When The Rug Gets Yanked Out From Under Your Life

The last year and a half has been a doozy for me, and I’d guess it has been for many of us for different reasons. I mean, 2020-2021, seriously? Over this year and a half my personal inner-life journey has taken me on quite a ride and while circumstances have offered up different challenges that haven’t resolved yet, my personal journey has been life-giving.

How does that happen? How can we not have circumstances align with what we want or need, yet have our heart, mind, & soul thrive anyway?

I’ll give a caveat that my most basic physical needs were met. I had a roof over my head, heat, food, water, sleep, and my immediate family with me whom I love dearly and who love me. The rest of life, including a house, friends, church, church family, homeschool group, and a significant chunk of our income, well, those were stripped away and my health was already greatly diminished, so that’s where I was a year and a half ago.

How do we move forward when the rug gets yanked out from under us and our life, as it has been, as we liked, as we dreamed of and worked to build, suddenly crumbles? For some of us that day is when our child gets a diagnosis that we know will change our lives forever. For some, a job loss. For some, a support system we depend on suddenly isn’t dependable or even available. What then?

Finding a private place to melt into a pile on the floor and cry it out with a bag of Lindt chocolates (my personal favorite – the chocolate, not the melting into a sobbing mess) close at hand may come first. Screaming to God about it might happen too. Grief – however that looks for you – is important. Acknowledging the pain (in a healthy way – not hurling anger on everyone around us) is critical! If we bury it, it will fester and cause other problems.

After scraping myself off the floor and expressing my feelings and thoughts to God repeatedly, this is what I did. I made a conscious choice that when I stepped out of my beloved house and into my new (not what I would have chosen) residence, I would NOT complain. Complaints would not cross my lips. I could still acknowledge & grieve the sadness of the losses, but I would not complain about the present.

It took several months, but the resolution to not complain morphed into intentionally looking for things to be thankful for – every day. And when challenges arose, to look for what I could be thankful for in the situation. I didn’t deny that it wasn’t ideal or that it wasn’t hard or unwanted, but I’d look for the good in it.

Instead of griping about the hot water running out 6 minutes into my shower, I could be thankful for the hot water I did have and get my hair cut shorter so I could take quicker showers. Guess what, I got lots of compliments on my shorter hair. It suits me better!

Instead of complaining about things breaking, falling off, or getting damaged on our new home (an RV), I could focus on being thankful for a resourceful, capable, problem-solving husband and it became part of the adventure.

One of the latest examples, I was commenting to a friend how I felt bad for my kids and how they weren’t getting to experience a typical (even typical for homeschool) high school experience with friends close by, sports, group activities, etc. during these critical years. She graciously called my attention to all they are getting to experience. A few hours later as I reflected on the conversation, I realized an unfavorable trait (that isn’t the kind that can be overcome with teaching or training) that had characterized one of my sons a good part of his life had completely disappeared over the previous year. Oh my, I’d been focused on what my husband and I weren’t able to provide for them and what I thought was lacking and instead there was so, so much he had gained that was worth invaluably more!

I have a long way to go in overcoming my negative thinking and making thankfulness my default, but one day at a time, I get closer to that goal!

How about you, have you ever taken a period of time to intentionally focus on annihilating complaining and to be purposefully thankful? How did it go? What happened?

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.

Spreading His Wings

On Sunday we lost Ben.

He had filled his backpack full of things he needed for camp and headed out the door on foot to try to make it to Rockbridge Camp. Out of all the things he has lost because of quarantine, this has been the hardest loss. 

Ben loves Rockbridge because it’s an incredible camp for students with disabilities. We found this camp through YoungLife’s Capernaum ministry. It’s an awesome ministry that has really blessed Ben and our family.

When Ben left that day, I am not sure what he was actually thinking. Was he really trying to get to camp by foot? Or, was he just dying to go somewhere alone? I know what I was thinking, and all of the scenarios in my head weren’t good. In the first 10 minutes I had already pictured him kidnapped and I was scared!

After we realized he was gone, we all headed out on a hunt for him. His brother and Dad were on bikes and I was in the car. Despite our effort to fan out and cover a wide area, he somehow managed to dodge all of us!

Thankfully we finally found him 2 neighborhoods away! Looking back, now what seemed like an eternity really wasn’t that long. He was probably only lost for 20-30 minutes. But, it felt much longer.

While he had a bag packed “for camp”, I think there was more to his escape. Ben is 18 and just like any teen he wants to be independent. That’s something we all want, right? Many kids look forward to being able to walk to a friend’s house alone. Or, the day they get a license and can drive off and be independent. Or, the real independence of living alone. 

And then there it is again —the heart pain. I have felt these pains before. The pain of wanting him to have something that I can’t always give him. Once again, having to let go of what I want and see what I have been given. This has been my heartache my entire life, and I think it will forever be there. You see, I don’t know if I can ever give him the independence he wants. Of course he can eventually take a walk on his own— but I don’t know that I can ever give him the independence he wants.

Special needs parenting is hard. I promise you, I don’t ever regret the gift God gave me. Any day of the week I can list a million blessings I have seen just for having him in my life. But, my heart still aches sometimes. Sometimes I look at him and see an 18 year old who has come so far and other times I see how far there is still to go. We can hide behind our smiles and hang on to each and every milestone we conquer but it doesn’t make any of it easy. Our lives will look different forever.

But on this Sunday I just prayed to have him home. The thought of losing him brought panic, because I don’t know what I would do without him. Even though he can often make my life a challenge, he also blesses me richly. He has taught me to trust God with so many of the unknowns with Ben’s life. And, by trusting Him there, I’ve learned how to trust Him better in other areas. 

Ben has helped me see that God gives me the strength to be the mother he needs. I know I’m not perfect. In fact, there are some days where I feel like Ben and want to pack my bags and leave as well. Those days typically come when I’m tired, exhausted or sad. But even when these days are hard I have hope. My Heavenly Father promises me that “those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” (Isaiah 40:31)

So as Ben starts to spread his wings and find some independence in his own life, I don’t have to fear. I can be hopeful because of God. And, I can spread my wings as well. 

Written by Leigh Ann Kaman

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

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 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!

Just Get Over It

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

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

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

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

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

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

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

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

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

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

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

Written by Jonathan McGuire

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

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

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!

Who Is Your Tribe?

It was 2012, South Sudan (a country in Africa) was only a year old at that point. I was in a refugee camp on the border of South Sudan and Sudan. Refuges were flooding into the camp daily by the thousands, as tanks were attacking only 8 km away.

 I met Beauty as I was helping lead a trauma healing program for the refugees. Beauty came to our workshop so she could be trained to help her family and tribe deal with their pain, sorrow and loss. Beauty was in so much emotional pain. It was not uncommon to find her staring off in the distance, no emotions showing and even slightly turned away from the group as she wrapped herself in her cloak, as if to hide from the rest of the world.

 In the afternoon, our group would end and each participant would return to where they were staying in the refugee camp and at night, you might be surprised by what you would find. You would find Beauty with those members of her tribe and family that made it to the refugee camp. You would no longer see a stoic Beauty with flat emotions. Instead, you would be greeted by the sight of Beauty dancing and singing to the beat of the drums with the other survivors in her tribe.

This dancing and singing could be heard on a nightly basis and was not restricted to Beauty and her tribe. As I lay there in my tent at night, the sounds of drums beating and people singing could be heard rising from all around the camp.

As a parent of a child with special needs, there have been many days where I felt like I was in survival mode. There have been many days where I didn’t have the strength or energy to deal with the emotions that I was experiencing. There have been days where I wish I could wrap myself up in a cloak and turn away from it all. Using it as a protective wall that I could hide beyond and not have to face the reality of what it meant to be the father of a son with special needs. The pain he was in constantly. The impact that caring for him was having on my wife. The extra pressures that we had of not being able to pay for needed treatments.

Can you relate to this?

Let me ask you, who is your tribe? Who is your community? Who are those people that you can let your cloak down with and be real with?

 When we are grieving, we can’t bury the pain but we also can’t let our pain define us. When we are under stress beyond what we can bear and think that we will collapse if we get one more piece of bad news, we need that tribe. We  need that community that “get’s it,” that community who already knows our pain because they have been through it. That community that we can be with, without always diving into the drudgeries of the day and know without saying anything that they understand. That group of people that you can be real with, laugh with and even dance with to the beat of a drum.

A God Who Gets It

Do you ever feel so alone and like there just is not anyone who really gets it? It is impossible to explain to someone in passing the realities of what it took for you to be at that place at that moment.  Most people won’t be able to understand what goes into your average week or would not know what to really say when you tell them where you are really at emotionally or spiritually.  When you finally are able to sit down with your friends over a cup of coffee, you find it hard to really enter into the conversation because you are in such different places. You find your priorities are different and discussing vacation plans or home decorating ideas is taxing.

Finding those one or two people who you can really be open with and really share your heart with is so hard. This Easter season I have been reminded that while being a parent of a child impacted with special needs can be really lonely, we have a God who gets it.  He gets it like no one else really can.

Many of us memorized John 3:16 as a child. It says, "For this is how God loved the world: He gave His one and only Son, so that everyone who believes in Him will not perish but have eternal life." It is so easy to just read over that and think how nice it is that God provided a way that our sins can be forgiven and that we can once again have a relationship with Him.  When reading this verse, I have always thought about the cost to Jesus for our salvation and it wasn't until recently that I really stopped and thought about what it cost God the Father.

He knew what restoring our relationship with Him would cost His only son. The Father knew what Jesus would endure when He came to a sin cursed world. He knew that as Isaiah, prophesied in chapter 53, His son would be a "man of sorrows, acquainted with deepest grief" and despised and rejected. Our Heavenly Father heard Jesus' prayer in the Garden of Gethsemane when Jesus was praying so intensely for another option that He sweated drops of blood. He knew that His son would die on a cross after being whipped, mocked and having a crown of thorns placed on His head. This is how I know that He understands what we are going through.  He gets my pain when I see the additional struggles my son faces. He gets my joy when I celebrate the successes.

So this Easter season, while I am celebrating the resurrection of my Savior, I am also celebrating the fact that I am not alone. My Father gets it and I can pour out my heart to Him at any time.

Those who live in the shelter of the Most High will find rest in the shadow of the Almighty.

~ Psalm 91:1 (NLT)