Every season has its challenges and joys.

Every season has its challenges and joys. 

God has been injecting that truth into my heart with particular intensity this week. 

I wish he would stop.

He began this exercise in my character development with a pain in my left side and lower back.  It was a familiar issue that usually clears up after 1 or 2 visits to the chiropractor. This time, the pain has gotten worse. 

I’ve been hobbling around the house like an old person, counting the hours until my doctor’s appointment tomorrow. Then I remembered that I am getting older.

Now I’m fine with the perks of this season of life. Being old enough to retire and pursue my own interests. Paying 80 bucks for a lifetime pass that gets us into national parks for free. Having coffee with friends when I want.

But age-related hip pain? I am not fine with that, and let God know loud and clear. At which point he injected a dose of truth into my dissatisfied heart.

Every season has its challenges and joys.

I tested the truth by taking a trip down memory lane.

The first stop was the birth of our son. This was a season of joy, followed by a special needs diagnosis and interspersed with challenges inherent to his condition. These continued throughout his early childhood. 

Through them all God brought just the right specialists, new medicines he could tolerate appeared on the market, and friends gathered round to bear us up.

The second stop was parenting him as a teenager and into young adulthood. We know now that he was living with undiagnosed post-traumatic stress disorder (PTSD). That led to many challenges. But watching his intelligence, creativity, humor, and talents develop brought great joy. 

In those years God led our son to gifted teachers, safe places, and hard experiences that eventually led to diagnosis and effective treatment.

The third stop began when our son and daughter started adulting in earnest. Our biggest challenge in this ongoing season is keeping our mouths shut and offering advice and assistance only when they ask for it. Another challenge is watching them pick themselves after they fail. This is also a season of great rejoicing when they pick themselves up and persevere. When they ask for help and respect our advice. As they encourage us to develop strong relationships with their kids. 

Every day we experience God’s blessings as he shepherds our family toward his will.

The fourth and final stop was the season of walking my mother through her last years of life. She died this past June after a slow and painful deterioration of her body and mind. The challenges were so constant, the joys so fleeting that my siblings and I, along with our spouses, rejoiced as she took her last breath and entered eternal life with Jesus. 

Through our tears, we sensed God’s peace and pleasure in the love and care we had given her for so long.

Today I saw a picture I took on Mom’s final, good afternoon. Her eyes were bright, her mind clear, and her smile infectious. Her joy made me cry, and I wondered, “Is the pain in my hip related to the pain in my heart?”

In answer God pointed to the truth he’d made clear at every stop during my walk down memory lane.

Every season has its challenges and joys, and he had been with me through all of them.

Whatever the doctor says tomorrow and however long my pain lasts, I can rest in knowing that he is with me in this season, too.

Written by Jolene Philo

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.

It’s Going to Be a Different Kind of Mother’s Day

It’s going to be a different kind of Mother’s Day for you this year.

God whispered those words to me as I waddled into the doctor’s office in early May of 1982. Never mind that my husband and I wouldn’t see our first child until May 23. My husband and I had felt our baby’s kicks for months. God’s whisper assured me that I was already a mother.

What I didn’t realize when God spoke to me was that He was preparing me for what only He knew was coming. Our baby would be born with a serious birth condition. It would make every Mother’s Day for several more years very different from what I expected. 

Some would be spent in the hospital with our medically fragile baby.

Some would be spent debating whether or not we should rush him to the hospital.

Some would be spent rejoicing that our miracle baby had become a healthy adult.

All would be spent realizing that had our boy been born in a different day and age, we would have had him with us for only a few days.

As the second Sunday in May approaches this year, I hear God whispering to me once again. 

It’s going to be a different kind of Mother’s Day for you this year, Jolene.

This time, God’s not referring to our son. He’s doing well. This time God is talking about my mother.

She is 94 and believes she is 103.

She is in hospice care.

She has lost over twenty pounds in the last four months.

She is, I know, soon to leave this world.

This is going to be a different kind of Mother’s Day, the last in a string of 66 years celebrating with her on this earth. As the day approaches, I can’t quit thinking about the similarities being with her in her long term care facility and being with my infant son during his many hospital stays. Things like…

Spooning Cheerios and only Cheerios into their mouths at breakfast.

Finding ways to keep them from falling out of bed.

Opening window shades each morning to let the light in.

Shopping for clothes to fit their constantly changing bodies.

Talking to doctors about medication changes.

Reading picture books that lead to delighted smiles.

Stroking their cheeks when they cry out in pain.

Holding their hands while they get injections.

Getting a care professional to clean them up when needed.

Pushing a call button for trips to the bathroom.

Sitting beside their beds and wishing I could do more.

Beyond all those similarities, these are the things that stand out to me. 

The absolute privilege of caring for my vulnerable loved ones. 

The absolute assurance of being right where I should be.

The absolute presence of God with us.

The absolute holiness of the first and last days of a life.

The absolute certainty that while Mother’s Day 1982 and 2023 were and are different from others I’ve known, God crafted them for my son and mother’s best good, to His great glory.

Written by Jolene Philo

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.

Organizational Strategies Are Saving My Life Right Now

Organizational strategies are saving my life right now, and my 94-year-old mother is the reason.

Our family is in a season similar to the early 1980s when my husband and I were parenting a medically fragile baby. Back then one medical crisis after another meant dropping everything, buckling our son into his car seat, and racing to the doctor’s office or hospital. Nowadays, calls from Mom’s long term care facility require snap decisions regarding her medical care or unexpected trips to her bedside.

Thankfully, I cut my organizational teeth as my son cut his baby ones. The process was drawn out and painful for both of us. Still, I’m grateful for lessons learned in those years because they taught me that organization can ease the stress of caregiving. Several organizational strategies are saving my life right now, and today I’m sharing seven of them.

#1: The Lazy Genius.

Kendra Adachi is host of the The Lazy Genius Podcast and author of two amazing organizational books, The Lazy Genius Way and The Lazy Genius Kitchen. She approaches organization as principles to apply in your circumstances rather than as tips that worked in her life. Her method helps me “lazy genius” how to deal with my caregiving situation, and it can do the same for you.

#2 Sticky Notes.

3-M introduced Post-It® Notes in 1980. I wrote notes to the substitute teachers who took over my classroom on a moment’s notice. Now I use them to write notes to myself about what I was doing before being called away. They are also handy for instructing my husband, daughter, son-in-law, and grandkids what to eat or not eat in the fridge or freezer. Those stickies are assurance that there will be food when I arrive home exhausted.

#3 Freezer Meals.

Yep, another food strategy. Because nothing stresses me more than having to think of what to feed my family when I’m emotionally spent. And nothing eases my stress like pulling out a freezer meal and leaving a sticky note with supper instructions (see #2) before dashing out the door to go to Mom. When I menu plan for the upcoming week, I make sure 1 meal is a recipe I can double, triple, or quadruple. 1 batch is for supper, and the rest are packaged and put in the freezer.

#4: iPhone’s Reminder App.

My daughter created several shared grocery lists using this handy iPhone App. Yes. Another food strategy. This time it’s because not having all the ingredients when ready to make a quadruple batch of something is also very stressful. And with 3 adults in the house who share cooking and shopping duties at several grocery stores, the shared lists let us communicate without convening a family meeting each week. Which I likely would miss when called away because of Mom’s latest health crisis.

#5 Electronic Library List.

This electronic list is available to card-carrying patrons of our local library. After I search for a book, DVD, or other item at the library website, I can click a button and add them to my list. When I go to the library, I pull up the list on my phone, find the item on the shelf, and delete it from the list. Your library probably has a similar system. For our family, which is deeply invested in reading, this list is better than sticky notes.

#6: Paper Calendars.

Wall calendars work for me in ways that electronic calendars don’t. It’s always in the same place in my kitchen. I menu plan and write big events on mine with Sharpie marker so a month’s worth of meals (More food. What can I say?) and events are visible at a glance. I also prefer a paper planner over an electronic one because flipping pages is easier than swiping screens.

#7: Pill Organizers.

Whether they hold vitamin and mineral supplements, pills prescribed by a doctor or over the counter medications, these organizers cut down on the “Did I take my pills?” or “Did I give my kids theirs?” confusion. I filled mine every weekend until a Facebook friend posted a picture of the 4 pill organizers she filled once a month. I was an instant convert. Not only does this practice save time, I can see what’s running low and order more right away. This decreases the likelihood of running out when Mom’s next health crisis hits.

These organizational strategies are saving my life right now. Bottom line––being organized allows me to better focus on Mom’s needs when they arise. However as you and I know much of a caregiver’s life, or the life of the loved ones we care for, can’t be organized or controlled. In those situations, God calls us to rest in His control over all things. When we do, He will reveal His sovereignty and provision in ways that lead us to deeper faith, greater worship, and confidence in Him.

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 at Amazon. See Jane Run!, the first book in the West River cozy mystery series was released in June 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.

Determining Where To Start as Your Child with Special Needs Nears Adulthood

Determining where to start as your child with special needs nears adulthood is no easy task. There are legal matters to address such as special needs trusts and guardianship, advocacy strategies to pass on to kids, and much more. The list is full of important things to address. Because your child’s eighteenth birthday is not yet imminent, they may be ignored.

You know what I’m talking about, right?

I’d like to give you a hand in determining where to start as your child with special needs nears adulthood. So today I’m sharing three–count ‘em–just three ideas. Whether your child is five or fifteen or somewhere in between, completing these three steps can help you jumpstart the process.

#1: Obtain Hard Copies of Your Child’s Medical Records

Electronic medical records are a great invention. They can also be very hard to access when hospitals and clinics update their computer systems. Who knows what will be in place when your child reaches adulthood? Therefore, it’s wise to obtain paper copies by contacting the practices of the doctors and therapists who treat your child. They can tell you how their process works and what costs may be involved. Most likely, you will be sent an electronic file to download and print out. If your child’s medical history is complex and ongoing, you may want to request records every year or two to update your paper files.

 #2: Write Down Your Memories of Your Child’s Medical History

Write down your child's medical history. You probably remember what treatments (for physical, mental, and emotional ailments) your child received, but your child might not. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. Your memories can fill in the gaps in your child’s medical records and shows that your child is a person, not a patient.

 #3: Share Your Child’s Medical History with a Trusted Person

Make two copies of your child’s medical records and history when you print them out. Slip one set in a manilla folder, label it clearly, and file it with your important papers. Package up the other set and give it to a trusted family member or friend. Choose someone who cares deeply about your child (include your child in the selection if at all possible) and will remain involved in your child’s life should something happen to you. Invite that person over for coffee and review the records and history with that person. Meet every few years for to update the paperwork and go over everything again.

Completing these three steps will ease your anxiety as your child nears adulthood. They may also help you build momentum to address other issues related to that important life change, so the transition is as joyful and smooth as possible.

 Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Feeling a Bit Lost?

Have you ever felt lost? I’m slightly directionally challenged, and before GPS there were times I’d be driving and suddenly I was in a town or city where I hadn’t planned on being. Sometimes that was scary, sometimes inconvenient, and sometimes it was fun as I discovered new places.

I accepted this about myself and used it for my benefit. When I moved to a new location, I’d just drive around, get lost and find my way home (with the help of a map) repeatedly. After doing that a few days, I had a pretty good mental map of the area and would no longer get lost or need to refer to a paper map very often.

The thing is, I had a goal, a destination. Even though I didn’t take the most direct path, I was not wandering aimlessly; although, if anyone was watching, it might have appeared to them like I was. I had a destination in mind, I just didn’t know the route to get there. Sometimes my life feels like that.

There have been seasons in my life where I’ve found myself in totally unknown, unfamiliar territory – like when my son was reacting to every food I fed him and I had no idea what was going on or what to do. Or when it was obvious he had significant developmental delays and major sensory issues that prevented us from going to most public indoor spaces and turned our lives and routines upside down. Not even upside down, it obliterated any type of normality.

It was just like showing up in a town where I hadn’t expected to be and having no idea how to get to my destination. Only, there was no map for reference to find my way. I just had to try one route and see if it got me where I wanted to go. And if it didn’t, try another.

Does this doctor have answers? No. Okay, how about that doctor? No. Well, what about this therapy or that intervention? No answers in western or allopathic medicine? How about in alternative medicine? And I just kept wandering, referencing various research, and trying different routes until we made progress in the direction of our desired destination – the ability to eat foods without reactions, improve cognitive function, and stabilize or decrease sensory sensitivities.

Wandering, feeling lost, and not having clear direction feels uncomfortable. It’s scary. Thankfully, I have a personal relationship with God who loves me, knows all, and sees all.

Even though I may feel lost and not know where I am or how to get where I’d like to be. He knows. He knows not only my practical needs, the destination He has in mind for me, but also what my heart, mind, and soul need along the way. If I stick with Him, ask for, and follow His guidance, not only will I get to the destination He has planned for me, I’ll be a better person when I get there. (If you don’t know Him, I’d be happy to introduce you.)

I’ll leave you with a poem I love from Corrie Ten Boom. If you don’t know Corrie’s story, she was a Dutch lady who helped shelter Jews during the Nazi occupation of the Netherlands. She went to a concentration camp for it and lived to tell her story. So, she knows a bit about dark, hard circumstances in life when you don’t understand and don’t know what’s ahead on the journey. Her book The Hiding Place is a worthy read!

To download your own copy of this poem, click 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.

The Holiday Season Can Be Hard for Caregiving Families

The holiday season can be hard for caregiving families. I spent Halloween, New Year’s Eve, and my birthday the hospital with our infant son. Because of his precarious health when he was young, several times we made the difficult choice to stay at home for Thanksgiving and Christmas instead of spending it with extended family.

I didn’t like making those choices. I didn’t want to miss the holiday traditions I’d experienced growing up. On our birthdays, we chose the menu for dinner and whatever dessert we desired. Thanksgiving and Christmas were spent with either Mom’s extended family or Dad’s, the women gathering the day before to prepare feasts that culminated in the most delicious homemade pies I’ve ever eaten.

At the beginning of each holiday when our son was hospitalized or we chose to stay home, I grieved what our young family would miss. However, as we experienced each holiday with people who weren’t part of our extended families, I found pockets of joy.

 We met nurses and doctors who gave up time with their families to keep our baby alive.

Our son received balloons and toys in the hospital.

We talked on the phone with our parents.

We received newsy letters and cards from extended family members.

We spent holidays with friends, sampling their unique Thanksgiving food traditions.

I perfected the family recipes for pie crust and fillings and brought them to share with friends.

Our 15-year-old son, when hospitalized for his final surgery, met his favorite NFL quarterback.

As each pocket of joy became part of my life, I could acknowledge my very real grief about what we missed without being devastated by it. I could move forward in faith, knowing that God would salve what we had lost with what would be gained. I could look forward to pockets of joy.

 The holiday season can be hard for caregiving families, but there are simple ways to insert pockets of joy into them.

Here are a few for you to try.

1. Prepare the same holiday feast as your far away loved ones and eat together during a Zoom or FaceTime call.

2. Schedule a time for extended family to watch a holiday movie and real time chat about it on social media.

3. Distribute care packages, prepared by your family and friends, to hospital workers who are caring for your child during the holidays.

4. Create fun family traditions that can be practiced at home, in the hospital, or wherever else you find yourself during the holidays.

The holiday season can be hard for caregiving families, but pockets of joy can be powerful. Our son is almost 40. When he reminisces about the holidays of his childhood, he doesn’t mention what he missed. He mentions pockets of joy–favorite toys, movies watched together, learning to make pies and other holiday treats. And best of all, having his picture taken with Elvis Grbac, the quarterback of his beloved Kansas City Chiefs.

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.

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.

Caregiver Fatigue

It’s real. It’s literal. It’s pervasive. It’s all consuming. When we haven’t slept a full night, half a night, or maybe not even a full hour at a time in days, weeks, months, maybe even years we get kind of tired, right? Sleep deprivation is serious business.

Yet, who else could possibly believe this is often life for the parent of a child with special needs.

I bumped into a parent of a newborn in a store the other day and they mentioned how tired they were because their baby’s days and nights were switched. At about a week old, that’s not unexpected and we can smile through it knowing these days (and nights) will quickly pass.  It is just temporary. But when that becomes life day in, day out, night in, night out; it really takes a toll on us.

I know when my child’s needs were significant, and I rarely slept for a full hour at a stretch for 18 months. I was exhausted. I was discouraged. I felt so alone. We were relatively new to town and I had no support system outside my husband who was working a regular schedule. I was at my breaking point. Did I mention, I was exhausted? Like really, really exhausted.

I was still going to church many Sundays. The pastor became aware of my exhaustion one Sunday and in the following weeks he would ask me how I was doing. Over the course of those weeks, my answer didn’t change. I was still tired. Yet, as the weeks rolled by and my answer, “I’m tired” stayed the same, the look I got from him changed from caring to condemning.

A few years later, my husband and I were meeting with another pastor regarding Hope Anew and coming alongside parents of kids with disability and special needs and he commented, “I wonder what goes through the mind of a parent when they wake up in the morning knowing what’s ahead for that day.” I replied, “You slept?” He smiled and nodded in acknowledgement of his assumption and the gap of understanding even as he was trying to the best of his ability to understand.

As caregivers, it’s easy to feel forgotten, unseen, not understood because so few people have lived this life and our circumstances. They can’t understand the load we are under and the challenges we are battling through every. single. day and night. We often focus on just making it through the next hour or minute and can’t think beyond that.

I know someone who does care. Who does see. Who does understand. We are not forgotten or alone. These words got me through many a screaming (my baby), crying (both of us), rocking chair night, “He tends his flock like a shepherd: “He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.” – Isaiah 40:11. I was a mother with my “young” and it promises that He will gently lead me. That He gathers me in His arms just as I was holding and rocking my little one in my arms. And He promises that to you too.

 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.

Mama Warriors

You know the old joke where you put a sticky note on someone’s back with a message and they walk around ignorant with others secretly laughing at them? As missionaries for 18 years, there have been many times we’ve had a target painted right on our back – by Satan. A few times, when things got unusually bad, I felt that target stuck there and took it off through prayer, prayer, more prayer, praise, thanksgiving, and faith.

Unfortunately, more often I ignorantly went on with my life, pushing forward as a wife, mom, caregiver, missionary, striving to make headway and often having it sabotaged. When you know that sticky note is there, it can be easy to take off. When you don’t realize it’s there you go on ignorantly struggling against all the wrong things.

I'm grateful for Naomi Brubaker and her insights on spiritual warfare . It's real. Yes, it can be over-hyped. But that doesn't make the fact that it is a reality in some instances any less real. Don’t throw the baby out with the bathwater. I’ve often been more guilty of being naïve to the influence and reality that Satan and his minions have in my life, family’s lives, and our circumstances and then I didn’t counter his influence.

If that’s true of you, I’d encourage you to spend some time praying for insight into areas of your life where Satan may have a stronghold or influence and then praying for God’s protection over your lives and booting Satan out. You’ll likely have to do that repeatedly in different areas, different ways, different times and circumstances. He is not a gentleman. Just because you told him to get lost doesn’t mean he’ll never try attacking again. If you’ve claimed Jesus as your Savior, you have the upper hand. Satan can attack (just ask Job) but you can counter and win through prayer!

Prayers that win spiritual battles include some or all of these:

1.     Praise – of God and who He is (SO POWERFUL!)

2.     Thanksgiving – to God for what He has done and good things He has given

3.     Truth:

a.     Acknowledging the reality of sin or wrong thinking in your life

b.     Standing in the truth of the Word of God and countering lies with it

4.     Faith – in God, who He is, His power, His authority, your standing, rights and authority in Him

5.     Word of God – it is your sharpest sword and is what Jesus used against Satan’s temptations in the wilderness. Read it, speak it, pray it! 

Lastly, if aren’t making headway or gaining victory on your own, and haven’t already, ask others to stand and battle with you in prayer! Sometimes it takes an army.

Let’s be mamas who stand up and fight for ourselves, for our husbands, for our kids, for our families, for our friends! We have powerful weapons, we just need to wield them!

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.

Thriving When First World Problems & Caregiving Problems Dominate Our Daily Lives

First world problems and caregiving problems are dominating my life right now. They’ve made re-entry after a month-long trip to celebrate my husband's retirement rather rocky. Here are a few examples of what’s been happening.

The installation of our new heating and cooling system required punching numerous holes in our walls…including my office. The work was supposed to be completed while we were gone, but won’t be done for weeks or possibly months.

That’s a first world problem.

Hospice re-evaluated my mother after she had bouts of major confusion and agitation while we were gone, but she still doesn’t qualify for their services.

That’s a caregiving problem.

The morning after a heavy rain, we discovered a leak in the new addition just as a workman came to deal with a backed up basement drain.

First world problem followed by first world problem.

My mother keeps asking when she gets to move in with us. I keep telling her that as long as work delays continue and our walls are pocked with holes, it’s not safe for her to move in.

That’s a caregiving problem solved by a first world problem.

That final confluence of first world problems and caregiving problems got me thinking about how they’ve impacted my life in the past.

Our newborn son’s condition at birth was an age old problem. His diagnosis and surgery at birth caused a host of complications and subsequent surgeries. Those complications were first world problems.

Had our son been born in a different country, not to mention in a different day and age, he wouldn’t be alive today. In other words, first world solutions for his condition caused first world problems and caregiving problems that our family dealt with for years.

During those years, all my thoughts, all life revolved around my son.

Was he getting sick again?

Did he need another surgery? Another test? Another procedure?

Could I pump enough milk to nourish his body?

Would he ever sleep through the night so we could sleep through the night?

Only rarely did my focus move from the immediate, the urgent, and the life-threatening to a broader perspective.

Only rarely–very rarely–could I move beyond myself and our son and see the blessings God had bestowed through our first world problems.

Our son was alive.

Many surgeons had the training to correct his birth anomaly.

His prognosis was good.

We had a supportive network of friends and family.

We had excellent insurance.

We had good jobs and understanding employers.

On the few occasions when I found the wherewithal to reflect upon the goodness of our first world problems in combination with the caregiving problems they caused, my heart beat faster. My breath caught. Tears flowed.

I saw the goodness and wisdom of the One who will wipe away every tear from our eyes in a world where there will be no more death, mourning, crying or pain (Revelation 21:4).

I saw, not the first world and the problems it creates,

nor my caregiving world and its problems,

but the world to come.

The promise of that world is where you and I can find the hope, compassion, strength, and endurance needed to thrive when first world problems and caregiving problems dominate our daily lives.

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.

The Practice of Breath Prayers

When life is swirling around feeling like it's out of control and we are completely exhausted, feeling bad about our personal health, spending too much time worrying, dealing with the same challenges day after day after day, it feels almost insulting for people to ask or talk about rest.   There is no space for rest.  The moment I take time to “rest” things fall more apart. Let’s be honest, even trying to use the bathroom is an ordeal sometimes, and a shower...please, not happening, right?  If there was a way to slip in effective moments of rest without doing any preparation, and without truly removing oneself from the needs of life, this could be a lifeline we need.  

There’s a practice I was introduced to in a mentoring class at our church called “breath prayers.”  This technique has helped me effectively recenter myself and get the lasting moments of rest I need throughout the day.  Engaging in the practice of breath prayer is an opportunity to exchange my stress and worry for peace with God.  While it is taught to be more of a full body meditation of breathing and relaxing the areas of our body we are holding stress, I find myself using breath prayers all the time without dedicating a place and time for quiet.  Engaging in this intimate communion with God is effective, and God ministers to us in exchange for the moments we turn our thoughts to Him, even if we are keeping a watchful eye on our kids.  

There is solid science behind taking time for the practice of breath prayers.  Breath prayers increase oxygen to our brain as our sympathetic nervous system is engaged when we are feeling nervous, anxious or stressed. This is our fight or flight response. Our body’s typical response when the sympathetic nervous system is engaged is increased heart rate, respiratory rate, sweating, interruptions to our digestive system and more. Intentionally working against these negative responses by engaging the parasympathetic nervous system is the science behind breath prayers. The parasympathetic nervous system promotes the maintenance of the body at rest.  Controlled breathing, paired with scripture, is what helps our body engage the parasympathetic nervous system and reconnect with God, rest and continue to press on with his strength and provision. 

Spend some time building your breath prayers and memorizing short scripture verses that speak to you in your times of need.  Breath prayers typically have 2 parts, an inhale and an exhale.  

Some scripture I love in the context of a breath prayer are:

Matthew 6:8-- (inhale) Father, you know (exhale) what I need.

Joshua 1:9 --(inhale) Do not be afraid (exhale) do not be discouraged (inhale) for the Lord my God (exhale) is with me always.

Psalm 46:10 (inhale) Be still (exhale) and know I am God.

Once you have chosen your breath prayer scripture,  inhale and exhale very slowly as you recite the words of the scripture to yourself. Breathe in deeply and slowly through your nose and feel your lungs fill completely. Try to focus on deeply filling your lower lungs/diaphragm so that your stomach expands while your upper chest remains still. Then slowly breathe out. The exhale should be the longest. Empty your lungs slowly and fully. Meditate on the words of the scripture as you breathe. Repeat several times over and over calming your body and mind more and more with each deep, intentional breath. 

I like to close my breath prayers with one final breath prayer--

(inhale) I am entrusting my _____ to you, Jesus (exhale) and let go of ______.

In a small matter of time, you have intentionally and effectively calmed your heart, mind and body, while connecting with God.  Even without changing your situation, or leaving the things at hand.

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. 

Disney with Ease

My family moved to Orlando Mid December 2020 and have tried to soak in all the fun that this town has to offer. Being cognizant of the unique needs of our children and our special visitors,  I have become aware of places that go above and beyond to make sure we have an amazing experience. One of those places is Disney.  Disney can be the most magical place on Earth or meltdown city.  Disney has a fabulous team accommodating guests with special needs.  They have a pass called Disability Access Services(DAS).  These accommodations are great and simple to get.  Having the needed accommodations during your day at the park can be vital in keeping the entire family happy.  Having a simple conversation with Guest Services at the parks gets the things in place that are necessary for the DAS pass.  Take a look at Disney’s website for the specifics about the DAS pass. Your first stop once you enter the park is Guest services to begin this conversation.  Here is a review of the accommodations my family has benefited from at the Disney parks and how we navigate a day smoothly:

(Universal Studios has similar accommodations, but I have had fewer visits to their parks.)

DAS Line access:  For kids who may have trouble waiting in long lines, especially in the sun, this accommodation is really helpful.  This is NOT immediate access to the ride, but rather you have flexibility to wait in other areas with a return time.  My family uses the Disney app to look at the wait times throughout the park.  I do this several times leading up to our visit to the park to get an idea of what rides are typically busy at which times during the day of the week we are planning to visit. Once in the park, we immediately check-in with the ride with the long wait time to make our return reservation time.  The cast member setting up your DAS pass can reserve this wait time for you when you meet with them.  The DAS wait time typically reflects the amount of time you actually wait in the line. 70 minutes in line means 70 minutes to use in other areas.  While we have this reserved wait time, we ride rides that have less than 20 minutes posted wait time which is tolerable for my daughter if in the shade.  We also grab a snack break, watch a show, shop or see a parade. Before long, we are ready to ride the longer wait time rides without any trouble.

• When you arrive at the park, choose your wait time for the longest time and check with Guest services.  

• You can only have 1 DAS ride reservation at a time.

• Check in with a DAS pass before breaking for lunch and dinner.  While you wait for meal your wait time will quickly pass

• With 2 adults, one can check in for the DAS line, while the other begins to walk to a show, lunch, parade etc.  We found that it was a challenge for the kids to see the ride and not ride.  

Rider Swap-  When traveling with little people or kids that may not enjoy a ride, Disney has a rider swap program. It took us a minute to figure out what this meant, but essentially, if one parent has to wait back with a child who can not ride a ride, that adult and 2 others can again without waiting.  No one misses the fun!   This will work in conjunction with your DAS pass.  You simply have to ask for a rider swap when you check in to ride the ride after your DAS wait time.  You can have a rider swap time and a DAS time at the same time as well.  

Cards VS magic bands-  My family uses the park issued cards rather than magic bands.  We clip all the cards together and manage our DAS Lines and rider swaps with the cards separated.  The reason for this is that it allows flexibility for the ride access.  We have not navigated the park with magic bands, but feel like it’s an added expense we don't need.  The cards can be swapped around between our family if one child quickly changes their mind about riding on a swap.  

Dining-  Our family finds this down time vital for a smooth park day. We want our kids to take in the healthy calories at these meals and actually rest.  It takes time away from riding rides, but allows for over stimulated, exhausted kids to get a needed break.  Making a dining reservation in advance is important, so when you reserve your park day, be prepared to make your dining reservation.  In-park restaurants are affordable, less chaotic, air conditioned and allow for everyone to rest for a bit before getting into the park excitement again.  If sit down dining is not an option, be ready to make a mobile order.  This option has less wait, but is not as restful for everyone. You can make your mobile dining order several hours in advance to be fully prepared.  Disney is proactive in addressing food allergies.  They ask that you inform them upon arrival at the restaurant of your dietary needs. They have options to accommodate common food allergies.   Disney also allows for guests to bring in their own food if allergies are an issue into restaurants and the park, simply inform the cast members at the bag check and the restaurant.

Relaxation areas-  These areas have been really helpful for my family.  Map out where these areas are in the park when you have a conversation with guest services.  These spaces are air conditioned and quiet.  An over heated, over stimulated child can take a needed break in one of these areas.  We split our group to allow for maximum quiet time in this space.  But while we are not together, we avoid the really desired attractions to do as a family. 

Snacks and hydration-  We have a medium soft sided cooler that fits perfectly under our stroller.  We load it up with ice packs (not bags of ice) and water.  I bring electrolyte powder to add to the drinks as needed.  Another snack tip for park days is freezing yogurt pouches and apple sauces the night before and adding them to the cooler.  They will either be a nice cool treat at the park or just the right temperature at the end of the day.  To minimize germs, I opt for individual servings of snacks which are easy to pack and throw away.  The ice packs come in handy when kids need to be cooled down quickly.  You can refill water bottles with water and get ice at any of the restaurants free of charge. We try to leave lunch with full water bottles!

Walking and mobility- A day at Disney can quickly rack up mileage walking around.  We have walked between 7 and 9 miles on our park days.  Being aware of the amount of walking you may be doing is important.  Taking a stroller even though it might not be used is helpful. It’s a great place to stash your stuff, but also gives kids a break from this walking.  My 8 year old daughter has been caught riding in the stroller and even took a nap in it one park day when she was fighting a migraine. 

If physical mobility is a challenge for your family, Disney has access lines that avoid the stairs that the typical lines have.  Cast members are happy to assist you through these lines.  The park itself has very few stairs and where there are stairs, there are ramps close by.  Navigating the park is easy, but exhausting.

Weather- When planning your trip, be aware of the temperatures in Orlando.  The summer starts early here and the hot temps last longer than we might like.  Choosing to come to Disney in the cooler months can make a really enjoyable visit.  Summer rain storms are typical daily, so check the weather forecast for the day and plan to be inside a show or ride when storms are in the area.  Also get the outdoor rides out of the way before a storm rolls in.  With any luck and planning you may be able to stay dry and watch a great show! Be warned, if you go inside to avoid a storm and leave your stroller outside, it will get soaked!  Look for covered stroller parking in those instances.

Souvenirs- Disney will get you on the merchandise, It’s all really nice stuff, but it quickly adds up, especially if you multiply things by 3 like I have to for my 3 girls. Avoid waiting till everyone is exhausted to shop, it makes it challenging to make clear decisions.  Also, make a plan for what shopping will look like.  You can scope out your store and souvenir in advance to avoid lots of shopping time.  Each day we went to the parks, the kids wanted a Mickey balloon.  The day we went to Magic Kingdom, the balloons were everywhere and the kids got me to say yes, but I told them we didn’t want to carry them around all day.  They didn't forget and at the end of the night as we were leaving the park, I was standing in line for the balloons.  I had no idea how much the balloons cost, but I was committed.  Never have I spent so much money on balloons, but also never have I seen a balloon last over 2 weeks.  Make a plan with buying souvenirs and stick to it! This is always a tension point for my crew. 

Things to bring and not into the park- Stroller, battery operated fan, baby or hand wipes, extra clothes, sunscreen, hand sanitizer, refillable water bottles.  I don’t bring a purse to the park, but use a fanny pack.  It is easy to ride all the rides with the fanny pack secure around your waist, but a purse is more difficult and not safe to leave sitting in a waiting stroller.

Most of all, have fun.  Disney is a really magical fun place to make memories for the whole family.  

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. 

Hold On Tight

If I could go back in time to those days before his birth, and have a chat with my pregnant self,  I would tell myself this about the parenting journey I was bound for:

1. It will be different than what you are imagining.

2. You will know, but not quite understand, the moment that you lock eyes that first day.

3. You will also instantly know that you are his person.

4. You are strong enough to rise to the occasion. 

5. You were meant for it, and you’ve got this.

6. God will lead you. Hold on to Him tightly.

7. Stop yourself the very first time you read what other babies his age are doing and your stomach drops, because he isn’t doing it yet. Just rock in that glider and stare into those beautiful brown eyes.

8. If you google that missed milestone one time or a million times, and get lost in your mind with worry, that will do nothing to change the outcome. Instead look at how intently he is listening to your voice as you read Goodnight Moon in his sailboat nursery. The worry is useless, and the outcome is not anything to fear.

9. When he begins to roll his toy cars in such a way that you feel it is less play and more some type of visual stim, a word you won’t learn for a few years yet, think about how happy he looks.  Make note of these things, but don’t fret. Instead, choose to enjoy the smile on his sweet little toddler face.

10. When you notice incredible skills happening far too soon in comparison to others, just marvel in it. Don’t read every article written about it, wondering why or what it means that he can do it.  Your nights will be far better off spent sleeping while you still can.

11. At a certain point there will be no sleep, so grab every wink.

12. When the sleep gets hard, you will manage. 

13. In case you already forgot number 4, you are strong and capable.  

14. Your child is also strong and unimaginably capable. Perhaps the strongest, most resilient person you’ve ever known. You’ll see.

15. When he struggles to sit quietly on the mat at library story time, just go to the park instead. 

16. When he runs from you and others say things like, “He’ll come back, just call his name.”, trust your gut and RUN.  He’s not coming back.

17. Start looking for the angels sent to meet him on his path. They are truly everywhere you turn. You will be amazed. He will recognize them right away.

18. You will see him form the most enduring bonds with these people.

19. Don’t waste a moment’s thought on those not meant for him.  He will recognize them, too.  

20. He will have some difficulties, yes.  Who among us is granted a life without them? Focus on the many triumphs instead. 

21. He will be completely misunderstood, as will you. Ignore this. Make no apologies and overlook the judgement of others. Live these days focused on the audience of your one heavenly Father.

22. He will also be completely embraced and accepted. It will bring glee and immense gratitude to your heart each time.

23. You. Will. Be. Enough. Don’t question that fact, but know that your faith, family and dear friends will also carry you when you need them.

24. Begin this prayer immediately. Pray for God to lead you.  Tell Him that you’re listening and ready to follow his plans for your little boy.

25. Walk next to your son, hand in hand, through it all.

26. You’ll learn soon that he’s come here to teach others things like compassion and empathy and humanity.  He’ll teach them some about fonts and logos, as well, but that won’t make sense to you for a couple of years. 

27. Your baby is perfect. One day when he is 8, he will look into your eyes and plain as day, give you every answer you’ve been searching for.  His self-awareness and self-acceptance will put your mind at ease in an instant and bring a calm to what at times will feel stormy.  It will be one of those beautiful moments in life that you want to capture, that you want to freeze inside of. 

28. Always remember that this is his life to live. He was sent here with a unique purpose just as you were. Remind yourself of that in the times when you feel like you must find all of the answers.  

29. You will grow through this time.  Your heart will grow. Your empathy will grow. Your heart’s desire to help other children will grow even bigger than it already was, and now with an entirely different level of understanding.

30. Lastly, it will all be okay.  I promise.  It will be better than okay.  His life will be amazing and full and happy and fun and he will know the abundant love of his adoring Mother.

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.

To The Caregivers

She was three, he was seven and I was in crisis.  I was overweight, overtired and overwhelmed.  I felt so sick and old. 

I felt all of this, but I so rarely reflected on my state of being that I almost didn’t notice that I felt this way at all. I was just not on my own mind in any way. I would read about “self care” and think it such an indulgent luxury.  I would get so taken aback at the mention of it, as if I was making a choice not to care for myself.  Of course I didn’t feel that was the case.  I was allowing my hectic circumstance to be the fall guy for that.  I was so deep into my role as caregiver that I couldn’t see how my body was struggling.  My child was being tested for vitamin deficiencies and receiving appropriate supplements.  Both of my children were eating pretty clean diets free from inflammatory foods, artificial ingredients and they were eating organic choices as much as possible.  I was not.  I was treating my exhaustion with food, and making all of the wrong choices. I was convincing myself that I deserved the joy that overindulging in food brought.  I earned it.  Eating was something I looked forward to.

There was no time for a spa day, or even to enjoy reading a novel.  There was time to get through the day, most of the night, and then crash into my bed, but not before “medicating” with some yummy meal or treat eaten way too late and consisting of absolutely terrible choices.  With zero help in the childcare department, jogs or trips to the gym were also out of the question.  So, this is where I was.    

Then the pandemic hit our world and our world hit the pause button.  Many people began to overindulge and neglect physical wellness in an effort to deal with all of the emotions living through the fear a pandemic brought on.  I suddenly wasn’t alone in this struggle.  So many people started  “medicating” with food as I had been.  Comfort food and sourdough bread recipes were all over social media, and many people soon felt ready to reign it in.  This was my window of opportunity.  Something was awake in me, finally.  I did a deep dive into wellness with others who had gained extra weight during the pandemic.

God led me to a plan that really helped give my body the respect it deserved. 

Encouraged by a family member, I dove in.  I still couldn’t get to a gym, and I still was running wild until far later in the evening than typical, but when I ate I was eating vegetables and meat.  I was choosing fruit and eliminating all of the things my child had eliminated years before.  I cut out those same artificial ingredients and inflammatory foods.  I began taking the supplements my body needed and I started pulling myself out of the fog.  I started loving on myself as I had always done for my children.

Quickly life became easier.  I found I could handle the hectic moments with more grace for myself and my family.  I realized that the way I love and care for my children, is the way God loves me. I was not caring for my God-given body as I should have been.  It is such a gift to be given a body in the first place.  Isn’t it?  

So many lightbulbs started turning on for me.  As much as, my role as caregiver to my children requires, as does my role as caregiver to myself.  It’s easy when you’re navigating special needs or medical fragility within your home to completely forget about yourself.  It’s not at all a case of that horrible phrase “letting yourself go”.  In my experience, it was a case of just completely forgetting my health needs altogether in the flurry of life.  We can’t do that.  We can’t get lost in the”figuring it out” and the “making our way through”.  We need to try to honor ourselves and our bodies and our children will be the beneficiaries.  First off, we’ll hopefully improve our chances of living longer.  Next, when we, as caregivers, feel well and healthy, have energy and aren’t flooding our system with terrible food additives and sugary junk we can care better for those we love.   Finally, I think when you’re taking exceptional care of what God has trusted you with, your heart feels lighter and you can begin to fulfill the role you have before you. 

Our homelife has calmed significantly in the last year.  There are many reasons for that. We’ve found appropriate treatment and a proper diagnosis for our child, we’ve settled more comfortably into this role of caregiver, and we have now turned our eyes toward caring for ourselves in the same way we feverishly care for our children.  

Everyone is the caregiver to something or someone.  It may be a child with special needs, it may be a beautiful golden retriever, and it may be a dear friend. May it always be that we are caregivers to ourselves first and foremost.  If you have forgotten yourself for a bit, as I did, it is my hope that reading this will serve as a reminder of what a gift our bodies are and of how deserving you are to feel outstanding in yours. 

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.

"Write Everything Down"

“Write everything down,” my adult daughter said.

I stared at her, equally amazed by her wisdom and my epic fail to practice what I’ve been preaching for more than a decade.

When I spoke at special needs and disability conferences–pre-pandemic of course–parents would ask how to be effective advocates for their kids. My top 3 tidbits of advice were always:

1. Let people in.

2. Don’t take no for an answer.

3. Write everything down.

How had I forgotten my own best advice this spring while advocating on my mother’s behalf? I’m blaming my oversight partly on the pandemic (it’s about time it was good for something), and partly on my inability to see that effective special needs advocacy practices are equally effective while advocating for the elderly.

I tore myself away from staring in amazement at my daughter–when did she become so wise?– and went into my office where I began to write everything down as she had advised. That was about 2 weeks after Mom’s health issues began, and the timeline of events was still clear in my mind. At the time this post was written, the timeline had stretched to 4 weeks and counting. If my daughter hadn’t said to write everything down when she did, the increasing number of events would have become muddled and my recording of them inaccurate. Not good.

Because effective special needs advocacy practices can be applied effectively during elder care advocacy, and vice versa, let’s see how the other two tidbits of advice can work for both populations.

1. Let people in.

Once I wrote everything down, I sent copies of the document to my 2 siblings. I add to it a couple times a week and send the updated document to them again. Why? First, it eliminates the need to send lengthy texts to keep them in the loop. Second, they send me feedback about what they believe next steps should be. Today’s update led to my brother and I scheduling a meeting we’ll attend together on Mom’s behalf. Our sister, who lives in a different state, suggested language to use during the meeting. By letting them in, our advocacy is united and more powerful. We do our loved ones, whatever their ages, a great service when letting people leads to more effective advocacy.

2. Don’t take no for an answer.

As a lifelong rule follower and people pleaser, this one’s hard for me. I trust and respect people in authority. I don’t want to question them. If I was the only person involved, I probably wouldn’t question them. But this isn’t about me, just like your advocacy on behalf of your kids. It’s about them, their care, their quality of life, and respecting their wishes. So when I detect inaccuracies or hear something stated from an incomplete perspective, I push back. I provide my version of events and share my documentation. Which leads back to where this post started.

3. Write everything down.

Mom will need my sibling and I to be her voice, her advocates, for the rest of her life. Depending on your children’s special needs or disability, you will be their voices and their advocates, at least for a time. By writing everything down we are equipping ourselves to speak well on their behalf, for however long our loved ones require our advocacy.

I’ve added a final tidbit of advice to my list, though it may not work for you. Would you like to know what it is? Listen to your daughter. She’s one wise woman!

Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. 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 at Amazon.

The Parenting "Long Game"

PARENTING can be a loaded word- it’s personal and relational and it comes in long stages.  There is joy mixed with fatigue and confusion.  It seems like, as a parent, we are often experiencing the polar ends of emotions.  Moments of hope are fleeting and followed by despair.  We are on mountain tops and sinking into the valleys in a matter of minutes.  You can read many parenting books and blogs, listen to podcasts and talk to professionals, as well as trusted friends and still feel like you are in the dark.  Sometimes we end up more overwhelmed than before we started looking for answers.  All this messiness is because parenting is personal and our kids are each unique. Additionally we bring our own mixed up parenting perspectives into the relationship to add to the emotional confusion.  Even within a family unit, parenting multiple children can look very different.  

On top of all of that, we take the outcome very personally.  We place the value of our parenting in the goodness of our children.  Am I an effective parent because my kids made it through dinner in a restaurant without making a scene?  Did my children exhibit kind, respectful behavior at a friend's house because I taught them all the polite things? And on the negative side of things; is my child going to struggle forever because I am failing in parenting?   The idea that our worth as a parent is a result of their good or bad behavior is FALSE.  The two ideas are not connected.  The true source, of both our worth and our goodness, comes from the Father, the same is true for our children. 

I have 3 girls, ages 8, 6 and 3, and parenting each of them the same way would be ineffective and unfair.  Parenting becomes personal because each child is unique. We have done a lot of ground work to establish the rules and values of our family.  Although the house rules and family values are the same, the way they have learned and experienced this varied.  We have gone through a lot of hard work to get here and now the lessons are learned through them trying out what we have taught them and feeling the consequences of their actions and independence. 

Take a look at the long game of being a parent.  The goal is not that they put their toys away, or tidy up their room, or have impeccable table manners.  The goal is that they have self-respect, compassion towards others, take responsibility  and can positively contribute to their family, community and the world through their own unique giftings. 

This long game perspective makes parenting highly relational. 

I felt like my family had a season where we were losing our relationships for the rules.  There was very little joy or fun and it was a battle over who was more persistent. The result was negative and loss of the relational ground we needed to be building with our daughters. Slowly that stage of parenting has shifted as well as our perspectives and their needs. 

What feels like we are in a hard phase that will never end; slowly, we are actually moving to a new place almost overnight and there is light.  I have appreciated the 4 phases of parenting outlined as Commander, Coach, Counselor and Consultant by “Focus on the Family”.  I can recognize that when it felt like a battle ground in our house, we were likely in the middle of the commander stage with 3 young kids. And now we have progressed to some coaching and some commanding as the kids have aged.  Don’t lose the relationship over the rules, don’t linger too long in the a stage, push yourself and your child to stretch when the time is right.  Don’t be afraid to return there when needed. Always remembering, the character and care of our heavenly father is being extended to us in these stages as we navigate life as well.  

After months of being “off” my parenting game due to moving, COVID, virtual school and so many other disruptions I feel like I have had to go back to the “commander” stage more than I would like.  I try to balance this with intentional time to build the relationship individually with each of my kids.  Today, we had a longer day of chores, but focused on the relationship as I took two daughters to get their nails done and later made a secret dessert for the family with another.  I feel more effective as a parent when I have made these relational efforts with my kids.  And I feel more effective as a parent when I make relational efforts with God. 

Invite God into the struggles and joys of parenting by prayer and worship.  He wants to share in this process, as He is a supportive, loving, present father.  

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. 

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

Making Memories Where We Are

Travel.  Wait, what does that word even mean?  It’s been so long since I’ve traveled I almost can’t remember our last real pack a suitcase vacation.  I bet a lot of us feel that way after the year that has just passed.  Many families have been home and kind of grounded from travel. If they have traveled it’s been mostly with the members of their household.  As I watched how people were affected by that and how they responded to having to stay home rather than travel or forego the multi-family beach house, it got me thinking.  I started thinking about how it didn’t feel all that different to me.  I thought about how I’ve been watching families experience travel and vacations from the pages of my social media accounts for years, while seated on the same couch cushion of my sofa.  It dawned on me that this past year gave other families just a taste of how families like mine often function.  

Every member of my immediate family loves to visit and explore new places.  There are various reasons that our opportunities to vacation have virtually come to a standstill, one of them being finances. The cost of therapies and such can add up, and really do a number on your disposable income.  Another reason is that certain invitations to travel that were once there, are no longer there.  None of the reasons, though, are the needs of our exceptional child directly.  Our family could easily accommodate those.  Families in our position know how to make the correct arrangements and preparations. 

If this is your situation, please know that you are not at all alone. For our family, regardless of these hurdles, we were determined to still get out there and experience wonderful times outside of our home.  We’ve really found great ways to work around the obstacles and continue to see new places and find what we like to call “adventures''.  Our adventures consist of day trips doing anything we can find with the one requirement of being back home by bedtime. I’ve become our resident adventure planner, and my family has come to depend on these day trips.  So much so, that the first thing I’m asked on a Friday afternoon is, “Where is our adventure this weekend, Mom?”  

They may not be the same as a week in some fancy resort, but our little day trips have really added to our life experience.  You don’t have to miss out on getting away, just because of your family's differences.  It can just look different.  We’ve visited landmarks and historical spots that I never knew about.  We’ve had beautiful days in state parks and on the beach. We even found an app that guided us through a driving tour of Washington DC!   I do my best to plan every detail, so I can pack our minivan chock full of anything and everything we will need for the day.  With certain food restrictions among us, and special diets, I stock the backseat with a cooler full of approved, but exciting, choices for snacks and meals. We really make a pretty big deal out of these trips.  I tuck in special blankets and use fun pillowcases, to help make that van seat cozier than just a typical weekday trip to the grocery store.

I think it all boils down to finding the joy right where we are.  I don’t mean physically, but more where we have found ourselves right now in life.  Travel does not need to be extravagant to be memorable.  Sure, it may be a while before we’re planning our family adventure to DisneyWorld. In the meantime, though, I can’t think of anything more joyful than the look on my children’s faces as they hop into that loaded up Honda Odyssey bound for a day spent discovering and making beautiful memories.

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.

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.