Feeling a Bit Lost?

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

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

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

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

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

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

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

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

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

To download your own copy of this poem, click here.

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

To The Caregiver Who Never Gets Time Off

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

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

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

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

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

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

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

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

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

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

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

Written by Sarah McGuire

SARAH MCGUIRE IS THE MOM OF TWO BOYS AND CO-FOUNDER OF HOPE ANEW, A NONPROFIT THAT GUIDES PARENTS TO CHRIST-CENTERED HOPE AND HEALING. YOU CAN FOLLOW HOPE ANEW ON FACEBOOK HERE.

Caregiver Fatigue

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

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

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

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

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

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

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

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

 Written by Sarah McGuire

SARAH MCGUIRE IS THE MOM OF TWO BOYS AND CO-FOUNDER OF HOPE ANEW, A NONPROFIT THAT GUIDES PARENTS TO CHRIST-CENTERED HOPE AND HEALING. YOU CAN FOLLOW HOPE ANEW ON FACEBOOK HERE.

Which Christian Parenting Resources are MOST helpful?

In the last blog post, You’re Grounded!!! I alluded to how the first few years of Jonathan and my parenting journey and how we were doing discipline was NOT working. We were following the best of the parenting classes from Bible school and church and books recommended to us and getting a kid who became angrier and angrier. We knew something HAD to change…and it was us and how we were parenting, not our kid.

Today, I share with you:

1. Resources we have read and tried

2. Resources that dramatically changed our and our kids’ lives for the better

Disclaimer: our kids are currently teenagers. We are in the midst of this parenting journey. We are learning too. Currently, our teenagers are delightful. They are a joy and pleasure to be around (most of the time!). We do not fit the stereotypical picture of regular teenage/parent conflict. I’m loving this age and stage and hope this type of relationship continues. However, we don’t know how our kids will do in adulthood or what choices they’ll make once there or at any point on their way there. We pray for wisdom as we continue on this journey.

The following resources are loosely listed from least helpful to most helpful for our family. We’ve read and studied more, but these are the ones that came to mind.

Resources we read, studied, &/or applied early in our parenting journey that we may have gleaned some from, but didn’t get us where we wanted to be in our parenting:

1.     Don’t Make Me Count to Three by Ginger Hubbard

2.     Growing Kids God’s Way

3.     Dr. James Dobson’s books

4.     Child Training Tips by Reb Bradley

5.     Love & Logic by Jim Fay & Charles Fay

6.     Give Them Grace by Elyse Fitzpatrick

7.     Shepherding A Child’s Heart (the anger management/training/maturity ladder was helpful) by Ted Tripp

Resource that we think are excellent, the last 2 have heavily influenced our parenting:

1.     Parenting by Paul David Tripp

2.     How to REALLY love Your Child by Ross Campbell

3.     Sally Clarkson’s books (there’s more I need to read!!!) & podcast

4.     Sharing Love Abundantly In Special Needs Families by Gary Chapman & Jolene Philo

THE #1 most helpful and robust parenting tool we have found:

As a side note, you can listen to our podcast interview with Jim and Lynne here. What resources have been helpful to you in your parenting journey?

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!

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You're Grounded!!!

Let’s talk parenting!

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

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

But all is NOT lost – there is hope!

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

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

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

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

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

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

Written by Sarah McGuire

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

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

One Simple Question That Can Change Your Life…and the lives of those around you!

Last week I shared that my theme word for 2021 is thankful and to help me toward that goal, I’m listing 3 things I’m thankful for each day. That is one step. But it’s not just a “list 3 things and move on with the day”, checkmark, goal accomplished. Done.

No, in making thankfulness a habit and cultivating a heart attitude of gratitude it is my goal that the act of starting my day with thoughts of thankfulness will then help thankfulness carry on into my day with choosing thankfulness in situations that would otherwise cause irritation, annoyance, depression, discontent, or hopelessness.

Our family is currently living in an RV and touring the country for 10 months while we work and school fulltime. Yes, it’s pretty incredible. But it also means we are sharing one bathroom. One morning last week, I needed to do my hair and plugged in the curling iron to warm, but since my kids hadn’t gotten up and been through the bathroom yet I thought I’d give them a chance before I started on my hair. I have a lot of hair and it’s a 30-minute process. I got them moving and started working on breakfast in the kitchen while waiting for them to quickly use the restroom and vacate it.

 The next thing I knew, one of my sons was showering. He doesn’t normally shower in the morning and I hadn’t expected or anticipated that. He’s also not quick about showing, so my day and planned schedule was now delayed by 30 minutes. My immediate reaction was irritation, annoyance, and criticalness about his thoughtlessness.

 After ascertaining that he had turned off my curling iron and the RV was not about to catch fire from his setting clothes on a hot iron, I recognized my negative emotional state and direction of my thoughts. I asked myself, “What can I be thankful for in this situation?” Immediately I thought of how thankful I am that I have a son who desires to be clean and takes responsibility for his personal cleanliness AND that I don’t have to push, fight, or cajole him into it! What a blessing he is! How proud I am of him!

One simple question to myself and wow, what a change in thoughts and emotions! And, what a different mom that kid had when he got out of the bathroom than if I hadn’t asked myself that question. I know I want to be the second mom and not the first mom on a regular basis and that’s the mom and wife my family wants too. It’s also the daughter my Father will be more pleased with because that’s who He has designed and enabled me to be. Yet, it all came from a simple question and changing my focus.

Who do you want to be? What characteristics do you want to cultivate in your life? Is thankfulness a challenge for you like it is for me? If you haven’t already, we’d love to have you join the Hope Anew Online Community and take part in the January Thankfulness Challenge!

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!

One Word That Can Change Your Year – Part 1

It’s a new year. The start of a new year comes with thoughts of fresh starts, new beginnings, and new or renewed goals. I always look ahead toward the upcoming year with thoughts of what I want the coming year to include for myself and my family and what next steps in life would be good for us.

While that is all true of this year as well, this year has a different feel for me – what about you?

I’m a little less optimistic of where things are headed in our country and world. Christianity is becoming more and more criticized and unpopular. Darkness and evil in our society are growing and becoming more commonly accepted.  Within and between Christian groups, there is increasing division and lack of vision.

The year 2020 was a HARD year for the world and our country. Personally, I’m not expecting 2021 to be easier. I see darkness and chaos growing and spreading. BUT, in darkness, light shines even brighter! Light offers hope in dark times. A lighthouse isn’t built to help ships during the daylight, but during the night. While evil and darkness may be increasing, our foundation, our solid rock, Jesus, does not change. Our hope is secure.

That doesn’t mean we won’t experience hard things, but it does mean we don’t need to be consumed by them. Yet, when we live day in, day out in hard, disheartening, all-consuming things it’s hard to hold onto that hope. So how do we do that?

Personally, 2020 was an incredibly difficult year with a lot of personal loss that was all-consuming for a few months. I made a resolution that I would NOT complain about my new circumstances (I started here) and that I WOULD be thankful (I got this this a little later). Truthfully, I could feel that I was being consumed by negativity and it was my attempt to change that. It was absolutely the right thing to do. And this year, in 2021, I want to take that even further.

 Each year I choose a theme word or verse for the year. This year, my word is THANKFUL! Being thankful requires action and intentional thought. It doesn’t just happen, and it doesn’t come automatically. It takes disciplined thought processes and if it hasn’t been a habit, it takes time and practice to changes those negative, complaining thought patterns and to create thankful, appreciative thought patterns. But it CAN be done, and it will change your brain and your life!

 We read, “Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” in I Thessalonians 5:18. Philippians 4:8 says, …“Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.”

Being thankful is an act of fixing our thoughts on what is true, honorable, right, pure, lovely and admirable.

In the Hope Anew Online Community, during the month of January, our theme is Thankful! Each week I’m posting a video about what I’m learning about being thankful and how I’m applying it to my life. We’d love to have you join the Community and a group of parents who “get it” as we grow and learn together through the extra challenge of being caregivers.

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!

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!

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!

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!

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!

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!

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!

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!

Parents of kids with Special Needs – YOU ARE AMAZING!

I was walking up the driveway pondering some of the parents of kids with special needs we know and marveling at the common traits they have and how exceptional they are. I think parents of kids with special needs are some of the most wonderful, amazing people I have ever met.

Here are 5 reason why:

1. They have their priorities straight. So much of America’s population, even Christian, Bible-believing, church going population is about achievement, looking good, having fun, wearing the right brand of clothing, being cool and keeping up with the Jones’. If you can’t do that or don’t care to do that, you kind of disappear from being accepted and included.

   As a group, the special needs parents I have met have learned that relationships, loving other and being there for each other in hard times matter more than anything else next to clinging to God. Yes, they love a good night at the movies and wouldn’t turn down a trip to Dollywood. After-all, Dollywood has a sensory room for when junior hits meltdown, which can make the trip a possibility.

2. They have learned to face difficulties. Challenges have become a way of life. Parents of kids with special needs are the strongest, most determined, loving, ferocious (mama bear, anyone?) group of people I’ve ever met. Daily life is difficult to say the least. Some seasons require just living through the next minute or hour, forget planning for tomorrow, next week or next year. They are masters at flexibility and changing plans as navigating around obstacles has become second nature.

3. They see value and worth where others see inability and hardship. While looking in from the outside, others see children or people who can’t walk, can’t talk, look different, are challenging, need help, take resources. Parents of kids with special needs see the most treasured people in their life who give unconditional love, bring joy, work harder than anyone to succeed at the simplest of tasks, get delight from simple things that others easily overlook, and a myriad of other qualities. Just talk to a parent of and adult child with special needs and you’ll likely hear how their child with special needs has blessed them more than they ever anticipated.

4. They never give up. Yes, they get weary – very weary. They may want to quit – for a day in order to nap and rejuvenate. They may want things to be easier, but when it doesn’t get easier, they still don’t give up. This is their child, whom they love dearly. Spouses may walk out. Parents and in-laws may criticize and belittle. Friends may desert them. But, they never quit on their child. They do what is within their power and resources to help and love that child to the best of their abilities.

5. They turn hardship into blessing for others. It may take a few years because those early years they are just barely surviving, and they may go back to survival mode here and there as their kids get older and hit different challenges. But, once they get the hang of things, they start helping other parents of kids with special needs. I’ve met a mom who started an entire company of patented weighted blankets that started because of her daughter’s special needs, and my son has benefitted from her blankets. I’ve met a mom who started a nonprofit helping others learn how to rest and rejuvenate in the midst of great pressures, duties and stresses because of her own journey as a mom of multiple kids with special needs. I’ve met many parents of kids with special needs who write and speak to encourage and equip other parents and to church ministry leaders to help them be able to reach out and help more families. I could go on and on about the incredible things parents have done to help others.

That’s my husband’s and my story too. Both of our backgrounds are in counseling. We were missionaries and he was doing trauma healing work in a refugee camp in South Sudan when he saw the correlation between the trauma and questions the refugees were struggling with and the challenges he and I had experienced as parents of a child with special needs. When he got home to the States, he shared with me and as we talked to other parents the need was obvious. We couldn’t find an organization that was addressing it, so a few years later we started Hope Anew.

Moms and dads of exceptional kiddos, we applaud you and we think you are amazing. I know most days you struggle to make it from morning to night and some of you struggle to make it through the night too. I know you are barely hanging on sometimes. I know your heart wrenches as you watch your child struggle daily with the simplest of things. I know your heart weeps when you can’t provide something that will help your child. I know your heart leaps and sings when they conquer a task they’ve worked at for years. I know it’s a tough road. But I also know you have risen to the challenge and are making all the difference in the world for your child. Thanks for being an amazing parent.

You are our heroes!

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!

Why Am I Struggling So Much?

Do you ever wake up and not want to get up? Do you ever lose your motivation and drive? Stay awake at night too late just vegging or zoning out? Snap at your spouse and everyone around you? We go about our day to day lives, caring for our kids, spouses, and selves handling what needs to be handled, doing the tasks that need to be done, mediating the scuffles that arise, and a host of other things. You used to have motivation to do all the things, to tackle the challenges, to meet the needs, to love others well in a peaceful way. Now you feel sad, angry, grumpy, tense, or unmotivated.

So, what is going on? What has changed? Why are you struggling?

 As a parent of a child with special needs and disabilities, you aren’t alone. The more parents I talk with the more I see this as a common, almost universal struggle. It may not be all the time, and it can be more pronounced in certain seasons of life and circumstances. And, I’m seeing it strongly right now in the general population with the Coronavirus stay-at-home order. Why?

One of the main reasons is grief. Grief is not only experienced when there is death, but with any type of momentous loss. This includes the loss of what was expected or anticipated in the future but will now not happen. This might be the hopes and dreams you had for your child and for how your family would look, activities they would do together, social interaction with family friends. But, the child will never accomplish those things, the family can’t do those activities, and the friends deserted you when you had a child with special needs. It might be a vacation you had planned or a graduation ceremony and senior year events with friends that won’t take place. It could be a lost job or every bit of “extra” income going to pay for therapies and treatment instead of a night at the movies or a vacation.

Grief has five stages: denial, anger, bargaining, depression, and acceptance.

These stages aren’t linear, so just because you dealt with anger yesterday that doesn’t mean you’re done with it for good. No, you can go through the stages repeatedly and can bounce back and forth between different stages. You may stay in one stage for a while or you may experience all of them in one day. A participant in one of our group Hope & Healing Workshops once commented that they felt like they were in the tumble dry cycle of a clothes dryer and that can sum it up perfectly.

 What do you do about it?

1. Acknowledge it. Name it. Simply identifying it and naming it can help so much.

2. Express it. That will look differently for different people and personality types. It may be writing in a journal, talking with a friend, having a good cry, writing a lament, expressing it to God, etc.

3. Shelve it. While this isn’t a good long-term plan, it is sometimes necessary in the short-term. Sometimes in order to deal with what needs to be done right now in this moment, hour or day, we can’t take the time to deal with it because it would stop us from handling the current situation. But, still name it, “Oh, that’s grief. I’ll need to deal with and express this later for my emotional, mental, physical, and spiritual health, but I need to set it aside for now so that I can complete _____ task.”

4. Express it some more. Grief comes in waves and just because you acknowledged it and expressed it once doesn’t mean the process of grieving is complete. It will usually take repeated expressions of it before you are ready to move on, especially with more significant losses.

5. Don’t let yourself get stuck there. If you only ever focus on the loss, you won’t be able to move into the future and build new dreams. This doesn’t mean you deny the reality of what you lost, but it does mean you say something like, “Yes, I lost ____ and that is significant, hurts terribly, and I will continue to grieve it sometimes. Yet, I have ______ and while it will be different than what I wanted, expected, and hoped for, life can still be beautiful, good, and purposeful.”

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, all membership fees to the Hope Anew Online Community have been waived!

Seasons of Doubt

Hi Friends, it's April! I can't wait to see flowers start to bloom and trees start to bud after this winter season. Living in northern Indiana, we get to experience all four seasons very distinctly.

The theme in the Hope Anew Online Community this month is Questions, especially regarding God, Scriptures, and faith. This journey in disability and special needs has a way of making us question and rethink our worldview and priorities. Sometimes, whether we want to question them or not. We want to encourage you that if you are going through a time of unrest in your view of life and God, the Hope Anew Online Community is a safe place to voice those doubts, ask those questions, and work through that process. 

God is incredibly patient and understanding with us. He invites us to come to Him with our cares, fears, doubts, disappointments, misunderstandings, anger, and grief. He offers salvation because He knows we are a mess. He doesn't expect us to come to Him polished and perfect. He holds His arms wide in welcome, loving us as we are, and holds our hand as we take the next step in becoming more like Him. 

If you are currently in a time of questioning God, feeling abandoned and disillusioned by Him, keep asking, keep seeking, keep bringing those doubts, fears, anger, and grief to Him. Just as winter in Indiana can seem like it will never end, time and history show us that it will. Spring will come, flowers will bloom in their own right time if we wait for it.

If you keep pressing into God, asking questions, seeking HIM for who He is, He will meet your need for Him. His answer may not be what you were expecting or desiring, but it will be a good answer because that is His character. He is a good Father. He sees you and has promised never to abandon His children. 

All fees related to the community have been waived, so you can now join for free. I’m loving having a supportive, encouraging community of parents who “get it” and would love to have you join us!

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!

When You Want To Quit

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

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

1.     Take a breath or a walk.

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

2.     Schedule time with a friend.

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

3.     Cry out to God.

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

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

Written by Sarah McGuire

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

Father I Want To Know Thee

“Father I want to know Thee, but my coward heart fears to give up its toys. I cannot part with them without inward bleeding, and I do not try to hide from Thee the terror of the parting. I come trembling, but I do come. Please root from my heart all those things which I have cherished so long and which have become a very part of my living self, so that Thou mayest enter and dwell there without a rival. Then shall my heart have no need of the sun to shine in it, for Thyself wilt be the light of it, and there shall be no night there.” – A.W. Tozer

These are the words I wrote in the front my Bible in 2004, before heading to Africa as a missionary, a desire of mine since I was a young child. It was the sincere prayer of my heart that God be everything to me…and I thought He was. I had committed to and was joyfully living out, “God, I’m yours send me wherever you want, whenever you want me to go, and have me do whatever you plan for me” a commitment I had made in junior high.

That was before special needs entered my life. That was before two years of sleepless nights. That was before the dreams for my family and life were crushed beyond recognition or hope of repair. That was before I lost my health and before we lost our home which was such a gift and where we had built a new dream.

This week I sat in that home as we get rid of most of our things and read these words again. I’d forgotten about them in the front of that Bible, rarely used in the last many years in favor of a newer one and a different translation.

What a difference the depth of meaning these words have now nearly 16 years later. I’ve wanted God and a healthy child, God and a meaningful ministry outside my family, God and my welcoming, restorative home. None of these desires are wrong – a health child, a meaningful ministry, and lovely home.

Yet, when these things have been taken away my coward heart not only fears to give them up and bleeds at the parting (that’s called grief), but at times has felt angry at God over the rending of my wants and toys.

 There is a rending, a breaking of a dream, a shattering of something wonderful. There is brokenness. This world is cursed. It is crushed by sin. Where there is sin and brokenness, there will be pain. And I’ve learned that God weeps with me. God is a God of wholeness, creativity, beauty, love, forgiveness, holiness, and generosity. He is a God that will bring beauty out of our brokenness. When this broken world and the enemy of our soul crushes us, He desires to be our everything and for us to find our comfort and hope in Him.

Written by Sarah McGuire