How You Do It

Time wound down towards the end of my therapy session. I hadn't had to cancel this one for an emergency, which was rare and lovely. As I began to pack up my things, he looked at me, took a deep breath and said "I'm going to refund your money for this session. I just can't charge you for it. I don't know how you do it."

I don't know how you do it.

Those seven words.

How often have I heard them over the years? Daily? Weekly? Hourly? I guess it has depended upon the season, the level of relentless impossible parenting we are experiencing.

The past two months have been the hourly type of stretch. I have heard those words from doctors, therapists, friends, parents.

I have said them to myself, then taken a deep breath and kept going. Because here is the honest truth.

The quick answer is that you don't. You don't really. There's no choice to do it or not. You just wake up and, to be honest and raw, get the shit kicked out of you for about 12 hours straight, try to reset as best as possible in the evening while worrying about all the things you couldn't accomplish that day, sleep too briefly and start over again.

The only other options are committing a felony or leaving. I'm not exaggerating. That's what it's like.

Normally, when people say those seven words, I just shrug and say "you would do it if it were your life." Which is the trut- most people would. While there are things we can pick and choose, decisions we can make to steer our life in a certain direction, there is also plenty that is out of our control. Some people want to get married and never do. Some people want a child and can't conceive. Some people envision family life the way it's portrayed in the movies and end up with a chronically ill child. Some people have dreams for a career and life and get stuck in a cycle of poverty because of medical bills or job situations or natural disasters.

The illusion of our choices being completely our own - well, it's just that. An illusion. Our only real choice in life is how we react to what is happening and what choice we make in the aftermath. That is literally all I have control over. And, sometimes, I don't even have that. Sometimes I am just too tired, too done, too overwhelmed to choose a healthy reaction. We all have those moments.

I don't write this to ask for sympathy or pity. The thing is that we all have something, at some time or another, that someone else cannot imagine handling. Loss, grief, addiction, illness, divorce...we could all list a time when we knew it was too much for any one person to handle, but in that moment, we did. A friend of mine recently shared the story of the stillbirth of her son and I could not imagine having gone through what she went through and having come through the other side. She did, though. Unscathed? Of course not. But she did it.

I write this because we all "do it." We look at others and think they have it all and then find out they have "done it." The bible says that in this world we will have trouble but that we should "take heart" because Jesus has overcome the world. At its core foundation, the "doing it" is an act of audacious hope. That life might get better, that we are not alone in the hardest moments. That Jesus knows what it feels like and hasn't left us out to dry or told us we have to dry our tears or suck it up.

Do I know if anything will change?

Nope.

Do I go to bed dreading the morning a lot of the time? Wishing that I could sleep for 24 hours and see if I might feel better?

Of course.

But we wake up. We do it. We work. We play. We remind ourselves of the truth. We love, even in the most unbelievably exhausting circumstances.

And we choose how to react to it all, when we can. We can choose honesty and rawness and even find gratitude in the days that seem to hold nothing for which to be thankful. And in that choosing, in the doing it, in the perspective, even when we cannot see what's happening, God is at work. Molding our story to encourage someone else. Slowly healing the places in ourselves and our families that we cannot or will not see.

When I head back to my next therapy session in a week, I'm going to hand him this blog and tell him to keep his money. The refund only made me wonder how I possibly COULD keep doing it. And the reality is that I can't. Not alone, not really. That's why I am in therapy. That's why I have friends and family I ask for help. That's why I wake up in the morning before I have to parent, sip my coffee and find perspective for the day in prayer and writing and scripture and song.

That's how you do it, friends. One minute, one step, one choice at a time of how to respond to life, even in its most vicious and relentless moments.

We were never promised ease.

We were just promised we aren't alone in the doing.

The Full Time Job

At some point this spring, I remember a moment when my husband looked me dead in the eye and told me "you have a full time job right now, you know that?"

He wasn't referring to motherhood.

He was referring to advocacy.

To the hours upon hours of research and phone calls and office visits and emails and texts and thoughts and strategies and desperate prayers that go into trying to find answers for a special needs child.

And as my son sleeps upstairs right now, I have spent the entirety of his naptime, yet again, on the phone fighting with doctors. Cursing insurance companies and how little they give a rip about kids like mine. Trying not to lose hope that someone, anyone might be able to actually help us.

I am just trying to get him from one day to the next knowing that there is no hotline to call when your child is destroying his room. When he's been screaming for five hours straight. Again. When your husband can't even go to work because you have more than one child and your other kids need to be parented while the other child needs one-on-one parenting every waking hour. And the other kids need not just to be supervised but reassured of your love, that this will get better somehow. To be given quiet and peace and fun opportunities that the other child simple cannot handle.

Friends, the life of a special needs parent is completely exhausting. We can't just "call a babysitter" and take a break. Self care? Really? The next person who tells me to take care of myself needs to offer to figure out a way to watch my son so I can actually do it. So my husband can actually do it. Right now the only way we can is after he's in bed at night. And by 8 pm, WE HAVE NOTHING LEFT TO CARE FOR. Really, it's just bedtime. But oh wait...there is the house to clean and the laundry to do and the bills to pay because nothing else can get done during the day.

Friends, I don't write this to ask for sympathy or advice or answers. I am literally turning over every stone I can imagine to get answers and help and I have fellow warrior mamas cheering me on. Our mental health system is deeply broken. Our insurance system is deeply broken. I honestly don't know if we'll ever find the right answers but I also can't stop fighting.

I am writing this because there is probably a parent in your life who is drowning. Who spends all day, every day searching, praying, pleading for answers and help and ending the day exhausted and alone again. And, most likely, consumed by guilt for what they can't give their other children.

Can you help? Can you drop off a meal for them? Can you take the other kids somewhere fun? Or figure out a way to watch their struggling child, even if it means it might be incredibly unpleasant and risky for you?

I had literally no idea how hard parenting could be until I had a child who didn't fit the "norms." I had no idea how all-consuming it could be, the strain it could put on a marriage, the ways it could reduce you to hopeless despair. I wish I had done more for my friends who were IN IT before I was but I just didn't know what or how to do it and I didn't fully understand how exhausted they were.

Friends, will you take a risk this week and ask a mom who is crying in her car what you can do to help? Or just surprise that dad who is totally overwhelmed with his favorite treat to eat once those kids are finally in bed?

This is a deeply lonely struggle, and every little reminder that someone sees, cares and isn't judging us is an extra heartbeat for our day.

Five

The first time I heard the term "spirited" to describe my son was at his 1 year-old check-up. The pediatrician looked me in the eye and said "Listen...this is a good thing. Some day he will be a leader, he will do amazing things. But the toddler years? They are going to be impossible."

SHE. WASN'T. LYING.

If you know anything about our story, you know we have been through some ups and downs over the past number of years. That we have been on this endless search for answers to how to best love and help our child who lives life bigger than most people around him can handle. Who feels hard and expresses it. Who is loud and chaotic and huge and never, ever for one minute of being awake stops moving or talking or emoting. Who has a list of food issues that prevents us from really ever going anywhere social. Who needs a certain intense amount of tactile and auditory input to function well but if he gets too much flies over the edge on a dime. It's been exhausting to learn and fail and learn and fail and learn and fail again.

But one other thing she said to us and that has been repeated by a number of professionals over the years is that things might change at the age of five. That maybe some of the allergies and sensitivities will lessen or go away. That some of the chaotic struggle that defines a large portion of our interactions will become milder. That we will have, in a sense, come through. That things will be on the upswing. Not easy or solved, but manageable. (Until the teen years, of course. No one ever promises you anything positive about the teen years.)

And so for 3 and a half years I have had that number in my head. FIVE. We can make it to five. Even on those worst of days...when there have been hours of meltdowns and tantrums, when we have had to pull him from school and church is impossible and our other kids are being affected and we are feeling like failures...and we wonder if the next public meltdown will result in some well-meaning person calling CPS on us...FIVE.

We can get there.

And then over a period of a few days, we get some new diagnoses.

And suddenly, five doesn't mean anything. In fact, there is no new number. There is just reality.

The reality that this will likely always be hard. There might always be therapy. People will suggest meds and judge you for doing them while others judge you for not doing them. IEPs and 504s will now be a part of your life. School will not come easy. And the fighting and learning you have been doing for almost 4 years will continue. Possibly right up until he moves out as an adult. And, because you are a parent, even at that point, you will worry. How will these things affect college? Or his career? Or his relationships? (And today I cannot even get into the side of this that is further complicated by his beautiful black skin and how he will never be given second chances at anything in a world that will start to, any day now, fear him. That's a WHOLE other blog post that my heart can't do today.)

When "spirit" turns to something more and you have been holding on to the promise and hope of relief, it feels like a sucker punch, friends.

Many of my blogs end with some hopeful plan I have devised. Some way I have realized or seen God in the midst of things. But right now, friends? Right now, I really don't have much more to say. We got the diagnoses and then family visited and then my husband traveled and this is the first moment, almost two weeks later, that I have even had to wonder what I am thinking or feeling. To ask what's next. To figure out from where the fight is going to come when I feel so worn down.

As he melted down this morning and I slumped against a wall in exhaustion before 8 am had even hit, I remembered a bracelet that my dear friend gave to me a few months back. It says "We can do hard things." I ran to my room and put it on and read the words and shot her a quick text with those words and asked her to pray. I repeated "I can do all things through Christ who strengthens me" over and over and over until I believed it.

And I realized that I had to sit down and write today - to say the words out loud that I can do this, even though I don't know how and don't have a plan. I had to let go of "FIVE" and mourn its loss, even though there isn't anything with which to replace it.

I suspect in the coming days, God will point me to something. He will use a friend to speak life. I might permanently glue that bracelet to my arm, for goodness' sake.

But today, I come in honesty and say that I am sad and tired and hurting. I want so much for my son to have a good life, a life that is full of love and laughter and joy and hope.

And I don't, at least today, how how to give it to him.

That Deeper Story

You don't always know it when you look at them.

They smile. They pick their kids up and cover them in hugs and kisses. They read them books before bed and help them build towers and tell them to dream dreams.

Most likely, they are exhausted.

If not from today, from yesterday or last week or from years and years and years.

From the 20th phone call this week with a teacher or a therapist or a doctor or someone from the insurance company.

From the long lists posted on their pin boards or kitchen cabinets or fridge. The lists of forbidden foods, of rigid schedules, of sensory diets and supplements. The food logs, the oils, the salts, the reminders to pull out the theri-putty or weighted blankets and to never, ever forget to go over tomorrow's schedule before bed.

From "divide and conquer" parenting that protects siblings from the chaos but can wreak havoc on a marriage.

They might look unflappable or they might have eyes welling up in tears.

And you might not know why. You might look at their children and not know there is anything different.

Or you might look and judge- why is that child screaming, don't his parents know how to discipline? Can't she act her age - spoiled brat. You don't always see the child, you don't always remember to believe there could be a deeper story. Everyone has one, though.

Don't you?

But what if you met that child's eyes and smiled. What if you squeezed that mama's hand or offered real words of encouragement to that exhausted dad?

No, not the empty kind. Not "you are a good mom" or "hey, it gets better."

Sometimes being called a good mom comes up empty. Who decides that definition, anyway? And to be honest? Who really knows if something will get better, easier, less intense?

No, say something real, for goodness sake.

"That seems so hard. I would love to help. What do you need right now?"

"Hey, I'm bringing dinner tomorrow night. What's that allergy list again?"

"It's ok to feel like this is impossible. I love you and you're not alone."

They might not have much energy to be a great friend right now or to even return phone calls. (In fact, sometimes the sound of those phone calls makes them cringe. Is the school calling? What now?)

They might be just hanging on by the skin of their teeth, fighting each day to give their kids the best of what they have left.

But fight they will. They are warriors. They see the deeper stories of their children and they won't give up. 

And their kids? Their kids are amazing.

They might not always look or act like yours do. But they are beautiful. Passionate. There are things that move them, that light them up. Sometimes their smile can totally change a room. Sometimes their screams can stop you in your tracks. But they are precious. Loved. Worth fighting for.

Next time you see one of them, take pause before you judge. Before you dismiss or assume. Before you cast words of shame upon them or their parents.

There's a story, there. And it's worth sticking around for. I promise.

Bounce Back

There's this time every night that happens like clockwork.

All of my kids have been asleep for awhile. No noise. The dog is snoring quietly on the couch. I'm finishing up emails or cleaning up from the day. Husband is working on dishes. It's almost time to start winding down for bed but for a few precious minutes, I am just alive.

And no matter what kind of day I have had, no matter how much screaming or how many meltdowns or how many times I've been pinched or kicked or punched, no matter how few minutes of quiet or calm there was in the day, I reset.

I call it the "bounce back."

It's that moment when I remember that tomorrow is new. That there is hope. That my life won't always be this loud, this out of control. That day by day we will figure out the special needs of my middle child and continue to learn how to meet them. That my other two will survive until we do.

It's one moment every day where I take a breath and say "I can do this again. I can."

Last night was different.

I had walked into my toddler's school for pick-up on his first day and could hear him losing his mind even though I was around the corner and his classroom door was shut. I peeked through the window and saw him sobbing on the floor under a table. I sighed. I braced myself, knowing that to get out of there with him and his little brother in tact, I'd need all my wits about me and an extra measure of arm strength. It ain't easy carrying a 40+ pound toddler in one arm and a 30+ toddler in the other, especially when one is totally unhinged.

I walked in, already ashamed. Already embarrassed. Already sure that he had probably treated his new friends poorly. Aware that there were other parents trying to pick up their smiling kids while mine made a scene in the corner. Trying to avoid their gaze, their stares. Hoping he hadn't hit their kids or if he had that no one was hurt.

Tired. Oh so tired of this.

We managed to get home, somehow. And later that day, he was asleep by 6 pm after a short nap and a rough afternoon.

And as I sat on the couch last night after the other two were asleep, the moment didn't come. I just felt defeated. Sad. Exhausted. And fell into bed, to the sweet oblivion of sleep.

People like to say "hey, you know this will pass" or "toddlers are terrorists" or "when they are little it's little problems, when they are bigger it's big problems so savor the little." The thing is, I don't know for sure that it will pass and it doesn't feel like little problems. And I don't like living my life based on a possibility that it will get better. It might not. There are no guarantees. It has been two years. TWO YEARS of screaming and meltdowns and defiance and injuries and isolation.

And let me be clear. I'm not looking for advice. We are still in the midst of lots of dietary changes, we just moved across the country, his teacher ended up NOT being there the first day of school and my son had to roll with a stranger we had not prepped him for. I should have expected the bad day. Especially after a weekend where we had people staying with us and messed up bedtimes. We know better. Sometimes I just can't handle the routine, the regimen, the sheer inability to do anything that might upset or mess his day and I say yes to actually having a life occasionally. But, there's no breathing room when I do. He can't handle it.

There was no bounce back last night. I woke up sad today and wondering if he's going to get kicked out of preschool. And hurting. Feeling so isolated in this. Tired of explaining to new people why he is behaving like he is. Tired of being embarrassed that he peed on the neighbors lawn (the ones we haven't met yet, of course.) Resentful that every day revolves around making sure we have the fewest meltdowns possible so that my other children don't end up with PTSD.

This morning, I walked my son in to school. We have been shamed before in these situations and I could feel myself tense up, waiting for some kind of warning or reprimand about my parenting.

"Nate! Hi! We're so glad you're back."

I looked at them and they smiled. "We've got this. He's a sweetie. We're going to love on your little boy and he's going to have a great time. Don't worry."

They could have said so many other things, but they didn't. They spoke life into my son. Which spoke life into me. They aren't going to give up on him too easily, at least.

As I sit here, he's asleep. My oldest is due back any minute from school and I am trying to muster up enough energy to greet him with a smile. He needs that. He SO needs a mom that looks like she did bounce back last night. And maybe I will tonight.

In the meantime, friends, do something for me.

Remember us the next time you see a mom who looks defeated. She might feel completely done. You don't know her story. Just pray for her. Or offer her a hand. Or a word of encouragement. Try not to stare. Don't say anything trite about it passing soon. She might not have gotten her bounce back last night. She might need a stranger's smile to give her what she needs to get through the rest of her day.

Do it for me, please. For my son. And all the other parents in my life who are going through this same thing for various reasons.

We love our kids but this journey can be so very, very hard.

The Take Charge Challenge

There is no fancy way to introduce this topic.no perfectly illustrative story.

There is just the truth: I, like many people I know, do not take care of myself. I know this. I see it. I feel the effects of it. And I keep thinking, next week I'll do better. Eat more food. Somehow exercise. Drink more water and less coffee. Carve time out to sleep more, read more, write more.

But the bottom line is: there is not going to be any time in the near future when my day suddenly has more hours. 

And friends? I am SO tired of being tired. 

As I sit here during the beautiful quiet of the nap overlap, that time of day when I usually inhale whatever food is closest, drink whatever coffee is sitting in the pot from this morning and try to get dinner in the crockpot, I can see it all. I can see the mess of a life lived without regard for the long term effects on my health: physical, mental and spiritual. I can see my irritability from lack of sleep and exercise. From too many frozen pizzas scarfed down in less than 10 minutes. From the wear and tear of tantrums and noise on a sensory defensive mama. From too many hours spent on facebook and not enough in face to face contact with other human beings. From not enough yeses to the things that make me whole.

So, I am issuing a challenge to myself. Today, in this season where we are working out details for a cross-country move, when life is not going to be any less chaotic or more stable for a long time to come. 

I am issuing a challenge to take charge. To stop lamenting and dragging about exhausted and to, for the love of all that is good and holy, do something about how I feel. 

Anyone else want to join? 

Here's what it's going to look like: 

Every day for 15 days, this is what I'll do:

(1) COFFEE? WHAT COFFEE?: Drink a glass of water when I wake up. BEFORE coffee. And every other time I am tempted to reach for coffee, drink a glass of water first. I am so over-coffeed, I treat it like Jesus some days.

(2) POOP ON SOCIAL MEDIA: Check facebook once in the morning, once in the afternoon and once at night, for five minutes each time. Done. No more social media ruling my day. (See my post from a few years back about Choosing Real Life )

(3) SMART PHONE, YOU PUNK- I truly think getting a smart phone may have been the dumbest thing I've ever done. I feel it's tyranny, it's accessibility. And when my kids are awake, I'm putting it down for these 15 days. They deserve better than my distraction.

And besides those things, those disciplining of areas I know are unhealthy to my soul and body, I am doing one mental, one physical and one spiritual exercise that has nothing to do with taking care of all the little people. EVERY DAY. And yes, I realize that all these areas bleed into one another. That you can't really separate them. But, for the sake of order, I am going to. And maybe some days I will only do 2 out of 3 because there won't be a nap overlap or there might be a sick kid. But I will at least think about it. I will at least try.

Here is a list from which I might choose: 

MENTAL:

• Read a book for fun DURING THE DAY for at least 10 minutes.
• Write a blog post
• Write a book
• Write down my hopes/dreams for this new stage of life
• Organize something (don't judge me)
• Call a friend on the actual phone
• Write notes to far away friends
• Garden

SPIRITUAL:

• Practice 10 minutes of silence
• Journal
• Read my bible
• Read a fantastically encouraging book about faith
• Write a song
• Sing by myself for no reason other than to worship God
• Pray for my husband
• Breath prayers

PHYSICAL: 

• Run a few miles
• Bike 
• Take a dance class (or just, you know, dance it out to my tunes while everyone is asleep)
• Take an actual nap
• Pull ups and push ups
• Mow my neighbor's yard
• Take a walk with a friend
• Lay in the sun and breathe deeply
• Play volleyball at the gym
• Eat a vegetarian lunch

Obviously, these lists aren't exhaustive. I'd love to know what YOU might do if you take up the challenge. 

And here's the deal - you probably have different areas you need to discipline, different ideas of what is life-giving, of what changes will actually help you find yourself in the midst of a chaotic life. Go for it. There is no rigidity to this, just commitment.

What is it they say? Misery loves company? Well, so does hope. 

So today, I am standing up and saying, in hope, that even in the midst of one of the busiest seasons of my life, I know God doesn't want me to become unhinged. I know he wants me to function as an actual human being, loved and created in His image. Today I say, "enough is enough" and stop making excuses for my unhealthy choices. 

Anyone want to join me? 

The Longest Year

War movies are my favorite genre of film, particularly those telling the various different angles and fronts of the Second World War. I love the new ones and old ones alike. Anyone who shares this passion has likely seen The Longest Day, maybe the most classic movie out there about D-Day. And, frankly, one of the longest. It tells the events of that day from both Allied and German perspectives - and from most perspectives, it was a day that never seemed like it would end.

This has been our year.

From the moment our middle child learned to crawl, life has been a battle. You name it, it's a challenge. Diaper changes, leaving ANYWHERE, getting dressed, brushing teeth, not getting exactly what he wants in the exact moment that he wants it and sometimes even getting exactly what he wants in the moment that he wants it, because, toddlers. We have changed his diet, sought professional help, tried to chart the things that trigger him the most.

Many days, it seems like being awake is the only trigger he needs for spectacular, screaming, violent tantrums. ALL. DAY. LONG.

And friends? I am exhausted. When you pile on sleep deprivation from an infant and the wonderful, but tiring world of a nine year old who has a thriving social life and extracurricular interests, there is just not enough of me. With a toddler who can wear out both of his parents within an hour of waking, it seems hard to have hope that we can ever be sane again.

We had two golden months around here in August and September. Two months where we could see the good. Two months where he was happy a lot of the day, where the level of chaos and tantrums was normal for a challenging two year old. Two months where my infant slept through the night. Two months where we thought, "Hey, maybe we can do this family of five thing and more than survive it."

We don't know where it came from or where it went.

And now, 3 months later, my husband is about to leave for several weeks of travel. I have plenty of friends in the military who have endured far longer stretches without a spouse. I am not trying to pretend that my situation is dire or that many parents haven't had to endure this for years at a time. I am just trying to be real.

And if I am real? I am scared. Scared that I won't be able to do it. That my toddler will break me.

But more than the fear, I am so tired of being tired. So tired of being hopeless, exhausted, sad, angry, fearful and helpless. Tired of just surviving. Tired of dreading the day's beginning. Tired of looking at the clock every 2 minutes in the hope that is is miraculously closer to 5 pm when my husband arrives home and can take charge of him.

I have no choice in the coming weeks. I will do it. He needs to travel and be his spectacular self and dazzle in his interviews.

I will be home alone, I will be mom, 24 hours a day. And the reality is, that I am not mom enough. I never was and never can be. And, oh, I so want to be.

So, because I am so tired of feeling defeated, from today until he leaves, I am going to make every effort to write one blog post daily. Just one post focusing on something that will help me look at these coming weeks as an opportunity to dig into the deepest wells of grace, hope and forgiveness that I can possibly dig into. Maybe I'll make a list of who, physically, can come take over if I am about to lose it. Maybe I'll have to lean into God's perspective of my boy to see past my anger and fatigue.

Bottom line, I don't know what will come out of this. But I am challenging myself today to find elusive hope. And because, historically, I have been able to find hope in hidden places when I've taken the risk to vulnerably write, then, gosh darn-it, I am going to find the time to write. Every day, even if it isn't pretty or polished. Even if I have to type through tears or with someone screaming in the background, I. WILL. WRITE.

Because, friends, something has to change. If there is one thing I can cling to right now, it is that God is always about redemption, about transforming things from ashes to beauty, bringing dead things to life.

And HE is God enough.