The Days Are Long, but the Years Are Short

“The days are long, but the years are short.” 

I repeat this phrase while I sit on the couch listening to my 7-year-old grandson read for a half hour every evening.

Each time he turns a page, he says something like, “Wow, Grammy! What do you think that is?” or “I wonder what will happen next?” He ignores the words on the page and launches into several winding, imaginative explanations.

My grandson really, really likes to talk. And use his imagination. As for the reading part? Not so much. 

Which is why I eventually have to suggest, “Read the page and find out.”

He follows my suggestion––he can read more fluently than he believes––and finds out. Then he turns the page and begins the same process all over again. 

To contain my impatience, I whisper to myself, “The days are long, but the years are short.”

One evening as we read, my mind wandered back to when our son was young and medically fragile. When complications arose––maybe he had a fever, refused to eat because of an oral aversion, or vomited his food because of an esophageal blockage––our days were very, very long. 

Should we wait to see if he got better? Or worse?

Could we wait until morning to go to the doctor? Or call him right now?

Should we race to the emergency room in our car? Or should we call the ambulance?

Not only were the days long, but also the nights. 

When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”

Mom smiled and said, “The days are long, but the years are short.”

My grandson turns a page and explains, “Look at that shark! What’s it’s name?”

His words draw me into the present. I smooth down his honey-colored rooster tail and inhale his little boy smell. He leans into me, and together we sound out a challenging word. He looks up at me and smiles in triumph. 

“I’m getting the hang of this, Grammy!”

He is getting the hang of reading, and I am getting the hang of the fickleness of time.

I think of my son, whose early years required several corrective esophageal surgeries before he got the hang of eating and swallowing. He’s a middle-aged man now, healthy and independent. 

Where did those years go?

I look down at my grandson and smile, 

grateful for this precious half-hour together, 

grateful for this reluctant reader’s victory over a pesky word, 

grateful his dyslexia that brings us together each night,

grateful for the joy of being part of his life, 

grateful for the wisdom gained through the special needs of my son and my grandson.

The days are long and the years are short, and in the eyes of God, both have eternal value.

Written by Jolene Philo

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

Experiencing Joy

This is the day the Lord has made, let us rejoice and be glad in it. (Psalm 118:24 NLT)

Today, yes today my soul is filled with joy.

And although I wish I could say that is my normal, I have to admit there have been many days that I have wasted the gift of the present day by fretting about the future. Oh, today though, I stopped and breathed in the experience of being present in the moment and discovered a bounty of blessings all around me. I was met with gladness, with pure joy that overflowed in my heart… you know the type of joy that makes you just want to get up and dance and skip around the room…yes that type of joy!

It was not an elaborate vacation or hiking in a flowering field, that brought such joy. No, it was sitting in the stands of my son’s Special Olympics track and field event.

The world seemed to have stopped as I took in the scene of over 100 athletes who all had challenges but not one single individual showed the struggle or the pain on their faces. I watched athlete after athlete, my son included, crossing the finish line with smiles and shouts of joy at their accomplishment. Here were individuals that had to persevere through so much to just make it to the event not to mention the physical or sensory obstacles that stood between them and the finish line. It did not matter if they came in first or last, their focus was locked on the finish line. I saw athletes stop running to go to another athlete’s side who had fallen, I saw athletes walking with what looked to be a debilitating limb, I saw athletes in wheelchairs powering through with their hands… all with one goal in mind, to finish!

I leaned further and further into the moment. I embraced the present and I saw modeled right in front of me how to receive the day as the Lord intended and I watched what it meant to be truly glad in it. And at that moment, I heard a whisper in my spirit say “Child, every day can be like this when you receive the day as a gift from Me and focus only on being present in it!” I breathed in again absorbing the lesson my Savior was teaching me at this moment . A lesson on how he longed for me to receive the gift of the day from Him and embrace it with gladness.

But some days are really hard on this earth, aren’t they? Some days the pain of broken relationships, or of illness, or of job loss, or of loss of life can take us down and steal our joy. But our Lord declares even those days, He has made! For me embracing this truth meant I needed to move the truth out of my head and into my heart. Such a journey would allow me to say through the pain, that there is gladness in my heart and rejoicing in my spirit even on such hard days.

As I sat and watch men and women with such gladness pushing through so many obstacles, tears of understanding of what it looks like to rejoice and be glad came to my eyes. And my soul was being transformed to see with the eyes of my heart. At that moment, sitting there on those stands, I was taking a profound lesson on joy.

So let me ask you a question, are you sitting with joy in your heart today? If not, what is holding you back from accepting the gift of the day and truly being glad in it? If you are struggling to find joy through the pain, then would you consider inviting God into your doubt, your hurt, and your fears? Come to Him authentically and let your heart be molded to His likeness so that you can receive every day (even the painful ones) as a gift from Him and experience joy!

Written by Carrie Park

From Carrie’s heart…

By God’s grace, my heart was taken captive by Him and I was brought to my knees as an adult acknowledging my need for my Savior.  God has filled my life as a wife, a mother of five, and as a leader of people. And through this journey, I have discovered a passion of mine to reach, encourage, and inspire others to live a thriving life with our Savior, Jesus Christ. 

​So come, grab a cup of tea settle in and find encouragement from Carrie’s blog Abiding in the Between here.

To The Caregiver Who Never Gets Time Off

“Be still and know that I am God.” Wait…don’t leave yet! Hang with me for just a bit, I promise this is for you. On my mind and heart this week has been the mom (or caregiver) who never gets time off or time away. I don’t know your name, but I’ve been you and I’ve been praying for you.

You have a child who needs constant care, like CONSTANT, like, you can’t go to the bathroom and have those 30 seconds of peace alone, or drink a warm cup of coffee with a satisfied sigh – a cold sip 2 hours later, with one hand occupied with your child, maybe.

No one else gets it. No one understands. Your child’s needs are so unique and significant no one else is either able or willing to care for him/her for a couple hours so you could just sleep, or breath, or step outside and look at the sunshine. You feel so alone. I feel your pain. I feel the weight you carry. I see the conflict in your soul – you LOVE your child! But you just need a break.

 And then there’s Psalm 46:10, “Be still and know that I am God” - like there’s time for that!? When your child is never still or quiet and you are on duty all day and all night, how are you supposed to find time to be still in God’s presence so you can know Him better? It feels like one more thing on our to-do list that will never get done, doesn’t it? Those impossible things that are forever out of reach.

Have you ever read Ps 46:10 and paid attention to the surrounding verses?

I’ll summarize them for you (because, of course, your hands are full and you can’t toggle to that other screen or grab a Bible right now)…there are earthquakes, mountains crumbling, landslides, turbulent oceans, flooding, nations in chaos, kingdoms failing. Then, “Come, see the glorious works of the LORD…He causes wars to end throughout the earth. He breaks the bow and snaps the spear...” And here it is, “Be still, and know that I am God! I will be honored by every nation. I will be honored throughout the world. The LORD of Heaven’s Armies is here among us; the God of Israel is our fortress.”

Psalm 46:10 isn’t a command to literally be still and spend lots of quiet time with Him. It’s not a command to do something. It is a promise that He is a refuge, fortress, strength and that He has all of heaven’s armies to help address those troubles.

It’s our job to go to Him as our refuge and then “be still.” The Greek word used there for “be still” literally means “sink, relax” it could also be said “stop striving and let go” and watch His awesomeness (aka “know that I am God). Doesn’t “sinking” and “relaxing” (it makes me think of a bubble bath) while someone else who is unconditional love, all-powerful and with legions at His command takes over sound absolutely blissful?

This verse is not a call to do one more thing. It is a call for you to stop striving and to rest in Him, His strength, His protection, His care.

On those days and nights where we feel worn so thin we think we might just wear away to nothing and we don’t even have the energy to think anymore, it’s past time for us to cry out to Him as our refuge, fortress, help, Commander of Heaven’s Armies – it doesn’t have to be eloquent, even, “help” is sufficient - and see what He does.

I’d love to hear about it. I’d love to put a name to these prayers I’ve been praying for “the mom who doesn’t get a break.” Drop me a message, I’d love to pray for you by name!

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.

Spiritual Warfare

Until recently, I felt like spiritual warfare was a way of over-spiritualizing experiences in life and the World.  It felt like people would claim spiritual warfare for a flat tire or the things that occurred to make someone late for bible study.  It felt hooky to me, but I knew there was truth to this idea of the enemy, at work against what God was trying to accomplish in my life. 

Early on in my time on church staff, some interpersonal conflicts began to impede the ministry work.  There was an unresolved tension and no real reason for these conflicts.  A wise friend/coworker gently guided me through the idea that the enemy was working in these places.  That his goal was to derail our ministry efforts and the harder we worked for the good of God, the harder the enemy would attack.  Until you feel these attacks first hand, it can feel like over-spiritualization of experiences of people giving power to the enemy for coincidences and inconveniences.  

Having the knowledge and tools to fight this spiritual battle is critical to all believers.  We are fighting a battle against an enemy, the bible makes that very clear.  Ephesians 6:11-12 states:  “Put on the full armor of God, so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.”

I should not be surprised when experiencing these attacks or seeing others experiencing spiritual attacks.  I believe worship is one of our battle weapons in the fight against the enemy. I find the words of worship music can drown out the lies of the enemy or send him running.  There is a song that I love that I feel sums up the protection God has for us, the weapons we have and what we are fighting. The song by Upperroom “Surrounded” starts out by saying clearly that God has prepared us a table in the presence of our enemies, praise and thanksgiving are my weapons. It repeats over and over “When it looks like I’m surrounded, I’m surrounded by You.”  The entire song feels like a defense to the attack of the enemy and it’s true, we are not alone in these battles, we are surrounded by the Spirit of God.  

In learning more about what the enemy is trying to do in my life, directly in opposition to what God is trying to do, I felt ill equipped. Knowing the more I pursued God’s love for me and my family, the more the enemy would be aware of my weak spots and try to enter.  My marriage, my kids, the ministry work I was doing, my friendships and more are all at risk for an opening to be seen by the enemy and to have him step in.  It only takes a little space for the enemy to get into our minds. The hard part is then removing him from these spaces and places in our life.  I am by no means an expert or even remotely equipped on this topic, but have come face to face with the enemy in my life.

Most recently, I remember a few months ago 2 very dark days filled with calculated spiritual attacks.  My kids were impacted, husband, dog, my own well being and the enemy even terrorized my dreams.  These two days were draining and difficult.  I felt like my world was in a delicate balance and one more thing added to the day would send it into complete implosion.  At the end of these exhausting days of what truly felt like a battle, I knew without a doubt that God ruled supreme over all.  He is on his throne and in control.  

We could see in the days leading up to this spiritual battle that tension was building.  We began to put on the armor of God and prepare.  We have a dedicated prayer team that we email out regular prayer requests to and we immediately sent an emergency prayer email giving the details of what was going on.  Immediately people all over the US and world began praying for us.  We guarded our hearts with truth and went into these challenges with immense peace, very little fear and a lot of unknown. How would our lives look different if we called on a group of believers more often to intentionally pray over our needs, our battles and our need for strength in these times.  What would a challenging day, doctors appointments or IEP meeting feel like if all over the nation we were calling on each other to offer critical prayers on our behalf?  I have to believe it would make a huge difference on the orientation of our hearts and potentially the forces at play in our lives. 

Not every day necessitates this full on warfare, but every day has opportunities for the enemy to take hold of pieces of our life.  Keeping close to the tools that will reorient our focus will guard against any effort of spiritual attack.  Some ideas I have to combat ongoing, insidious attacks are playing and worship songs, praying out loud, establishing healthy, regular rhythms with God to remain in step with His will for my life and memorizing scripture.  Being in a practice of pruning away the things in my own life that take away from God’s glory is also important.  Once the enemy is in, it is difficult to get him out.  

I know that the enemy will use any possible place to threaten the work of God in my life. Nothing is safe from him, unless under the protection of Christ. There is another worship song that my daughter and I love that we often turn on loud by Elevation Worship, “See a Victory” . The chorus goes, “Cause my God will never fail. No, My God will never fail. I’m gonna see a victory, I'm gonna see a victory…” It goes on repeating this truth, that we WILL see a victory because God never fails. His power is perfect and stronger than any demon or Satan. Be aware of the enemy’s schemes and be ready to support those who are impacted by his evil plans. I know my family will come under attack again and hope the body of believers will circle around us in offering a protective blanket of prayer. We will remain firm in the truth that God wins, always.

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

You're Grounded!!!

Let’s talk parenting!

 Parenting is one of the greatest joys and greatest challenges all at the same time. Overwhelming joy and deepest grief. This month, we’re looking at something we do daily as a part of parenting…DISCIPLINE. 

We want so much for our kids. We love them with everything we are and have, and yet so often our relationships with them are characterized by frustration, tension, and conflict. When we correct them, what we really want to see is heart change, but most often after a discipline issue parent’s feel they’ve missed the mark or that their kid just hard-hearted and resistant.

But all is NOT lost – there is hope!

In the Hope Anew Online Community during the month of April the theme has been parenting. There are 4 short videos posted there on the subject:

Video 1 – I share some philosophies and approaches Jonathan and I have come to embrace in our parenting after some trial and error and weeding through MANY parenting books & approaches and even counseling courses. I share some reviews of and links to those in the next blog post.

 I also share some things we do NOT do or STOPPED doing (because they were counterproductive, but the most well-known Chrisitan parenting advice says that’s exactly how to parent). And, I share some things we DO do and have found to be beneficial that’s rarely taught.  

Videos 2 & 3 – We take the last part of video 1 (what TO do) to the next level as we look at the book Discipline That Connects with Your Child’s Heart by Jim & Lynne Jackson 

Video 4 – Is about the power of vision-casting and blessing in our kids’ lives.

If you are finding that parenting is an area that leaves you hopeless, exasperated, or isn’t going how you hoped it would (beyond your child having extra challenges), hop on over to the Online Community and take a look at the videos and see what your next step could be in disciplining and discipling your kiddos!

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!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

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

The Hour

There has always been a time of day in which things seem to be extra hard.  The volume on the emotions are turned up high. It comes as predictably as clockwork each day.  As much as I try to prepare myself for this time, or just embrace it, I can't change the course of that time of day.  It’s in these moments of the day that I begin to question my every ability to do the simple, most innate things for myself and my family.  The morning after a particularly challenging evening, I found myself in the Walmart parking lot writing down the words of this poem.

THE HOUR

5:00- World is collapsing in on itself.

Can I multiply myself to cover all the needs? 

Put out the fires?

5:03-The worst parts of all of us

are sneaking out.

Quickly colliding.

5:13- Need to cook dinner, 

Recipe is too complicated.

Just can’t.

I think I forgot to buy the ingredients, or were they eaten?

I yell.

Get it together.

5:18-Second grade math homework.

The chaos clouds her mind.

She makes the same mistakes.

We do this everyday.

Why does it continue like this?

She’s refusing.

I’m at a loss, 

Be patient.

There’s not enough of me,

I’m withering inside.

Why can I not calm this part of the day?

5:23- Frustration welling up.

They are all fighting.

Now crying.

Lord, surround us.

Don’t even mention the needs of the dog.

5:30- Husband should be home,

No, he said he was working late.

Can’t do this.

I need to change the course we are on.

5:37- Don’t think this will help but- “Pandora play hymns”.

Sing even though you don’t know the words.

Sing even though it doesn't feel like you deserve this.

Dinner is leftovers.

It’s fine.

Turn up the volume on the music.

5:45 -Give someone a hug

Apologize for losing my patience, 

losing my mind.

5:50- Homework finished, incredibly.

Please set the table. 

I still need help. 

We can do this together better.

6:00- Daughter says the dinner prayer.

“Thank you God for my family, 

Did she hear me yelling?

For this delicious meal, 

It’s leftovers from last night!

My friends.

Yes, we need to feel accepted.

Keep us safe and healthy.

I can do this, we made it.

Amen.”

Hope.

Coincidence, I think not, that this poem was scratched down on the back of a piece of paper outlining St. Ignatius Loyola's Examen.  It is a method of prayerfully looking at your day and seeking to find God in it.  So in the company of the Holy Spirit we are invited to become aware of God’s presence and look back on the events of our day with gratitude. The mess of happy, confusing, fun, disappointing, ugly, beautiful moments that made up the day.  We are encouraged to become aware of God’s presence and movement in our emotions.  This is an opportunity for God to point out where we may have fallen short.  We then pick one moment of the day and pray through it with the Holy Spirit.  This could be a positive moment or negative moment, monumental or insignificant.  Allow the prayer to arise from your heart and push you to praise, repent, or ask for guidance. And finally, look forward to tomorrow. Ask God to go before you in tomorrow’s challenges and be a light.  Be aware of your feelings and offer them to God and pray for hope.  

The Lord’s love surrounds those who trust him.  -Psalm 32:10

Be joyful because you have hope.  Be patient when trouble comes.  Pray at all times. -Romans 12:12

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5

To me, there are no more comforting and hopeful words than those. That’s my verse.  A lot of people have a verse that just feels all their own, and that one has helped me up and held me up, has rocked me to sleep, and has carried me to morning many, many nights.  Of course, it isn’t solely my verse, it may very well be yours, too.  I think it brings solace to people in many stages and situations in life.

There is a certain amount of daily trauma that goes along with figuring the ins and outs of life for a child that is exceptional in one way or another.  At least, there is in our situation.

There is the  trauma I have felt as a mother waiting through an entire school day, just praying my child doesn’t wander from campus.  There's the trauma I’ve felt as a mother watching my son live life with a chronic illness and almost daily physical discomfort.  There’s the trauma I’ve felt as a mother watching many aspects of childhood just pass us right on by. I tend not to focus on the parts of life that are painful.  However, the mental and emotional toll is great.  For me, the worry is the hardest part to shake.  

I just want to do this right.  I want my children to live the very best life they can.  I think that’s what every parent desires.  So, those calls from school, the staring eyes at the grocery store when behaviors completely out of my childs control creep in, the setbacks at home--though they are mixed in with wonderful moments of thriving and progress and utter happiness, they are the ones that bring tears in the calm and stillness of night.  Those moments are the ones that flood my mind as I’m trying to sleep.  They seem to land on my heart and the weight can feel unbearable.  They lead me to reach for my phone and begin the reading and researching that I’ve spent countless nights engulfed in.  They lead me to strategize and come up with plans upon plans to help ease my child's pain and struggle through the tough spots.  

Then I think of my verse.  Weeping may endure for a night, but joy cometh in the morning.

Just recalling the words, stops me.  In the act of remembering that verse, I am suddenly brought back to knowing that I am not alone in this, and I don’t have to carry this on my heart alone. The heaviness lifts.  My children are not alone, either.  The hope and reassurance that my child has a beautiful and heaven-sent path ahead floods in.  It’s a cue to stop the wheels of worry and turn to my faith and hope instead.  

I’ve been down this road a night or two, and yes, joy always comes in the morning.  Nothing in the bright sunlight of a new day is ever as dire as it seems in the darkness of the night before.  The hope of a new day is real.  Even though our circumstance is still just as it was, there’s a clarity of mind and a different perspective that comes as we wake. 

When the night feels hopeless, it is a gift to me to be able to rest in the hope of the joy that is surely to come.

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.

2 Mental Health Red Flags for Caregiving Parents

2 mental health red flags for caregiving parents? Are you kidding me? I’m waving at least a dozen red flags every day!

That would have been my reaction to the title of this post when I was in the thick of caring for a medically-fragile kid. In fact, that would have been my reaction as recently as a month ago. But I had a lightbulb moment between then and now.

The lightbulb moment came while I facilitated a class for teachers about post-traumatic stress disorder (PTSD) in kids. We were discussing childhood symptoms, also known as behaviors, displayed by traumatized children. The class members wanted to know what kinds of behaviors are indicators that the trauma has evolved into PTSD.

“It’s not so much the kind of behavior,” I explained, “because most kids display these kinds behaviors at one time or another. “Red flag indicators for me are the intensity and duration of the behavior. An example would be what happens after telling 2-year-olds they can’t have a cookie. More than likely, a 2-year-old will throw a tantrum. However, 2-year-olds living with unresolved trauma and PTSD will pitch magnificent fits that are long and loud. That’s intensity.

Similar tantrums continue to occur whenever these 2-year-olds are denied anything long after the child should have moved past the terrible 2s. That’s duration.”

The words had barely come out of my mouth before the lightbulb turned on: Intensity and duration of behaviors can be 2 mental health red flags for caregiving parents, too.

I mean, let’s face it. Parents raising kids with special needs and disabilities face plenty of attacks on their mental health, including traumatic stress. Such as the stress of overwhelming, unrelenting caregiving demands. The trauma of sending a child off to surgery or hearing the heart monitor flatline. The stress of trying to manage unmanageable behaviors. The trauma of a receiving a difficult diagnosis.

Stressed and traumatized parents who want to be proactive about their mental health can do so by assessing the intensity and duration of their own reactions in certain situations.

For example, it’s normal for parents of kids who were hospitalized to avoid visiting hospitalized family and friends for a while. But it’s not normal if that parent has a racing heartbeat or sweaty palms while driving by a hospital. That’s intensity. It’s also not normal for that reaction to continue years after a child’s final hospital stay. That’s duration.

It’s normal for parents to get tired of taking children with autism to weekly behavioral therapy. But it’s not normal to be utterly exhausted after therapy to the extent that the parent wants to go to bed and pull the covers over their heads once the appointment is over. That’s intensity. It’s also not normal for that level of exhaustion to persist for several months or longer. That’s duration.

Here’s one more. If you have received negative news regarding your child via the phone–it could a difficult diagnosis, behavior or academic concerns from school, or even that an in-home care provider can’t make it again–you may experience a sense of dread when your phone rings. That’s normal. But dealing with the dread by refusing to answer the phone (intensity) for a week or a month or more (duration) is not.

By applying these 2 mental health red flags for caregiving parents in your own life, you can be proactive about your personal health. If you decide to seek a therapist, this post about how to find a trauma therapist can help you locate a mental health care professional where you live.

Written by Jolene Philo

Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families.

Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.

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.

A 19 Year Old Revelation

I've been a parent of a child with Special Needs for almost 19 years, and I just had a revelation.  I recently realized that even though I thought I had it "all together", I really don't.  I have some scars that are almost 19 years old and I'm just now learning how they impact my life and my mental health.  

This revelation was uncovered recently during a conversation with my therapist.  I started seeing a therapist because of some external adversity that I've had to deal with for the last couple of years.  This external challenge was amplifying my anxiety and panic disorder, and my husband and I thought that therapy would be helpful.  This past session we started really diving into things that cause me anxiety. She had me think about the times I feel anxious and what causes my panic attacks.  While panic is often stirred by an immediate crisis, my anxiety can rise at anytime. It’s something I can not run from most days. (Note:  Anxiety and panic disorder could be a whole separate blog post. I'm not addressing that here, but you should know that this is more common than you may believe, and professional help can make a difference.)  

My therapist has spent time getting to know me and what parts of my life have been difficult.  In my last session, I began telling her about Ben.  I told her about his birth and the way I felt the months afterward, how I responded to his diagnosis and  how I respond to him now.  As I talked I could feel my anxiety rise.  I began to have heart palpitations, stomach ache, dizziness, shakiness, tears and shortness of breath.

After she helped me calm down and relax, she made a pretty stunning observation.  She said "I believe Benjamin is the cause of your permanent anxiety.  You have PTSD and I think you are still dealing with the grief this has caused in your life.”

I was shocked.  I am thankful for him and I clearly recognize how he has blessed my life and others.  I feel equipped to help other special needs parents deal with a new diagnosis.  I even write about all the ways that Ben has expanded my life.  But, my therapist thinks that I have unresolved issues?  How could this be? 

In January of 2002 the diagnosis for Ben was determined about a week after he was born.  As I look back I see how my anxiety grew to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find answers to how to help. I remember every day living with a tightness in my chest, not wanting to see friends or even get out of bed. Always exhausted, completely lost, and totally overwhelmed. There was lots and lots of crying. I had anger at God. I had at anger at Ben. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible. 

As the months past, I began to understand more about Down Syndrome. I began to meet people who had children with Down Syndrome older than Ben and I thought I was gaining some solid ground against my anxiety. Ben was making progress in  therapy, and was incredibly healthy for a child with Down Syndrome, but with that came the overwhelming realization that we are in this for the long haul. His disability is a long term diagnosis. 

Now as I sat in the therapy it began to make sense. I have a special needs son.  A son who makes me question my parenting, one who will need help to live alone, a son who will never truly leave the nest. He has trouble articulating his feelings at times. He needs help with some daily living tasks. I find myself thinking of ways to help him become more independent but immediately feel like a failure when I am not consistent. I constantly clench my teeth, at times my chest feels as if an elephant were standing on it, and my heart hurts at times for my son who I know has a long life battling odds. I feel like I live  in a constant state of “waiting for the other shoe to drop” and can at times  feel the emotional spiral. 

 I know many special needs parents struggle with anxiety. Learning that my anxiety is essentially post-traumatic stress disorder is helpful.  I know that it’s relentless and traumatic in nature.  But, I know where it comes from now.  This awareness will also help me manage my anxiety.  I know that I can "fix” some things for him, but I can't address it all.  

Being a parent of an individual with special needs feels like you have to give the absolute best of yourself every single day.  We want to do the best for our children and be "on top of our game".  But, we also have to recognize where we need support.  I have a great therapist now.  I have also joined Facebook groups to find parents who “walk my walk”.   I can find answers in these circles with comfort and no judgement. I have a “tribe” of friends who love me and are there for me when days are tough. I have a church who loves me and more importantly love and include Ben. I am praying over time I‘ll get closer to “fixing” my anxiety the best way I know how. 

As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies. You are important. Your anxiety is real. Everyone needs some help at times.  Make sure to ask for help and be willing to accept it. 

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

Nine Ways To Make The Holidays Great

I saw on Facebook this past week a post that said “Ruin Thanksgiving in four words.”  The post received 186 comments in one day. I didn’t post a comment because I want to try my best to maintain positivity when all possible, but there is something about the holidays that evoke a sense of anxiety, fatigue and even disappointment. These feelings seem to be felt universally.  As I scrolled through the comments, memories of holiday gatherings of the past surfaced.  Burned food, awkward interactions with family, ex’s, political conversations (especially in an election year), missing critical food elements and more were represented.  

The question comes to mind, how can it be any different?  How can we switch the narrative to “make the holiday great in just four words.”?  How, especially this year- which has embedded a layer of fear and anxiety in so many, can we make a great memory of the holidays?  I sift through my memories both good and bad, I return to the simplicity that feels comforting in the holidays.  The year that we opted for a paper table cloth with crayons and paper plates was loads of fun for the kids and really easy on clean-up.  The year that the weather was so mild that we moved the table outside and ate while the leaves fell around us. When we celebrated with lots of friends or no one but our sweet babies, or special dinners with family who are no longer with us.  With so many ways to ruin the holidays, what are the things that make them great, truly special and really at the core why we bother to do all that we do to make it happen?

Top ideas for changing the narrative and making the holiday season great in four words :

1. This year choose less

Yes less. Less food, less presents, less rush, less stress.  Let’s just choose less. In choosing less you, choose what you need most and what makes you most happy.  You will find more out of that less, more joy, more rest and more content family time. We are in the process of moving this holiday season and have been living with less stuff in our house over the past few weeks. The children’s toys have been reduced to one box of playdoh and Legos.  Yes that’s all- 2 choices. This reduction has been very positive for everyone.  Less is freeing and I promise it’s better.   

2. Do what is easy

Sometimes the complicated recipes are just too much. Sometimes fulfilling all the traditions of years past feels really hard.  I have to admit I have been cutting corners in the kitchen more and more.  I have also been trying to look for the easy button more. How can I cut the parts out that don’t bring the most joy to the experience. This path is not a cop-out, but an attempt to spend more time in relationship rather than doing more tasks.  A friend mentioned today ordering her Thanksgiving from a local restaurant this year.  Although this cuts a lot of corners, it seems like a really great idea this year.  Not only is she alleviating many time consuming tasks, but she is also supporting a local business who may be struggling. She noted she was still cooking her famous biscuits, but getting help on the other parts.

3. Bring family in virtually 

This is no one’s preferred method of being relational, but especially during COVID and the heightened germ season, it’s a great alternative. It can also be helpful with challenging relationships in which a longer visit may be too much.  Make it fun and come up with a theme for the virtual party.  Everyone brings a festive snack to the virtual time, wear a fun hat or eliminate use of a word like “turkey” during your conversation.  

4. Make it kid friendly

Let’s just soak in all the good being a parent of young kids brings!  The year we put paper on the table and set out crayons was a fun memory for everyone.  Making it kid friendly also means getting kids involved. Let the kids help cook foods they like, or have them pick recipes from Pinterest to add to the table.  The more ways a child can feel a part of the holiday preparation the more they too will find joy in all of the parts of it.  

5. Do something totally new

Switching things up often eliminates the expectation of what it should be.  My mom made a delicious traditional green bean casserole every year at the holidays.  It was a family favorite.  A few years ago I was hosting Thanksgiving and I decided to do a new twist on as many of the dishes as I could find.  My thought was that it would be familiar but lessen the comparison to my mom’s version. My mom and sisters were especially concerned about the green bean casserole being altered.  I found an updated recipe and everyone loved it more than the old one.  Doing the same things each holiday provides rhythm and predictability, but switching things up can infuse a freshness to the celebrations that may have fallen away over the years.  Doing something new minimizes expectations engrained over the years that are hard to meet.  

6. Remember “why” it happens 

Why do we take a family photo every Fall? Why do we make so many dishes for one meal?  Why do we bring a real tree in our house (they are so messy!)? Why do we search for that specific present that is nearly impossible to find?  Whatever it is that feels so crazy or unnecessary, try to remember the why.  If you can not fully identify your “why” you need to assess why you choose to continue to do it.  

7. Find a quiet moment 

I don’t know when or where you will find this moment, but find it!  This is going to be critical to survive the holiday.  I promise there will be an opportunity to find this quiet moment.  It may be on a last minute run to the grocery store, by yourself, that you turn on YOUR music and sit in the car while the song finishes.  Maybe it comes when you wake up early to begin the cooking, or late at night when wrapping that present in secret.  Find this moment and recognize it and soak it in for all it offers in refreshment.  

8. Get some fresh air

We have had some tough days since quarantine started in March- more tough days that I remember having in 2019.  The smoothest days are the ones that we are outside for as much of the day as we can possibly squeeze.  Plan to be outside.  Go for a walk, ride a bike, rake a leaf pile and jump in it.  The fresh air gives everyone a new attitude and it also gives people needed space.  Set up a yard game and get out there and play. 

9. Think of serving others

Whenever I feel down on things, I turn to gratitude and then to serving others.  Find a way to serve others this holiday season.  I have seen people put snacks and drinks in a basket outside for the delivery people.  Give your mailman a note and a water bottle, write cards or make artwork for a local nursing home, buy new socks and keep them in your car for the homeless you may see. There are so many ideas, so get your children involved too.  Service and gratitude are key characteristics that we want our children to exemplify.  They won’t become better at these things without practice, so include them in the process.  They may have a terrific idea for how to serve someone and just need a little help. 

So there you have it. 9, four word statements to improve the holidays and add some ideas to refresh the holidays and not ruin them in 4 words.  Rather you can make them wonderful in simplicity, newness, serving and identifying your priorities.

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Three Things That Give Me Hope – Part 3

When we focus on current events in the world and things going on in our lives, it can be easy for our hopefulness to begin to falter. When we place our hope in finances, friends, family or resources (including medical resources for our kids), it will eventually fail.

This month we have been talking about hope and how to truly regain hope during challenging times.

The first week we looked at the challenges of staying hope-filled. The next week we talked about reflecting on God's faithfulness in our own lives as well as in the Bible. Last week, we talked about looking for those "God sightings" in our lives right now...finding the good in each day, even if it is as simple as the sun is shining and looking for where He is at work globally.

This week, we look ahead. As followers of Christ, we have a certain hope in Christ. We know that this world is not our home and that we will one day be with our heavenly Father.

What does our eternal home look like?

Below is one of my favorite passages about heaven.

Then I saw “a new heaven and a new earth,”[a] for the first heaven and the first earth had passed away, and there was no longer any sea. 2 I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. 3 And I heard a loud voice from the throne saying, “Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 4 He will wipe every tear from their eyes. There will be no more death[b] or mourning or crying or pain, for the old order of things has passed away.”

~ Revelation 21: 1-4 (NIV) 

There will be no more pain, no more sorrow, no more injustice. Our children will no longer be in pain or need medical treatments. They will no longer be looked down upon. They will be loved.

While the day to day seems long...at times never ending, eternity offers perspective. It offers hope.  

As you think about eternity, is there a particular passage in the Bible that gives you hope?

Perhaps you are not a follower of Christ, and would like to learn more about the eternal hope we have in him, I would love to connect with you more and share more about this hope I have.

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!

Three Things That Give Me Hope – Part 1

So how hopeful are you feeling today?

As I mentioned in last week’s article, hope can be a fragile thing.  In my case, it’s not usually just one big thing. I can typically push through if it’s just one thing. I focus on what needs to happen and take that next step forward. No, for me it’s typically a cumulation of things. They can be either big things or small. I get to the point of feeling overwhelmed and can’t see the progress that I expected or hoped for.

How about you? What brings you to the point of hopelessness?

When I get to this point and sometimes I get there more frequently than others, one of the first things I do is pause to look back.

I look back both in my life and in scripture.

I look back at other challenging times in my life and see God’s faithfulness. Sometimes it is easier to see His faithfulness after you’ve been through it, than when you are in the midst of it. By reflecting on His past faithfulness, it helps me to refocus. I no longer just see the problems that I am in the midst of but I see the one who has been with me through the entire journey. When I look to His word, I see the Creator. I see the One who lead the Israelites out of Egypt and parted the Red Sea. I see the One who loved me enough to send a savior. 

When I see these things, it helps me regain perspective. It helps me regain hope.

One way that our family commemorates God’s faithfulness is with a jar of rocks. When we clearly see God’s hand, we write that God sighting on a rock and place it in the jar. 

For example, there was a period in our youngest son’s life when we had to hand make nearly all his food. This meant grinding our own flours, making special smoothies and many other specialty items. Sarah was having to do this with a blender that just was not up for the task. In researching, there was a special tool for the kitchen called a  Vitamix but it was way out of our price range. In the whisper of a prayer, that wasn’t really even a prayer, Sarah asked God to provide a Vitamix. Not only did God provide this for her, but He provided it in the color she wanted…a nice cheerful red color!

This is just one example, of God’s faithfulness and it serves as a reminder to us during those hard times when hope is hard to come by.

When we look back, God’s faithfulness becomes apparent and our hope becomes less fragile.

What is one story from the Bible or one scripture that serves as an encouragement to you? What is one way that you have seen Him come alongside you in the past?

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!

Spreading His Wings

On Sunday we lost Ben.

He had filled his backpack full of things he needed for camp and headed out the door on foot to try to make it to Rockbridge Camp. Out of all the things he has lost because of quarantine, this has been the hardest loss. 

Ben loves Rockbridge because it’s an incredible camp for students with disabilities. We found this camp through YoungLife’s Capernaum ministry. It’s an awesome ministry that has really blessed Ben and our family.

When Ben left that day, I am not sure what he was actually thinking. Was he really trying to get to camp by foot? Or, was he just dying to go somewhere alone? I know what I was thinking, and all of the scenarios in my head weren’t good. In the first 10 minutes I had already pictured him kidnapped and I was scared!

After we realized he was gone, we all headed out on a hunt for him. His brother and Dad were on bikes and I was in the car. Despite our effort to fan out and cover a wide area, he somehow managed to dodge all of us!

Thankfully we finally found him 2 neighborhoods away! Looking back, now what seemed like an eternity really wasn’t that long. He was probably only lost for 20-30 minutes. But, it felt much longer.

While he had a bag packed “for camp”, I think there was more to his escape. Ben is 18 and just like any teen he wants to be independent. That’s something we all want, right? Many kids look forward to being able to walk to a friend’s house alone. Or, the day they get a license and can drive off and be independent. Or, the real independence of living alone. 

And then there it is again —the heart pain. I have felt these pains before. The pain of wanting him to have something that I can’t always give him. Once again, having to let go of what I want and see what I have been given. This has been my heartache my entire life, and I think it will forever be there. You see, I don’t know if I can ever give him the independence he wants. Of course he can eventually take a walk on his own— but I don’t know that I can ever give him the independence he wants.

Special needs parenting is hard. I promise you, I don’t ever regret the gift God gave me. Any day of the week I can list a million blessings I have seen just for having him in my life. But, my heart still aches sometimes. Sometimes I look at him and see an 18 year old who has come so far and other times I see how far there is still to go. We can hide behind our smiles and hang on to each and every milestone we conquer but it doesn’t make any of it easy. Our lives will look different forever.

But on this Sunday I just prayed to have him home. The thought of losing him brought panic, because I don’t know what I would do without him. Even though he can often make my life a challenge, he also blesses me richly. He has taught me to trust God with so many of the unknowns with Ben’s life. And, by trusting Him there, I’ve learned how to trust Him better in other areas. 

Ben has helped me see that God gives me the strength to be the mother he needs. I know I’m not perfect. In fact, there are some days where I feel like Ben and want to pack my bags and leave as well. Those days typically come when I’m tired, exhausted or sad. But even when these days are hard I have hope. My Heavenly Father promises me that “those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” (Isaiah 40:31)

So as Ben starts to spread his wings and find some independence in his own life, I don’t have to fear. I can be hopeful because of God. And, I can spread my wings as well. 

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

Not Alone

I have often felt lonely as a mom.  It’s a weird feeling when you are always surrounded by little people to also feel so alone, but I’m rarely really alone. Sometimes the depth of my loneliness as a parent feels suffocating. 

Who could possibly understand this feeling?  Truly, I am not alone.  In Isaiah 7:14 and Matthew 1:22-23 we are introduced to the idea of God being Immanuel, God with us.  This idea of God being with us is an idea I quickly took comfort in. Knowing I was seen by God in my struggles brings me deep comfort for my loneliness.  God is so many things, but having God with me is a place to take shelter. 

The depth of God’s desire to be with us is so strong that He has sacrificed his Son to bring us closer to him.  God is our shelter, protector, healer, comforter, loving father, He is wise, loving, faithful, unchanging, merciful, gracious, creative and he is all these things with us.   

There are so many times my children want me with them.  They want me to protect them and comfort them, show them affection, give them affirmation and remind them that they are loved.  Even though I am an adult I still long for those same things. 

God with me, Immanuel, is where I can find the love, affirmation, protection, healing and strength to be filled and continue to pour out to my children.  My oldest daughter struggled to learn how to ride her bike without the training wheels.  She worked tirelessly for 2 years to be able to ride successfully.  The entire time she was working on mastering this new skill she did not want me to let go of her. 

Having my hand on the back of her bike was a comfort she needed. My hand gave her the physical stability she needed, increased her confidence, and was a huge comfort to her.  Sometimes I want to have someone’s hand on my back as I walk through scary or new situations. I want to have God’s hand on me to increase my confidence as I interact with my child’s educational team at her school and ask for accommodations that will benefit her.  It can feel so lonely to navigate the series of waiting rooms and overwhelming to read the educational and behavioral reports on my daughter. In these challenging situations I am not alone.  I have God with me, offering similar comforts to the familiar hand that guides my daughter on her shaky bike.  

When the Israelites were wandering in the desert for 40 years, God guided them.  God led them as a pillar of fire and a cloud of smoke (Exodus 13:21).  Wandering. For 40 years. And God was with them as a visible presence.  Do you ever feel like you might be wandering in a desert?

I remember before we began our process of getting our daughter identified, I felt lost, wandering, disoriented.  I would move from one failed parenting attempt to another.  Reading blogs, books and anything that could help me feel like I had a handle on how to connect with my daughter.  I was not lost, nor was I wandering, I was being guided.  Do you know what the Israelites did as they wandered following this mystical cloud and fire?  They doubted, they complained and they felt that they were never going to make it out of it.  I have been there, complaining, doubting and feeling like I would never make it out.  Although my daughter’s challenges are quite mild, to see your child struggle in any way is painful.  Navigating this with God is a huge comfort. 

God deeply desires intimacy with us.  He wants to be with us in all situations.  God wants us to go to Him for our needs before we go elsewhere.  God wants to sit with me in the unknowns and the frustrations and also wants to celebrate with me when we have success.  We are his beloved children and he would rather we spend time with him then be busy, worried or distracted.  God with us, Immanuel, is an unending relationship with our creator. Immanuel is seeking us, waiting for us and guiding us into a deeper relationship with him.  This relational time brings joy, peace, comfort, strength and more.  We just have to be willing to be with Him. 

To grow closer to God we should go to God in prayer, walk with God, sit quietly and learn His loving, guiding corrective voice. Studying His word is how we grow closer to the God in us, the God with us, the God who sees us, the God who loves us and the God who deeply wants to be in an intimate relationship with us always.

Fear not, for I am with you; Be not dismayed for I am your God.  I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

Stressed Out?

How is Covid impacting your family right now?

 The list of ways Covid is impacting our families could probably be as long as my arm and I have long arms.

 If I were to ask you how you are doing right now, many of you may reply with the words “stressed out.”

 On average, most people don’t like change…especially change that has been forced on us.  Many of us had to find new ways of doing life or are in the process of figuring things out. We are holding onto future plans loosely. This change, this uncertainty leaves us feeling stressed.

Did you know that taking 5 minutes a day to do something that refreshes you has been shown scientifically to help with your stress levels?

Today, I would like to challenge you to pull out your calendar and schedule 5 minutes a day to do something that refreshes you. Treat it like a doctor appointment that you wouldn’t miss or reschedule.

Here are four FREE ideas that can be done in 5 minutes:

1. Deep Breathing – This effective relaxation technique significantly reduces stress levels. There are many techniques to choose from and they are very effective.

2. Meditate – Specifically, meditate on God’s word and the character of God. God is constant. He is unchanging. Nothing that is going on is a surprise to Him and He is in control.

3. Refocus on Gratitude –Yes, there is a lot of hard but there is also a lot of good change that is happening. For example, many families are less busy and are spending more time together than they did before. Each day, come up with three positives that you can be thankful for that day.

4. Laugh – You have probably heard the saying, “Laughter is the best medicine.” Save funny comics or links to funny videos on your computer. Intentionally seek opportunities to laugh even if it is a little silly or is at risk of being met with an eye-roll. 

I don’t know about you but I can just feel the stress melt off of my shoulders when I have a good laugh.

So there you have it. Four things that you can do for free and that can be done in 5 minutes. The REST is up to you… no pun intended. Before you click that x to close this screen. Pull out your calendar and schedule 5 minutes a day each day next week and plan what you are going to try.  Don’t put it off. This is important for you and for your family.

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!

Stage 5: Beauty in the Journey and Purpose in the Pain

Stage 5: Beauty in the Journey and Purpose in the Pain

This stage is still ahead for us on our traveling the country in an RV adventure and beyond. Sure, the adventure, experiences, and family time will be a tremendous blessing. But I think God has bigger plans than just that. After-all, I don’t think He pried our hands off of our beloved home and property just to give our family a 9-month adventure. (Although I plan to enjoy it immensely!) No, I think He needed to free us up for much bigger things. I don’t know exactly what that looks like yet, but I’m looking forward to finding out. In the meantime, I’ll enjoy this little adventure.

In every episode of the Hope Anew Disability Podcast we say, “We believe there is beauty in the journey and purpose in the pain.” Let me assure you, those are some hard-fought words that I absolutely could not have comprehended, let alone said or created during the first several years of our journey in special needs. So, if you read or hear that and think I must be delusional or crazy, you’re in good company. My former self would agree with you.

When I was in the earlier stages of this journey and I heard parents of kids with special needs talk about special needs being a blessing and how they have learned so much from their child. I would bitterly think that they either: 1. Had an easier journey than we had, 2. Were living in denial, or 3. Were making lemonade out of lemons and refusing to acknowledge the lemons were rotten (so I guess we’re back to denial).

Maybe you’ve reached this stage and can easily see and share with others the beauty in your journey and the purposes God has had in allowing, and maybe even intentionally giving, the pain. This phrase resonates with you and you love it. Maybe you aren’t there yet and this phrase stirs up anger or bitterness. If you fall into the second group, try to put that aside for the next couple of minutes and attempt to take in the perspective of those who have walked the journey ahead of you. Because I have seen parents reach this stage time and time again. It usually takes years and involves some pretty messy struggles and stages to get there, but it is where the journey leads if you keep traveling and working through the ugly, messy stuff.

 In this stage parents find:

• They can help encourage others who are traveling this journey.

• They have purpose in their lives and see purpose in their child’s life.

• They see the gifts of their child.

• They see the gifts other “disabled” (because some of them have abilities abled people will never have) people, bring to the world.

• They are forever changed in how they accept, love, and value others.

• They not only see the eternal value and blessings of life, but the value and blessings that exist now, even in this broken world.

• Their view of God has expanded.

• They understand God used pain and hardship to grow and refine their character, their perspective, their attitudes and that they are a different (and much better) person because of it.

• They would never choose to go back to the person they were before.

• They understand there is mystery in God’s plan that they may never understand this side of heaven, but they have learned He is worthy of their trust, even when they can’t see ahead and don’t understand.

• They can see the beauty in their journey.

• They can see purposes in their pain (and sometimes in the pain of their child).

They have built a new life. They are living a different life and dream than what they had originally envisioned when they were pregnant or getting ready to adopt. Yes, there are things they’d like to do that they won’t ever be able to do. But they’ve learned to enjoy other things that they can do. Yes, there will be things that are hard and continue to be hard. Yes, that makes them continually look forward to the day we go to heaven and all that pain and brokenness is forever ended. But they’ve learned, in the meantime, to see the beauty along the way and that the pain isn’t useless but has great purpose.

Written by Sarah McGuire

If you missed Stage 4, you can find it here.

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!

 Due to COVID-19, Hope Anew is waiving all membership fees for the community!

Just Get Over It

Do you know what words have never helped anyone get over their hurt, their pain and their grief? This phrase right here…“Just get over it.” Yet this is a phrase I have repeatedly heard others say to parents who are grieving the loss of a dream of a typical childhood and the challenges their child will face growing up.

Wouldn’t it be nice if in the midst of your grief, you could flip a switch and say, “I’m over it.” I will never grieve this again.  Life is good and I have completely healed.

However, that is not the case for many parents who have a child impacted by special needs. Sure, there will be periods where the grief subsides and the parent is able to dream a new dream and appreciate the incredible person that their child is but then there will be other moments when grief rears its head again and floors us. The grief is chronic.

Just get over it? How do I just get over it?

My son cut his leg this week while on a bike ride. What if I told him to just get over it and go on with his day? There would have been stones, dirt and grease from the bike chain left in the cut. What would have happened next? If left the way it was, the cut would have attracted flies and eventually become infected.

The reality is if I choose to just get over it, I am choosing to ignore it and just bury the pain. If I bury the pain, it will become “infected” and it will come back. It will come back as anger, resentment, health issues, sin issues and the list goes on.

When my son cut his leg, instead of telling him to “just get over it”, I listened to him. I let him share from his perspective what happened and then he washed off his leg.

Some of you may find yourself at this point of grieving. If you do, be assured that it does not mean that you love your child any less.

Healing takes time and we all heal at different rates. That is why a husband and wife can experience the same event but be in different places emotionally.

If you find yourself in this place of grief, I would encourage you to take a look at the Psalms and laments. It may even  be helpful for you to write your own lament. If you find yourself stuck in this place of grieving, it may be time to meet with a counselor so you can get that listening ear.

But whatever you do….don’t “just get over it” because you won’t.

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!

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.