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.

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.

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.

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.

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.

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.

"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.

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.

Confidence of a Five-Year-Old

I want to live with the confidence of a five-year-old.

That thought flitted through my mind while my grandson hauled out his art supplies the day before Halloween.

“I’m turning the kitchen into a haunted house because I just learned how to draw cats,“ he informed me as held up a picture. “I can draw them really good.”

The picture below is one his cats. At first glance, I thought it was a sheep.

He was so confident in his drawing ability, he took a break from creating masterpieces and gave his little sister a tutorial in how to make them.

She was awestruck by his skill. “Your pictures are beautiful,” she breathed.

I was awestruck by his confidence. “How did he develop such self-assurance?” I wondered.

He drew picture after picture, blazing through paper and tape as he hung them from every available space. I could see how the love his parents speak into him every day is building him up.

Tell us how that made you feel.

We love you because you are our little boy.

You’re a good problem solver. You keep trying until you figure it out.

Look at all the things you’ve learned to do.

We are so glad to be your parents.

Even when my grandson is at his worse, and his parents hold him accountable for his behavior, they cover him with kindness and love.

Everyone makes mistakes.

We will always love you.

Have I ever told you about when I messed up when I was little?

Whatever happens, you are our son.

We forgive you.

Every day, in every way possible, this grandson of mine is wrapped in kindness and reminded of his parents’ constant love. The foundation of security they continually reinforce gives him the confidence to learn to ride a bike, to tie his shoes, to ask for forgiveness when he messes up, and to trust that his parents will grant it.

I want to live with the confidence of a five-year-old, and I imagine you do too.

But how can we do that when parenting a child with special needs constantly exposes our inadequacies? When our inability to provide what our kids need makes us feel like failures?

We do it by imitating my grandson. By listening to the words our heavenly parent continually speaks into us.

In Jeremiah 30:3, our Father says “I have loved you with an everlasting love; Therefore I have drawn you out with kindness when his rebellious children were at their very worst.

In Romans 8:32, Paul describes our Father’s love by saying, “He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things?”

In the Old Testament God built a foundation of security under his children. In the New Testament, he reinforced it in the shape of a cross. This security gives us confidence to pursue treatment options, speak up at IEP meetings, connect with other parents, make difficult phone calls, to seek forgiveness when we mess up, and to trust God to grant it.

For the rest of my days, I want to live with the confidence of a five-year-old. Thanks to the example of a little boy who draws cats like a budding Picasso and the word of God speaking truth into my heart, I can. So can you.

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.

Stages In The Parenting Journey Part 1

In 11 days from when I’m writing this, our family is scheduled to launch out on an epic adventure. A 9 to 10 month cross-country RV trip. We are getting final details in place – paperless billing, homeschool supplies set, wardrobes minimized, sizes updated (growing boys – sheesh, all the fall clothes are too small), and so much more.

As I reflect on how this epic adventure came about, I see a great similarity in this actual trip and the process parents of kids with special needs go through in their journey. There are stages in both journeys and they parallel.

I’ve been asked repeatedly if this was something we’ve always wanted to do, planned to do, saved money to do. Uhhh, no. Personally, I always thought it would be amazing and cool, but thought it would never be possible for us because of the expense and upkeep of having a house while also getting an RV and leaving for months on end. And then…

Stage 1 – Shattered Hopes.

We learned our house had mold. Our dream house. The prettiest two acres you’ve ever seen bordered by pine trees giving it privacy, a lovely pond that gives my child, who is allergic to chlorine, a place to swim to his heart’s content, grandma and grandpa next door to love on my boys and for my boys to help them with projects, the most efficiently designed 4 bedroom house with large rooms and double closets I’ve ever laid on eyes with a dream kitchen and custom cabinets, a lovely workshop out back for Jonathan. Organic fruit trees, berries, and my favorite flowers dotted throughout the property. And oh the gorgeous welcome of the tree-lined drive that flowers deep pink in spring. But, I have been struggling with health issues for several years and no doctors were able to figure out what was wrong or how to help me feel better. Through a process of elimination and investigation we learned…mold. In our home and in our church, which doubles as our homeschool co-op building. The two places I spent nearly all of my time. I had become so incredibly sensitive to mold that in order to heal, even after fixing moisture issues and remediating, we knew we’d have to move. No more dream home and property, no more homeschool co-op, no more involvement with our church family at the church building. Crushed plans. Shattered hopes. Loss.

Does that sound familiar to your special needs journey?

When you were pregnant, so many hopes and dreams and plans for who your child might grow up to be. A sweet little girl with silky brown curls and a love of… maybe horses? Maybe rainbows? Maybe a math whiz? Or a bookworm? Who grows to be a teacher, doctor, accountant? Dad walking her down the aisle in her dream wedding dress. A delightful little boy with freckles who scares his sister with surprise frogs, plays fetch with the dog, collects rocks, and delights in watching the garbage truck on Tuesdays. A track runner? A football linebacker? A robotics champion? The possibilities fill your head with dreams and possibilities…but then a vacant stare, not responding to his name,  her ultrasound shows an abnormality, a seizure, lost words, flapping hands, a NICU stay – for months, surgeries. A diagnosis.

Life as you dreamed, hoped and planned will never be the same, will never happen. Life will be forever altered. You are crushed. Your dreams are shattered. Your heart is broken. What was will never be again. And what is ahead, you do not know other than that it will be hard.

At this point, you may jump right into action mode, might bury your head in denial (that may be okay, temporarily, it is part of the grief process after all), might get angry – at God, doctors, your spouse, yourself, or just life in general. You and your spouse may react in opposite ways. It’s not uncommon for the wife to jump straight into research while the husband defaults into denial and anger.

Just as we didn’t stay in the stage of Shattered Hopes when we found out that we had to move out of our dream home and leave our church family, this stage is not the end-all be-all in our journey as parents of children impacted by disabilities and special needs. In the upcoming weeks, I will continue to share how our rv adventure compares to our special needs journey and look more closely at the stages that many of us go through.

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!

4 Special Needs Parenting Reminders from a Deranged Robin

Special needs parenting reminders came thick and fast when we were raising a son with major medical issues. But he overcame his health challenges, became an adult, and flew the coop long ago. These days, special needs parenting reminders arrive in strange ways.

One example is the deranged robin who appeared on our deck as winter surrendered to spring. One morning I heard a thumping sound, like someone was tenderizing meat on the kitchen counter. But none of the cooks who live at our house were around. I shrugged, arranged my computer and materials at the table in front of the glass doors leading to our deck, and began to write. A few words into my first sentence, the thumping began again. I glanced up to see a robin smack its beak on the window glass, fall onto the deck, shake its ruffled feathers, and charge at the door again. And again. And again. All morning long.

From that day on, the deranged robin showed up as soon as the sun hit the glass doors. It attacked the door until the sun moved and the eaves cast a shadow on the glass. Between its first appearance and the solution that finally sent it packing over a week later, that deranged robin provided several special needs parenting reminders I'd like to pass along to you.

Reminder #1: The Simplest Solution Is Often Best

We assumed the robin was charging at its own reflection and piled boxes in front of the glass from the inside to block it. When that didn't work we put a deck chair in front of the glass door on the outside. Next we sent the dog out to guard the deck. The dog got bored and wandered off. We enlisted our 4-year-old grandson for the same purposes, though we posted him inside the door. He got bored and eventually wandered off, too.

Finally my husband examined the other glass door panel, the one the robin left alone. The only difference was an outside screen door–actually two screen doors, since the screen for the one the robin kept attacking had been tucked behind the other screen for the winter. My husband slid the extra screen door over the robin-pecked glass panel. Just like that, the problem was solved.

By simply observing our kids, by looking for what's different that could be causing behavior or health or learning problems, we may discover a simple solution, too. If the solution doesn't work, we can move on to the next one without wasting a lot of time or money.

Reminder #2: We May Never Know Why the Solution Works

My husband and I have no idea why his solution worked. Even so, the problem has been solved. This reminded me of times when we found ways to soothe our child or ease his pain and had no idea why our efforts worked. And that was okay because we didn't need to know why. We just needed it to work.

Reminder #3: Clouds Contain Their Own Blessings

I was hungry for sunshine this spring. But sunny days led to hours of deranged robin thumping. Not so for cloudy days. I appreciates the reprieve of cloudy days and was reminded of how our son eventually outgrew snuggles and hugs. Except when respiratory viruses kept him home from school. Then he wanted to be held and rocked. I relished those rare, fleeting times, and appreciated the blessings of less than optimal circumstances.

Reminder #4: Let Nature Do Its Thing

Our deranged robin left a lot of bird poop behind. Once we were certain it was gone, I wanted to spray the deck clean with a hose. But doing so meant asking our daughter and her family to clear everything from their patio area directly under the deck. Since rain was in the forecast I held off a few days, and the rain washed everything clean. I remembered how I wanted everything fixed immediately when our son was little. But the fastest solution wasn't always best. Often, the best solution required letting nature take its own course for his healing and restoration.

As you care for your child, I hope these special needs parenting reminders from a deranged robin make your day a little easier. Happy spring!

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. The book she is co-authoring with Dr. Gary Chapman, Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, will be released in August of 2019. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

 

The Polar Vortex and Gratitude: An Unlikely Combination

The polar vortex and gratitude. I never thought of pairing the two until the great polar vortex of January 2019. Even though I have lived through plenty of what we used to call "cold snaps".

•           I was 9 in 1965, the year that held the record low temperature for January 30 until 2019.

•           I was 25 and 5 months pregnant in 1982 when the mercury dipped to -45° when we were living in northwest South Dakota.

•           I was 33 in 1989 when school was called off for 2 days before Christmas break, which meant my third grade students had their anti-climactic Christmas party when school resumed in January.

The difference between my response to previous cold snaps and the 2019 polar vortex go far beyond a name change. My response to the 1965 cold snap was delight when Mom said she would drive me to school. In 1982, my husband and I piled into our friends' car and traveled 90 miles to go out to eat, though the thermometer was -20° at its warmest.

In 1989 our son born with medical special needs was 7, and his baby sister was a few months old. By then I was haunted by what our son's early years had revealed. His multiple surgeries, frequent invasive procedures, and nearly constant infections and illnesses showed that bad things happen even when you follow the rules and choose wisely. Therefore, my wisest course of action was to control the situation tightly, to protect my children, and keep everyone inside until the cold snap ended, or we ran out of Kraft Macaroni and Cheese.

By 2019 our son was on his own and doing well. We had begun an intergenerational living arrangement with our daughter, her husband, and their children, ages 3 and 1. We had gone through hard times and good ones. We had seen God faithfully provide doctors and therapists for our son. We had seen Him provide for every hospital and medical bill. We had seen Him provide when we changed careers. We had seen Him provide the houses we needed and could afford. We had seen how much better His plans were than ours. 

So when the temperature plunged in January 2019, when condensation streamed down the windows, dripped from the ceilings, and pooled on the floors, when the dryer quit working and the service people weren't making house calls, when the editor of my latest book for special needs families sent revisions with a short deadline, I didn't respond with my pre-motherhood abandon or with my post-motherhood iron grip of control.

Instead, I responded to the polar vortex with gratitude born of more than six decades of experiencing God's faithfulness. This time, I sat back to watch the latest installment of God at work in our lives. He didn't disappoint.

•           My husband and I saw God expose the condensation issues during preparations for an upcoming house remodel. Now we could talk to the contractor about what to do.

•           When the repairman said the dryer was toast, we were able to purchase one, used for 3 days and returned because the previous owner didn't like the color, for 1/3 the original price, and with the original warranty.

•           I asked friends to pray for me, specifically for wisdom and peace, while working on the requested revisions. The cold weather kept me home and focused, and the revisions went faster and more smoothly than expected.

 For me, the polar vortex and gratitude are closely linked, as is my gratitude for the privilege of raising a child with special needs. You may find that statement ludicrous if you are new to the role of parenting a child with special needs.

Thirty-six years into the job, I have come to trust God's plan for my life and the lives of our children. I have learned that the best gifts are not always easy, but they are always good. This is a promise I can trust and so can you.

This is a hope upon which we can stand together. It's a truth to remember when the next cold snap rolls in and God shows you how the unlikely combination of polar vortex and gratitude, as well as special needs parenting and gratitude, really do belong in the same sentence.

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. The book she is co-authoring with Dr. Gary Chapman, Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, will be released in August of 2019. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.