There Can Be Respite in the Sleepless Storm

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

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

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

Isn’t that what a mom does? 

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

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

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

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

Written by BreAnn Tassone

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

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

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

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

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

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

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

 In this stage parents find:

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

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

• They see the gifts of their child.

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

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

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

• Their view of God has expanded.

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

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

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

• They can see the beauty in their journey.

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

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

Written by Sarah McGuire

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

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

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

Using the 5 Love Languages to Help Traumatized Kids

Using the 5 love languages to help traumatized kids makes perfect sense to me. Not just because I’ve written extensively about childhood trauma and how to adapt the 5 love languages in special needs families. But because I’m the parent of a son affected by trauma and a former educator who witnessed the positive impact loving adults can make in a child’s life.

The love languages are a simple tool that parents, teachers, day care providers, pastors, medical professionals, therapists, and other adults in children’s lives can use to amplify that impact. This is true whether a child’s trauma is caused by abuse, removal to foster care, divorce, natural disasters, accidents, the death of a loved one, painful and invasive medical or dental procedures, homelessness, or other overwhelming events.

Here’s why I believe using the 5 love languages to help traumatized kids is worthwhile.

The love languages help children feel safe. Traumatic events decrease a child’s feeling of security and safety. After the traumatic event, they need assurance that they are loved and safe. When those assurances are delivered in the child’s primary love language, the child will be more receptive to them. The love languages enhance communication. Children affected by trauma require frequent reminders that they are safe over a long period of time. The more trauma they’ve experienced, the more reminders they need. By speaking a child’s love language to deliver that reassurance in a variety of creative ways, they are more likely to hear and accept it.

The love languages improve observational skills. A child’s love language can often be determined by observing what motivates them, what calms them, and what they choose to do in their free time. Another technique is to use one love language with a child for a week for 5 weeks. Throughout the process, the child’s responses to each language is observed, recorded in a notebook, and evaluated to determine the child’s language. In the case of children dealing with trauma, those observations may also reveal what triggers and frightens them. This information can be used to eliminate trauma triggers and increase a child’s sense of safety.

The love languages make us more intentional. Once we know someone’s love language, we can  intentionally insert them into our relationships. We can make them part of our kids’ daily lives and routine. Kids living with trauma thrive on routine because its predictability increases their sense of safety.

The love languages can provide insight for mental health practitioners. The love languages are a tool that can help traumatized children feel safe, but many need professional treatment to heal the mental wounds caused by trauma. A good trauma therapist will appreciate tips about how to gain a child’s trust and develop a good relationship, so go ahead and share your child’s love language.

I encourage you and your kids to visit the 5 love languages website where you can take free quizzes to determine your love languages. The book Sharing Love Abundantly in Special Needs Families offers more guidance about how parents raising children with disabilities can determine their love languages and how to adapt them to meet a child’s unique individual needs.

Written by Jolene Philo

If you would like to learn more about using the 5 Love Languages to help children who have been traumatized, you won’t want to miss this week’s podcast that we did with Jolene. You can listen to it here.

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 4

Stage 4: Momentum

The beloved house sold and the future we had dreamed of there was gone. We were out and temporarily living with Jonathan’s parents. What now? After evaluating our needs and resources: I needed a nearly new house that is mold free. We weren’t in a financial position to allow us to get that. One quarter to one third of our income was earned on the property with side businesses, so that was gone. We had very minimal household goods or furnishings, so furnishing an entire house at the same time wasn’t possible either. We also simply didn’t have a peace about buying another house right away. 

As we considered these factors we thought, what better time to get an RV (they come furnished) and go on a cross country tour!?! We don’t have many belongings to store. Our work is already remote. With no housing expenses, we could afford a new travel trailer that would be mold free and warrantied. So, the idea took shape and we dove into researching living costs, depreciation, how-to’s, socialization, how the whole camping full-time thing works, memberships, etc. We left to pick up Ruby (our travel trailer) in Mississippi the day the shut-down order for Indiana came into effect at midnight. So exciting!!!

It wasn’t all sunshine and rainbows. We hit some snags. She flooded the first night we had her as the dealership had installed a washer/dryer unit and then removed it but had forgotten to shut off the water valve. There were some things that weren’t installed right like the front door and the outdoor kitchen door that had to be adjusted and replaced or latches that didn’t catch on closets and drawers. We actually had quite a list, but it was all covered under warranty. And from our research, we knew to expect several things like that as the first owners of an RV as everything shakes down. There may have been one oopsie that wasn’t covered under warranty and that made us thankful for insurance. 

We spent hours upon hours researching, planning, dreaming new dreams, and getting set up. We used her for bedrooms, office, and school space for over four months throughout the pandemic as we have mooch docked (that’s the term for parking and plugging in at a friend or family’s property) and are looking forward to the adventure ahead and all the places she’ll bring us while having the comforts of home right with us. We did a trial trip to northern Michigan that showed us some things that are working and set up great and some that could be tweaked and made better. Already I’m healing and having more energy.

Ideally, to make the analogy between our traveling journey and the special needs journey, we would be a few months into our trip. We’d have our routines and patterns down. The learning curve would have leveled out. We would know how to navigate through all the memberships, and which are our favorite apps for each purpose needed – seriously, I think I have 5 apps for finding camping sites, 3 for navigation.

In the special needs journey, the same thing happens.

After the shock, disbelief, overwhelm, research, and initial interventions, therapist, doctors, crisis, etc. and the super steep learning curves involved in nearly every area of your child’s (and now your) life, it starts to level out. You now know what to do if X happens. You become an equipped advocate for your child. You still may not sleep well as you listen for the beep of that breathing machine, but you know exactly what to do should you hear it. You know when a therapist is absolutely NOT going to be a good match for your child before the child even meets them and avoid it by requesting they be assigned to a different therapist. You know to stock up on chocolate and tissues before the next IEP meeting. You hit your special needs parenting stride and while life isn’t easier, it is less overwhelming.

If the soul questions haven’t hit before now, they often do now. The immediate crisis and initial follow up has been handled and now there’s more emotional energy and time to stop, think, feel, and contemplate the drastic changes in your life. Even if you asked some initial “Why?” questions, they often go deeper now: “God where were you? Why did you abandon me? Us? God, why do you allow evil in the world? God, I’m so angry at you!!! Why didn’t you stop this? Why don’t you intervene? Does praying even work? Do you listen or hear at all? Are you real? Are you good? I don’t know if I believe in you anymore.” This can go into a full-blown questioning of your faith in God, who He is, if He exists, and your place in this universe.

These questions can last a few months or many years. They can lead to wrestling with all the questions and God and finding answers, tearing your faith down to its foundations and rebuilding, staying angry and bitter at God indefinitely, or to walking away from Him entirely.

It’s up to you. You may not be able to change how quickly you go through the process of settling doubts and questions, but you do choose whether you will continue to wrestle with God and your questions and doubts or if you walk away. It takes courage to ask unsettling questions and it takes strength and energy to continue to engage and wrestle. It’s messy and unpleasant. But, if you keep at it (even if it takes years) the rewards are life changing and immensely good as you’ll see glimpses of when we talk about Stage 5.

If you missed Stage 3, you can find it here.

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!

A Good Habit To Break

I overheard a teen at the check out counter the other day use the word "retarded." He wasn't talking about someone but something that was "retarded." Believe it or not, I hear it fairly frequently.  When I do, I try to be polite and let it roll off my back. I'd even say it doesn't rank high in my list of pet peeves since most people don't even think about what it really means.  

The R-word is an expression used for retard or retarded, words considered offensive and disrespectful when used to describe people with intellectual disabilities.  It is also used to insult people, places, and things.  The verb "retard" means to hinder or to make something slow. "Mental retardation" was introduced as a medical term for people with intellectual disabilities , replacing terms that were considered to be more offensive.

Over time, the word "retard" came to be used as an insult, tossed around the playground as a synonym for "stupid" or "dumb." It is not a respectful way to refer to individuals with any kind of disability.

We often fail to understand how words can hurt until they become personal. Right now our country is in a war of words. Books have been written to teach us how to use politically correct words for race, religion, and politics. 

While 'disability awareness' isn't trending like some other topics, I hope you're willing to think about this population for a moment today. 

Here are a few thoughts from a mom of a kid with special needs:

1. Stereotypes are crippling. It affects how the world views my son. He is not dumb or stupid, just a person with  genes ordered differently that you or I.

2. I wish that Ben's siblings never had to hear that word.  I don't want them to think of their brother as "less than" in any way.  He is much more than his intellectual capability.  

3. I'm not trying to censor anyone's language, or be politically correct. I just want to use words that provide appropriate consideration, dignity, and respect for people with disabilities.

4. I'm also not trying to shame anyone.  I've used "stupid" or "dumb" in the wrong way before having Ben.  But, having Ben has taught me that the value of a person is not found in their cognitive abilities. 

5. It's never too late. Maybe you only use the word occasionally or maybe it's a habit. But it's never too late to stop. Here's a way I can help you.

Every time you are about to say the R word... please think about the people you are hurting when you you throw around such a useless word.  There may be someone within earshot that has a friend, sibling or child with a disability.  Consider if their loved one should be reduced to "dumb" or "stupid".  

Also, think about the value that those with disabilities bring into the world.  For example, my kid brings more laughter and happiness to my life than I could ever imagine.  He takes life in stride and could teach us all to not take things so seriously.  Rather than being "dumb", it's almost like he is a genius at teaching joy.

He has compassion. He feels and loves big.  And when you love big, you can also feel hurt deeply.  He hurts not just for himself but for the ones who are hurting around him.  He has a Master's degree in compassion.

He has accomplished many things. He plays soccer, baseball, runs track, and was manager of the Middle School basketball team, High School baseball and football team. 

He is daily teaching me about loving, laughing, patience and working hard.

So the next time you think about using the "r" word just think about him!

It is really a good habit to break and worth it to us!

Written by Leigh Ann Kaman

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

Stages In The Parenting Journey Part 3

That last two weeks I have shared about how our current situation with selling our house due to health reasons and going on an epic family adventure bears similarity to many of our journeys as parents of children impacted by special needs. If you missed those, you can catch last week’s article here.

Stage 3 – Movement: First Unsteady Steps Forward

We were able to keep many kitchen tools and most clothing that was a single layer. Nothing upholstered or thick, no couch, comfy chairs, shoes, coats, papers, books, pictures, nothing made of particle board, etc. Anything that we were able to keep had to have every single surface thoroughly washed and wiped down with the mold cleaning solution before packing it. Our hands had to touch and sort every single item. Many dear, treasured, and sentimental things were simply thrown into a garbage bag or trailer for the dump…my wedding dress, photos of the boys’ baby pictures, our engagement night pictures by the pond out front that would soon no longer be ours, art the boys had drawn for me, Christmas stockings made by grandmothers and great aunts who are no longer alive, the china cabinet we bought on our honeymoon.

The items seemed endless and the process took months. Items we had saved money for months or years to be able to buy and finally were able to add them to our house to make it a comfortable, welcoming home became trash. Some items we sold in a moving sale (before the pandemic) for pennies of what they were worth. Two decades of building a home all gone and no insurance money to replace things. It was all consuming, that’s nearly all I did those 3+ months. Every. Day. Sort, trash, wash, cry, repeat. Just surviving through hurt, grief, and managing the day-to-day task of getting through the crisis.

With special needs, you get to the point that either your time limit has expired, and action must be taken immediately, or your research has progressed enough to make a first decision. In an emergency situation, your research may be listening to and solely relying on the information from a single doctor. Or, you may have time to dig deeper, consult with specialists, talk to friends who have been through it, and evaluate your options. But at some point, you have to make a decision and embark on the first interventions – a surgery, special school, therapies, special diet, or some other program. This may last for a week or it may last a year or more. It may work and you can keep moving forward to the next step or it may not, and you have to do more research and try plan B. Your stomach is likely tied in knots and your thoughts filled with hope and fears as you embark on this first step.

Your new reality starts to settle in as to what this new life will look like – the agony of surgery and recovery, follow up surgeries, speech therapy, trach tube, ABA therapy, doctor appointments galore, paperwork, adjusting your life and schedule around the needs of your child with additional needs, and changing it again at the last minute.

All future plans are written in pencil. It all feels foreign, unknown, and overwhelming. 

At this point in Stages 1-3 in the journey, it’s not uncommon to start asking some soul questions like, “Why? Why me? Why us? Why my child? God, why would you do this? Allow this? Why didn’t you protect us from this? God, I thought I was a good person, serving you, doing life the best I could for you, why did you punish me, my child?”

If you find yourself or your spouse asking these questions, it doesn’t mean that you are a bad person or a bad Christian. It is part of the grieving process. It is part of the healing process.

To be continued…

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!

Who Needs Some Grace?

As we step closer and closer to the start of the 2020-2021 school year, for most of us, there are a ton of unknowns; more unknowns than I would typically encounter with the start of the school year.  All of this has me spinning in a perpetual whirl of worry and confusion and wondering,

“Am I doing the right thing?”

For me, there feels like so there are many choices but none of them are the ones I feel really good or excited about. 

A few weeks ago I was spinning in a sea of worry about the Fall and the idea of needing a lot of grace and understanding in this season was impressed upon me.  I began thinking of all the people I would be extending grace to this Fall and all the people that would be extending grace back to me.

1. My kids- This is ALL new for them. This is disappointing, hard, confusing, sad and filled with unknowns. There is a big sense of loss for their connections with their teacher and their peers. 

2. Their teacher- Teachers have not been taught to teach like this!  As a former special education teacher, I can not fathom how I might prepare for a semester of teaching my students online.  I know the heart of most teachers is to be with kids, lead them to love learning and be successful, thriving students.  What most teachers are having to prepare for goes against how they were wired at their core to care for kids and ignite a strong desire for learning.

3. Other families- The more I talk to people, the more I become aware that everyone is experiencing this differently.  There are a small number of people who are thriving in Covid, a few that are really struggling and many that are somewhere on the spectrum in between.  This range of views and sentiments towards this disorienting experience is hard to navigate with other families and friends.  

4. Myself- I have the tendency to try to control things more than I should. I have struggled to strike a good balance of being all the roles I am needed in in this season.  There is simply not enough time and energy to do all of this to the full extent.  

5. My spouse- He is a fabulous supporter, cheerleader, and a loving husband and father.  Part of his day is spent out of the house working his full time job.  Sometimes, the ability to leave the house feels like a special privilege, especially when I think about what my day will entail.     

6. School administrators/IEP team- My daughter’s intervention team tried to meet just after school closed in early March.  At that time they didn’t even know how to sign documents to initiate her evaluation.  As the months have passed, they have figured out many things, but there are still so many unknowns. Her evaluation has not even been initiated! Her accommodations are mostly supports I have to implement at home for her success in a virtual format.  With no manual on how to navigate this we have had to be very patient with the school team and offer them a lot of grace as they try to figure out what to do.  I am not implying that we compromise our child’s education for the circumstances, but offer a large measure of patience when working through the challenges as a team.

The list could go on, to include employers, immediate family members and many more. 

So what does extending grace look like practically?  Being OK with the unknowns, things being slower, loud and messy.  Maybe this looks like doing the opposite of what you are inclined to do or say.  

Maybe grace in this season looks like focusing on personal self-care.  Taking small moments of deep breathing, breath prayers, walks, enjoying nature and going to bed earlier are some simple ways to care for ourselves during the day.  Try using some of the sensory strategies we use with our kids on ourselves to remain calm. Make yourself a cup of tea and look out the window for birds.

Maybe grace in this season looks like stepping up our organization game. Packing lunches the night before, laying out clothes and waking up earlier can help us be able to better focus on the hard things that we will encounter during the day.  Creating visual schedules and using timers or alarms on our smart devices can help us not miss the virtual check-ins with the teachers.  

But maybe ultimately grace in this new school year can look like us being more realistic, more loving and more flexible with everyone and everything we encounter.  And ultimately, that is the example I want to set for my children, as now more than ever, they are watching me and learning from my actions.

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. 

Stages In The Parenting Journey Part 2

Last week, I began this series by sharing about this epic adventure our family is on. If you missed it, you can read it here. This journey our family is on share a lot of similarities to the journey in special needs and has four stages. This week, I will look at stage two.

Stage 2 – Shock & Research

We realized we had to move if I was ever going to have the chance to heal and recover my health.

Following that demarcating decision there was so much to do. I dove into research, as I’ve become accustomed to doing. What could be salvaged and what could not? What process it would take to save what we could? No one fully agrees. It’s hard to get a straight answer. In fact, there is no one size fits all answer to the situation. Not only is there no simple answer, there’s no straightforward answer.

After a fair bit of digging and lots of reading including books and webpages of specialists, we had to make a decision and move forward even though there was no sure answer. Based on the best information we were able to gather and based on the testing we had had done, we had to get rid of nearly all of our things. Anything that wasn’t solid and completely washable in a special solution that kills mold and breaks down mycotoxins had to go. No, surely not. This couldn’t be the answer. But it was. 

In the special needs journey, an ultrasound may show an anomaly, a medical complication may show up at or shortly after birth, a developmental issue or regression may be noticed or occur between 1-3 years old, there are different demarcating starts to the journey. But they are all followed by a lot of research and figuring out what is next. What can be done? What is the prognosis? What does the diagnosis mean? How to handle the interventions needed whether it is surgeries, medical treatments, therapies, or all of them. Who goes with the child? Who takes care of the other kids? Who works to earn the money? How do we juggle it all? Mom and dad’s learning curves are steep. There is so much to learn, so much that is yet unknown, so many decisions to make.

There often is no one right choice, yet a path forward must be chosen and pursued. You didn’t want to go this direction. You don’t like any of the choices. Is it possible this is all a horrible dream and you’ll awake soon?

To be continued…

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!

We’ll Get Through This

We’ll get through this.

 Those are the words I was about to type for the beginning of this post when the tornado siren blew. I grabbed my computer and phone and ran through the kitchen toward the basement apartment where our daughter and her family live.

She met me on the stairs. “Mom, tell the construction crew to come inside.”

10 minutes earlier  they’d been in the footing trenches for our house addition, building forms so the pumper truck could pour concrete. Now they were running through driving rain to their truck.

I opened the front door and flagged them down. Soon my daughter, my son-in-law, my grandkids and I were sharing the basement with 4 strangers sheltering from the storm together.

None of us had masks. We stayed as far from one another as we could, and we watched as the storm intensified. The electricity flickered and went out. A doe and fawn ran across the back pasture desperate for cover.

The construction workers called to see how their families were. My husband called from work to see how we were. “We’re okay,” I said. “We’ll get through this.”

After a half hour, the storm let up and the construction guys left. “Let’s hope no one gets COVID,” I said once they were gone. “We had to choose between possible death for them and a slight risk of sickness for us,” my daughter replied. “We made the right choice.”

We went upstairs a few minutes later and found trees down, our yard light down, electrical lines down. Miraculously not one branch had landed on our house, our camper, or our cars. The damage was a new bead to add to the string of challenges weathered by our family over the years.

My mom’s family survived the Great Depression by shooting pigeons and raising vegetables. She was in high school during World War 2.

My parents weren’t even 30 when Dad was diagnosed with multiple sclerosis. Mom furthered her education while teaching school, raising 3 kids, and caring for Dad.

My husband and I cared for our medically-fragile baby while living 70 miles from a hospital. That baby lived with PTSD for 26 years before it was diagnosed and treated.

Floods, blizzards, ice storms and more in our 43 years of marriage.

Now this unusually ferocious and widespread rain, wind, lightening, and thunderstorm. In the middle of a pandemic. While building an addition onto our house.

Our family, like yours, has an ever-growing string of challenges. I, perhaps unlike you, have doubted God’s goodness during the worst bits of them. But in every case, once the bead is knotted in place, I look back and recognize the same two life-giving truths.

God was present with us from beginning to end. And our faith is the stronger for it.

This morning, still without electricity, my husband headed outside to cut up branches and haul them away. On his way out the door, he smiled and said, “We’ll get through this.”

With all my heart, I want you to know that what my husband said is true. Whatever your hardship or challenge is today, be very sure that you will too.

Nevertheless, the righteous shall hold to his way,

And he who has clean hands shall grow stronger and stronger.

Job 17:9

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!

Are You Feeling Stressed?

It's August! What does August bring to your mind?

For me, it's still lots of summer memories. Garden harvest. Sweet Corn. The grass gets a bit brittle underfoot as less rain and hot days combine. And now, school.

Growing up in Michigan, school couldn't start until after Labor Day due to all the farming families. But in Indiana, school starts around mid August. Now on our 11th year of homeschooling, I've come to like starting school at the beginning of August. I use the term "like" loosely. I don't like starting school then, but I find it very beneficial and I like the benefits.

Why?

First, in Indiana homeschool law says you do school for 180 days. I've found that our family takes a lot more days off here and there throughout the year - canning peaches, plums, pears, running errands, appointments, I travel for speaking at conferences, etc. Those days add up, so if we don't start our year early, we don't finish until well into summer weather. Which in the north, is when you can't wait to get outside after the long winter and motivation for school work quickly dwindles for everyone, me included, when the robins start chirping and sunshine beckons.

Second, after several weeks off without a lot of directed activities, which at first is amazing, becomes well, stagnant and idle minds (even if bodies are active) start to wear on each other. So, while I get reluctance and groans about starting school again (afterall, they are boys and not the kind that love academic work), life, routine, and direction helps things run better in the household. Some years I start slow and ease into it, sometimes we jump right in with a full schedule.

This year, I'm prepping for a cross-country RV trip for the next 9-10 months (we leave in less than 2 weeks!) and I'm a little too busy to take on teaching right now, so we are starting with online electives where they'll each complete 1 course this month while I get things around for the trip and we hit the road. That will give me a couple weeks to get up to speed on the learning curve of RVing as well, before we dive into the full school schedule.

Whew, so that was a bit of rambling and sharing what our August looks like. Why do you care? Well, if you hadn't picked up on it, another theme of August is often STRESS! How many of you can relate to that? New things, new teachers, schools, schedules, establishing different routines, early mornings, deadlines, adjustments. For some of our group, it can also be a stress relief - to again have a team of people helping do the heavy lifting of daily care, therapy and interventions. But it often comes with anxiety about how will the new teacher, therapist, etc mesh with my child?This year, with COVID-19, it's magnified - it's not just a new school, a new routine, but school as it's never been done before. And for kids who can't tolerate change, yikes! 

So what is a STRESSED OUT mama, or dad, to do?  That's what August is all about here in the Hope Anew - STRESS RELIEF  or more accurately, STRESS MANAGEMENT!

Because we all know all those responsibilities aren't getting relieved anytime soon, so we we need to pay attention to managing the stress, and yes, stress relief, because as we "manage" it can reduce our stresses in life and we can work the stress out of our bodies.

Who's ready to get some stress relief with me? Woot! Woot!

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!

To My First Born Son On His 18th Birthday

18 years.

18 years filled with laughter and love and sometimes heartache and tears. 18 years of watching every milestone and “checking it off” – feeling like we accomplished something. 18 years of watching some milestones pass by and realizing we still haven’t met them and dealing with the grief that these are the milestones that you may never meet.

But as I write, I realize you have risen above my expectations I had for you and I know you will continue to. It’s because even though there are many things we may have ahead to learn there are things you have taught me and others.

…you have taught me God’s sovereignty. From the moment I held you I knew He had a plan for your life. When we found out about the Down Syndrome, I didn’t understand why God had chosen this path for you or me. As the dust settled and the tears dried there was one passage I clung to. The passage is in John 9 when Jesus heals a blind man. Although I knew that “healing” was not the answer for a genetic condition. This scripture helped me find an answer for why God chose this path. Jesus’ answer is in verse 3. Jesus’ followers were baffled. Why was this boy born blind? Obviously someone sinned . But Jesus responds “he was born blind so that he could be used to show what great things God can do.” Now 18 years later I am able to see so many of these great things. I have learned it’s not my fault or that I’m being punished . These verses remind me that your disability is anything but that. The plan God had all along for you is a gift so that you can display the works of God through your life and your unprejudiced mind and heart.

… you have taught me patience. Every step of this journey together has been slow, every milestone, every word, every year of school, every IEP – a lesson in learning to be patient in God’s timing. While I’ve spent days, months and years waiting for each step, It causes me to think how patient God is with me. So many times it takes me so long to learn things that I’m sure God feels like he has tried to teach a million times over. You are my visible reminder that God brings beautiful blessings in His time if we just wait.

…you have taught me to laugh. You are silly. Always trying to make me laugh. And always laughing. You can make anyone laugh and you know how to laugh at yourself. And when I start to take life too seriously you are there to help remind me that life is too short not to laugh a little.

…you have taught me to see things through different eyes. To catch a glimpse of what really matters most. Not the little events of life but the way these events affect our soul and others. Your concern when others are sick, or sad. The way you never want to make anyone mad. The way you put others first. I often wonder what the world would be like if we all saw others through your eyes.

…you have taught me unconditional love. You give and accept love from others with no conditions. You share love so easily and I’ve seen you hurt because of the way you love someone or something so hard. Your heart is so big and filled with so much love for the people you know. You have taught me that loving is not about what we want others to be but about loving them as they are. It’s about loving me when I have a short temper or snap at you. It’s loving like Christ … not because of anything I could do but loving because that’s what you are.

I’m reminded of the old hymn, “Come Thou Fount,” it speaks in the second stanza of raising an Ebenezer. Strange language isn’t it? The prophet Samuel set up a stone after the LORD helped Israel win a great victory. This was not without repentance and seeking the LORD on Israel’s part. They had to put away their false gods and pray. The stone, named Ebenezer, commemorated that victory, for “Thus far the LORD has helped us” Whenever the Israelites would pass by the stone, they would remember what they were capable of, and how the LORD acted on their behalf.

So you my son are my true Ebenezer. You are the physical reminder of God’s faithfulness and goodness. In 18 years you have taught me all these lessons and more. You remind me daily what the Lord is capable of doing. And you show me daily that God has and is still continuing to teach me more about Himself through you.

So HAPPY 18TH BIRTHDAY Bub. You are so loved!

Written by Leigh Ann Kaman

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

What’s In A Name - Hope Anew

Oh the anticipation, dreams, hopes, excitement, preparation and thoughts that filled our hearts and minds as we eagerly awaited the arrival of our first child! And one of the questions uppermost in our minds…what were we going to name him? To us, a name is very important. Pick the wrong name and the child could be made fun of for the first two decades of his life. We talked through hundreds of names – some reminded Jonathan or I of people we didn’t have fond memories of and we didn’t want our son to carry the same name. Some have common nicknames we didn’t like. Some one of us loved, but the other hated. Some we liked one week, not so much the next. Some were just meh. 

The meaning of the name was also very important, and we believe a child very often grows into the meaning of his name. As we talked through possibilities, one of our favorite names meant “firebrand”. While that could mean he would really make a mark on the world and leave a lasting legacy, it could also mean that he could be a hellion to rear, exciting pain or danger wherever he went. Yikes. Mark that one off the list. It was quite a process, but we finally arrived at a name we both loved and still do.

The process for naming Hope Anew wasn’t too different, except that baby name books were no help, and URLs that were already taken figured heavily into the decision. But, the significance of the name was important. Again, we talked through many possibilities before we came up with and then settled on Hope Anew. As soon as Jonathan said it, I loved it. We checked the URL – available! We put it in with two other top name options and asked friends and family their opinions and Hope Anew won hands down. 

Why did I love it so much upon first hearing it and grew to love it more and more as I continued to think about it?

Here are my reasons:

1. Hope. After the early years of a having a special needs child when I lived in crushing anguish, broken dreams, darkness, and hopelessness, hope was my #1 need. Like water in a wilderness, hope to a downcast soul brings life, renewal, healing, a way forward. Hope is an absolute necessity, yet many find it elusive! Having “hope” in the name of an organization where the support of parents with kids impacted by special needs and disability is the sole purpose and focus…brilliant idea!

2. Hope. Hope points to the true hope we have in life and this world…God, His son, Jesus.  Salvation, certainly, but also His faithful love and care for us here and now. A sure hope. Not the common, modern definition meaning, “a desire” as in, “I hope you have a nice day.” But rather the archaic definition, “trust, to expect with confidence, reliance” and the biblical definition, “confident expectation of what God has promised, and its strength is in His faithfulness.”  This isn’t a, “I hope my son gets better”, “I hope this therapy works” kind of hope. But rather a, “No matter what, God loves me, my child, and I can trust He sees the big picture, has a plan and will work thing together for our good even in the midst of this very broken world.”

3. Anew. Gaining hope again in the parent’s journey. I don’t know about you, but I certainly went through periods of time (years) where I had lost hope. No hope. No future. Darkness, all was darkness. Hopeless. I felt embarrassed, guilty, weak. I learned that is a common part of the special needs parenting journey. You don’t need to feel embarrassed, guilty or weak. Goodness, your life just got flipped upside down. All your hopes and dreams were shattered and scattered, and you have NO idea which way is up, let alone what’s ahead! No one has given you a map with “You are here” marked on it. For Pete’s sake (sorry, Pete, I don’t know who you are or why your name is used for this expression), you’re just trying to figure out how to make it through the next minute of crisis (aka your new life)! BUT, after that yawning chasm of hopelessness, darkness, brokenness, when you climb up and out on the other side, there are new dreams! There is light! There are less crisis, or at least a well-trod action plan for how to handle the next crisis. You can begin to see traces of God’s faithful care of you through that chasm and all those crises. He didn’t abandon you after all, even though it had felt like He had.  And now you gain the reassurance, the knowing deep in your soul, He’ll also carry you through the next one. Hope blooms anew, rebuilt, stronger, steadier on the far side of that chasm. Hope Anew.

What is in the name Hope Anew? Hope, a sure promise we can count on from a faithful God to carry us and love us as we walk through a broken, hurting world and pick us up and grow us up in our understanding of Him after we have lost our hope, vision and dreams.

Oh, and our eldest son – his name is Josiah, meaning “God supports, heals.” You might have some insight into the extra pressures on siblings of kids with special needs. I’d say avoiding “Firebrand” and going for “God supports” was a good call.

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!

Summer Memories

Ahh sweet Summer memories...this year has put quite a twist on any memories.  For our family, it felt like Summer essentially began in mid-March when the kid’s schools closed for COVID.  Although we tried to stick with the programming our country sent home, the plans didn’t really work for my family. 

With a background in special education, I was ready to improvise and try to keep our family moving in a positive direction.  We began adding special things to our day to help each day feel different from before.  We worked on some school and some character building.  We tried to learn to love the people in our house really well.  While some of those things were easier than others, we made the days pass until school was “officially” over as best we could.  

It has been a relief to give a close to the 2019-2020 school year and step into true “summer mode”.  

My family has never been one to plan a typical week long vacation during the summer but rather take advantage of smaller opportunities as they come up and fit with the needs of the kids.  We found so often in the past, planning a week long vacation never came at a good time.  With the anticipation of the trip, challenging behaviors swelled and thoughts and doubts like “This is not going to be a vacation at all!”, “What was I thinking?” filled my mind and heart.  We would walk into those vacations stressed and trying to calm an overstimulated/excited kid.  On top of that, we often had a sick kid.  My daughter seemed to be often sick and always right before our trips. Needless to say, it was not a good memory for my husband and me, let alone the kids. 

While we have escaped illness through building her immune system and more likely limiting contact with COVID concerns, advance planning and long trips just doesn’t work for our family.  We have settled into the spontaneity of short trips and day visits that work well for us. The difficult part for me is fighting the comparison of other people’s experiences.  I can often lose myself in the pictures and narratives people post of their vacations.  While a picture is only capturing a moment and most of the time only the best moments, I can still be tricked by someone else’s experience, thinking mine is insufficient in some way. 

Since “Summer” abruptly began for us in March, we began a paper chain of good things from our day.  The idea at the time was I wanted and needed a way to know when life would go back to a normal rhythm. I wanted to know when the bus was coming back down my street. I wanted to know when I would have my 2 hours to breathe and run my errands, squeeze in a work call and brush my teeth before noon!  Since that was a big unknown and still is, I wanted to mark each day with a positive by adding links to a paper chain. 

The kids and my husband got into the idea and each night at dinner we add a paper link to mark a happy memory from our wacky day.  There was always something to add.  We have continued with this each evening adding different color links to mark the happy memories amidst the blur of days that drag on.  Each day still feels like a tiring Saturday in which my husband and I are trying to work and nurture children.  In the middle of this grind, we are able to intentionally acknowledge the good things with our children.  The paper link helps each of us look for the happy and still anticipate the future with joy.  My middle daughter asked the other night if we could decorate the Christmas tree with the paper links.  We are 5 months away from Christmas, but she is already looking forward to it. For me, thinking ahead to Christmas reminds me of the ground we have already covered and the challenges we have overcome with so much change and unknown in our life all at once. 

Reflecting on the time and memories captured in these links gives such a positive view of what we have gone through and a hopeful outlook for the coming months.

This summer is off to a good start for our family.  We are sneaking quick trips in between virtual summer school and tele-therapy sessions.  The great joy comes at the end of the day when I get to hear what part of the day was remarkable for one of the kids or my husband.  We have added links saying “swimming” in the spout pool, berry picking, finished the first chapter book alone, took off training wheels, beautiful sunset and someone even added time as a 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. 

Focus On The Good

There is simply an overwhelming number of things that I can genuinely find myself concerned about at the moment. What hasn’t been turned on its head, what hasn’t been pushed to the limit?! My head is spinning just trying to keep up with the changes that have had to happen within our family home to make any learning happen over the last couple of months, and now the changes happening outside the home looking towards summer as lock down eases slowly but surely.

There are days when the concerns could drown everything good out. And it feels as if I run from one problem to quickly trouble shoot the next. Juggling constantly just to keep everything and everyone going as we all struggle to adjust to new ways of having to work, not being able to meet people the way we’re used to, and not having the usual supports and routines to lean on. In the midst of it all, I’ve been asked to take up a paid job – part time thank goodness – and a huge privilege to be offered. I’ll be working in our local high school as their chaplain. One of the things I get involved in as you can imagine is delivering reflections and collective worship opportunities – all virtually at the moment of course. This week I’m putting together (in between everything else on my plate) some thoughts about resilience and staying positive.

I’m looking at a little verse from the Bible, in a little letter called Philippians. After reminding us to take our worries to God in prayer it says this:

‘..whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things’.

Sound advice – written well before mindfulness and CBT became ‘a thing’ here it is – a little note from God simply reminding us how good it is for us to put our focus on the good stuff. Let’s face it, we never need reminding to focus in on the negative! How I need reminding to look for the good in the everyday.

Moving into summer, I want to find some time to document the good we’ve shared during this surreal and unexpected few months. I’ve taken photos of all our new experiences, of us doing our work in new and strange places in the house – of the tent where our youngest has done her school work (when willing), and of all the moments of unexpected laughter and fun. I need to remind myself that there has been good, and beautiful alongside the tough and relentless.

I wonder if we might all jot down our best memories of the month, or draw how we’ve felt when we’ve had a fun day at home together so that, together with the photos, we can put together a family scrapbook of our experience of lock down – reminding ourselves to focus on all that is good in the midst of what has been, for many of us, a really hard time!

Written by Cathy Porter

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

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

Summer To Remember

It’s July! This means the start of a new month and a new theme in our online community! What memories, thoughts, scents, events, and feelings does July inspire for you? 

For me, it's the feel of sunshine on my skin. Thoughts of parades, fireworks, family gatherings, bike riding, picnics, sandy beaches (I grew up close to Lake Michigan), weeding the garden, the sound of corn growing, the feel of garden dirt and yard grass between my toes, playing in the sprinkler, the tastes of sweet corn dripping with butter and watermelon. 

As I think of this, I realize these are mostly all from when I was a kid.

Since I've become an adult, I have rarely taken the time to slow down enough to soak in the sensations, scents and joy of summer. Summer was my favorite season as a kid. While I now also love spring and fall, I still love summer. My birthday is also in July, so that's just a cherry on top of the already delicious treat of summer! 

As I reflect on these memories, I want to enjoy them again and create them for my kids. Not only will this create amazing memories for them, there are other benefits too! Like strengthening our family and relieving stress, and who of us doesn't need a little - or a lot - of stress relief! 

So, our theme this month is (drumroll)... Summer To Remember!!!

And we mean this in a positive way, not because of the pandemic, lol. We can create times of amazing memories with our family regardless of the pandemic. Activities can be simple and cheap or free, simply by intentionally selecting some activities to do together this summer and checking them off as you go can help make your summer a Summer To Remember!

We have a cute, free download graphic chart for you to print and fill in with your family. Get suggestions from your kids and significant other and write them down. Plan to incorporate them throughout the next month or two and check them off as you go. If you are challenged coming up with ideas, we've got you covered. We are also offering a free download of 101 ideas for you to use as-is or to help jump start your own ideas.

Don't make it overcomplicated or something you have to put a lot of energy or $ into and let that stop you. Did you notice the things I remember about summer from my childhood? Grass and dirt between my toes - how often do we walk outside barefoot now? Soaking up the sunshine. Cloud shapes. Watermelon. Playing in a sprinkler. Stargazing.

These are your action steps:

1. Print the chart and 100 ideas list. 

2. Choose ideas from the list or brainstorm your own.

3. Fill in your family's chart. 

4. Begin making it a Summer To Remember!

5. Share your adventures with us in the community! We can't wait to see all the memories you're making with your family.

Join us in the Hope Anew Online Community to get the free downloads. Go to members.HopeAnew.com and join for free!

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!

A Father's Love

What does the word “father” or “dad” mean to you? What images, memories or feelings does it conjure up? For some of you it brings the most wonderful feelings of being loved, cared for and protected. For others, it stirs up hurt, fear, abandonment, or anger. For yet others, it may be a mix of the two. What I know to be true is, if you had a good dad, you cherish him. If you didn’t, you wish you did.

That brings me to the question, what makes a good dad? A recent podcast interview (that will be airing the first Monday in July) that Jonathan and I did with the founder of 21st Century Dads focused on dads and concluded with talking about a “good dad” coin that they offer for sale that features the words: love, honesty, patience and commitment. Love is the defining attribute in this list that the other traits expound. 

Our culture has lost, diluted and redefined the meaning of the word “love”. It is not only an emotion but is much more an action. I Corinthians 13:4-7 defines love as patient and kind. Not jealous, boastful, proud or rude. Not keeping track of wrongs done. Not glad for injustice but rejoicing when truth wins. “Love never gives up, never loses faith, is always hopeful and endures through every circumstance.”

“Not all of us can do great things. But we can do small things with great love.” – Mother Teresa

For the father with special needs kids, where the acts of great love include cleaning up poopy messes from a teen or adult child, taking an extra shift or an extra job to pay for therapies, coming home from work to step into a home that is more work and give his wife a break, the unrelenting pressures to be there, to provide, to support, but not be able to fix. He can’t fix, but he can and does love. And that means everything.

I don’t remember the situation that caused it, but I remember having an especially rough day when I was upper elementary or middle school age. I was crushed. I flopped on my bed and cried my eyes out for a while before getting ready for bed. When I returned to my room after showering, I found my extensive stuffed animal collection which was normally very tidily arranged down in a corner, dispersed to every wall, shelf, drawer, curtain rod, and surface of my room with the animals arranged in various comical actions. My dad couldn’t fix whatever caused my crushed tweenage heart, but his simple action and involvement reminded me I was valued and loved. Thirty years later, that memory still makes me feel loved. 

Dads, you may not be able to fix whatever is troubling your family, but being there and showing up consistently, lovingly, patiently for the good times and the hard times makes you a hero.

Of course, the ultimate example of a father’s love is our heavenly Father. I John 4:7-10 tells us, “Dear friends, let us love one another, for love comes from God. Anyone who loves is a child of God and knows God. But anyone who does not love does not know God, for God is love. God showed how much he loved us by sending his one and only Son into the world so that we might have eternal life through him. This is real love – not that we loved God, but that he loved us and sent his Son as a sacrifice to take away our sins.” This is love. It involves choice, sacrifice, and often putting others’ needs ahead of our own. And regardless of your earthly dad, you have a heavenly Dad who has done that for you. And a Brother who has as well. If you haven’t met them and would like to, feel free to contact us. We’d love to introduce you.

Remember dads, you don’t have to do great things to be a great dad, just small things with great love!

“It is admirable for a man to take his son fishing, but there is a special place in heaven for the father who takes his daughter shopping.” …or relocates her stuffed animals.

– John Sinor…and Sarah McGuire

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!

Just Get Over It

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

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

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

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

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

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

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

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

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

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

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

Written by Jonathan McGuire

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

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

Love Your Neighbor

What do I do? This is the question that has kept going through my mind last week as I have seen so many families struggling. I’ve read the Facebook posts of my African American friends and my heart has wept with them. 

I am a middle aged white male that lives in an agricultural area that is 96.7% Caucasian. This makes me feel like I should be the last person to speak on this matter but when you see injustice you can’t remain quiet. When your friends are hurting, you don’t ignore it.

 I am going to step out on a limb here and share what I’ve learned about inclusion based on my experience as a dad of a child with special needs. I’m not pretending to understand the depth of the pain that people of color are experiencing and I’m not saying that the pain or injustice is equal.

As a special needs dad, I remember the disgusted looks when our son melted down in public. The comments and the whispering under the breath. I’ve seen the public make fun of those with disabilities. Kids calling other kids with developmental disabilities names and parents turning kids away so they wouldn’t have to feel uncomfortable around the nonverbal child.

The sad thing is that this is not just limited to public settings. I can share story after story of families who were told their child was not welcome at a church because they were “disruptive” or the church didn’t know how to come alongside them. I can share story after story of families of kids with disabilities that have completely walked away from the church because of how badly they’ve been hurt.

Perhaps this is your story. 

In Matthew 12, Jesus was asked what the greatest commandment was. He replied that the first is to love the Lord your God with all of your heart, soul, mind and strength. He went on to say that the second greatest command is to love your neighbor as yourself. 

As I look back at the period of time in our lives mentioned above, what our family would have wanted and what many of the other families we talk to would have wanted is to be loved and to have their children be loved. 

It is hard to love someone as yourself if you don’t know them.

In that season of a few years where things were especially rough, we only had one couple sit down with us and ask us how we were doing. They then just sat there and listened and listened and listened some more. They didn’t offer advice. They didn’t go into fix it mode. They didn’t make promises.

They loved us by listening.

So back to my original question. What do I do? I can love my neighbor as myself and I can do this by listening.

Written by Jonathan McGuire

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

You can follow Hope Anew on Facebook HERE. Hope Anew has launched the Hope Anew Online community and would love to have you be a part of it! You can learn more about it at WWW.HOPEANEW.COM.  

DUE TO COVID-19, HOPE ANEW IS WAIVING ALL MEMBERSHIP FEES FOR THE COMMUNITY!

Quarantine Has Changed Me

This time of quarantine has been challenging. It has been no small task to take a large step outside of the roles I normally hold to fill the roles that quarantine requires of me. It has been a challenge to decrease the freedoms I have at my disposal. But it also has been a time of readjusting the expectations around my life and that has been a huge benefit. I wanted to take a few minutes to share some of the positive changes that have come out of this time.

1.  I like to go-go-go. It has been life altering to suddenly have to stay in place. I have literally had to learn how to sit on the couch and just BE. In the first days of quarantine I somewhat panicked about this, but much to my surprise I have enjoyed this slower pace. As things being to open and schedules threaten to get busier I am finding myself really weighing the benefit of an added activity. Quarantine has taught me to slow down and protect the time our family has together.

2.  I hate to write this one, because it sounds very shallow, but I have learned the value of “do I really need that”.  My days of heading to Target to stroll the aisles and destress and ultimately buying things I don’t really need have passed.  Amazon Prime doesn’t really have 2 day delivery anymore. And I can’t easily just run through the Starbucks drive through as the line is now 5 years long.  Basically what I am saying is my Instant Gratification habits have died. And I find myself asking “Do we really need/want that?”. And guess what that has helped? Our bank account. Isn’t is magical when you stop spending money aimlessly you have more? Dave Ramsey would be so proud! We have saved so much so that we have been able to do a couple house projects we had trouble saving for before!

3.  God is the same Yesterday, Today and Tomorrow. Our daughter is medically complex but has had a really good few years. The fear of her getting Covid has brought back some of those fears I have had about her health. When I feel the anxiety rise I just have had to come back to the simple truth that God never changes. He is good in all things. That doesn’t mean she won’t get sick, but it means if that happens we will have the strength to get through it. A good friend used to tell me when I worried, “this fear is not upon you, so you don’t have the strength to handle the situation. But God simply does not leave us alone in a fire, so if that situation came about you would have strength to walk through it”. Guess what? Those words have never failed me, and they won’t in this situation either.

4. Expectations make or break the day. This is something that I have worked hard to teach my children during this time. But honestly, I have had to consistently remind myself as well. Expectations need to be realistic, verbalized and agreed upon. I have had to practice setting them with my children during this time, especially as we learned to home school. But practicing having realistic, verbalized and agreed upon expectations has even really helped my husband and I. We go into the days knowing what each other needs which sets the tone for clear communication and mutual goals. 

The beauty of walking through hard things is the great amount of personal growth that can come if we allow the circumstance to mold us for the better. 

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