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!

Rejoicing Vs. Grieving

“Rejoice in the Lord always. I will say it again: Rejoice!”

~ Philippians 4:4

If there was ever a verse in the Bible that I felt like taking the white out marker to, this at one point may have been right at the top of the list. Let’s be real, when we are in the midst of a hard time this probably isn’t our go-to scripture passage. As a side note, if you are coming alongside someone who is struggling, this shouldn’t be your go-to scripture to encourage them.

When we are struggling, we are often told to REJOICE as if that is an exclusive emotion and that we shouldn’t grieve the loss.

Did you know that you can feel multiple emotions at once?

At times, these emotions can even seem contradictory to each other. For example, we have the word, “bittersweet.”  Can you think of a time that was bittersweet to you? It might be the completion of a therapy but the loss of a therapist. It may have been the graduation of a child or when a friend had to move out of state for a job.

There is a focus that is often missed when a caring soul tells us to rejoice. The focus that is missed is, “in the Lord.” No matter how bad things get, I can look at my heavenly Father  and rejoice in who He is. I can rejoice in His character, His power, that even when it feels like we are alone…He never leaves us. I can rejoice that someday I will be with Him in heaven and the effects of a sin-cursed world will no longer wreak havoc on those I love.

While I am rejoicing in the Lord, I can still grieve a particular situation. I can grieve that milestone my child didn’t reach. I can grieve the therapist who left that they connected with. I can grieve the additional struggles and pain that my child may experience in life due to the effects of their disability.

In fact, we need to grieve those things.

There have been times when I have asked couples how they coped with various difficult situations in their journey through disability and they replied with they just chose to rejoice. I hate to be the bearer of bad news but that is just called denial. This is one of the official stages of grief and can last for a short period, for decades, or can come and go.

When we live in the land of denial and refuse to move forward in the grieving process, it will re-emerge eventually. It may re-emerge as negative emotions or even health issues.

If you find yourself in this place of grieving, don’t feel guilty or like it means that your faith isn’t strong. It is part of the journey and it is part of healing.

As I close, I want to encourage you to REJOICE…IN THE LORD. However, when you rejoice in the Lord, know that He is with you as you journey through the land of grief. 

What is one character trait of God that you can praise Him for today?

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.

Unique Challenges Of Marriage: My Spouse Is Overreacting

“My wife thinks our son has autism.” It was morning and I was sitting in the office of a colleague of mine. He had just asked how I was doing and that was my reply. There was a disassociation there, as I didn’t want to believe it yet.

It took me longer to accept the diagnosis than what it did for Sarah. For Sarah, the diagnosis was a relief because it gave direction and helped her better understand what was going on. She had been caring for our son all day and all night, day in and day out. She was searching for answers when no one else could give us any.

I was away at work all day and not home until late evening. I didn’t see the day in and day out as much. For me, the diagnosis communicated a weight, a finality, the beginning of the end of a dream. I didn’t want the diagnosis to be true so I denied it.

You may find yourself identifying with where I was. You may be smack dab in the middle of denial and think that your spouse is way out in left field with whatever diagnosis your child is facing. You may think your spouse is overreacting to whatever is going on. If you are in this camp, it can be easy to become irritable whenever the diagnosis or other health struggles are mentioned. It can be easy to be upset and even grow bitter at your spouse.

If this is where you find yourself and some of the above thoughts resonate with you, remember it is time to love well. Notice, I didn’t say to just humor your spouse but love them. Here are some ways that you can do that:

• Engage with them. Don’t just burry yourself in your work to avoid the problem. They are likely lonely and need you.
•  Listen to them. Set down the phone. Turn off the TV. Make eye contact and really listen.
• When they bring research and information to you, study it.
• Whenever you have a chance, go with them to the doctor appointments. Don’t be afraid to ask the doctor questions.
• Trust them. I don’t know you but more than likely, if you are in this spot, your spouse is the primary caregiver and is with the child a greater portion of the day. Trust them and trust their instincts.

After a time, I accepted what was going on and became that much more engaged. While I went on to go through the other aspects of chronic grief, I came to a point of being able to dream a different dream for our son and Sarah and I became a stronger team.

How you demonstrate love to your spouse during this time is so crucial. This time can have the effect of tearing apart a marriage or strengthening it. How you show love to each other will make all the difference.

How can you best show love to your spouse right now?

P.S. If you feel like your spouse is in denial, don’t just print this article off and leave it waiting for them somewhere! That probably won’t be received the most favorably.