Not Another Resolution

I haven't really been one for New Year's Resolutions in awhile. Possibly, that's because I tend to be a doer- so setting up a list of things to do doesn't actually seem that daunting. Or perhaps it's because I have learned that when you have young children, it's really best to just take things one day at a time. And because I am that aforementioned doer, I set myself up for disappointment if I set some big goals or changes that I can't meet because of, well, how life might unexpectedly shake out with those tiny humans.

But some time during the last five years, the five years, incidentally, that I have stayed home with my kids, I have morphed into a doer without purpose. It's one thing to make a list, check it, complete it and wake up the next day to do it again. It's fine, it keeps things moving, helps a family function. But it's quite another to wake up on purpose- to look forward to what the day brings, for one's first thought to go deeper than looking forward to when she can next lay back down.

Friends, that's pretty much where I am, here at the end of 2018.

Exhausted. When my alarm goes off in the morning, my first thought is not what is coming that day, it's almost always of how soon I can get back in my bed.

One step, the next step...and all day long just dreaming of the moment I can lay down again. Be alone. Make the worry go away, stop being anxious and wondering what I've missed in my quest to help my son, to pray that maybe this will be the night after which I wake up rested and hopeful and ready. For something. Anything.

This is about to get raw. But it needs to be said.

Staying home with my children for the past five years has been the absolute hardest thing I have ever done. It has brought me to the very edge of myself. I have developed PTSD from parenting a special needs child (gasp) but you CANNOT say that out loud in polite company. And on top of my PMDD, my friends, that pretty much means I am always one step away from falling apart.

Two weeks ago, it caught up with me. I woke up one day and I thought, "I can't do this. I don't know who I have become. What has happened to me?"

To be honest, it was probably the scariest moment of my life.

But because I have an awesome husband and some amazing friends who stepped in when I couldn't stop crying, I managed to get to the doctor for a checkup. That day. And to the counselor for a session. That day. And came home with a new "routine" and some medicine for my PMDD and the teensiest bit of hope that maybe, just maybe, things could change with some really hard work and the ability to ask for help.

For two weeks now, we have tried our best to stick to my prescription. I was told to get a two hour break from parenting every single day. To get at least 30 minutes of exercise every day. To practice mindfulness and prayer when I start to panic. To breathe deeply multiple times a day. Never to skip my medicine.

I might have scoffed at this a month ago. Thought it wasn't possible with our chaotic life and our "divide and conquer" style parenting.

But when you are as low as you ever remember getting, even lower than the miscarriage and the ensuing years of infertility and the adoptions that fell through, you are willing to do whatever someone tells you to do. Or at least, I am. That rule-following thing. It was honestly nice to be looked straight in the eye and told in no uncertain terms that something had to change and that it was OK that I needed it to change. That there is no actual way to carry the burden of this parenting challenge alone day after day. And that it was acceptable that being a stay at home parent just wasn't really enough right now.

There. I said it out loud.

Being a stay at home parent isn't enough for me.

I need more. And I've always known I needed more. When I chose to stay home five years ago, I imagined it to be temporary. But no one plans on a kid with special needs. No one plans on pulling him from school or spending hours of your life researching treatments and options and fighting with insurance companies. You just do it.

But somewhere along the way, I lost my purpose. My joy. My hope.

And friends, I really miss those things.

So, as 2019 approaches, I am not filling it up with resolutions. I am not making a huge to-do list.

I am focusing on one phrase: "new life."

A sweet friend of mine gave me a bracelet this summer after her trip to Hawaii. It's gorgeous. And the symbol on it means "new life." When she gave it to me, I knew it meant something, but I wasn't there yet. I couldn't see through the bog yet.

But as I have slowly emerged over the past two weeks that have been full of exercise, parenting breaks, enjoying my new calming corner, lots of deep breaths and long runs and an unexpectedly joyful Christmas, I feel like it's time.

With my new classes starting in less than two weeks, with some new boundaries in place, I am going to focus in on that.

New life.

It's something promised to us by God. It's something offered, no questions asked. Second chances. New beginnings. No matter how low we have sunk, how far we have strayed, how much we have despaired. We can always claim this hope.

Anyone else with me?

On Infertility and the Church

Just last year a friend asked me if it was alright for her to talk about her pregnancy. My youngest was about a year and a half at the time. Presumably the pain of infertility is enough in the past that I should be able to have these conversations without holding myself back.

I appreciated the question.

Was it time? Could I do it?

Or would it, like so many conversations that happened during our years of infertility, throw me into emotional chaos?

It only took a few seconds for me to take stock and realize I was ready. This was a friend who had prayed for me, cared for me, loved me, who was now on her third pregnancy and hadn't really felt free to talk about the first two with me because we were still waiting and hoping and experiencing the pain of loss over and over and over again. And she knew it was too much.

It's funny, you know. Looking back on the years of that struggle, there are a few very stark memories that define it for me.

Sitting in a pew at church while pregnant woman after pregnant woman walked by, bellies right at my eye level, and fighting ever so hard to be happy for them, to pray for their unborn children and, honestly, fighting hard not to flee down the aisle and sob in the car.

I didn't always win that fight.

Listening to sermon after sermon wherein the person shared a similar struggle and how God eventually "blessed" him or her with that long-awaited biological child.  Because (a) they finally stopped asking or (b) they let God teach them something they were stubbornly unwilling to learn and so God answered them or (c) they prayed without doubt or (d) they prayed in tongues or (e) they chose holiness in their life and so God rewarded them. It really goes on and on. And not one time did I hear a sermon in which God didn't answer that prayer in exactly the way the person wanted. And yet I know couple after couple for whom a biological child was not "the answer."

Being told that to "be fruitful and multiply" was still God's mandate for how I should family plan. Just trust him, if children are indeed a blessing, then you will have more.

There was no language for what we were going through. There were only stories of victory. Hang in there, I know someone who waited 10 years! Oh, well, you are going to adopt? You know the second you do, you'll get pregnant. That's how God works. Stop asking. Once you don't want it, he'll give it to you.

Friends, come on.

Really?

Can we not do better for one another, here? Can we stop misrepresenting God as a capricious, malicious being who only gives kids to those who pray the right way? Are we really going to tell people there is a way to earn kids? What is that?

I realize that there is no comfortable way for us to talk about infertility. It DOESN'T make sense. In our case, the medical community called it "unexplained." There was no biological reason for it. There was nothing we could "fix." Maybe that's why all the spiritual fixes felt even more unhelpful. Even though we knew we disagreed with the theology of so many of them, we would latch onto the hope they offered. Ok, maybe I am NOT praying hard enough. OK, maybe I AM really being disobedient in some way. What can I change? What can I do so God will stop punishing me?

Maybe it's my fault. I caused it, I perpetuate it, I am guilty, somehow.

Rather than sitting with each other, lamenting the losses, the miscarriages, the unwanted periods...we struggle to find an explanation. And inadvertently heap guilt on one another when we do.

Look, I don't have any answers here. I don't know why it happens. I don't know exactly what God is up to in anyone's journey of infertility. I know the literature says that it can be as emotionally painful as a cancer diagnosis and I know that felt true. It was literally debilitating at times. And it sure as heck was isolating.

And I know the church, where babies are celebrated, longed for, baptized, dedicated and cherished can be the hardest place in the world for an infertile woman to thrive. Sometimes the way motherhood is communicated, the way pregnancy is communicated, can even threaten the very woman-ness of someone going through this. She feels less than. Like who she was created to be cannot fully be.

Can I be honest?

This is nonsense. Utter, damaging nonsense.

I was created to be a daughter of a loving God. That's it. Whether I can produce a baby or not doesn't change who I am or my status before God. Let's cut this out now. 

It's Pregnancy and Infant Loss Awareness Month.

What if we talked about that IN THE CHURCH?

What if we started to have a language for women to understand that it isn't about their spiritual effort?

What if we mourned with those who mourn in this particular area?

What if we shared stories from the pulpit that DIDN'T result in a biological child?

What if we talked about adoption not just as the "solution to abortion" in our churches but as a complex and traumatic choice and not the simplistic, unicorns and rainbows, way that we currently do?

What if we didn't talk about adoption as the "backup" plan?

What if we could truly be the church and embrace those couples who feel alienated from a culture that equates blessing with family size?

What if, like Jesus did, we could just sit with a woman in pain and offer her love?

Man, that would be a beautiful thing.

Friend, if you are going through this silent pain, please know that I'm safe. I would be happy to listen, to cry, to lament, to yell.

And I promise not to offer you any solutions. Just love.

Cue the Balloons

I don't know if it's one person's job or whether it's some kind of magical, automated thing, but you know that moment after a huge victory? When people are cheering and balloons drop from the sky as if from heaven and everyone is smiling and laughing and existing in a sea of delighted chaos?

How fun would it be to be the person who makes that happen?

Who waits for the cue and releases celebration into the world.

Today was my middle son's last day of camp. It started 3 days into summer and ended 3 days before the new school year.

Camp, my friends, was a risk. Last year came with a lot of curveballs. A lot of failures. New diagnoses. New therapists. New medicines and supplements. LOTS of new grey hairs. And heading into the summer, my son hadn't had a lot of successes to tuck into his belt. It had been a very hard spring.

His therapist, however, had insisted he was ready for camp. That he could DO this. And not just do or survive it, but love it.

And friends?

Today, I am seizing that job that sounds oh-so-fun and releasing a storm of metaphorical balloons into our lives.

Today, he celebrated the last day of camp with a party. He brought in his own safe cake and special chips and lime juice so he could partake of the kona ice truck fun. He smiled. He laughed. He said goodbye at the door to his dad without screaming or panicking.

And when I picked him up three hours later, he ran into my arms and told me all about the party. He hugged his teacher goodbye and thanked her. And she told me he had been a delight. A DELIGHT. In fact, we had not one phone call home the whole summer. Not only did he survive, he thrived.

I handed him a little gift to celebrate - a pack of water balloons - and we talked the whole way home about how much fun he had had. About the friends he had made. And the beautiful women who had taught him and laughed with him and sang and danced with him. Who had helped him have success after success.

And later on, he filled every one of those balloons and had his own little party.

And it wasn't just camp. As a sweet little four year old, he joined the swim team again this season and worked up to racing. He earned ribbons. His amazing coaches pushed him and loved on him. He had the large majority of the team and not a few parents waiting at the end of the lane in his very first 25 meter freestyle race cheering their heads off to make sure he made it. He felt like he was a part of something bigger and it made him so very happy. We even made him a swim team corkboard just like his big brother and he is so very proud of it and can't wait to fill it with more next season. He loves for me to read him his little awards that his coaches wrote for him and we laugh together about how true they are.

Cue the balloons.

We fight hard for victories around here. They don't always come often and they don't ever come easy. But my beautiful boy who had one of the hardest years of his life had his best summer yet.

I am so stinking proud of him.

He has worked his little patootie off with his therapists. And he is ready and excited for school next week. Turns out his amazing teacher this summer will be his teacher this fall so his transition (and MAN are transitions rough for him) is almost nonexistent this Tuesday. Look at God, friends.

We don't know how this fall will go. We have a lot of hope that his successes will continue. We know there will be good days and really hard ones.

But today, as his mama, I get to be the one who releases the celebration. And what a joy it is!

Sanity Savers #2: The Routine Checklists

About a month ago, I wrote a very well-intentioned post about my intentions to write a series on some Sanity Savers around here. 

Then, you know, life. End of school. More appointments. Etc. 

I did manage to get that first one written about the visual timer but my hope is that now we are setting into a (so far) successful summer rhythm, I can finish the job I started.

In that spirit, here is entry two: the Routine Checklists.

When you have a bunch of kids and one of them has a LOT to keep track of, you need a way to make sure you don't forget any part of the routine. I am sure there are amazing apps or programs that can do it- but I am a visual person and I love paper and am addicted to my laminater- so I make lists. And display them prominently. 

It seems so silly and simple. But it honestly works for us.

I write a checklist with boxes to check, print it, laminate it and display it on the side of our refrigerator because the kitchen is most definitely the hub of our family activity.

Refrigerator 

My oldest son is 11 and has increasing levels of responsibility around here. We believe strongly in kids having a sense of ownership in their home and family - a deep sense that they are supposed to joyfully contribute to the functionality of the household. He will be ready for college when the time comes, we hope, because he has learned he has a role in keeping not just himself functioning, but his family, too. (And yes, he wants to go to college and he's working towards that. That is not just his crazy mom assuming that future for him.) 

This is his morning list (and he has a separate evening list) and he can handle it:

My middle son needs a number of things to happen in the first hour of his awake time in the day to give him the best shot at a successful morning. And yes, his list includes chores, too. Giving kids responsibility is a positive thing and for my incredibly independent four year-old, it is a way for us to give him trust, independence and a positive sense of accomplishment. 

Here's his list:

I also just enjoy having a to-do list that I can erase and start over each day. Saves paper and again, I know I could do this on a phone, but I LOVE using markers to make those satisfying check marks. Call me a nerd. I embrace it. 

Looks like this:

Does this save my sanity? Yep. Saves the time of wondering if I have done everything I needed to do for my boys in the morning. Gives them a clear expectation of what needs to happen before they leave the house for school or camp. Do we tweak the lists in different seasons? Of course! Does the laminater get used all the time? Happily! 

It's a simple system but it works for us. 

What kind of system could help YOU stay on top of that morning routine?

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.

Sanity Savers #1: The Visual Timer

Two days ago I posted about why we stick to routine around here and that we have several sanity savers that help us stick to that routine.

Today: The Visual Timer

Transitions can make it look like my child is about to singlehandedly bring on the apocalypse. We learned this at a very young age - we learned it trying to leave public places, trying to come inside, and finishing, well, anything really. We also learned that developmentally, kids can't really understand the passage of time. When he was just two years old a therapist put us onto this visual timer. It's old school, you just wind it up to the amount of time you want to pass and kids can watch the red area shrink in size until it's gone and the clock beeps. It's AMAZING for helping him wait for something, for letting him know when we are going to change activities or move upstairs for bedtime. It also helps us be consistent as parents in following through. Rather than saying "five more minutes" roughly 20 times and escalating into a frustrated rage over why our kids don't understand us, we set it and stick to it.

Which is good for everyone, really.

Recently, bedtimes have gotten really hard again. We started using this timer to prevent the endless stalling and "one mores" that can leave a parent completely frazzled at a time of day when we often don't have much physical or emotional energy left. We set the timer and do all the things we love - read books, pray, sing, snuggle...but when that timer goes off, that's it. Bedtime is done. Kiss, hug and out the door. It hasn't solved everything, but it helps him know there is a limit and an end to that time together. (He is a MASTER staller. I promise we aren't cruel. But bedtime HAS to have an end or it gets ugly.)

Incidentally, if you need a laugh about putting little kids to bed, here's Jim Gaffigan. You're welcome.

The timer here is the one we have. It's lasted 3 years in a house where we play rough. It's called the Time Timer and I can't recommend it highly enough.

Stay tuned over the next week for more Sanity Savers.

The Time Timer 

Routine for Life: Intro to Sanity Savers

I know there are people in my life who find me too rigid, too controlled in how we do things around here. The never-mess-with-the-schedule, the strict bedtimes, the timers, the visual calendars, the social stories, the rigid diets.

And sometimes I believe them. That I'm too serious about all this or maybe if I just went with the flow, things would be fine.

They wouldn't, though. I know that.

And true confession right now: I love all the lists. The schedules. The clarity and boundaries in our day. I have always loved routine and order. Laminators and bins. Spreadsheets. Yes, I get tired sometimes and wish we COULD just stay in our jammies all day on a Saturday and just lay around and see what happens. But I know what would happen. We'd all pay for it dearly with a dysregulated, unhappy child.

It's just not worth it.

As we delve deeper into the diagnoses and the plans for how to best help our middle child thrive in a world that will soon see him as a threat, I am beginning to see that the significant quirks in my own crazy personality - the determination and stubbornness, the organization, the driving forces of passion and energy- are uniquely suited to what we are faced with. And while I continue to be my own worst critic, I have been working hard to see the good in myself. The ways that God has created me to be this mom to this child in this place and time.

This is pretty big for me, friends. I almost always only see the things I am doing wrong.

Right now, friends, our routine is life. And I am REALLY good at routine. At self-control. At doing what I'll say I do and following through with what my kids need.

And I know that I am not alone out there in fighting hard for my boy. In staying up late reading articles. In devouring books and talking to therapists and browsing the fun and function website and coming up with ALL THE PLANS.

Sometimes it's nice to come across a place where someone has already made some discoveries that might work for us, too, rather than starting from scratch.

So, while I'm no expert, we've been working hard for three years and if you have a child who might need a little extra help in life, I know sometimes you don't know about something until someone mentions it. And I firmly believe that the things we learn in life - the practical, the spiritual, the emotional, the physical - well, we're meant not to keep it to ourselves.

In that spirit, over the coming week, I thought I'd share our most favorite of sensory and routine supports in the hope that someone out there might need to know about it to support his or her little one in even the teensiest improved way.

Each day, I'll share one thing we do that I consider a Sanity Saver. And I will give credit where credit is do in how we found it.

And if it helps even one family, I'll consider it a win. Hope you enjoy!