R.E.S.T.

Being a parent often seems like there is never enough time, and often we shortchange ourselves on rest to compensate. Sometimes I thrive on all the hustle and bustle, and other times I feel as though I’m on a speeding train I’d love to make an immediate departure from. The worst part is that sometimes I’m unable to distinguish between the two, propelling me into confusion.  My wife Naomi knows too well, but after I’ve given my best to work and the kids, there isn’t much left for her.  That isn’t fair, or honoring our sacred relationship.  What am I robbing myself of when I deprive myself of rest in all its forms?

Rest.  This is an elusive and mystical word to a parent of young kids, which often makes me think;  “one day I’ll have time for that”  or  “I’ll rest when I’m dead.”  Neither of these views help me give my best to my family.  But I often fall into the trap of pushing myself, keeping busy and just getting the things done that Dad’s need to do.  Do I wear it as a badge of honor?  Possibly, and that is not healthy nor productive. That view is selfish and does nothing to glorify God.  When I can’t be my true (and rested) self, I am robbing the world of the joy God has placed in my heart.  Even if you're SuperMom or SuperDad, be honest, you can’t fake it but for so long.

But I got responsibilities man! Your quick schemes won’t work for me! Yes, it’s a challenge to find rest, or is it?  I think it’s important to remember that Grace through Jesus comes through Him, not through our deeds.  Deeds keep us busy, and we often give too much credit to our works. We spiral into an endless cycle of “doing” in order to prove our worth, and this isn’t just a spiritually manifested issue. 

I can’t give you a definition of what rest looks like, because everyone’s needs are different. But lately I’ve been thinking of an acronym that helps me, and may help you determine how you can weave rest into your schedule, however brief.  Here are my guidelines for R.E.S.T.

Recurring - Make it intentional, and on a schedule that works for you.  Even if it’s locking yourself in the bathroom to escape for 5 minutes (and yes, we have all done it).  Don’t let those little fingers under the door distract you, they will surely survive, as their only aim at that moment is to pull your attention. Setting yourself  boundaries will help you carve out some time.  Isn’t it strange how boundaries can make us more free?  Understanding this has always been a challenge, because as the parent you are always the enforcer.  In my daily rhythm, I try to catch myself “scrolling” and jolt myself into stealing my time back. We all find ourselves scrolling social media, so this is the perfect time to reclaim that few minutes as your own.  I also find that if I wake up before my kids, it’s hard for them to interrupt me during that time.  It’s the absolutely most perfect time of the day, since I tend to be a morning person.

Enjoy - The act of resting should recharge you, which means it should be a departure from your normal routine.  Shock your system by doing something you enjoy, which is something you have probably deprived yourself of as a busy parent.  You will be surprised how even a small burst will recharge your battery. This is a deeply personal choice, dig deep for something God has uniquely placed in your heart. 

Solitary - I’m a social person, so this one is sometimes a struggle for me.  But I find with the constant draw for my attention by my kids, the best rest for me in my current phase of life is often in solitude. It gives me a chance to reflect, which leads to the last and most important part.

Thankful - When you take time away, always do so with a thankful attitude.  You shouldn’t shame yourself while you are taking time away, that will always be self defeating.  The idea of rest (in the form of a sabbath) is deeply Biblical. You can choose to explore any of the scriptures around this topic, but I always fall back on the creation story. If God decided to take a rest, then it’s perfectly fine for you to do so as well! 

As you go about your day, I challenge you to implement these ideas.  Did you notice that it costs nothing?  And that it has no constraints on what you should do, or how long it should take?  You may need to enlist some help for you to carve out a small block of time, this is also perfectly acceptable. It is a process, just make sure that you protect what works for you. Take heart in this, and work on giving a slightly better version of yourself to the world. We are called to let our light shine, so do so with a restful heart.  

Written by Jesse Brubaker

Thoughts For This New Year

Resolutions.  I never stick to them.  I have sincere intentions about improvements I want to make in my life, but that format of resolving and proclaiming to do it never has worked for me. 

This new year comes with so many prayers for a better experience for us all.  Having that much expectation of our hopes and dreams placed on the new year, the last thing any of us need is the feeling of ,yet again, another failed attempt at a resolution.  So, this year I’m trying something new. 

If there’s anything we can all take away from 2020 is that there are many more ways than one way to do something. We have learned to think outside of the box, to make it work with what we’ve got, and how to adapt.  I’ve used those freshened skills to construct my New Year Checklist. 

To me, a checklist gives you some time.  The items on the list are there until you’ve completed them and crossed them off.  There is also an end. It isn’t this proclamation to live up to from now until eternity.  It’s just a list of things you’d like to get done.  Here goes!  

My 2021 New Year Checklist

1. Begin (and maybe finish, but not a requirement) a crocheting project.

2. Read for pleasure.

3. Sew something for each of my children.

4. Continue to work on forgiving those who have never asked for my forgiveness.

5. Show up.  Refuse to cancel.  

6. Continue to write.

7. Sing every chance I get.  Anytime and anyplace I’m asked.

8. Create the peaceful home setting I yearn for.  Do this by being conservative with screen time, filling the home with comforting scents and calming music, and building a reading culture within my family.

9. Spend more time cooking with my daughter and foster her already strong interest.

10. Create more opportunities to enjoy the outdoors with my son.

11. Put on my makeup every single day.

12. Touch base with forever friends at least monthly.

13. Fill in my daughters baby book (Yikes!  She’s turning four in February and not one stroke of an ink pen has hit the pages in her book).

14. Spend a portion of each day in meditation and focused, specific prayer.

15. Find opportunities to volunteer within my community.

16. Finally join the church that we’ve been visiting for two and half years.

17. Make it a priority to meet a friend for coffee.

18. Create a realistic weekly cleaning schedule.

19. Make those important medical appointments!

20. Forgive myself.  Allow myself grace when needed.

21. Breathe.

There it is.  My 21 things for this new 2021 year.  My kids have checklists for everything.  This one is mine. They are mostly self care items and very personal to me and my life, and that’s intentional. Yours will look different than mine, but as a caregiver we must endeavor to care for ourselves, too. Special needs parents and parents of children that are medically fragile, need to make a point to care for themselves.  This list is my way of attempting to do that.

To be totally honest, some of these items have been on my to-do list for a few years now.  Our daily plates are pretty full. The time just isn’t always there to follow through.  That’s why the list is good.  If it doesn’t get checked off this year, it just rolls over to next year.  And as I go back over my list, it really boils down to an attempt to improve my day to day experience, to take care of long overdue business and prioritize the right things in my use of down time. 

May your new year be one of peace and hope.  May you find little corners of time to pamper yourself, even if that means to stop and take a few deep, cleansing breaths.  May you grow in your faith and hold strong to it when fear and doubt inevitably creep in. We don’t know what will come tomorrow, so let’s be the very best version of ourselves today.  When we can’t be, maybe we can allow ourselves the grace to pause, and tackle more of our list tomorrow.  Happy New Year.

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

There Can Be Respite in the Sleepless Storm

It’s fitting that my son’s preferred sound to sleep with is a booming thunderstorm.  Let’s just say, college all nighters don’t even hold a candle to the all nighters my handsome little guy and I have endured together.  His sleep, among other things, was greatly impacted by the effects of his autoimmune condition called PANS/PANDAS.  Before his diagnosis and before we had a treatment plan, my forty-something year old body really struggled to keep it together during a season of difficult bedtimes, frequent nighttime wake-ups and a boy that started each day long before the rooster crows. 

I spent hours singing hymns and James Taylor songs and I’ve Been Workin’ on the Railroad on repeat, to name just a very few, sitting crossed legged in this sweet child’s darkened bedroom willing him to fall asleep.  For a long while, my husband singing Kumbaya in a slow, droning voice over and over and over again, was the only way to peace.  In a room adorned with the darkest black-out curtains they sell and the most realistic and loud sound machine on the market, I would pray for my child's body to calm long enough for him to find rest.  And once the calm came, I’d steal away for a few winks, knowing that I’d soon be back snuggled with this little love of my life, trying to calm him back to sleep once more.

Looking back on those days, having made huge strides in the sleep department, I realize how little concern I took in my own well-being. 

Isn’t that what a mom does? 

We do what we have to, and when it comes to our children, we take on the task at hand no matter what that task asks of us. Those wake-ups that sometimes came as early at 3:45am, were followed by full and glorious and nerve-wracking days.  Days full of coffee and giggles, meltdowns and play dough, hope and worry, and the endless shuttling back and forth to preschool, gymnastics, speech, OT, or whatever that day held.  Then, those days would circle back to Kumbaya once more.

As my son has gotten older, some of those struggles, both day and night, have worked themselves out. Some we have found our way through, some are still a daily struggle, while others are brand spanking new.  I have, though, started to make a point to acknowledge the amount of stress I’ve been functioning under over the past 7 years.  I’ve begun work to heal the parts of me that this has all piled up on.  It is my nature to smile through anything I face. I often proclaim that all is well, or give a good old, “We’re hanging in there!” with a grin and a giggle.  I think in many ways that has helped me to endure the heartache of it all.  It has helped me to conceal the gallons of tears I’ve shed over watching my child navigate such difficulties, though concealing them is entirely unintentional.  What those smiles haven’t helped is in finding any relief from the stress I’ve been under.  

Self-care was a term that kind of bothered me, as if it was this luxury others were afforded, or even an indulgence.

Who has time for that? How could I even squeeze that in?  I’ve learned now that we all have time to care about ourselves and I can squeeze it in.  It is not indulgent to care for the mother of my children.  It is vital.  It can be as small a start as just taking a multivitamin. It can be scheduling an appointment to walk around a park for an hour all by yourself.  It can be reminding yourself of the interests you had before things changed in your life.  I have found that visiting with the old me, for a moment or two each day has done wonders for my stress level.  I wish I had made a point of it sooner, when I felt buried in worry.  It’s okay, though, because it’s never too late to pause and re-evaluate the state of our experience.  We can find peace even during these hard moments in life, even during the loudest booming thunderstorm.

Written by BreAnn Tassone

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

Overcoming Parental Burnout

Help! I’m on the road to parenting burnout and don’t know what to do!

 This is a hard place to be. When we struggle with burnout at work, we can look for another job if needed. When we find ourselves here as parents, it can feel hopeless at times. We can’t just say,  “I’m done being a mom or a dad”. Although my wife has tried that but after a couple hours she’s ready to jump back in.

As parents whose children have additional needs, the recommendations you are about to read will seem difficult and if you are a single parent, they will seem impossible.

So what do we do when we recognize we are showing signs of burnout?

1. Talk to someone and ask for help!

If you are married, let your spouse know where you are at emotionally and ask if they can help with a specific task.  “I am completely overwhelmed and could use extra help for a while. Can you watch the kids for a couple hours while I get groceries?” (You might want to allow extra time to drink a cup of coffee at the local coffee shop and bring one back for your helper. 😁)

If you are a single parent, this is really hard. Do you have a friend that you trust that you can both share where you are at and that you can ask for help from?

It is oddly hard for us to ask for help. There are a lot of reasons for this. We may be thinking that we don’t want to add extra burden on someone else or one of many other excuses.

Here are three things to keep in mind when asking for help:

• Be specific. It is hard for someone to agree to help when they don’t know what they are agreeing to.

• Be flexible. If a person is only available to help during a certain time, what can you reschedule to try to make that time work?

• Let go of perfection. Realize that things may not be done perfectly or the way you would do it. If it is not something that threatens the health of your child, then let it go.

2. Prioritize sleep.

You likely know this is a need already. Our bodies need sleep. This may mean taking a nap as a family. You may need to ask a spouse, friend, someone from church or a babysitter to watch the kids while you take a nap. This may mean that the stack of dishes doesn’t get washed or put away or that load of laundry doesn’t get folded.

3.     See a counselor.

Many churches have an agreement with local counselors and will pay for you to see the therapist. There was a period in our journey when Sarah went to see a therapist that our church provided. The main motivating factor for her was so she could have an hour break.

4.     Establish a routine and minimize multitasking. 

I’ve heard multiple parents express that they are experiencing decision fatigue. Routine will help with this. Establish a two week menu plan so you don’t have to think about what you are going to eat every day and so you can use the same grocery list each time. Determine which outfit you will wear each day of the week and stick with it so you don’t have to think about it every morning. One mom we know wears a t-shirt every Monday that says, “This is my Monday uniform.”

We often feel pressured to multitask. In some cases, I feel like this is especially true for women. The truth about multi-tasking is that it can decrease our productivity by up to 40% and we typically feel more stressed as a result. It is not completely unavoidable, but how can you set boundaries to minimize the amount of multitasking you do in a day. 

5.     Take a break.

It is important to take a break, even if it is only 5 minutes.  Let’s be real though. Sometimes we need a longer break.

Here are some ideas to help with that:

• Talk with your pastor and see if there is grand parent or nurse that would volunteer to  come watch the kids. You don’t even have to go anywhere. You could take a nap!

• Check with area churches and see if any of them provide a respite night for parents of children impacted by disabilities and special needs.

• If you don’t see a church that does this, check out 99 Balloons or Nathaniel’s Hope and see if they come alongside families in your area.

6.     Take care of your body.  

This is often the last thing that we want to do. It adds extra stress when we think about it and seems like more work.

What we put into our bodies can help or hinder our recovery from burnout. Nutrient dense foods provide us with the fuel we need to recover. Our eating habits do impact our overall health, energy levels and how we feel about ourselves.  I’m not saying that we need to always eat organic freshly prepared meals. Sometimes self-care means throwing that frozen pizza in the oven and having a bag of chips.

Related to this is being physically active. Aside from the physical benefits, being active can boost energy and increase those feel good hormones. This doesn’t have to be going to the gym for an hour each day. It can be  as simple as going on a walk with your dog, playing outside with your kids,  or taking time to stretch your body.

7.     Laugh.  

When we are stressed, it can be difficult to find things to smile about and laugh about. Laughter is refreshing and lightens the mood of the entire house. Save a folder on your computer with links to funny videos, jokes, etc. Take a 5 minute laugh break every day and this will help so much with your stress levels. Even fake or forced laughing has been shown to be beneficial. In fact, here is a funny video to help get you started.

Change and recovering our health happen incrementally. Don’t feel like you have to do everything on this list this week, but what is one thing you can do?

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

When You Want To Quit

Do you have days when you just want to quit? Days when you wish you were a kid again and your parents took care of everything, but now you are the Dad or Mom and you’re the one that has to provide, take care of, figure out, fight the battles, create a calm place in the midst of the chaos and storms of life? Not only is it hard, you may not even have a clue what you’re doing or how to go about it, yet you are responsible for doing it and achieving the needed result.

Here are 3 things do you do when you just want to quit:

1.     Take a breath or a walk.

Get a little space and a little perspective. Come up for air. You’re likely tired and being physically tired makes it hard to think clearly and make decisions or just do daily tasks. Of course, getting some sleep is great, but next to that, deep breathing does wonders for our physical and mental health. It helps release stress and calm the nervous system. Exercise does too and releases endorphins that help you feel better.

2.     Schedule time with a friend.

Sharing your challenges and struggles with a safe friend, maybe a friend who has walked some of life’s challenging paths ahead of you, often can help shed some light and perspective on your situation and can be just what you need.

3.     Cry out to God.

You already know you can’t do this on your own. That’s why you want to quit! It’s hard! But, fortunately, God already knows this life is more than you can handle and that’s why He clearly promised to be with you and not to abandon you. Ask for what you need. Do you need direction? Ask. Do you need insight? Ask. Do you need to know you’re loved and not forgotten? Ask Him to show you and keep your eyes and ears open for His answer.

This life is hard. We live in a broken world with pain, sadness, disease, and evil. This is not our home. We are just passing through. It may seem like you’re stuck here forever, like this struggle is never-ending. But, you are one day closer to your real home. Your home where your all-knowing, all-powerful, unconditionally loving, good Dad rules, has everything taken care of for you. There is no hard. There is no pain. You’re one day closer to being truly home.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Beauty In The Ordinary

It never ceases to amaze me just how tiring and intense our family life can be, especially if I’m honest when school term is over and everyone has time off. All around us friends and family are heading off excitedly on holidays together – and we also head off, but perhaps with a more complex set of emotions than simple excitement.

Out of routine children in unfamiliar places can be a challenge! Just thinking about the extra energy needed to get us there, and survive the experience makes me tired in itself! You know how it is.

We have just had to be spontaneous (I know, not one of our family strengths) and come home earlier than planned because a weather front plus camping at a Christian festival might not have been the most sensible plan. Its upset all the known plans, and caused anxiety all round but before we left I was sitting in a seminar surrounded by other carers and parents who find hope in Jesus like me, and I was reminded by one who commented that her way of self-care in the midst of caring for others was to notice the beauty in the ordinary.

It struck me, and I have brought that thought home with me. If the weather behaves for us I will pack that thought and take it with us to our next week of camping with my sister and her kids by the coast.

Seeing the beauty in the ordinary, such a simple thing.

And as I think about it, such a transforming thing.

Simply taking time to notice beauty; in an unexpected smile; a flower growing through the pavement cracks; the pattern of the sun bouncing and dancing off the sequins of my daughters T-shirt in the car. There is beauty everywhere we turn, when we notice. But how easy to miss it when we are feeling tired and overwhelmed. Somehow we find ourselves using our energy to anticipate the negatives and the problems round every corner, and forgetting to note the beauty in each other and the world around us.

I am reminded of Jesus’ words to a crowd of worried parents,

“Will all your worries add a single moment to your life? For example why worry about clothes? Look how the wild flowers grow. They don’t work hard to make their clothes. But I tell you that Solomon with all his wealth wasn’t as well clothed as one of them. - have you ever seen colour and design quite like it?” (Matthew 6:27-29)

When we stop and notice beauty, pause just for a moment to take it in, we can’t help but see intricate detail and design, amazing extravagant colours and shapes. They remind me of a Creator who takes care in the details – all the small things, even the things so many of us walk past. He sees them, they make Him smile, they delight Him. He has knit beauty into His world at every turn and every hidden corner, nothing is too small for His attention and care.

I am reminded again that nothing in my life, or in my family is too small for His attention and care either.

He has knit beauty in and through us too. We make Him smile, we delight Him! There is nothing about us, even in our most awkward and ordinary moments that He walks past without noticing. He sees. He smiles.

So, today waking up unexpectedly at home and faced with piles of washing, suitcases everywhere hurriedly packed, the kitchen piled high with shopping done for camping that needs sorting and tidying – perhaps today is a good day to put this into practice! Where is the beauty in all of that? I need to take those moments just to notice and take it in. I need reminding that my God sees, and smiles. He sees the beauty in the ordinary- every time!

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with Him.

How Is Your Foundation?

Have you heard the parable about the house built on rock verses the house built on sand? It is from Matthew and is super short and sweet. The gist of it is that if you don’t have a strong foundation, you will not weather the storm.  I think a storm is a great metaphor for living this special needs life. The swells come and can cause some significant damage if we aren’t prepared. 

I think one of the biggest shifts for me as the parent of a child with special needs was becoming aware of when I begin to wilt. It happens over time then one day I wake up and think “HOW DID I GET HERE?”

It is the slow crumble, the neglect of ourselves that leads to a house that has crashed to the ground.   Because when your child isn’t well, isn’t sleeping, is self-harming, or when you have been denied AGAIN for resources you need, it is easy to neglect ourselves and be in the same state as the sandy house if we don’t have a good foundation.

The problem isn’t that we are weary, from time to time. The problem is that we don’t pay attention until it is too late and our foundations are weak and then we fall apart.

 Of course we can and should spiritually prepare. However, I also believe there are very practical, things we can do to have a strong foundation as well.

1.     You have to prioritize yourself. Oh my word! Did I really just write that out?! Yes. You did in fact read that right. YOU MUST PRIORITIZE YOURSELF. You are not a hero for putting everyone’s needs before your own. You, my friend, are human too. And if you are going to take extraordinary care of your child you must first take extraordinary care of yourself. 

 2.     You need to attend to your own health. Both preventatively and when there are issues. Go for your check-up. Establish a relationship with a primary care doctor for you. Go to the dentist. I know, you don’t have time. No one does. But do it anyway. Appointments will get canceled because of your crazy life. RESCHEDULE THEM. I also am a big fan of working out and eating things other than the crust of my children’s sandwiches. But let’s not get crazy. If you are starting from scratch maybe just start with scheduling those appointments? We wouldn’t dream of neglecting our child’s health the way we often neglect our own.

3.     Figure out what brings you to life again and do it. Do you love art? Do you like working out? Do you enjoy wandering the aisles of target alone with no agenda? What is it that recharges you? This is where the trendy topic of self-care comes in. But this isn’t about spending money on expensive luxury things. It is about finding out what recharges you and gives you life. Then make space to do that, regularly.  

4.     Get some help. Build your team. It truly takes a lot of people to help support one individual with special needs. And it is a constant game of finding people to help, that you also trust. Maybe grandparents, a spouse, helper or PCA. Maybe it is a friend or the para from school. You have to have a support team that will not only remind you that you are looking a bit wilted, but that will step in and help you prioritize yourself.  No one will care for your child as well as you do. And that is Okay. Because you need a break sometimes, which is also valid and important.

So what is your foundation looking like? Did you weather the last storm with just a bit of hail damage? Or was it more significant? I would encourage you to look objectively at this and make a plan if you are looking a bit shaky.

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood. 

Healthy Rhythms Part 1: Rest

It feels a little bit vulnerable to write about the importance of Healthy Rhythm to this group. Because let’s be honest, raising a child with any kind of special need does NOT lend itself to that. There are so many things that are unpredictable and our plans change frequently.  Because that is our reality it makes rest so much more important.

Early on in our special needs parenting journey my husband and I were really lucky to be a part of a church that highly valued healthy rhythms of rest, work, and relationship, and so they became priorities for us.

So, let’s dig in and talk a bit about healthy rhythms.

One that is extremely important for all parents, but even more so those of us parenting child with high needs is REST. I define rest as something that brings you life. And that might look extremely different person to person. For me rest is active. I don’t do still well. So getting to go peruse target- kid free, while listening to an audio book feels restful. Or spending some time being creative, whether that is doing a home project, or sewing, that process of creating while might seem like work gives me life.  Now my husband would consider both of those things work. And his rest often looks like getting away to watch whatever NFL game is on with a buddy. Or having literally nothing on the schedule.  

Rest is something that is so vital for us to remain or get into a healthy place, but it feels impossible at times.  So how do we make it happen?  

We have to Plan & Protect it. 

I don’t know about you guys, but nothing LITERALLY NOTHING important gets done unless it is on my calendar. Especially not something that is for me and me alone. No matter how vital something is to me I will push it off to meet the more urgent needs. But if I fail to take care of my needs it leads me to a thin place and then things start to unravel.

 Rest for me started when a friend offered to watch my daughter 1 day a week for a few hours. It meant I had to let go a bit, trusting my friend to take care of my complex (then seizing) kiddo. At first it felt awkward setting aside those four hours to myself every week to not get things done, but to instead bring fresh air to my overwhelmed life. Then it became a habit. It became a time I relied on and resulted in me coming back as a better mom, wife and woman. Over the years it has transitioned to my husband allowing me the time every week and me doing the same for him. But we have to start by planning and protecting it.

God did not design us to work endlessly and then fit in rest at the end if possible. God created man on day six. And then day seven was a rest day. THEN, only after a day of rest Man set to work in the garden. 

How would our lives change if we committed to scheduling a block of rest time- something that is life giving every week and doing it- and then working from our rest instead of resting from our work?

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood. 

Dear Exhausted, Wrung-out & Frazzled Mom

Dear Exhausted, Wrung-out & Frazzled Mom,

I see you. I see you struggling to make it through the day, your child’s melt downs, the medical appointments, and the therapies. I see the desperation in your eyes. I see the heartache as you are alongside your child in the midst of their ongoing pain.

I see that you are on the verge of collapse and the idea of having to do one more thing overwhelms you. I see the loneliness as you feel alone in this journey. I see you slump your shoulders when someone mentions self-care and the guilt you face at the idea you need to take a break and your child doesn’t get one. I see you and I get it. 

Our inclination as parents is to keep on pushing. We push until we can’t push any longer. It’s not a badge of honor but born out of what we feel is necessity. The idea of taking care of ourselves just seems like an impracticality and can increase our feelings of guilt on multiple levels.

This weekend I was asked “How do I know when I should pause to take care of myself?” If you are reading this letter, then the time is now. 

When our youngest son was a year and a half my wife, Sarah, had a physical and emotional break down. She had been pushing and pushing, only getting a minimal amount of sleep each day. It was a Sunday morning when she broke down. Sarah who was not normally a crier wept all the way through the church service and all the way home. She cried herself to sleep, slept for 22 hours, woke up, cried some more and slept for another 17 hours.

The thing is, she didn’t wake up feeling refreshed and like she could keep going. She was exhausted. Her hormones were shot and today, ten and a half years later, her health is still struggling. 

As a husband and a father, I implore you to take that time now. Don’t wait until it is too late. Your family and your child need you there for the long term. Please take that time, even if it is only five minutes a day.

Self-care doesn’t always have to be something that is grand. Just five minutes a day is a good place to start. Take time to breath. Smell your favorite scented soap as you wash your hands. Eat a piece of dark chocolate. Lay in your bed with your headphones on and listen to your favorite song. 

Self-care is not an extravagance. It is not selfish. It is necessary. Please take care of yourself before it is too late. 

What are one or two things you can do today to take care of yourself? It is that important.

Written by Jonathan McGuire

Jonathan McGuire is the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Help!

My friend’s baby had been sick, and since I am a nurse (who thanks to my own daughters needs owns a suction machine), I offered to swing by and suction her baby. My friend declined, but later, when I offered again she asked me to come. Once I had finished and her sweet baby was able to eat better, my friend said “I don’t know why I didn’t just say yes in the first place, she’s eating better than she has all day. I guess maybe I didn’t want to bother you or ask for help?”  

I think we can all relate to this. When did HELP become a dirty four-letter word that we aren’t supposed to use?  I was never taught to NOT ask for help, yet it has taken me a long time to get on board with the reality that I live a crazy life and I NEED help. 

Needing help often comes with some kind of shame, a fear maybe that others might think I was weak? Or maybe I believe that somehow, I got myself into “this mess” so I don’t deserve help? 

Regardless, if you are reading this blog especially as the parent of a child with special needs… YOU NEED HELP. You are absolutely worthy of help. And while our kiddos can be more challenging, exposing them to people outside of ourselves is a huge benefit to all involved. It helps our kiddos have other adults in their lives that can love them well. It helps us carry some of the burden. I know from experience that caregiver fatigue is a real thing. What a gift to the people who get to know our kiddos. It feels good to help those around us, and by saying YES to the offers of help, it builds community and relationship. Plus, our kiddos are amazing even with the hard, and the world NEEDS to know them. 

When someone asks what they can do to help me I sometimes don’t know where to start. It gets to a point in this chronic life that it feels like more work than relief teaching someone about our lives. But I promise that it can be worth it. And maybe that means I say YES when someone offers a meal, or I say YES when the neighbor asks if she can pick up my other daughter from school. When I find myself saying “I can do it” I am learning to pause and say, “Yes! I would love the help.” It might even mean me reaching out to friends and family and ASKING for help, because I have now realized I am worthy of needing help. 

I was so grateful to help my friend. I had the time to make it work, and I was truly blessed by getting to serve them.  

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood. 

Four Ways To Cope When You Are In Survival Mode

How do we think about the future when we are living in so much chaos? Do you ever feel like you are living from one moment to the next, just taking one more breath and trying to put one foot in front of the other? Sarah and I have been in that place of just being in survival mode. Many parents that we talk to also find themselves there, in that place of just trying to make it through the next second and where making it through dinner qualifies as a long range goal.

 There was an eight day study done on mothers of adolescents and adults with autism. At the end of the study, it was found that their stress levels were comparable to combat soldiers! Some of you just breathed a sigh of relief when you read that. I know this study personally resonated with me. It was a relief to know that I am not weak and I so identified with the picture of a combat vet in a war zone.

Common symptoms of combat stress that soldiers experience are:

• Hyper-startle (An exaggerated response when something surprises you)

• Hyper-vigilance (Being always on guard or super-alert)

• Trouble with focus and/or memory

• Flashbacks (re-experiencing stressful events)

• Hallucinations (seeing, hearing or feeling things that aren’t real)

• Nightmares and trouble sleeping

• Depression and apathy

• Guilt and shame

• Withdrawing or avoiding others

• Irritability and angry outbursts

• Headaches and exhaustion

• Extreme anxiety (excessive fear and worry)

Do any of these sound familiar? If so, how many? Maybe some of these things have become so ingrained in you that you have just taken it for granted that that is who you are.

Hyper-vigilance became a way of life for us, beyond just being a helicopter parent. Back to that image of being a combat vet, Sarah often described our marriage after our journey in disability began as the two of us being in a “fox hole” together as we were constantly on alert and fighting for our family. 

In an article in Navy Medicine Live, it was shared that if not addressed, these symptoms can morph into something else, like PTSD or substance abuse.  

So what do we do when we struggle with one or more of the above symptoms?

First, implement a self-care plan.

Yes, I know  you already know this but have you done it? Stress negatively effects every one of our body systems and leads to ongoing health issues. In this video, I share 5 things anyone can do as they implement their own self-care plan. You can also send me your email address and I would be happy to send you a free e-booklet I wrote with the same information.

Second, as much as possible, implement a routine.

On average, adults are making 35,000 decisions a day. By eliminating some of those decisions through having a routine, you will be better equipped to handle the big decisions and the “surprises” that frequently arise. What are some decisions you can streamline?

President Obama was a fan of this. He once shared, “You’ll see I wear only gray or blue suits. I’m trying to pare down decisions. I don’t want to make decisions about what I’m eating or wearing. Because I have too many other decisions to make.”

Third, find a community or select group of friends who “get it”.

Commander Carrie Kennedy a neuropsychologist and aerospace experimental psychologist shared that the real key to effective management of combat stress and long term adjustment was that veterans have to be in regular contact with other veterans.  Veterans need to be able to talk over difficult  experiences with members of the same unit.

 If you are unable  to find that group who “gets it”,  Hope Anew wants to help. We are in the process of building an online community that will launch later this year. This community will be a “laugh together, cry together, pray together” community. It will provide you with those connections who you can be real with and who will get it. If this something that interest you, again message me and we will be sure to let you know when it is launched.

Finally, as believers we have an eternal hope.

We have a Savior who loves us and we know there will eventually be a day where there is no more crying, no more pain and no more sorrow. As we long for that day, it helps to look for things daily that will instill hope and bring glimpses of joy.

You won’t be able to dream and plan for the future until you can manage the stressors of today. If you feel like you are just in survival mode, what is one thing from above that you can do today that will help with your stress levels?

 If the above symptoms persist, become worse or you begin to have self-destructive behavior or suicidal thoughts, please reach out to a professional immediately for help.

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disabilities on a spiritual and emotional level.

You can follow Hope Anew on Facebook here.