The Days Are Long, but the Years Are Short

“The days are long, but the years are short.” 

I repeat this phrase while I sit on the couch listening to my 7-year-old grandson read for a half hour every evening.

Each time he turns a page, he says something like, “Wow, Grammy! What do you think that is?” or “I wonder what will happen next?” He ignores the words on the page and launches into several winding, imaginative explanations.

My grandson really, really likes to talk. And use his imagination. As for the reading part? Not so much. 

Which is why I eventually have to suggest, “Read the page and find out.”

He follows my suggestion––he can read more fluently than he believes––and finds out. Then he turns the page and begins the same process all over again. 

To contain my impatience, I whisper to myself, “The days are long, but the years are short.”

One evening as we read, my mind wandered back to when our son was young and medically fragile. When complications arose––maybe he had a fever, refused to eat because of an oral aversion, or vomited his food because of an esophageal blockage––our days were very, very long. 

Should we wait to see if he got better? Or worse?

Could we wait until morning to go to the doctor? Or call him right now?

Should we race to the emergency room in our car? Or should we call the ambulance?

Not only were the days long, but also the nights. 

When our son turned four I told my mother, “The years since he was born feel like a lifetime. Maybe it’s because we haven’t gotten a complete night of sleep since he was born.”

Mom smiled and said, “The days are long, but the years are short.”

My grandson turns a page and explains, “Look at that shark! What’s it’s name?”

His words draw me into the present. I smooth down his honey-colored rooster tail and inhale his little boy smell. He leans into me, and together we sound out a challenging word. He looks up at me and smiles in triumph. 

“I’m getting the hang of this, Grammy!”

He is getting the hang of reading, and I am getting the hang of the fickleness of time.

I think of my son, whose early years required several corrective esophageal surgeries before he got the hang of eating and swallowing. He’s a middle-aged man now, healthy and independent. 

Where did those years go?

I look down at my grandson and smile, 

grateful for this precious half-hour together, 

grateful for this reluctant reader’s victory over a pesky word, 

grateful his dyslexia that brings us together each night,

grateful for the joy of being part of his life, 

grateful for the wisdom gained through the special needs of my son and my grandson.

The days are long and the years are short, and in the eyes of God, both have eternal value.

Written by Jolene Philo

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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.

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!

6 Ways To Care For Your Spouse

When your life revolves around caring for your kids, especially children with additional needs, it is easy to see why marriage can take a backseat. We’re in survival mode, and we know our spouses are able to take care of themselves. But that doesn’t mean they don’t need our love and support. 

There’s a higher divorce rate between couples with children with special needs, and I can totally see why. Marriage is hard enough, but when you add the challenges and stresses of special needs parenting, there are bound to be extra bumps in the marriage.

BUT...you made a commitment to love, honor, and cherish your spouse. Here are six ways you can do that:

1. Have a heart to heart. 

You and your spouse may have different ways of dealing with your child’s special needs.  They are probably dealing with this journey different than you. But that doesn’t mean they don’t care about your child. It doesn’t mean they’re not experiencing their own grief and struggles. It doesn’t mean you both don’t have goals and dreams for your family to not just survive, but to thrive together. 

Take time to listen to each other. Ask questions. Make plans together. Determine to travel this journey together. To fight together for your children, and to fight for each other.

2. Do one thing for your spouse that shows you were thinking of them.

We have a million things on our plate, thinking about doing something for our spouse may not be anywhere near our plate. But I encourage you to think about something you can intentionally do for your spouse that would mean a lot to them and show them you were thinking about them. If your spouse has asked you to do something and you’ve been procrastinating on it, choose to get it done to honor them. Or if they’ve briefly mentioned something they would like done or would like to do, make it happen. 

If you don’t know what your spouse would like done, just ask, you may be surprised! I used to think my husband wanted the kitchen clean, laundry done, floor swept, dinners cooked, the whole shebang, and I felt like I was failing him because I couldn’t do it all. So one day I asked him what is the number one thing he wanted done around the house.

I was surprised when he said he just wanted the papers around the house to be organized, that the piles of paper stressed him out. With the kids’ school work and therapy evaluations and IEP papers and mail and bills, papers just pile up and I am oblivious to them. They don’t bother me so I don’t think to organize them that often, but now that I know it bothers him, I intentionally set aside time each week to sort through, file, organize, and recycle papers. He always notices when I do it and feels honored. 

3. Take some time to do something fun together.

Yes, I know this one is easier said than done sometimes. Especially when it’s hard to get childcare. If you can get childcare or respite to go on a date, do it! Go somewhere fun, and enjoy yourself and your spouse’s company.

If you can’t get childcare, think of something creative you and your spouse can do at home. Sometimes my husband and I would have picnic dates after the kids went to bed. We’d eat a late dinner or a dessert on the living room floor on a blanket with candles and just talk. Or watch a movie. It wasn’t fancy, but it was special because we made it so and chose to just focus on us.

4. Gift something special for your spouse just because you love them.

You don’t have to wait for a special occasion to buy or gift something to your spouse that you know they would appreciate. It doesn’t even have to be something big. It could be a funny card that reminded you of them, or something they mentioned they would enjoy having, or you could make or buy their favorite dinner or dessert.

5. Let your spouse know what you love about them.

It can be easy to feel like we’re letting people down or we’re not doing enough until someone tells us otherwise, and then it makes our day and makes a stand a little taller. It only takes a minute to let your spouse know how much they mean to you, or how much you appreciate certain aspects or qualities about them. You could also send encouraging texts throughout the day, leave a love note somewhere they’d find it, get them a funny card they’ll appreciate and write a few things you admire about them. 

My husband used to travel a lot for work, and I made a habit of writing him a little love note or getting him a card and stashing it somewhere in his suitcase or backpack. He never said anything about any of those notes, but I kept doing it anyway. One day, while we were packing up to move, I found a stack of these love notes and cards in his Bible he keeps in his nightstand. He had kept and treasured them all.

6. Hug, kiss, hold hands, all that mushy stuff.

When my husband would come home from work, a lot of times I’d be busy cooking dinner or doing something for the kids that I’d barely even acknowledge my husband’s arrival. One day I felt really convicted of that. I wanted our home to be a place he wanted to come home to, where he felt loved and wanted and so I determined from then on that when he came home I’d stop what I was doing and give him a quick hug or kiss and let him know I was glad to see him.

Hugging, kissing, shoulder rubs, cuddling, holding hands--whatever your spouse’s favorite form of physical touch is, make sure you’re incorporating it. Sprinkled in throughout the day, they are encouraging reminders that your spouse loves you and wants to be with you.

You may or may not have noticed that all these suggestions cover each of the five love languages. If you know your spouse’s love language, make sure you are speaking their language most often! But regardless of what love language you or your spouse have, incorporating all of them will do wonders for your marriage, and for your spouse. If you want to learn more I encourage you to check out Jolene Philo and Dr. Gary Chapman’s book Sharing Love Abundantly in Special Needs Families: The Five Love Languages for Parents of Children with Disabilities.

You can also check out our latest podcast episode, where we discuss embracing our spouses and this special needs parenting journey.

Nurturing our marriage and our spouse is not only good for “the one our heart loves” (Song of Solomon 3:4), but it is also healthy for our own emotional well-being, and for our children to see that their parents love each other.

Written by Jenn Soehnlin

Bio: Jenn Soehnlin is a mother to two little lads who are precious blessings and who both have special needs. She is the author of Embracing This Special Life: Learning to Flourish as a Mother of a Child with Special Needs.

Jenn enjoys blogging about faith, praying scripture, and special needs parenting at www.embracing.life. You can also find her on Facebook, Twitter, and Instagram.

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!

5 Powerful Ways Special Needs Parents Impact The World

5 powerful ways special needs parents impact the world may sound hyperbolic to people looking in on the disability community. But I've been part of a caregiving family all my life, and I assure you that special needs parents impact the world every single day. We just don't realize it. In fact, we tend to discount the importance of what we do. To see if that's true for you, read through the following statements.

• When someone asks about my job, I say things like "I'm just a mom" and "I'm just a dad."

• I sometimes think other people contribute more to society than I do.

• I sometimes think my life is too ordinary to make a difference.

• I rarely ask our physician questions about treatment options for my child because the doctor is the expert.

• I don't say much at parent-teacher conferences or IEP meetings, because the teachers and administrators know more about education than I do.

• I care for my child, but that's just what parents do. It's no big deal.

If 1 or more of the above statements describes you at least once in a while, you are selling yourself short as a special needs parents. As Bob Newhart said in one of the best comedy sketches ever, you need to stop it because your work caring for a child with special needs is making a huge impact on the world in these 5 ways.

1. You impact your kids' lives. All parents impact their kids' lives. That's no different for parents of kids with special needs because that's what parenting is. That's what parents do. We impact our kids' lives as we care for them, comfort them, teach them, provide for them, and encourage them. We are training them and creating a framework of support so they can be as independent as possible throughout their lives.

2. Your love changes your child's life trajectory. When you meet your child's basic physical and emotional needs, you are programming the wiring of her brain. Your daily love and care makes her brain more resilient, more intelligent, and more loving for the rest of her life. With every cuddle, every changed diaper or pad, every book read, every bath, every song you sing, and every walk around the block, your love and care maximizes your child's potential and enriches her life.

3. You fight against the power of evil. The brains of children who are raised without a loving primary caregiver, even if their physical needs are met, suffer lasting effects throughout life. Their relationships tend to be unhealthy, and they make poor choices. They are more prone to develop serious mental and physical illnesses, they age prematurely, and their life expectancy is shorter. By caring for your child with special needs, you fight against and minimize these evils. To put it another way, love is your super power.

4. You are an example to your children. I watched my mother care for my father for 38 years, starting when I was 2. She did many things right and some things wrong, and both were an example to me and my siblings. She wouldn't ask for help and required far too much of us as children. Because of her example, I now encourage parents raising kids with special needs to ask for help when they need it and to make space for their typical children to be kids and not caregivers. Through her example, I also saw that the foundation of loving someone in sickness and health is built on ordinary moments of care and compassion in which the holiness of God is displayed. In the same way, you are an example to your children now and for as long as they live.

5. Your care and compassion for your child with special needs testify of Christ in you. People outside the disability community see you and your child. Your caregiving is love in action, which means you are a living testimony of Christ. Even better, when onlookers say things like "I couldn't do what you're doing," you have an opportunity to share your faith story. You can explain how your dependency on Christ is why you can do what you do. God will use both your spoken and your lived testimony to draw onlookers closer to Him.

These 5 powerful ways special needs parents impact the world are the tip of the iceberg. How do I know that? Because God considers your sacrificial acts on behalf of your child to be valuable and worthy. He never discounts them. You shouldn't either because God is using what you do for your child to change the world!

Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

It's The Devil's Fault

While some of us are tempted to ask why God allows our children to be born with special needs (see last month’s article), some of us have the opposite reaction. For them, the very idea of “blaming” God seems entirely out of bounds, yet the wound remains. The pain must be dealt with. And so, we blame the devil or demons.

Not long ago I ran across an article in a fairly prominent Christian magazine. A “prophetic healing evangelist” claimed to have healed two children of the “demon spirit” of autism. I make no judgment about the writer’s motivations or sincerity. Still, my blood boiled. Quoting Luke 17:19 where Jesus tells a man that his faith has made him well, this person claimed that as the mothers released their faith completely the full manifestation of the healings could be completed .

Let me be clear, I believe God heals. The New Testament, especially the Gospels, make it clear that demonic forces are real and do indeed inflict harm on the world. We should recall, however, that in the book of Job it is clear that the devil cannot simply do whatever he wants whenever he wants.

There are, however, real problems with this healer’s line of thinking.

In the story being quoted (Luke 17:11-19), Jesus heals 10 men with leprosy. Only one, a Samaritan, returns to thank Jesus. Samaritans were looked down on by the Jews of Jesus’ day because they were seen as half breeds who did not worship God correctly. When Jesus says that this man’s faith healed him, it is first about who he has faith in–namely Jesus–which would have been totally unexpected for a Samaritan.

Second his faith is clearly contrasted with the other lepers who are Jewish and therefore have right belief and worship (in theory anyway). Yes, our faith is important because Jesus works in and through it, however, it is not about how much we have. It is about what God does with it (remember too that the others were still healed). Just prior to this Jesus told the apostles all they needed was faith the size of a mustard seed (v.6)!

What does this have to do with the possibility of demonic influence in autism?

A few things. First, not all of Jesus’ healings were directly related to demons. We should not ever go down a path that says, “if it is bad it is therefore demonic.” This is simply not biblical belief and frankly gives the devil far more credit than he deserves. Sometimes a disease is a disease. Second, there is simply no indication from Jesus’ ministry that the size of our faith has any impact on removing demons and none where deliverance was in any way something that happened over time. When Jesus healed, he healed.

On the surface, one exorcism seems to indicate that it is our faith that is needed for healing, but closer inspection shows that this is not true. In Matthew 17:14-21, Mark 9:14-29 and Luke 9:37-49, Jesus heals a demon-possessed boy whose symptoms sound a lot like epileptic grand mal seizures. The boy’s father went to the disciples first, but they could not heal him. Then he goes to the source, Jesus himself. In Matthew’s account, when the disciples ask why they could not heal the boy (v.19), Jesus tells them it is because they did not have enough faith (vv.20-21), NOT the father!

Mark’s account seems to pose a problem. The father is understandably doubtful when he takes the boy to Jesus (after all the disciples just failed). He asks Jesus “if” he can do anything (v.22). Jesus replies “’if you can?’ Everything is possible for one who believes.” (v.23) Isn’t this proof that my faith as a father has a direct impact on my son’s healing? Not so fast (v.24):

 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”

What parent of a child whom they want to see healed doesn’t understand this plea?

The man has faith to a point. He wants to believe, but his faith can only take him so far. And Jesus knows this. Because he heals the boy anyway. 

The devil is real. Demons are real. But they are not responsible for everything, certainly not every disease. It is spiritual malpractice to tell a parent that their child is suffering from demonic attack because they have a disease like autism. As we have seen over the past several articles, often we do not know why suffering happens. We do know that God is bigger than the cause of our suffering in any case. The world is a broken place. The question for us is not how big our faith is, but whom are we putting it in. Jesus has proven he is far more powerful than the devil.

Written by Kevin O’Brien

Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto.  Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group.

Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.

When It Is Not Well With My Soul

Today I want to introduce you to someone. This person is acquainted with grief. He knows what it is like to experience loss. He has been through it. Now I know what you’re thinking, you’re thinking I am going to talk about Jesus and will relate it back to having a savior who is intimately familiar with pain and gets what you are going through.  Nope, although that is true and would be a good article.

Today I want to introduce you to Horatio Spafford. Horatio was a successful attorney and real estate investor who lost a fortune in the Chicago fire of 1871. Around the same time, his four year old son died of scarlet fever.

Horatio thought it would be good for his family to get away for a while so he sent his wife and four daughters on a ship to England, where he planned on joining them later. As his family was traveling, the ship was involved in a collision and sunk. Horatio’s daughters perished in the accident.

As Horatio travelled to meet his wife, he penned the words to the hymn, “It Is Well With My Soul.”

When peace like a river, attendeth my way,

When sorrows like sea billows roll

Whatever my lot, thou hast taught me to say

It is well, it is well with my soul.

If you didn’t know the back story, this is one of those hymns that you would think was written by someone who had an easy life and never experienced loss or hard times.

As I write this and share about Horatio’s response to his pain, I’m fearful that you may think that I am saying that you are not supposed to grieve the hard, the difficult, the pain that is in your life. I’m fearful that you may think that I’m saying that we are supposed to gloss over it all and say that everything “is well with my soul” similar to answering “fine” when asked, “How are you?”

That is not the message here. I like Kristene DiMarco’s rendition of the song. In it she sings,

Through it all my eyes are on you. Through it all it is well.

Let go my soul and trust in Him. The waves and wind still know His name.

When we are in the midst of the storm, we can say ,“It is well with my soul” when we keep our eyes on Him. It is not well with my soul because of life circumstances. It is well because I know that God is in control. This does require a trust in God in the midst of the hard, which can in itself seem hard…sometimes impossible, especially when you feel like your boat is sinking. But, remember you do have a savior who gets what you’re going through and is intimately familiar with pain and sorrow. The same savior who calmed the waves and the wind is in control and knows what you are going through.

Hmm…I guess this article was about Jesus after all.

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.

When Life Is Hard

How are you doing? No, REALLY…how are you doing? Are you feeling great, energetic and looking forward to the day? Or are you feeling tired, stressed, and overwhelmed?

If I am being completely transparent,  I would have to say that I am more in the latter category. Our family is the middle of a move. This isn’t one of those moves where you are looking forward to the new possibilities (although we will get there). Due to health reasons, we are moving, leaving our dream house and property and frankly don’t know where or what we are moving to. To add a little more stress to the situation, we are losing a quarter of our income with this move and won’t be able to take most of our belongings with us.

These last couple days have been extra hard as Sarah has been packing, deciding what we can keep and can’t and grieving the loss of the home where our boys have spent the last eight years of their lives growing up.  There has been a lot of tears as we let go.

Can you relate to this?

I was reading the Bible this morning and Genesis 18 stood out to me. In this chapter, we see a very old Abraham and Sarah. The promise of God has not been fulfilled yet and his descendants do not yet number the stars. When we find Abraham, it is the hottest part of the afternoon and he is escaping the heat by relaxing in the opening of his tent. The Lord shows up in the form of three strangers and he immediately jumps up, greets them, washes their feet and asks them to stay to eat.

While eating, the Lord blesses Abraham and tells him that in a years time He will come back and Abraham and Sarah will have a son. Sarah is not there, but is in the tent listening and in her disbelief, laughs.

My tendency is to want to judge Sarah for not having faith. But let’s look at this situation through her eyes. What would you have thought if you were her? The reality is, she was old and beyond child bearing years and so was Abraham. We don’t know this but I do know people, especially people of faith, and I would almost bet that she had prayed on multiple occasions before then that they would have a child. Being childless was a disgrace in that time. She had lived years and to that point, God had not answered and provided them with a child.

God hears Sarah, and turns to Abraham and asks, “Why did Sarah laugh and say, ‘Will I really have a child now that I am old.’” This is the part I love, in verse 14 He asks, “Is anything too hard for the Lord?”

I love this because I know God is with me. I know He is in control. I love this because I know that this situation that seems overwhelming to me is not too hard for the Lord.

Is it too hard for me? Definitely, I don’t have all the answers and that’s okay. God never promised that we wouldn’t have more than we can handle. He did say that He would be with us every step of the way and we can know that nothing is too hard for Him.

Ideas For Spending Time with God in Any Stage of Life

In this life with kids with disability, everything changes; including the time, mental, and emotional energy we have as moms to put into our time getting to know God and His words to us.

There is never one “right” way to get to know God, learn about Him, and spend time with Him. There is so much freedom in that! It can look different for everyone. Not only that, what it looks like will very likely change over the years and seasons of our lives as our time and other responsibilities change.

In college, I used a set daily format, went through 2-10 verses at a time, took notes, and spent time praying for a total of around 30 minutes. On occasion, I skipped dinner or snuck away on weekends to get longer periods of uninterrupted time in stillness reading and praying.

But then there was marriage and kids and a child with a disability and medical issues. I didn’t even have two quiet minutes, let alone hours to steal away.

Maybe you’ve never read the Bible through in its entirety and are at a spot in life where that would be a perfect goal for you and would help you get to know God more. Maybe you have to sit in a therapy or doctor waiting room for a few hours per week and that would fit in beautifully. It’s an admirable and worthy goal! I’m so thankful I’ve been able to do that many times. It has been enriching to see the whole of God’s plan throughout time and to see themes repeated I would not have seen were I reading a few verses or one or two chapters at a time.

If you are in a place like I found myself this past December, maybe it’s time to change things up.

My solution - I’ve purchased a coloring Bible, because I don’t sit in quiet stillness well anymore. This year I am going to spend time coloring and meditating on one verse per day while resting and waiting in God’s presence.

If you are in a stage of life where kids and caregiving are making Bible and God time difficult to impossible, here some suggestions:

First, focus on being faithful to whatever God has put into your day. If caring for a child all day (and all night) is what He has put in your day, don’t feel guilty for not getting in a time of Bible reading or study. There was a time when Elijah was doing God’s work to the point of exhaustion. God didn’t tell him to get with it and do more. No, God sent an angel to give him food and water and told Elijah to eat, rest, and eat some more. If that’s the stage you are in, be faithful with what is in front of you. Rest in God and knowing He loves and cares for you. It’s about His grace and mercy, not your effort!

Second, once you’ve rested and eaten, try to memorize one or two verses that you can meditate on should your child fall asleep in your arms and you don’t dare to move a muscle (I’ve been there). I liked Isaiah 40:11 and Zephaniah 3:17, but choose ones that speak to your heart and mind.

Third, I encourage you to get an audio Bible. YouVersion has a read aloud feature for free that can be used with the various Bible reading plans. Last year, I got the One Year Chronological Bible on Audible for $6.50. That’s a great investment to be able to fit some Bible “reading” into bits and pieces of your day when a paper copy just won’t work.

Whatever stage you are in, there is a way to spend some focused time with God. Even if it’s when your child has fallen into an exhausted sleep in your arms after hours of screaming and you just picture yourself held in His arms just as you are holding your child in your arms.

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!

Behold I Make All Things New

“And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.” (Rev., 21:5, ESV).

One of our favorite past times as a family is to visit the Botanical Gardens near our home in the Chicago suburbs. It is a huge space of grounds that covers many acres of forest preserve land, complete with a variety of gardens, wooded trails and greenhouses. As teachers (or former teachers!) we are always took advantage of free entry with our ID, and it has been a great place to take our autistic son whenever he needed a motor break or just needed to be outside. 

This year, we had a much different experience, as the Gardens hosted a new light show called Lightscape which unlike previous years where they had just stung up a variety of holiday lights, this was essentially a giant light show through the entire grounds, including whole displays timed to music, lighted shapes and designs placed along the walkways and trails, and even a light “cathedral” which featured hundreds of strings of lights that covered a long open gazebo.

We were excited to bring our son since it was something totally new, and we knew how much he loved both the outdoors but also music and lights. As we entered the grounds on a chilly Thursday evening, we were struck by how sophisticated and lovely the show was, and our son was so entranced by all of the sensory experiences that he continually produced a giant smile on his face. The best part was when he stood mesmerized at a fiber optics display that was set up along the rocks of an outdoor fountain, just standing and watching the lights flow down the rocks like water.

In that moment, I was reminded by how unique and special this light display had made an otherwise regular feature in the garden that my son would have seen hundreds of times before. It was the same, but different, it had been recreated, transformed and essentially made “new” right before my son’s eyes. 

This experience reminded me of some powerful lessons this holiday season. While we always come back to the birth of Christ at Christmas as our source for eternal hope, I find it all too easy to get lost in the craziness of the celebrations.

This year, I was forced to look at this season in a new light, as my wife and me began the unfortunate process of divorce in November. I personally struggled to find hope when all I could feel was my own personal pain, suffering and anger, but a visit to one of my favorite places helped to lighten my mood. But it did more than that, as I watched my son’s amazement at the incredible light show that had changed a very familiar location into something completely new and different. It had become changed in ways I couldn’t have expected, and I was brought back to a place of peace and remembering the promise we have in our lives being reborn. It is in moments such as this that I am reminded of the promise that He will literally remake everything, and all we must do is to show up, be aware, and behold the goodness of His promises.

Written by John Felageller

John lives in Northbrook, IL and is currently a Social Programs Manager at Total Link 2 Community in Chicago, IL.  He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.

Connect with John on his Facebook page here.

When Your Bible Time Goes Stale

I pulled out my Bible to complete my Bible reading. I finished Revelation 22. The last book and chapter of the Bible. It was December 31 and I had done it again. I’d read the Bible through in a year.

In the past, when my son was so sick and required 24/7 care, there were months I didn’t have the time or energy to even open my Bible to read one verse. This was before smart phones, YouVersion audio Bibles, and Audible. So, if I was holding my screaming son who was in pain, I couldn’t be holding my Bible.

For several years now, I’ve had the privilege of being able to read the Bible through in one year. (I really like the chronological format.) Yet, as I closed my Bible this December, I knew I needed a different focus for the coming year. I could feel how it had become more of a task to complete, a goal to achieve, rather than time spent with my Father.

With the new year, I like to take time to set some goals for the coming year. I evaluate where our family has been, strengths, weaknesses, needs, vision for life, work, family members, self. I think about what has been working and what has not been working. I think about what or how I dream of being and of what and who I dream of my kids becoming and set some intentional steps to move us in that direction.

If you’ve spent any time goal setting, you’ve probably heard of SMART goals. Goals that are Specific, Measurable, Attainable, Relevant, and Time-based. Reading the Bible through in one year fits that metric perfectly. Yet, I knew that repeating that goal again this year would not get me where I wanted to go. It wouldn’t help me with who I want to be and to become.

My real goal is to know God more; to love God fully; to be loving, joyful, peaceful, patient, kind, good, gentle, and self-disciplined; and to abide and rest in Him because all those things I just listed are a result of Him in me. Those goals are a little harder to define as a SMART goal and for me to make them into SMART goals would defeat the purpose.

Next week I’ll share with you my solution and what I’ve chosen to do this year as well as some suggestions for how to get some Bible or God time in when caring for a child that takes your everything and your every moment. In the meantime, comment and share with me what types of Bible or God-time goals you have used and enjoyed.

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!

How God Is Using Depression To Give Me Hope

In this excerpt from her interview on the Hope Anew Disability Podcast, Gillian shares how her depression is being used by God to give her hope.

Listen to the full interview on the Hope Anew Disability Podcast January 6th!

When Hope Isn't A Thrill

This is the season of hope but I realize that many of you are going through hard times and not feeling so hopeful.

Sarah and I recently had the privilege of interviewing Gillian Marchenko on the Hope Anew Disability podcast and you will be able to hear the interview the first Monday in January! One of the questions that we asked was, “How do you find hope in the darkness?” We had a great conversation about this in the podcast. Gillian went on to write about it further in a recent article on her blog and gave us permission to repost it on the Hope Anew blog here!

May it help you find hope this Christmas season.

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A thrill of hope?

It’s Christmas time, those days in the year when popular lyrics like “a thrill of hope” are on the tip of the tongue. And yet, for some of us who fight depression, the idea of hope isn’t a thrill, but rather a briar patch of disappointment, confused emotions, and shame.

Depression is defined as hopelessness.

For me, hope often feels more lost than found when my mind is frost bitten by darkness. What in the world is a Christian supposed to do with all this?

“Gillian, how do you find hope in the darkness?” the podcast host asked me recently during a conversation about mental illness. A straight forward question with a layered and at times, seemingly complicated answer. How do I explain the inner turmoil that blows around my insides like a bitter, winter breeze swept up in a frenzy? Sometimes hope is a promise I can grab on to. Other times, it melts in my hands.

A positional hope

My friend Andrea and I are working through the book of Romans together and it talks a lot about hope. Look at some of chapter five:

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. 

Romans 5:1-2

Obtained access by faith into this grace in which we stand. This is a positional hope a person has when he or she responds in faith to the gospel. It’s solid, sure. It doesn’t melt away. We rejoice in hope of the glory of God. What does glory mean here? It’s who he is. We rejoice in WHO GOD IS. He is our hope.

But can I find hope?

The wording of the question in the podcast, find hope, stuck with me. Can I find hope? Paul says yes. He talks about the already and not yet of hope, already possessed through the gospel and something that should be sought after and grown. But how do we do that? How do we seek hope and grow it?

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

Romans 5:3-5

After Paul proclaims positional hope in the glory of God through Jesus, he then gives us action points to help cultivate hope in our day-to-day lives. We are told to endure in the faith (not give up) and to let that endurance grow our character (by living faithful lives obedient to God). Endurance produces character and character produces HOPE. How do we endure? By looking to the gospel and trusting God. How do we grow our character? By beholding Jesus above and beyond anything else in our lives, and we can behold him in scripture, prayer, and in fellowship with others.

The NIV adds the word ‘proven’ to these phrases in Romans; endurance produces proven character, and proven character produces hope. Although my emotions my say differently on any given day, when I look back at my life, I see God’s proven faithfulness over and over again. And when I commune with God in a rhythmic way, Christ has ample opportunity to whisper these truths in my ear.

There’s hope positionally in me. And there’s hope for today.

Hope grows in suffering

We rejoice in our sufferings.

Romans 5:3

Is my depression, the one thing I would flick out the window as quickly as people flicked cigarette butts out of the car in the 70s, what is teaching me to hope?

Years ago, I wouldn’t have been able to stomach the thought that my depression would produce hope. But as I’ve grown in my faith and in health, in the midst of freezing out the world in dark nights of the soul, crying out to God for healing, and clawing out of the pits of pain time after time, I have learned and continue to learn this:

When Jesus is all you have, you find that Jesus is all you need.

My depression is training me to hope. Suffering produces hope.

The weary world rejoices

Because of Christ, I can rejoice in my achy limbs and muddied thinking. They aren’t happenstance. They have purpose in me. They stretch me to endure. They mold my character. Hope exists whether I feel it or not because hope isn’t the desire of a future want or need fulfilled, but rather Jesus Christ himself. It’s his life, death, resurrection, and pending return. And when I focus on these truths, my weary world rejoices.

Hope is a promise, not a feeling. And God, by his grace and in his great wisdom, is growing hope in me today.

And that actually is pretty thrilling.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Romans 15:13

Written by Gillian Marchenko

This article was reposted with permission. To read the original, please go here.

Gillian Marchenko is an author and a speaker. She lives near St. Louis with her husband Sergei and their four daughters. Find out more about Gillian at her website gillianmarchenko.com.

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Answered Prayers For Healing

I prayed that God would heal my son’s food allergies and autism. I prayed that He would lead me to the right research, interventions, and answers to bring healing to my son’s body that would heal his allergies and autism.

I prayed that God would heal my chronic illness involving extreme fatigue, brain fog and insomnia. I prayed that God would give me enough energy to take care of my family and even minister to others too.

I prayed that I would know God more, who He really is and not just knowing about Him from church and Bible school. I prayed for spiritual healing, salvation yes, I resolved that long ago. But beyond salvation, my desires and motivations had (and still have) a long way to go in mirroring His.

He answered my prayers for healing my son and spiritual healing with a yes and He is in the process of answering my prayer for healing my chronic illness with a yes, but none of them were how I expected or how I would have chosen for Him to do it.

My son’s healing came through extreme lifestyle changes that revolutionized most aspects of our family’s life. It was not easy, took a lot of time, commitment money, research, and sacrifices.

My chronic illness, of 10 plus years, is at the beginning of the process (it’s been 3 weeks), but the differences are significant already. It is not easy, requires our family to relocate, and involves huge sacrifices on the part of all of each family member and extended family in order to make it happen.

My spiritual healing isn’t easy either. It was initiated with my Savior suffering and dying a horrible death and taking my sins on Him to pay the price I owed. I’m sinful. God is holy. Without the pain and sacrifice of Jesus, there would be no healing for me. Ongoing as I desire to be more like Him, His answer to my prayer for that is not simply to give me a more spiritually mature perspective and faith, but to grow it in me by the challenges I face in this life as I come to Him with the problems and struggles and depend on Him as we go through them.

There was a time (years) in my life where I felt like God had abandoned me, was silent and was not answering my prayers. In reality, He was answering, but I couldn’t see it because the answer was in such a different form than I expected. At least that was the case for healing my son and my spiritual healing. For healing my chronic illness, evidently it wasn’t the right time yet. That answer is involving stripping many other beloved things and people away from my family and I, and I don’t think it would have been good for my family for that to have come much sooner. He knows the perfect timing.

God doesn’t always answer prayers with a, “Yes”, nor does He always answer right away or even soon. When He does answer with a, “Yes”, it may involve other sacrifices, work, and painful things. But no matter His answer, He is always working for our good, even when it doesn’t look or feel like it.

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!

5 Scriptures For When You Are Overwhelmed

Do you ever feel overwhelmed? Some of you may have just snorted and thought to yourself, “I feel overwhelmed right now.” As I was sitting at the dinner table last night, finishing the last of the Thanksgiving turkey and sweet potato casserole, I  began thinking of the parents I know with families that are impacted by special needs, who are in this place of being overwhelmed.

It’s like the movie, “The Perfect Storm.”  In this movie three raging weather fronts collide with each other to form this super storm. The movie tells the story of a commercial fishing vessel that was lost at sea with her crew.   

While we look forward to the holidays, they undeniably create extra stress. The stress from Thanksgiving merges and intensifies with Christmas. When you insert another major stressor (health issues, marriage issues, additional needs related to the care of your child…all the above), you find yourself in the middle of your own Perfect Storm. 

This can result in irritability, exhaustion, depression, wanting to escape life and being less able to deal with the individual stressors in a healthy way.

You may find yourself in a place of wishing you could just hunker down in the midst of the storm and wait it out until about January 2, as you feel exhausted, wrung out and overwhelmed.

 If this is you, I hope that the following five scriptures bring you comfort and peace during this season.

1.  “Your word is a lamp for my feet,
   a light on my path.” ~ Psalm 119: 105

2.  “Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” ~ Psalm 23: 4

3.  “Whoever dwells in the shelter of the Most High
   will rest in the shadow of the Almighty.
   I will say of the Lord, ‘He is my refuge and my fortress,
   my God, in whom I trust.'” ~ Psalm 91: 1-2

4. “For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” ~ Isaiah 41: 13

5. “I, even I, am he who comforts you.” ~ Isaiah 51: 12

As this week closes, pause, take a breath and reflect on the above scriptures before diving into the to do list for next week. The same God who calmed the storms over the sea of Galilee, is with you through the storms of life 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.

Making New Traditions

Pumpkin pie, turkey, football, stuffing, twinkling lights, snowflakes swirling down, pies, family gatherings, gifts around a tree, and cookie decorating. The holidays. They inspire a feeling of cozy warmth, celebration, and cherished memories. Until they don’t. Until thinking of those memories breaks your heart in pieces because life has changed. You now have a child with special needs or disability that has changed everything.

When our son was young and was allergic to most foods, highly sensory sensitive, nonverbal, autistic and more, the holidays rolled around and that meant no pie, no cookies, no stuffing, no Grandma’s special bread rolls, no gravy, no family gatherings. Too much noise, too much chaos and stimulation, too much change, too great of a chance for food reactions. Too much of some things, yet nothing of the desired things.

Our first Christmas with him was miserable. We were 1100 miles away from family and because of our son’s needs and our financial constraints, we didn’t even try to go home for the holidays. We decided we needed to make our own Christmas traditions since we couldn’t be with family.

In our family we do birthday desserts since my husband detests cake. With Christmas being Jesus’ birthday, our first new tradition was to have a birthday dessert with candles and sing “Happy Birthday” to Jesus after our Christmas meal.

I made a cherry pie (my husband’s favorite) with all special ingredients that we could eat on our son’s special diet, which I had to strictly abide by since he was nursing. It took me hours to find a recipe that met the requirements (special diets were rare at that time), had to special order some ingredients, and spent an hour or more making it. We were so excited about this pie. It was the pinnacle to our somewhat sorry Christmas meal. With great anticipation we served it and took our first bite – yuck! It was awful. We trashed the rest of the pie.

Holidays can be a very difficult time for families with kids with special needs. Many of the traditions they used to enjoy, they can’t anymore. Family gatherings they used to cherish, they can’t participate in anymore. It can be an especially hard and lonely time as the difficulties that come with special needs are magnified and what has been lost looms larger than ever.

Our first attempt was a sorry start to new holiday traditions. However, we persisted and 11 years later, we have some special Thanksgiving and Christmas traditions. If you find yourself in a place that we were at eleven years ago, think about starting some of your own traditions that fit your family’s needs. Here are a couple of ours to get your thinking started:

• We made our own specialty-diet approved Thanksgiving menu.

• We have a Thankfulness Pumpkin where each morning of November, we each say one thing we are thankful for and write it on the pumpkin with a Sharpie.

• We have a Christmas moose (we couldn’t afford the famous elf so we used what we had) that hides at night every night in December and on rare occasions finds himself precarious spots. We don’t do elaborate scenes, it’s more of a “hide and seek”. The boys love searching for him every morning. On Christmas morning, he is always kneeling with Mary, Joseph and the camels in the nativity.

• Every Christmas Eve we have a pajama party and watch Elf. Often we open one gift beforehand, which happens to be new pajamas.

• When we aren’t with extended family, we make Jesus a birthday dessert and sing him “Happy Birthday”.

If you are in a tough season of not being able to participate in holiday celebrations like you used to, I hope you are able to create some new traditions that fit your family’s needs perfectly!

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!

Safeguarding Your Marriage

In the early years our oldest daughter didn’t sleep. She would be up for hours and hours at a time in the middle of the night. Although I was the one who was mostly home during the week it truly was too much awake-ness for too long of an amount of time for one person to handle it all. So my husband willingly took his fair share of night shifts. Turns out lack of sleep is super hard on relationships. I’m sure if you have a child that doesn’t sleep well you are very aware of this fact. Lack of sleep compounded with the stress of raising a child with any kind of special need calls for strong relationship skills. While we didn’t do everything right and there were often harsh things said and forgiveness needed I do think we had a few things in place that served our family and our relationship really well.

1. Pre-forgiven.

   It didn’t take long for us to figure out the middle of the night weren’t our shiniest moments. So when frustration (and fatigue) got the best of us we chose to pre-forgive each other. My husband is very reasonable, he is kind and generous, and would almost always do anything to make my life better. Also, he has said some unkind things to me at 3am after getting no sleep. So the next day when one of us would apologize the other would respond with “pre-forgiven”. Meaning, “Hey, I know you, and 3am aren’t our best relational moments, so let’s acknowledge we are doing our best and move on” no big makeup conversation needed.

2. Time off.

   From the very beginning my husband and I each had time to rest every week. Rest is vital for us. In fact if we look at the creation story Man rested on his very first day of existence. And then worked from his rest. So we made it a priority very early on to have 4ish hours a week to rest and recharge.  This can be a challenge if you have a child that is very connected to one parent. But let me give you a bit of truth. YOU HAVE TO REST. And your spouse and your child WILL be okay if you step away for a few hours. It might be rough for both of them. But they need a parent who isn’t at their wits end. So it is vital to take time away and reset.

3. Time together.

   Once a week(ish) we would find a bit of time to be together. Sometimes that meant a babysitter and a real date. Sometimes that meant unplugging from technology and playing a game or watching a movie during nap time or bed time. But it was something we valued and were extremely protective of.  It is easy to forget that you like your spouse when fun feels rare and there is constant stress to manage.  I even remember a coffee date at the hospital coffee cart during our daughters annual MRI.

Safeguarding your relationship while having a child with medical or special needs is so important. And done with intentionality.

“A perfect marriage is just two imperfect people who refuse to give up on each other”- unknown.

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

Chronic Grief and the Holidays

Next week is Thanksgiving and Christmas isn’t far behind! I love these holidays but for many families the holidays can be a sad time as they grieve loved ones who have been lost, relationships that have been severed or other difficult situations.

For families with children impacted by disability, this can also be a difficult time.  There can be a grieving of lost family traditions, the mourning of distanced family relationships due to lack of understanding of your child’s disability, and grief related to how the disability impacts your child.

Don’t hear me say that there aren’t many wonderful things about our children or that they are somehow less than. I’m NOT saying that at all. Our children are fearfully and wonderfully made but that doesn’t mean we don’t grieve. This grief can even become chronic. 

You may be thinking, “What is that? Chronic grief?”

With “typical” grief there is a definitive start point and while the timeframe varies from person to person, the person grieving eventually arrives at a place of acceptance and the grief generally diminishes. It may spike on significant dates such as birthdays and anniversaries. 

With “chronic” grief, the loss is a living loss. At its core, there is a discrepancy between what is perceived as a painful reality on one hand and continues to be dreamed of on the other hand. The loss is ongoing since the source of the loss continues to be present.

Lorna Bradley had the following to say about the grief we experience as parents in this disability journey:

“All parents have hopes, dreams and expectations for the life of their child.  There is an expected order to life with developmental milestones leading toward maturity and independence. With every milestone that is not met, every hardship the child faces related to their need, every struggle the parent faces as they care for their child, the parent is thrown back into grief with all its ferocity. The parent will eventually develop new dreams for their child and family but will always mourn the child and family life that never was.”

Are there things you are grieving this holiday season? Be assured, that you have a savior who gets it. Jesus was acquainted with grief intimately.

Isaiah 53:3 – A man of sorrows acquainted with deepest grief.                               

Hebrews 2:18  -Jesus was tested & suffered and is able to help those who are tested.     

John 11:33-35 – Jesus wept over the death of Lazarus.

Hebrews 5:7-9 - He offered prayers & pleadings with a loud cry & tears to the One who could rescue him from death.             

John 12:27 – My soul is deeply troubled.                  

Matthew 26:37-38 – He became anguished & distressed. His soul was crushed with grief to the point of death.

In this Thanksgiving and Christmas season, if grief is hitting you extra hard. Be assured that you are not alone. God is our helper and has given us a comforter.

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.

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When Being Thankful Is Hard As a Special Needs Parent

When being thankful is hard as a special needs parent––and let's not beat around the bush, watching our children struggle doesn't lend itself to loud hosannas––how do we approach Thanksgiving? How do we cultivate gratitude without sugar coating the challenges in our kids' lives? How can we be grateful when a child's condition is going from bad to worse, and we can find nothing to be grateful for?

I stared down those questions more than once when our baby boy struggled to stay alive.

The first time was during my first Thanksgiving as a parent. By then our six-month-old had endured 2 major surgeries, a three week NICU stay, a week long PICU stay, two dozen early morning GI procedures, and an overnight hospital stay on Halloween weekend. I was sleep-deprived, grieving, and my breasts were sore after months of pumping milk for our tube-fed baby who could tolerate nothing but breast milk. The thought of being thankful for my child's precarious state of health and the pain our baby had endured was unimaginable. Cruel.

I couldn't do it.

The week after my thankless Thanksgiving, I did what proud, new parents everywhere do. I composed a Christmas letter, complete with pictures of our baby boy in his elf costume, to mail to the many friends and family members who had faithfully prayed for us since our son's birth. As I reread Luke 1 and 2, looking for a verse for the end of the letter, the story of Jesus' birth came alive for me in a way it never had before. For the first time, I understood the enormity of what God had done in sending His Son to earth to live among sinners and die to save them. I understood that while God knew the good that would come through the death of Jesus, the sacrifice he made broke his heart.

In that moment, for the first time since I had become a parent, gratitude flooded my soul.

 Not for my son's condition. Not for the anguish my husband and I had experienced. Not for our son's life. Not for healing. Not for doctors. Not for modern medicine. Not for the family and friends who had rallied around us. Not for any of the things clueless people said should make me thankful as the parent of a child with special needs.

I was grateful because God, the ruler of the universe, knew my pain.

Instead of commanding me to be grateful, he shared my broken heart. He sat with me. He put his arm around me. He cried with me. He said, "I know. It hurts. Go ahead and cry. Borrow my hankie. Take as long as you need. I'm here for you."

When being thankful is hard as a special needs parent this Thanksgiving, remember that he is here for you too.

He's not asking you to be grateful for the challenges in your child's life. He's not asking you to deny your emotions. He's not asking you to act like everything is okay. He's not asking you to soldier on. He's asking you to lean into him. To cry on his shoulder. To cling to his compassion until one day, a day you can not yet imagine, you realize you have someone to be thankful for.

Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families. Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at  www.DifferentDream.com. She and her husband live in Iowa.

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