Kirsten Panachyda

Writer, Speaker, Singer-Songwriter

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Faithful

Last February, I wrote about my first “word of the year.” I spent 2018 meditating on and trying to live out the call to Proclaim. That focus led me to work harder on writing, on making connections, on looking for ways to tell the goodness of God as I have experienced it. My sense of vocation and purpose strengthened, and I think I will never be the same.

This year, another word chose me. It’s a little quieter, less apt to rouse a thrill of excitement. 

Faithful.

Here in February, when New Year resolutions and determinations tend to fade or wither, I am unpacking this powerful adjective. God is faithful; I want to be found faithful. The two associated nouns, faith and faithfulness, give me two lenses to see myself as I seek to become more like Jesus.

“Faith is the assurance of things hoped for, the conviction of things not seen.” (Hebrews 11:1) How I trust God, what I trust Him with and for, how my trust informs my actions and words— these are the measure of how open my heart-conduit is to the power and grace of the Holy Spirit. 

Faithfulness, for me, can often be seen in whether 1) I took the time to pray over and plan my work for the week ahead and wrote it down, and 2) whether the pages of my planner show items checked off, or with notes scribbled beside, and maybe a coffee stain or two. I am not, by nature, a planner or doer. For some people, there are temptations to become too busy. For me, the temptation, I’m afraid, is to laziness. At the end of each day, I can tell if I rested or took recreation because it was the right healthy choice, or if I took it to avoid the pain and discipline of the good works God gave me the opportunity to do. The first gives me a sense of satisfaction and peace; the second gives me dissatisfaction and a shame I need to confess to God. Too often I simply neglect to persevere.

I want to be faithful. I want to live out my life full of faith in the One who loves me best. I want to faithfully serve the hearts I see who are hurting, who need words of encouragement and hope and comfort. The ones who are in that season with no rest and refreshment in sight. The ones whose kids are in crisis and there seems no end. The ones who are dealing with grief and burnout and despair. The ones sort of doing well, but waiting for the other shoe to drop. The ones whose homes are chaos because of mental illness, and the ones whose homes are emptier because of mental illness.

Because I love God and I’m learning to love His people, I am practicing faith and faithfulness.

Do you have a word or focus this year? How is going in the second month?

9 Ways Having a Newborn Prepares us to Parent a Kid with Mental Illness

Newborn Lessons

I remember when my kids were babies. Parenting was overwhelming, especially when the first was a newborn. There were so many things to learn, from which direction the tape on the diaper was supposed to go, to how to cope with the total responsibility for a helpless little human. But I did learn, slowly and imperfectly. When I felt lost in the uncharted seas of my son’s mental illness in the teenage years, it was empowering to know I had already learned so much. Some of the lessons from his infancy were timeless. I pulled out the old mental files and used them again.

Nine Lessons From the Newborn Days:

1) Sleep when they sleep.

Just as it was exhausting to give birth and then nurse a newborn every few hours, it really drains us to care for a kid with extra needs. We need to rest! Also in this category: drink more water, get some sunshine, try to eat the foods your body needs to thrive.

2) Recognize different cries.

One of the most confusing things about parenting a kid with MI is discerning between typical behavior/response and the illness. Teenagers are going through a volatile time of their lives. Through close observation and experience,we can learn when our kids are experiencing extra distress that needs special attention.

3) Encourage them to self-soothe.

When our babies’ needs are taken care of, we can help them learn to settle themselves. When they wake in the night, we can pat them to let them know they are safe and loved. Then, instead of nursing or rocking them all the way to sleep, we can let them try to drift off in their cribs. When our teenagers are in distress, we can ensure they are not in crisis, then give them the chance to use healthy coping skills.

4) Swaddling is calming.

Sometimes. One of my babies would calm right down when a blanket was wrapped tight around him. My friend’s baby liked to be wrapped as long as his hands were free. My other baby would cry until he was unwrapped and could kick his legs freely. With our kids with MI, we can try different levels of closeness when they are in distress, then watch to see what works best.

5) Symptoms should be taken more seriously.

When my newborn had a temperature over 100 and was uninterested in eating, the doctor sent us to the emergency room. When my seven-year-old had the same symptoms, she advised fever reducers, rest, and watchfulness. Likewise, certain behaviors or moods are indications of more danger for a kid with MI than a typical kid.  It’s appropriate to be extra cautious.

6) Don’t tiptoe around.

It can be tempting to adjust the noise and activity level when new babies are in the house. However, if they become used to only hushed voices and lullabies, then any unexpected noise will wake or startle them. It’s better to carry on the rhythms of normal life. Our kids with MI need to live in this world and among people. They need to learn resiliency and how to function in situations that are not crafted to accommodate them. This is not to say we should not be considerate and sensitive to their needs. But we should not act as if they are the only important souls in the family.

7) Cheer for smiles and first steps.

What is easy for big kids is hard for babies. We celebrate their milestones and don’t expect first attempts to be perfect. When a kid with depression takes steps toward wellness, whether it’s a homework assignment, sitting and watching a movie with the family, changing his sheets, or going for a walk, let’s not dwell on how much more or better he could be doing. Enjoy a quiet moment of celebration and respond positively to his efforts.

8) Expect messiness and don’t take it personally.

Babies are messy. For every adorable moment in ruffled ankle socks or a fuzzy bear hat, there is a blown out diaper or sweet-potato-spit-up on the sweater Grandma knit. We may sigh, but we don’t take it personally. Life with mental illness can be messy too. Steps forward and back. Progress and relapse. Meds that work, then inexplicably stop working. Ensuing relationship conflicts. Our weariness and grief can make it all feel personal. It can help to keep repeating, “It’s the illness. It’s the illness.” 

9) Ask for advice, but trust your instinct too.

As a new mom, I read soooo many parenting books. It was helpful to have that wealth of information and I used a lot of what I learned. But it didn’t take long to realize that some of the advice was contradictory. Sometimes, none of it pertained to my unique child. There’s also a lot of advice, some great, some pretty awful, about parenting a kid with mental illness. We need to sift through, use what’s helpful, and then recognize that we know our kids best. Teachable, but discerning.

BONUS:

Dedicate them to God. 

In our church, we practice child dedication, where we acknowledge our children are gifts from God, and we are just stewards of their lives. We offer our parenting to Him, to seek His way and His wisdom. We express gratitude that God has shared the gift of these souls with us, and recognize that they belong to their Creator. We pledge to faithfully do our part and entrust the rest to Him. This mindset has been the most important road to peace for me when the parenting journey got tough because of my son’s mental illness. I pray it helps you too.

Burlap Tree

Christmas is all the way over. I love celebrating all twelve days, from December 25 through January 6, Epiphany. When the kids were little, we did a different fun activity each day. We often watched a movie trilogy for three of the days. Going to visit relatives or having them come to us counted. So did breakfast for dinner. These days my favorite perk is that when I don’t get everything done by Christmas Eve (ahem, Christmas cards), I can give myself a break because there are still twelve more days. This year I sent some cards on the sixth day of Christmas. 

But now it’s really over and the new year is unquestionably underway. The Christmas tree has been down for nearly a week. More true confessions: None of us were really feeling it this December. Our path with Nicholas and bipolar has made a hard turn again. Keeping steady, walking in a different direction, and being kind to each other took energy otherwise available for things like decorating. I actually love what we finally did. Nicholas and I created a “tree” with burlap, an abstract design, and wooden dowels. We hung it on the wall by the fireplace. We took out just the box of ornaments and all of us chose some and hung them in the open weave of the burlap. 

We got to look at our favorites and enjoy our memories. Our wedding! That fantastic trip! Buying our house! But the whole thing was devoid of labor or bickering or the dread of January clean-up.

Our decor sure wouldn’t have won any awards. Or even a second glance on Pinterest. (But I bet if some truly crafty person took this idea and ran with it, it would be stunning.) But for us, this year, it was the perfect definition of that elusive concept, self-care. I didn’t stress out over trying to get everything right. Neither did I set myself up to feel dreary over not having any decorations. 

I must admit, though, even taking down my one burlap tree made me gloomy. The hard business of walking that new direction seems a little harder now that Christmas is over. Yet my mind keeps going back to one of the famous Scripture passages that we often read in December:

“For a child will be born to us, a son will be given to us; 

And the government will rest on His shoulders; 

And His name will be called Wonderful Counselor, 

Mighty God, Eternal Father, Prince of Peace. 

There will be no end to the increase of His government or of peace, 

On the throne of David and over his kingdom, 

To establish it and to uphold it with justice and righteousness 

From then on and forevermore. 

The zeal of the LORD of hosts will accomplish this.”

Isaiah 9:6-7 NASB

Familiar words for people who attend church, or those who have ever sung in a choir. In fact, I can’t hear it without Handel invading my mind for at least a day. But this year,  the phrase that captured my imagination was not in the famous chorus from Messiah. 

“There will be no end to the increase of His government or of peace.”

No end to the increase… of peace.

Peace is not static. It is not one-and-done. Peace increases. 

The more the Prince of Peace reigns on this earth, the more His government and His peace will increase. The more the Prince of Peace reigns in my life, the more His ways, His law of love, His peace will increase in me.

Peace be with you, friends.

The Long Dark

It is coming. The longest dark. I was born into it, just a day before winter solstice. My ancestors lived for centuries near the arctic circle in Finland, where the long dark gathers up a great swath of the year and holds it in a cold embrace.  I should be built for it; I should handle it better.

Instead I sleep, even longer than the dark lingers in the morning. And again when dark creeps toward the house in the late afternoon. I sit in front of a therapy light. Vitamin D capsules accompany breakfast. Boxes on a calendar grow a pattern of  X connecting X, filling in toward the red circle marking the day I leave for south and sun.

Dark makes me vulnerable. For others, different triggers scrape away at defensive layers. The raw spots are prone to infection from doubt, weariness, a sense of losing the fight. The triggers may differ, but vulnerability is universal. 

For parents whose kids struggle with mental illness, the defensive layers may be thin. A relapse, a post on social media about someone else’s child’s accomplishment, an unhappy anniversary of illness- all can reveal our hurt places. Unpacking the Christmas ornaments with their reminders of happier times, attending festivities while feeling numb, hearing about hope and joy and peace when these seem so far- these can wound as well.

I find wisdom in the old manner of celebrating Christmas. Advent, starting four Sundays before the big day, used to be a meditative approach to the celebration of Christ’s birth. Like Lent, it was meant to be a time of reflection, fasting, and prayer. I love that Advent can be seen as an acceptance of the long dark. Before the celebration of the Light.

At the time of the first Christmas, the Jews in Israel lived in vulnerability. They were at the mercy of the occupying Romans. Four hundred years had passed since the last prophecies. They understood the long dark. Zacharias, his wife Elizabeth, and their son John showed us how to celebrate Advent: with expectation, faith, and acknowledgement that the light was not yet. 

Zacharias, a priest, foretold the role his son John the Baptist would play in preparing the way for Jesus, and then he sang out his great hope:

Because of the tender mercy of our God,

With which the Sunrise from on high 

Shall visit us,

To shine upon those who sit in darkness

And the shadow of death,

To guide our feet in the way of peace.

(Luke 1:78-79)

Thank You God, that in Your tender mercy You don’t ignore the long dark. Thank You that You visited us when Christ came. Thank you that You are the Sunrise who remains with us. Thank You for Your peace soothing our hurt, guiding our way. Shine on us, Light of the World. 

A Simple Birthday Card

                        Unsent

Unsent

Do you procrastinate ordinary things? And the more time that goes by, the more the thing looms and gains importance? A simple birthday card, waiting for a stamp. Now it’s late- you can’t just send it like that, so you open it to add a handwritten letter. Now it needs a stamp and a new envelope. More time goes by- you can’t just send it like that. It needs a small gift, so you set aside the card, letter, and torn envelope until you can shop, wrap, package, and go to the post office.

Your friend never gets her birthday card. Or so I’ve heard.

My dear blog friends, this is your birthday card. The longer life pushed off writing, the more I felt that the next post had to be profound. Life-changing! The Best Thing I’ve ever written!

Would it be okay if I just let you know that God is still holding on to me- and I know He will do the same for you?

There have been lots of ups and downs in the last month. Crisis returned to visit as Nicholas’s stability crumbled. He did an incredible job of seeking help, and ended up staying in a psychiatric facility near his college for a week. He’s doing much better now, but his semester took a nosedive. Dan and I went on a couple’s vacation and had a wonderful time. We spent Thanksgiving break working through options for Nicholas and supporting him as he tried to make up missed school work. Things were looking up. A couple days after he returned to school after break, he called for another intense conversation. He’s decided to salvage as many of the credits for the fall semester as possible, and then… not return to college.

There are many paths, and college is only one of them. I fully acknowledge that reality.

Also real: discouragement, disappointment, concern for the future, a teeny bit of selfish regret that empty-nesting only lasted three months, a deep longing that Nicholas will find his path, sadness that mental illness will probably always be a factor.

More real than any of that:

“For I am convinced that neither death, nor life,

nor angels, nor principalities,

nor things present, nor things to come,

nor powers,

nor height, nor depth,

nor any other created thing,

will be able to separate us from the love of God,

which is in Christ Jesus our Lord.”

Romans‬ ‭8:38-39‬ ‭NASB‬‬

How are all of you doing?

Wonders of Old

When I tell our story, I often say that for now, we are on the other side of the “crisis years.” During those three plus years of teetering on the edge, it seemed like we would never be okay again. There were days when I was sure Nicholas would not outlive his teen years. But even in those dark times of endless stress, God shed His light on our way. He brought unexpected comfort and fun, even a (carefully managed) family vacation. He sent people to guide, educate, and be part of the care team. Most of all, Holy Spirit spoke to our hearts about our security in God’s love.

During your crisis time, has there been light on your way? What are the moments and provisions that point you back to the love of God?

For me, living in the for now, fear is something to battle. It likes to creep around on the edges of my mind and pounce when I’m feeling tired or something has triggered painful memories. Fear itself is not real, in that its object is not part of my current situation. However, it’s not based on unreality either. Nicholas has a chronic illness. Bipolar Disorder needs to be managed, and relapses are possible. The fact is we might actually be in between crisis times, and there’s no way to know.

Circumstances can change at any time, but God never does. When we are again in the day of trouble, there is a way to peace:

“I shall remember the deeds of the Lord;
Surely I will remember Your wonders of old.
I will meditate on all Your work, and muse on all Your deeds.
Your way, O God, is holy;
What god is great like our God?
You are the God who works wonders;
You have made known Your strength among the peoples.”
Psalm 77:11-14

Did God perform wonders for me in the crisis years? Yes- my whole heart, my intact marriage, my close relationships with my sons, and especially my magnified trust in God all testify to what He did in and for me. Remembrance battles fear now, and will help me survive future crisis. The writer of the psalm emphasizes the principle with a call to muse, to meditate.

How about you? Go back to what came to mind about the light, moments, and provisions God brought you during crisis. How has He shown His love and faithfulness to you? Challenge yourself to make a list of people, resources, glimpses of beauty, spiritual insights, personal growth and whatever else you are grateful for.

When the light seems dim, go back and meditate on God’s wonders of old.

My Boy from Before

Missing my Kid
Artist:Giotto

I miss my kid.

A few months ago I did a ten-part series on the worst pains of parenting a kid with mental illness (you can find that here). There was one I left out, not because it didn’t belong, but because it seemed like it needed its own space.

The mourning over the kids who used to inhabit our lives aches in us. So much can be stolen away: laughter, silliness, moments of growth, flashes of new insight. The “awww” moments of peeking in on them while they sleep. The messy, chaotic, normal interactions with siblings full of play and squabbles. The way they enjoyed their hobbies or sports.

When Nicholas was really sick, he seemed gone from me. It wasn’t that I didn’t love the boy who was there. I did, fiercely. He was still mine. But the Nicholas from before mental illness seemed to be present only in briefly glimpsed shadows. Sometimes I spent long hours looking at photographs of him and other times could hardly bear to think about him, my boy from before. It wasn’t that he had grown up and moved away. He had not died and left this world. He was just gone.

Sometimes when I left visiting hours at the hospital, I would get back in the car and turn on songs about loss. Volume up, almost to pain, I would sing along with force and rage. I would get to the end of a song, press repeat, and sing it again. I wrote one too:

“In a paper gown in the sonogram room
The door clicks shut and I wait.
If I stay in bed, can I keep you safe
Or am I losing you today?
Four months later I hold you close
As I meet you face to face
Glad I brought you this far
But every mama knows
She’ll lose her baby someday…”

I’ve heard that being being a parent helps us understand God’s heart toward us. I find this true- the protective, do-anything-for-you, unquenchable love that I have for my kids echoes the love of God. My grief over my boy from before also echoes this love. When Israel had turned away from their God, He yearned over them:

“When Israel was a child, I loved him,
and out of Egypt I called my son.
But the more they were called,
the more they went away from me.
They sacrificed to the Baals
and they burned incense to images.
It was I who taught Ephraim (Israel) to walk,
taking them by the arms;
but they did not realize it was I who healed them.
I led them with cords of human kindness, with ties of love.
To them I was like one who lifts a little child to the cheek,
and I bent down to feed them.”
‭‭Hosea‬ ‭11:1-4‬ ‭NIV‬‬

God understood my heart. More, I had a window into His.

Dear friends, maybe you are grieving your gone-but still-here kid. I pray God will comfort your sore heart. If I can pray for you, please let me know in the comments or through my contact page.

Painful Top Ten Compiled

Every child is unique. Every family is different from every other. Yet in this “weird little club” (see kirstenp.com/blog/weird) we share common ground. Here are the things I hear the most from mamas whose kids are struggling with mental illness:

The Painful Top Ten:
10) People don’t understand
9) I am confused
8) I feel lonely
7) I worry about my job performance/security
6) I worry about my marriage
5) I worry about my other kids
4) I am exhausted/burnt out
3) I can’t get my kid the help that is needed
2) I feel defeated
1) I don’t know what to do

Oh man, I have been in each of these quagmires. It hurts. These pains are impossible to ignore. A heaping double handful of self-doubt, anxiety, heart-ache. Life just feels hard. All the time.

How about you? Can you find yourself in the painful top ten? Or maybe you are a grandparent and you recognize it not only in yourself, but in your child who is parenting your precious grand. Are there other painful feelings in your top ten these days?

Over the next weeks we’ll be tackling these topics in turn. My prayer is that we will offer each other some hope, some solidarity. We are unique, we are different, but let’s spend some time meeting on our common ground. I look forward to seeing you there.

#10 PEOPLE DON’T UNDERSTAND

“Boy, those teenage years can be tough, can’t they?”

“Heh, heh, heh, Mark Twain said, ‘When a child turns 12, he should be kept in a barrel and fed through a hole, until he reaches 16…at which time you should plug the hole.’ “

“Kids are so over-medicated these days.”

“Just let them know the consequences and then be consistent.”

“Every teen has mood swings. It’s the hormones.”

“Siblings always fight.”

“Boys will be boys.”

“Girls are like that.”

People. Don’t. Understand.

In a way, how can we blame them? Did we understand before it was our kids? Aren’t we, let’s be real, still bewildered by the whole thing? And don’t we have the sneaking suspicion (or full-blown confirmation) that even the most educated professionals are not totally sure about diagnosis or treatment?

Still, it’s painful to be confronted by the proof, through an ignorant comment or blank look, that other people just don’t get what we’re going through as parents whose kids have mental illness.

So what can we do? How do we treat this wound?

1) For the important people, the ones whose support you crave, those who love you and want to understand- take a deep breath. Take some time with them. Maybe gather some materials so they can get educated. Let them know that it’s not the same as everyone else’s parenting journey and why.

2) Develop your own blank look.

3) If you are up to it, confront the misconception and stigma with a gentle but truthful reply. This is better practiced ahead of time. For example: “Actually, teens with Borderline Personality Disorder experience an inability to regulate their emotions far in excess of the typical teenager. They need to learn special skills, just like someone with dyslexia needs to learn special skills in order to read.”
You don’t always need to take this step. You don’t “owe” anyone an education. But if you are feeling strong at that moment, go ahead and be an advocate. If not, see #2.

4) Talk to the One who understands. God has known every kind of parenting grief. Self-destructive choices? Check out Adam and Eve in Genesis 3. Believing lies about themselves instead of the truth? See Moses in Exodus 3 and 4, arguing with God about his inabilities. Violent and paranoid? Saul, I Samuel 20. Deceptive and manipulative? Jacob, Genesis 27 (helped along by mom- codependent?). Impulsive? Go back a couple chapters to Genesis 25 and read about Esau selling his birthright for some lentils. Suicidal? Elijah in I Kings 19. Or Judas, Matthew 27.
No matter what you are going through, He has too. And more, He sees into your heart and your days. He cares about your hurt.
He knows the sorrow. Jesus looked at His children and mourned, “Jerusalem, Jerusalem, who kills the prophets and stones those who are sent to her! How often I wanted to gather your children together, the way a hen gathers her chicks under her wings, and you were unwilling.” (Matthew 23:37)
People don’t understand. How you choose to respond to their misunderstanding is up to you and depends on the situation.
God does understand. I pray you find comfort in His deep knowledge of you.
“In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God.” Romans 8:26-27

How about you? What have people said to you that showed lack of understanding? How did you respond?

#9 I AM CONFUSED

Clinical Depression
Depression with self-harm
Depression with suicidal ideation
Depression with psychotic features
Major Depressive Disorder
Major Depressive Disorder with disordered eating
Major Depressive Disorder with Borderline Personality features
Bipolar Disorder II

These are just some of the “official” diagnoses that have shown up on the paperwork for my son over the years. In psychiatric diagnosis, fluidity is more often the norm than certainty, especially for adolescents. If there is a list of ten diagnostic features, and a child has five of them, instead of seven… well, do they have that or not? And so many symptoms, like hearing voices, or disordered eating, cross categories. Is it schizo-affective disorder or depression? OCD or Borderline Personality?

How about medications? Before my son was ill, I had no idea there were so many psych meds, or that hitting on the right one was often a system of trial and error. And then there are combinations and dosages, and the possibilities become endless. Each possibility has its own host of side effects.

Finding therapists, managing to get an appointment with a doctor, researching treatment facilities, plugging into outpatient programs…

And how do we pay for the care our kids need? Even if we have great insurance, it’s still complicated. If the insurance isn’t adequate, the process is opaque and frustrating at best, and heartbreaking at worst. Many resort to the juvenile criminal justice system just to get their kids into any kind of mental health pipeline.

Is it any wonder parents are battling against a paralysis of confusion?

What can help?

1) It can be perversely comforting to look around and realize that everyone else also experiences bafflement when navigating mental illness and its treatment. It’s easy to feel overwhelmed and incompetent (I feel so stupid- I don’t understand any of this!), but the truth is even the smartest people have to deal with the steep learning curve. And the curve doesn’t necessarily lead all the way up to expertise.

2) Educate yourself with good, reputable resources. There is a lot of information out there. A lot of it is not helpful or dependable. Get recommendations from mental health professionals for books. Check out the National Institute for Mental Health (government), National Alliance for Mental Health (advocacy), or Mayo Clinic (hospital) websites to start gathering information.

3) Ask God for wisdom and guidance. In our family, we received answers to specific prayer for a Christian therapist (in our own town, no less!), and a pediatric psychiatrist (only a half hour drive). These came from unlikely friend-of-a-friend type connections. Ask your praying friends to join you in these requests. God cares about the particulars of our situations.
Here are some Scriptures to reassure that God wants to give us wisdom and guidance when we ask:
“But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him.” James 1:5

“For You are my rock and my fortress; For Your name’s sake You will lead me and guide me.” Psalms 31:3

“I will instruct you and teach you in the way which you should go; I will counsel you with My eye upon you.” Psalms 32:8

“Your ears will hear a word behind you, “This is the way, walk in it,” whenever you turn to the right or to the left.” Isaiah 30:21

“But the Helper, the Holy Spirit, whom the Father will send in My name, He will teach you all things, and bring to your remembrance all that I said to you.” John 14:26

Do you have stories about how God has guided you through the mental healthcare maze?
Would you like us to pray for anything for you and your family?

#8 I FEEL LONELY

Illness can be isolating, whether it is our own or in the family. The world narrows. Mental illness is no different and is sometimes harder to explain.

When my kids were 14 and 12, I decided they were old enough to stay home without a parent for short periods of time. What freedom it was to sometimes go out for coffee with a friend, or browse through a shop for an hour. Because we homeschooled, we had a LOT of together time. I looked forward to transitioning into a stage where my kids were more independent.

But when they were 16 and 14, the situation had completely changed. My younger son was in the throes of deep suicidal depression, with frequent episodes of self-harm. We never left him home alone, nor did we place the burden of supervision on his older brother if we could possibly avoid it. My world narrowed again.

I was so lonely sometimes.

Many parents struggle with the isolation that comes from having a child who needs special care. It’s not unique to the mental illness situation. But there are unique challenges. It’s hard to find a “babysitter” for a teenager. It’s hard to explain why you brought your kid to the coffee shop when you manage to meet a friend, even if he’s at the next table with a book. It’s hard to disappear from your life for weeks at a time because of a crisis.

If invitations are declined often enough, they slow to a trickle and dry up. I’s disheartening to be going through a painful parenting journey and also have to be the one who keeps up communication with friends. It may be natural, but it can also leave you feeling unloved.
Forgotten.
Lonely.

For some parents, the illness can be so disruptive that they don’t want to have anyone over to their own home either. They can’t bring their kid to the coffee shop. Even family gatherings are fraught with chaos. Social media, far from being a blessing to connect us, can make us feel even more isolated. Posts and and pictures of other people’s “normal” lives leave us feeling like we’re locked inside, looking out into a world that is passing us by. The loneliness can be stifling.

What can help?

1) Support groups can be a lifesaver. These can be online forums, but groups that meet in person are more effective for combating isolation and helping members with challenges. Some resources to find a group are Hope for Hurting Parents, NAMI, and Al-Anon. Local Offices for Mental Health may also have groups.

2) Even though it takes so much effort, find ways to see your friends. Even a half-hour meet-up (while your kid is at an appointment maybe?) can boost your sense of connectedness.

3) It may feel old-fashioned, but email and letters combat loneliness better than social media. Don’t be afraid to write some and ask your friends to write back. They are your friends, they love you, and if you tell them your circumstances make you lonely and getting an email or letter helps, many will respond. Be careful, though, not to take it personally when someone doesn’t respond. They may just be terrible correspondents. It doesn’t mean they don’t love you.

4) Remember that the Lover of your soul is always with you. Here are some verses to assure you of God’s presence:

“God is our refuge and strength, a very present help in trouble.”
Psalm 46:1

“Where can I go from Your Spirit? Or where can I flee from Your presence? If I ascend to heaven, You are there; If I make my bed in Sheol, behold, You are there. If I take the wings of the dawn, if I dwell in the remotest part of the sea, even there Your hand will lead me, and Your right hand will lay hold of me.”
Psalms 139:7-10

“For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.”
Romans 8:38-39

#7 I WORRY ABOUT MY JOB PRFORMANCE/SECURITY

Have you experienced brain fog? It’s that mushy feeling in your mind making it hard to retrieve information, stay on task, form coherent sentences. When we are chronically stressed from taking care of our fragile kids, working through brain fog can be our best effort on the job. Add in distractions like phone calls from the school, memories of last night’s confrontation, or fretting over treatment decisions to be made, and you may be thinking even you would give you a bad performance review.

And that’s on the good days.

The bad days take you away from work altogether. They find you picking the kid up from school. They find you taking the afternoon to go to a doctor’s appointment, because the nearest pediatric psychiatrist taking new patients is two hours away. They find you taking whole days to get your kid settled at the hospital or residential treatment center and going through all the paperwork and family counseling sessions.

If you get paid by the hour, all that time eats into your take-home pay. Even if you have the luxury of a salary and some personal or sick time, your job performance and reputation can suffer. If you run your own business, you are in danger of letting too many balls drop.

No wonder so many parents whose kids have mental illness cite worry about the job as a major stressor.

What can help?

1) If you work in an environment that is supportive, take steps to communicate. Let your boss and co-workers know a little of what is going on with your family. How much you choose to divulge is up to you. If your work atmosphere is more cut-throat, you need to consider and pray for wisdom whether this step is best.

2) Recognize that worry for your kid is going to invade your thoughts. Expect it. When it comes, take a breath and acknowledge the distraction. Then practice techniques to help you minimize it and return to focus. Try a mindfulness exercise. Get up and walk around for a few minutes. Have a dedicated notebook where you write down a sudden urgent thought or to-do to get it out out of your head without the fear of forgetting to call that doctor or renew that prescription.

3) Analyze your work. Are there tasks that could be performed remotely if necessary? How can you delegate if you are called away by an unexpected crisis? Having a plan before the crisis helps immeasurably. It’s the equivalent to having a bag, stashed in the closet, packed and ready to go. Consider creating a document you can quickly email to boss and co-workers and updating it weekly.

4) Make sure you understand your rights and benefits. Develop a good relationship with people in your human relations department. If you are truly worried that your situation might jeopardize your job, find out the laws for termination. Find out what you would need to do for unemployment. Being educated gives you peace of mind.

5) Any steps you take to deal with your stress in a healthy way will also benefit your performance on the job. Enough sleep, some exercise, good nutrition and hydration will help your mind as well as your body.

6) When you pray and when you ask others to pray, don’t leave out your anxiety over your job. It’s important and deserves a place on your prayer list.

#6 I WORRY ABOUT MY MARRIAGE

“I’m ready to give up trying. I don’t want to care anymore. I’m ready to build my happiness next to you but not with you… I don’t know if this can be healed. I’m not even sure I would be up for it. I’m not saying we should end our marriage. I just need to be less desperately unhappy. If that means having no expectations of anything from you then maybe that’s my answer.”

This is an excerpt of a letter I once wrote to Dan. It was after years of constant stress, crisis upon crisis with our son. For most of that time, we had been an effective partnership. But the stress had taken its toll, and I came to the end of my rope. Dan didn’t have the inner resources to hold Nicholas’s rope and mine too.

I was deeply hurt and furiously angry, which pushed my husband away into self-reproach and defensiveness. He withdrew. I chased him with bitter demands. It was a mess.

It’s no secret that marriages can crumble under the pressure of parenting a child who needs special care. But we are not doomed to fail in our most important earthly relationship. We can shore up our defenses.

Further down, the letter read this:

“In my Bible reading the other day, Jesus said that to follow is to deny oneself, take up a cross and follow Him. So I am going to try. I just hope that eventually you will not want to be a cross. If Jesus matters to me then I have to try to keep my vows to you.”

I didn’t know it at the time, but along with the bitterness flowing from my pen came a thread of truth, of hope. The beginning of healing for our marriage came when I stopped looking at all Dan was or was not doing, and focused on following Jesus.

At first it was an angry throwing up of hands, giving up. But under God’s ministration it morphed into surrender, enabling an eternal perspective, and eventually, a compassion for my husband.

I never gave Dan that letter, although later I showed it to him, after a lot of counseling and working on reconnection. Writing it didn’t save our marriage. It helped me see what was going on in my own heart. It opened the door to God’s work in me.

Every marriage is different, but there are some actions that can help in nearly every messy relationship:

1) Get help from a godly counselor. Sooner than later.
2) Acknowledge the stress of caring for your kid with mental illness and recognize the toll it can take on your marriage.
3) Place your confidence in the only One who can bear the weight of your expectations. That is not your spouse.
4) Pray with honesty abut your pain, write it out in a letter (unsent), cry and grieve over the fractures in your most important earthly relationship. Don’t deny the hurt; process it.
5) Practice kindness and compassion for your spouse, especially when you don’t feel like it. Believe it or not, he is going through this too.
6) Be careful and wise about venting. Confide in those who are the cheerleaders and supporters of your marriage. I’m not advocating putting on a happy face and pretending all is great. Just choose your close confidants with caution.

Dear friends- this is such a hard one. If I can pray for you in a struggle with your marriage, please leave a comment or contact me through my website kirstenp.com. I would count it a privilege.

#5 I WORRY ABOUT MY OTHER KIDS

“She sleeps over at a friend’s house every weekend so she doesn’t have to be home with her brother.”
“I had to install locks on their bedroom doors so they could protect their own stuff.”
“I heard him crying after his sister said hateful things to him.”
“She was gong through a really hard time at school, but didn’t tell me, because she didn’t want to give me more to deal with.”
“He’s lost his sparkle and hardly talks to the rest of the family.”

When one of our kids has a mental illness, a large portion of heartache is reserved for the way the struggle affects our other kids. Depending on their personalities, they might act out or withdraw, become the “good kid” or rebel.

Mental illness in one family member affects the whole. Our other kids are dealing with so many mixed emotions. They love their sibling who is ill, but also resent the attention and chaos the illness brings. They want to support their obviously distressed parents, but also want to hide from the situation. Their own real needs for love and care may be neglected or put on hold during a crisis, and they understand, but…

And even though caring for the ill child seems all-consuming, we parents agonize over the effects on the others. We miss the cuddle time, the one-on-one outings, the cheerful family dinners that aren’t happening to make their lives full of parental love. We wonder how being raised in less-than-ideal circumstances will affect them in the long-term.

What can we do?

1) Consider seeking counseling for your other kids, so they can process, vent, and learn how to be healthy themselves.
2) Try to spend one-on-one time with each of them when you can, even if it’s only a walk. When our younger son was in the worst crisis years, our older son Alex was finishing high school and starting college, commuting from home. It took him a long time to get his driver’s license. While it would have been a lot more convenient for him to be able to drive himself to and from campus the first year, I now think of it differently. Maybe God knew he needed 20 minutes of uninterrupted time with a parent twice a day, just to chat and for us to listen.
3) Pray. Ask them what you can pray for them. Tell them you are praying for them. And pour out your heart to God on behalf of all your kids.
4) Remember that God redeems loss. Alex lost some of the personal attention I would have loved to give him. But God gave him unexpected blessings in return: the “gift” of a mom who needed support. He learned an empathy which didn’t necessarily come naturally to him. God can do something like that in your kids’ lives too.
5) Trust that God loves your kids and can work all things together for their good as they choose to love Him and He calls them to His purpose. (Romans 8:28) The same God who sustains, strengthen, teaches, and molds you is for them too.

Can I pray for you or your family in any way? Please leave a comment or reach me through the contact page on kirstep.com.

#4 I AM EXHAUSTED AND BURNT OUT

It may not be the worst pain, but it is the most persistent. Exhaustion. Burn-out. Sometimes it’s physical, sometimes emotional, and often both. We pay out energy in every direction. The extra appointments squeezing our schedules. The toll of agonizing decisions. The energy spent trying to respond well to crisis and conflict and chaos. The loss of sleep to grief or worry.The neglect of healthy habits in favor of comfort food and escapist TV (maybe that’s just me). And it all just seems to go on and on.

Dear friends, there are many places to find advice and even help in caring for yourselves. One of my favorites is an organization called David’s Refuge, whose mission is to care for parents whose kids have special needs or life-threatening illnesses. Their goal is to assure these parents of three truths: You are not alone. What you do matters. God loves you.

Maybe you need and can get help from a wonderful organization like David’s Refuge, and be renewed, refreshed, and pampered for a bit. But even a welcome respite is just a taste of what is available to you. Yes, an overnight retreat can rest your body and soul, but the real value of any self-care or comfort given by others is that it points to the unlimited love and compassion God has for you and your child.

He knows. He sees you. You- with your eyes red from weeping and sleeplessness, your stress headache, your hair in desperate need of a cut and style, your extra pounds (maybe that’s just me), your shortened temper.

God loves you.

What can we do?
• Look for and seize those opportunities for rest and refreshment. Read the self-care articles and try to put one or two things into practice. Look for people or organizations that can help. Ask friends and family.
• Nurture your soul: read, do crafts, hike. Just a little of something you love.
• Make sleep a priority. I know, everybody says it. But really. Do it.
• Also, Kirsten, try to eat right and move your body. (And anyone else. But maybe it’s just me.)

These are all good and necessary strategies for dealing with our exhaustion and burn-out. But the biggest thing I have learned is that my deep weariness comes most noticeably when I am carrying loads that are not meant for me.

Jesus said,:
“Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. For My yoke is easy and My burden is light.” Matthew 11:28-30

Sometimes this passage is used to induce guilt: “If you’re tired, you must not have enough faith!” Jesus was not saying that at all. He became tired. He sought rest in lonely places, away from crowds. He collapsed on the way to Calvary. He had perfect faith, and that cross he dropped was certainly the burden He was meant to carry.
Jesus offers, not a saccharine promise of an easy life, but the true sweetness of rest in Him. He knows we will be weary and burdened. But He lifts the heavy end, He leads us to the oasis, He binds our wounds. He walks with us. And He promises that it all matters to Him.

I pray for each of you rest in the long journey.

#3 I CAN’T GET MY KID THE HELP THAT IS NEEDED

I learned in a webinar the other day that there are only about 8500 pediatric psychiatrists in the U.S. Since I was familiar with the statistic that about 8 million adolescents between the ages of 13 and 18 suffer from mental health problems, I found the small number of doctors hard to believe. Yet a quick search yields the same alarming fact from such sources as the American Academy of Childhood and Adolescent Psychiatry, the Washington Post, and Psychology Today. Most family doctors are not trained to handle these issues, and can only refer. Some areas of the country have almost no coverage at all.

Almost as hard to find are counselors and therapists. Still harder are those trained in the best evidence-based treatment for certain illnesses, like Dialectical Behavioral Therapy for those with Borderline Personality Disorder. When a kid needs a higher level of care, finding a bed in an appropriate hospital can involve a long wait. Finding a treatment team who takes your insurance can be a huge issue.

IEP meetings and follow-up meetings to ensure the IEP is being implemented can be a nightmare, depending on the school and the training and resources of the staff. It can all add up to the overwhelming conclusion:

I cannot get my kid the help she needs.

That frantic feeling of helplessness can break our hearts and crush our spirits. Society and the medical profession have let us down. Teachers and administrators can seem like enemies. We can even be tempted to believe God has abandoned us in our dire need.

What can we do?
• Network: Call people you know in the medical field and ask for advice. We were eventually able to get an appointment with a pediatric psychiatrist in our area through the personal request of a doctor friend of friends.
• Get in touch with advocacy groups like National Alliance for Mental Illness (NAMI) who can give information and advice about mental health care in your area.
• Find out about resources through your local Office of Mental Health. Between the ages of 14 and 18, our son made use of four different long-term programs through our county.
• Ask other parents. Support groups are great for this, but even just approaching someone can yield a wealth of often hard-won knowledge. Sometimes you can go to a pastor and ask if there is someone in your church who has been through it with their child. The pastor can ask that person if they would be willing to talk to you. This method works with other friends and groups too. Many people “know somebody who.”
• Pray and Trust. This one may seem like the least practical item on the list, but it the most powerful. Trust in God’s goodness. Believe that He loves you and your child and cares what happens. Know that He is able to accomplish what concerns you. Don’t give up, but follow every lead, trusting that He will guide you to the right path.

“Though I walk in the midst of trouble, You will revive me; You will stretch forth Your hand against the wrath of my enemies, And Your right hand will save me. The LORD will accomplish what concerns me; Your lovingkindness, O LORD, is everlasting; Do not forsake the works of Your hands.”
Psalms 138:7-8

Can I pray for you while you seek the help your kid needs? Leave a comment or contact me through the contact page at kirstenp.com

#2 I FEEL DEFEATED

I had a recurring fantasy. If I happened to be by myself with the car (which was not often), I could picture it. Stopping at the bank and withdrawing the maximum amount. Going to the gas station and filling the tank. Popping into the grocery store and stocking up on unperishables.

And then just taking off.
Disappearing.
Giving. Up.

I had tried and tried, fought and fought, but was still losing the war. My kid’s mental illness beat me at every turn. I felt so defeated.

Years ago my husband and I attended a workshop called Growing Kids God’s Way. We didn’t agree with everything in the program, but we learned some helpful lessons. Mostly, it helped us decide we wanted to do this parenting thing with and for God. And ever so subtly, we swallowed the idea that if we did everything right and tried hard, we would win at the parenting game.

But then came depression, self-harm, hospitalizations, suicidal ideation, then attempts… How were people of faith supposed to parent a kid with mental illness? We didn’t even know what winning looked like anymore, but we sure knew what defeat felt like.

What can help?
• Change the definition. When I knew, deep down, that to God winning at parenting meant faithfulness and not a “successful” outcome, everything changed. My sore heart began to mend. Keep walking, depending, and trusting in God. Faithfulness is victory.
• Take a break from social media, especially around Mothers and Fathers Days or graduation.
• Enjoy small moments of joy or progress.
• But don’t take the blame or let your peace be destroyed by setbacks. Even when you-know-what hits the fan again. Lack of crisis is not victory. Faithfulness is victory. One step in front of the other.
• Let your soul soak in this instruction and assurance: “Therefore if you have been raised with Christ [to a new life, sharing in His resurrection from the dead], keep seeking the things that are above, where Christ is, seated at the right hand of God. Set your mind and keep focused habitually on the things above [the heavenly things], not on things that are on the earth [which have only temporal value]. For you died [to this world], and your [new, real] life is hidden with Christ in God.” (Colossians 3:1-3 Amplified Version)

You belong to the One who faithfully walked this earth, who had “success” with very few, and who now lives, making all this stuff work together for our good.

Faithfulness for the win.

#1 I DON’T KNOW WHAT TO DO

The warrior stands on the crest of a hill. Although already wounded and tired, she is committed to the cause and ready to rush to the defense of her people. On her left, the valley is filled with the sounds of mayhem as her people are slowly pushed toward the raging river. Looking to her right, she sees her people losing the high ground as they are overrun by strength of the enemy.

Which way should she run? Which battle needs her most? Which strategy will win the war? Which decision will prove a disastrous mistake? Choosing is impossible, but not choosing is unthinkable.

I don’t know what to do.

Of all the painful feelings experienced by parents whose kids have mental illness, this is the cry that sounds most often.
Do we go to the emergency department? Which one?
Do we try this medication, with these side effects? Or that one, with those?
Do I call the police?
Should we keep her in school? Which school?
So many choices, and often all of them seem bad.

For us, the hardest choice came when we had to consider sending Nicholas to a residential treatment facility for a year or more. By the time we reached that decision-making process, I was unsure of my own judgement. I knew that I felt it was not the best thing to do, but I didn’t know why I felt that way. Was I thinking rationally? Could my instinct be trusted? In the end, he did not go, because we had finally hit on a combination of med cocktail, therapy, and maturity that enabled him to be stable and move toward wellness. But it was possible that it would not have gone that way- that we would have kept him home and lost him to suicide. Of course, we could have sent him and lost him anyway.

My heart aches for all the moms and dads out there who have to make the hard choices with no guarantees. Feeling so helpless to succeed at the thing that matters most. Bearing the crushing weight of responsibility. Depending on a roll of the dice when the stakes are so high.

What can help?
• Recognize that all the choices may have flaws and there might not be one that is the magic bullet.
• Do the best you can and let the rest go. Forgive yourself for not being able to keep all options open.
• If your choice yields difficult consequences, remind yourself that the others probably had equal dangers. You don’t actually know what God has protected you and your kid from.
• Practice, and practice again, bringing your agonized worry to God.
“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7 NASB

“Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need.” Hebrews 4:16 NASB

Go to that throne every day, every hour, every minute if you have to. The way is always open and you will always be welcomed. God is wise and He is able. He loves you and yours. Entrust yourself to His tender care.

Can I pray for choices you are facing right now? Please leave a comment or email me through the contact page at kirstenp.com.

 

Book Homes

A part of one of the dozen-plus bookcases in my home.

Books have always been one of my great escapes. I was the kid who brought a book to the Superbowl party. My math teacher routinely confiscated books during class (I wasn’t as sneaky as I thought), and returned the stack on Friday. When I spent months in a hospital with Crohns Disease at age 14, I slipped away from the pain and homesickness in the deeper home of my books.

Three decades, my heart was in a hospital again, a piece of it anyway, the part that is called Nicholas. Books came to the rescue again. I went back to old favorites, because I needed to make sure they would do their job- uplift me, rather than bring emotional upset. My emotions were already plenty upset.

Here is some of my reading list from that time:

All Creatures Great and Small by James Herriot, and then all the sequels.
At Home in Mitford by Jan Karon, and then all the other Mitford books
Gilead by Marilynne Robinson

Although I preferred to read to escape, I also read to help me with the steep learning curve of parenting a kid with mental illness. There are many, many books for this. Some that helped me the most:

You are Not Alone by Dena Yohe
The Novelist by Angela Hunt (this is fiction exploring the parent’s heart when a young adult son first develops a mental illness- creative and healing)
Stop Walking on Eggshells by Paul T. Mason and Randi Kreger

Full disclosure: I also watched a lot of TV. I remember watching many episodes of Bones, which ran in 3-4 hour stretches during the times in between visiting hours. All those experts and interns became my TV friends.

How about you? How do you escape and soothe when things are overwhelming?

Rest Day Party

Feast during Rest

The first time, they didn’t believe it. They tried to stock up on what they thought they’d need. They must have been afraid as well as disgusted the next morning when instead of breakfast, they found slime and maggots. God had told the Israelites He would feed them, day by day. But they didn’t trust the next day’s provision. They gathered extra and stashed it away for the next day, in case He didn’t come through for them. He spent the next forty years teaching them to trust and obey.

Trying to live on yesterday’s strength is like trying to live on yesterday’s manna. We need to access God’s power every day, for that day’s struggle. Except, except…

There was one day of the week when the manna stayed fresh overnight: the rest day. I wonder if that day made them afraid too. No new manna on the ground- what did it mean? What about when the extra was used up? Would there be more after the rest day?

Sometimes we also are given a rest day from the struggle with our kid’s mental illness. Sometimes even a whole rest season comes our way. Can we trust God enough to enjoy it? Can we pull out the stash of strength God provided in the “working days” and feast on His goodness? The storehouse of memory becomes the making of rejoicing, a party. The celebration requires that we believe, from the witness of our memory, that strength will be provided again when we need it.

I have a litany from my memory storehouse that I rehearse when I start to fear that I can’t make it through another crisis again:

• God sent people with encouragement, empathetic tears, or information at just the right times.
• God provided Scriptures and the presence of Holy Spirit.
• I discovered that even the path through the valley of the shadow of death is holy ground, because my Shepherd is with me.

The same God who walked us through the past nightmares will walk us through anything coming in the future. Fresh manna will always appear until we are safe in the Promised Land.

Friends, I hope if you are in the “working days” and you are weary, that you will find your manna for the day. I pray that you will soon have a rest day.

When you do, party on.

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