got in about ten minutes before the phone woke me up.

By bedtime, I was a hot mess.

I was tormented by thoughts of a) what I set out to do as a mother, and b) what the story of motherhood has actually looked like for me. It was my life’s number one goal—motherhood! I wanted to do everything right. I took copious notes in my college child development, family life, and adolescent psychology classes. My teacher training classes lit a fire within me. I would be a mother whose children were PREPARED, who THRIVED ON BOOKS, whose BRAINS BENEFITTED from the early nurturing of a dedicated mother. I’ve written before about how I dove into parenting headfirst, and with great excitement. Gosh dangit, I was going to PARENT!

Thinking you are prepared and actually finding yourself truly prepared for the calamity of disabilities parenting are not the same thing.

I took fourteen years off work, during which time I (ironically) worked harder than I ever had at any job before or since mothering.

I wanted to be a good mom. I tried to be this. And then my particular children changed our trajectory. We weren’t typical. Our family experience was nothing like most people’s (if family life can be generalized at all. Who’s to say?) My children couldn’t be taught to read. One of them couldn’t even speak. Toilet training took YEARS UPON YEARS, for each child. We spent our money not on nicer furniture or family vacations, but on behavior therapy, respite babysitters, and replacement household fixtures and appliances that our children regularly broke.

Maybe this sounds rather jaded. But I don’t feel any resentment or regret for bringing each of my boys into the world, or for dedicating all my efforts to raising them for nearly fifteen years. In fact, now that Jack is no longer in my care, I am singularly grateful that I gave him everything I had while he was little and still living in our home.

The grief tsunami that hit last night came from a place of helplessness and tried to drown me in my own sense of inadequacy. I gave my everything to parenting Jack. But it wasn’t enough to “fix” the aggression, the destruction, the constant need for sensory input. I couldn’t parent away Jack’s need for constant, devoted care. He needed more than I could give, even though I was giving everything I had.

I tried, but I couldn’t keep Jack at home with our family. This is what haunted me throughout my bad day.

When I was pregnant with eldest son, I would watch episodes of A Baby Story while I folded laundry on the basement futon of our Sugarhouse home. One episode followed a youngish OBGYN (rather than following a particular mom preparing to give birth). It featured this doctor in several birth settings, helping deliver babies and offering genuine congratulations to their joyous parents. After one birth which took a turn from the uneventful to the unexpected, the doctor was filmed, saying, “Childbirth is a vulnerable time in a woman’s life, when often despite her best plans and efforts, she ultimately has little control over the process and the outcome.” He said this with great compassion and almost some regret, but with a sense of truth revealed by reality.

Now with 16 years of interim parenting experience, I think I could repeat this quote, substituting the word “childbirth” with “motherhood” to the same effect.

By the end of the episode, I saw why they had dedicated the show to this young obstetrician. He had recently been killed on a highway when he stopped to help a motorist in distress. The show contained footage of dozens of young moms and babies at his funeral.

I thought of this OB, whose story I saw only briefly many years ago, as I loathed the outcome of my parenting life with Jack. Now I can see a parallel between his story and mine. He labored enthusiastically at something, and he did it compassionately. But all of that was cut short. I raised Jack for thirteen arduous years, which I did wholeheartedly. But Jack’s disabilities and God’s plan for him changed everything, including my role in Jack’s life.

My sense of loss and the resulting shock waves of inadequacy at motherhood washed over me violently. This was the real cause of The Worst Day Ever. I was suffering because I couldn’t be the kind of mom who could do the impossible.

I spoke with one of Jack’s caregivers last week, and she told me what happened after I left Jack’s home following my emotional and difficult visit a couple of weeks ago.

She said he stood at the window and watched us drive away. He stood there and watched for a long time. Then he turned around and his expression, she struggled to describe to me, was confused. He looked as if he simply did not know what to do.

She told me this as a means of conveying that Jack remained calm and didn’t lose his temper of become violent—all positives. But hearing this as Jack’s mother, I was bereft. It was heartbreaking for me to imagine Jack in this state of confusion, perhaps feeling abandoned and unloved. I couldn’t undo Jack’s pain. My heart hurt for Jack, and I prayed telling God how sad this made me feel. It was a fervent prayer, through considerable tears.

I was driving as I said this prayer and I felt at that moment as though the Savior spoke gently into my left ear, saying three sentences that cut through my sorrow.

“I am with Jack,” I heard him say. “I know how he feels. I am helping him.”

Peace seeped through my mind and then progressively through the rest of me. I hadn’t even thought of Jesus being with Jack and comforting him. I have been relying on the Savior’s ministering to see me through this grief period, and he has unequivocally been the reason I can keep going. But I had not considered Jesus attending to my little nonverbal son, who can’t even ask for help—who can’t utter a prayer.

I’m blown away that the Savior of the whole world found it expedient to say three sentences to me as I drove and prayed.

I can’t effectively express my relief and gratitude at knowing that Jack is in his Savior’s care.

He’s taking care of me AND Jack.

He’s taking care of all of us when we are sad and lonely and overwhelmed and miserable. Even when we don’t know how to ask, Jesus knows what we need and rushes to help us.

I didn’t before understand this as concretely as I do now. It was a vivid lesson, a wave which pulsed over me with spiritual saturation because Jack had to move into a group home.

Jack’s care had to change. Because of this I know how deeply Jack and I need our Savior, and that he is with both of us.

Good Enough Will Do

I’ve started pulling back from checking in on Jack. I still have plenty of contact with the director, but I’m not texting her every day to see how he is doing. I need this space for my sanity. If he can’t be here physically with us, then I can’t torment myself with daily bits of out-of-context information.

The sadness is still very much present. But with this emotional distance, I am better able to cope.

Today, parenting Jack involved emailing some paperwork to the director. I mothered Jack by buying him a much needed new swimsuit on Amazon and had it shipped to his new home. I added a sensory spinning toy for kicks. Then I put my grief in a box and put it on a shelf and stopped thinking about it.

I went to the gym and it felt great. I took Truman to swimming lesson, and Henry to the rec center to hoop. I took the little boys to Despicable Me 3, which we all liked. I made a healthy dinner and everyone ate it, except Truman, who basically only eats dino nuggets dipped in ketchup and yet still lives and grows quite tall. Go figure.

Today felt like a good version of our new normal.

And yet, the world spins and pain happens. Two of my kindred friends have medically fragile children who are recently on hospice. As they step closer to the hinge moment of their lives, the event around which all other events, past and present will turn, I feel we are comrades in arms. We are marching on to battle. We’ve come from other battles. It’s a weary war, but it’s the war we’ve been called to fight in.

I don’t intimately know their daily experience, but my heart stretches out across hills and a valley to where April and April live. I know loss. Perhaps in a different way, but loss nevertheless. I feel so much love for them and their families. The disabilities aren’t the same, but the appreciation of life, and hope, and faith that Jesus Christ has ensured our kids’ restoration to wholeness—it’s carved on all of our hearts by the fallibility of our children’s mortal tabernacles.

“Lay not up for yourselves treasures upon earth, where moth and rust doth corrupt, and where thieves break through and steal: But lay up for yourselves treasures in heaven, where neither moth nor rust doth corrupt, and where thieves do not break through nor steal: For where your treasure is, there will your heart be also.” Matthew 6:19-21.

This is the passage of scripture that’s been floating through my mind this week. I’ve pondered it as I’ve thought of Isaac and Leah.

I’ve thought about it as I watch my parents grapple with serious health challenge after serious health challenge.

I’ve pondered it on the elliptical, and while weeding, and while folding sun-baked beach towels that were hanging over the deck railing.

I’ve repeated those verses in my mind as we purchased new flooring for our basement, and planned to move the old furniture downstairs making way for new living room furniture. I think God is reminding me not to care too much about it. My philosophy as we choose new planks and couches to replace the broken/trashed ones we’ve long lived with is this:

A Good-Enough House Will Do.

It doesn’t have to be amazing. It doesn’t have to be Instagram-worthy or aesthetically unique. I don’t have to stress about how well it reflects my inner style. Just find something that looks pretty good (and is durable as heck) and go with it. Good Enough.

A Good-Enough House Will Do.

You don’t get to take it with you, and if you spend too much time thinking about it, that’s where you heart will be.

Where’s my heart?

A big ragged part of it is two hours away at Jack’s house.

It’s beating and hurting for Leah’s and Isaac’s parents.

It’s healing and regenerating when I talk to and write to other SN moms who are desperate for direction and a measure of peace in their frantic families.

It calms when I pray in earnest and the Holy Spirit applies a salve that always soothes, no matter what.

My heart is broken open, expanding in grief.

It’s better than hardening and withering. I suspect both hurt.

I’d rather my heart become an expansive mess than a shriveled thing with a hard candy shell.

(V blurry action shot of Jack reveling in Santa’s Christmas Eve stop at Gma Shirley’s house. This squeezes my heart and feels happy/lovely at the same time).

People are Good

It’s been six weeks since Jack left our home.

Is it getting easier? Yes, in some ways, except when I worry about him and wonder if he is sad or feeling unloved and then I have a cry-fest.

The true answer is that the dynamic of our home is completely different, so just living is definitely easier. Family life is vastly calmer. It’s utterly manageable, in a way I haven’t experienced since before Jack’s birth. There is far less panic, stress, anxiety, and weariness. There is far more serenity.

As far as how Jeff and I are coping, it’s not always that simple. We know this move was divinely driven, but we still feel unsettled and adrift at times.

It’s a real challenge to let go of the picture in one’s head of how one thought one’s life would proceed.

I’m still working on accepting God’s will for Jack and for me. I suppose this is the perpetual trial of humanity for all Christianity.

Now that some time has passed, I’m starting to feel hunger again. I’m sleeping normal amounts instead of vacillating between too little and too much sleep. I have enough energy to work out a few times a week, which is a vast improvement from zero times a week that was the norm during The Transition. We’ve started moving forward on our first project of Mission: Fix-the-Destroyed-Parts-of-the-House. The fact that I can even think about taking on a project tells me that emotional healing is starting to happen.

The grief and grief recovery of the last six weeks have made me reflect on all that transpired outside of my inner sphere of personal struggle. In other words, I keep thinking of all the things that people did for me and said to me during that time.

I once had a stockpile of thank you note cards in a drawer in my laundry room, and man did I use them. I wrote all the thank you notes, and for basically everything. My mom hammered this trait into me. I appreciate it, and probably owe her a note, ha. But in the last few years, I stopped writing notes. Maybe it’s because texting or emailing someone a word of thanks is a far simpler and superior method, which doesn’t involve finding stamps or walking to the mailbox. Maybe it’s because my life was so tightly wound I could barely creep through the essentials of the daily routine, let alone compose notes and mail them.

As I’ve thought about all the ways people in my life reached out to me in the last couple of months, I remembered my drawer full of thank you cards, and I knew that even if I still kept a whole lot of stationary in there (which I don’t), it wouldn’t be enough to send a note to every person who reached out and ministered to me in my distress.

So many people sent notes.

Texts.

Emails.

Facebook and Instagram comments.

Hugs.

Chocolate.

Flowers.

Soda.

Pizza.

Books.

Lunch dates.

Help caring for and driving around the other boys.

Anonymous deliveries on our doorstep.

Prayers.

My sister informed me that her love language is gift-giving, and promptly bought me a ticket to visit her in San Francisco. For real.

People I know personally and people I have never met reached out privately to offer support in a hundred different ways, all of which renewed my jaded sense of goodness in the world. In case your faith in humanity is waning, please feel free to borrow a portion of mine.

The most painful period of my life, save the times following Jack’s and Charlie’s diagnoses, showed me in a very real way that people are good. The vast majority of people are just good.

And even when people behave horribly, or are toxic, or narcissistic or mean or clueless, they are still people. And I have to believe that they’re at a low point in their life’s progression that does not represent who they really are or who they are capable of being.

There were numerous times when I felt unworthy and vastly grateful for the love that has been shown to me. This is when I would weep as I said this prayer, “Thank you, Father, for my sisters in the gospel.”

Raising Jack has taught me a lot of lessons over the years. This one was painful, but I’m glad I learned it.

People are good.

I am grateful.