The Shell Of Many Colors

“He is not here, for he has risen, as he said. Come, see the place where he lay.”

(Matt., 28:6, ESV).

This past Good Friday I had my son with me for an overnight visit. Being a now divorced dad, there are many challenges that naturally come up, but one very important one is how our autistic son will be supported in his Christian faith. For my part, I have sought out a new church with a special needs ministry that we could attend together, try to keep up with Bible reading when we can, and of course celebrate the holidays.

For a change, I decided to attempt coloring Easter eggs with him on my own for the first time. It might not seem to be any big deal to parents of typical kids, but in our house doing something as trivial as coloring easter eggs can be a big job. While I know my son understands what coloring Easter eggs is over all of these years, he still struggles with the motor control to independently control and dip the eggs, and of course he deals with sensory issues which encourage him to want to stick his hands in and splash the water. But I still felt it was an important bonding activity for the two of us, so I purchased the eggs and the kit, set up everything as orderly and neatly as I could, and we endeavored to color some eggs. Since he is non-verbal, I also set up his Ipad with his communication app next to the setup, so that he could tell me what colors he wanted to use. When it was all ready and I called him over to the table, I of course took the obligatory picture of him pointing to the colors that he liked best.

An activity like this could truthfully be pretty quick, as I just ask my son the colors he likes, assist him in dipping them into the coloring, and lay them down to dry, simple. But as people of faith, I want him to know that this is about more than just doing something fun. The eggs represent rebirth and new life, and more specifically the act of Jesus coming out of the tomb on Resurrection Sunday. I paused to reflect though on what this  meant for me and my son doing this together, as that visual of emerging from the egg had bigger connotations in that moment. I thought about this hopefully being the beginning of the end of the covid pandemic, and our whole population coming out of quarantine. I also thought about my son’s own condition as a non verbal child, and how him being able to use his device to communicate his wants was also a way of him coming out of the shell of his speech impediment. 

Watching the eggs dry, I gazed as the wet colors settled on the shells, forming their intricate swirls and patterns, contemplating their uniqueness. Just like each one of those eggs, they are unique and beautiful in their own way, manifesting the colors of God’s love, wrapping around the hardened shells of doubt and fear. It is a wonderful reminder that everything can change in the blink of an eye, as soon the shells will break, and the tomb will open, revealing the glory that was hidden inside.

Written by John Felageller

Follow John on his website: www.johnfelageller.com

Navigating The Special Needs World: 4 Helpful Tips

1. Stay Organized.

So much of our lives are unknown right now. We feel chaotic and cluttered but it’s important to try to stay organized when it comes to your child with special needs. Try to keep every piece of paper that relates to your child’s disabilities, services, needs, schooling and so on. I wish I had kept more of Ben’s paperwork. We moved when he was 5 and some of his paperwork is now hard to get my hands on.  For example, I had a formal document with Ben's diagnosis that was given to me when he was just a week old.  I never thought I'd need that and didn't keep track of it.  But, I did need it when it came time to apply for his Social Security benefits.  We were able to contact his old pediatrician and request a copy.  But, I wonder what would have happened if that Doctor had retired and closed his practice?  Try to keep the current and historical papers readily accessible in print and digital format, if necessary. Occasionally review files and ensure that your paperwork is up to date.

2. Education is important. 

• Educate yourself. Once you enter the special needs world you have to educate yourself on a host of topics that other parents never encounter. It’s good to read as much as you can about your child’s diagnosis and be familiar with terminology relating to it. Learn about your rights, what you can and can’t get your child, any new therapies that might help your child, and lots more. Be willing to learn. Use other parents as a resource. If you don’t understand keep asking questions until you do. Remember you don’t have to accept anything a doctor, therapist or school official tells you – you are the best advocate for your child.  It's acceptable to push back on the opinion's of others when you feel you have to.

• Educate others. People are going to ask questions or make comments. You can serve your child by taking the time to respond with the appropriate information. Ignorance leads to fear. With understanding comes acceptance. We all dream of living in a world of acceptance. It starts with us!

3. Learn to have the guts to stand up for your child. 

No appointments until next May? The school can’t possibly provide an aide? Insurance won’t cover therapies for children with developmental delays? When you encounter a no, don’t take that for an answer. Just keep asking , with a smile on your face. Remember persistence and determination are generally always rewarded and being kind goes a long way. 

4. Remember to take care of yourself. 

Parenting my typical kids is hard work but parenting my child with special needs is even harder.   It is important to take care of yourself or you will burn out. You can not help your child until you meet your own needs. Remember just like on an airplane , you must ensure you have your oxygen mask on first, then help others. Do something that makes you happy. Get exercise, sleep, and eat well. Remember that without a healthy you , you can’t take care of someone else. 

Being an advocate for your child is hard. I believe it’s one of the hardest jobs I have ever had. But it’s also the most rewarding. Believe me you can make a difference for your child and for other children. We can do this one step at a time.

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. 

4 Steps for Navigating Fear

In last week’s article, I shared how fear serves an important role and acts like the warning light on the dash of our car.  How did last week go? Did you recognize this warning light going off in yourself, your spouse, or child?

If your answer is yes, then you may be wondering what to do. Here are four steps to help you navigate your fear and for you to help your family members navigate their fears:

1.     Pray & remind yourself of who God is:

Take a deep, slow breath or 20 and share your fears with your heavenly father. Ask Him for His peace and wisdom. Remind yourself of those truths in God’s word about who He is and His character. For example, He is sovereign and all knowing.

2.     Develop & implement a plan:

For example:

1. Determine steps needed to protect your family from getting sick, such as limit social interaction, wash hands, etc.

2. Establish a new routine – after being somewhere, get in car and use hand sanitizer on hands, inside door handle, phone and wallet before touching the steering wheel

3. Check into alternative options to meet medical needs, if the need arises

4. Think of alternative solutions for social engagement

5. …..

This will not be a one and done plan. As you implement it, you will need to revise it to better meet your family’s needs. There will be items on the list that you won’t have immediate solutions for but part of your plan may be steps to find those solutions.

3.     Find a community:

Fear becomes more paralyzing when we go through it alone. Find a community that gets it but be aware of the culture of that community.  You become like the people you spend the most time with. If the community is negative and not hope-filled, that will feed your fear and not reset it.

As a side note, if this is a need that you see in your life, I would like to invite you to join the Hope Anew Online Community. This is a great time to join as we have waived the membership fee. You can learn more at HopeAnew.com

4.     Look for ways to bless others:

When we look for ways to be “Jesus with skin on” to others, it can take our focus off ourselves and we can receive joy as we encourage others.

During this time you may need to be creative but it can become a fun family project.

As you are figuring out how to navigate this new season, remember that God is with you. He loves you and your family. He will never leave you and never forsake you.

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!

Written by Jonathan McGuire

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.

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.

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.

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.

Asking Why

I have always been a firm believer in starting with why. I think that it’s the most fundamental human question and far too often we simply drift through life trying to keep ourselves busy or amused or whatever just so we don’t have to face that question.  

Every parent of an autistic child asks why. Why did this happen to my child? Why did this happen to me? Why is my child acting this way? Why can’t I have one normal day? Why, God? Why? (With alternating exasperation and rage, I find.)

I wish I had a good answer. I don’t. But then I am not a finished product yet, and neither is my autistic son. Sometimes there simply isn’t a why, at least not one we can get to in the here and now.

In my self-pitying moments I wonder if God ever asks himself why about us. I have multiple theological degrees. I can give you the arguments and the clichés about God not being surprised by the dumb things that we do.

But then I think about Matthew’s account of Jesus on the cross and that most disturbing question: “About three in the afternoon Jesus cried out in a loud voice, ‘Eli, Eli, lema sabachthani?’ (which means ‘My God, my God, why have you forsaken me?’)” (Matthew 27:46, NIV).

Jesus asks why. He knows the answer. That’s not the point. The point is that God himself, the second person of the Trinity, knows such extreme agony, such extreme suffering that he calls out, “WHY?!” to the Father.

For most of us, when it comes to our kids, when it comes to the pain in our spouses and all of the lost hopes and dreams, “why” is less about a good reason than it is a demand that this all matters somehow, that it means something. To be sure, we would like reasons too.

I am learning to come at why from new angles. And I am learning that sometimes why is less important than I thought. Sometimes you need to get in there and do even when you don’t have all of the right answers or even half of the information that you feel like you need.

As much as I want it, Nate can’t give me a why. He can’t explain it. And he gives few clues to figure it out. And that is perhaps the hardest part. Sometimes you have to break things down into component parts to figure out how they fit together, to get to why. I would have never thought that years of oil and sawdust and hammers and wrenches and watching my father tear apart cars and rebuild garage doors from scratch—and well, a hundred other things I don’t remember—would help me to understand my son. I never would have thought that it might take a son with autism to jump-start me from being paralyzed by why and start doing something.

Jesus asked the Father why.

The answer was us—was me.

Which means that He is with us through all of our whys.

Adapted from the chapter “Why Versus What” in Life on the Spectrum.

Written by Kevin O’Brien

Kevin O’Brien is a freelance writer and marketing consultant living in the far western suburbs of Chicago with his wife, 3 children, a dog, and a cat. Kevin’s middle son, Nathan, is autistic. He is a contributing author to Life on the Spectrum, a book to encourage and inspire parents and caregivers of children with autism, by parents of children on the autism spectrum  An ordained minister and veteran of the Christian publishing industry, he has helped develop, write content for, launch and market several Bibles. Kevin loves to learn new things, and would prefer to spend his time reading, speaking, writing, woodworking and watching the Chicago Blackhawks. He occasionally tweets @kevinrobrienthm and can be found online at www.treadingthedawn.com .

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15 Scriptures For Overcoming Lies, Fears And Doubts

When we go through dark, lonely times it’s easy for our thinking to get cloudy, to forget the things we know, and to get confused. It’s easy to start believing lies instead of truth.

~ Sarah McGuire

During my doubting, fighting-daily-for-faith years, I started a list of thoughts I struggled with and Bible verses that I could go to in order to combat those lies or struggles. This was nothing formal or beautifully done, just a long, narrow sheet of paper torn from my magnetic grocery list pad.

When I came across a verse that spoke to me and could help with a thought I struggled with, I’d jot down the thought and the coordinating verse reference. I left it in my Bible so it was handy to add to it. As it grew over months and years, I had my own personalized list of lie-combatting, confusion-clearing, truth-telling, uplifting Scriptures.

Here is my list, maybe you struggle with some of the same thoughts I did and you’ll find some of these helpful. Some were quite personal and aren’t normally references I would associate the with topic, but the day I read them, it was clear God’s Holy Spirit was speaking it to me, so I put it on my list.

1. I am valuable – Mt. 10: 30-31; Isa 43:4; Zeph 3:17

2. It’s more than I can bear. I can’t do it (overwhelmed, inadequate, worn out) – Zech 4:6, Deut 31:8, Ps 37:5, 2 Cor 1:8-9, Isa 43:2

3. God may not watch out for me in this situation – Haggai 2:19, 23

4. Troubled, worried, stressed – John 14:1

5. Overwhelmed by evil or suffering – Phil 4:8

6. In need of help – Isa 30:18

7. God has forgotten me – Isa 40:27, Isa 49:14-16

8. If I seek God, I’ll find God – Isa 65:24

9. God isn’t in charge of this world – Daniel 4:17, 25, 32

10. Worried about needs – Mt 6: 33, Rom 8:32, Isa 65:24, Phil 4:19

11. God always hears me – Jn 11:41, 42

12. Not sure what to do – Ps 32:8

13. I’m broken – 2 Cor 1:8-9

14. God isn’t listening or acting – Mt 6:8, 2 Chron 7:14, Lk 11:9, 10

15. It’s useless to pray – James 5:16

None of us are perfectly the same. Satan is good at finding our vulnerable spots and the lies that will have the greatest power in our lives. I encourage you to start your own list and let God speak His truth into your life.

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!

3 Ways To Focus On How Our Children Are Fearfully and Wonderfully Made

We love our children fiercely. We would do anything to care for them and provide for all their additional needs. Though our children can feel like our whole world, there are also times it is easy to wish things were different for them. To compare them to other children and wish things came easier. To focus on their health and their weaknesses and struggles and additional needs. To feel like there’s no end to the tunnel of appointments and accommodations and needs our children will have. And we lose sight of the fact that our child is “fearfully and wonderfully made” (Psalm 139:14).

It has taken me years of parenting two children with special needs to stop focusing so much on their delays and differences and weaknesses and instead focus on just how uniquely and beautifully God made them.

It’s a mindset shift I’m still working on today, but one that has helped my heart immensely. It has allowed me to enjoy my children more and to be proud to be their mother. There are three ways in particular that have helped me focus on my children more like I imagine God does. 

First – Focus on Your Child’s Victories

It’s so easy to see how far our child has to go to catch up with their peers. To see how slow the progress can be sometimes. But we have to be intentional to focus on the positive. To focus on each and every victory, no matter how small it may seem.  

In the Genesis account of God creating the world, He said “it was good,” after everything He created. He didn’t just say “it was good,” when it was all done. We must do that too. Celebrate every milestone and every hard-fought inch in-between. After all, they are all victories and all deserve celebration. 

And we shouldn’t just celebrate those developmental victories, but spiritual ones as well. When you see your child exhibiting any of the fruit of the Spirit, praise and celebrate that. When you see your child grasp a deeper understanding of God’s love for them, celebrate that. 

I’m sure God is celebrating right along with us. He knows how hard our children have worked on each and every skill and He cares about the things we care about. 

Reflection: What are some of the latest victories you’ve seen in your child(ren)?

Second – Focus on Your Child’s Heart

“But the Lord said to Samuel, “Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart,” (1 Samuel 16:7).

While Jesse didn’t think his youngest son looked like a king, and in fact didn’t even have David come in from tending the sheep to present to Jesse to be a future king, David’s heart was the one that God knew was right for the job.

It is easy to focus on our children’s outward appearance, their development, their health, their behaviors, and their struggles, and not on their heart. To not focus on those personality traits and strengths and gifts and passions that are unique to them. To not see the fruit of the spirit they exhibit in their lives. To not see how they give and receive love. To not see and nurture those deeper aspects of who they are that makes them so unique, so wonderful, and such a blessing to our lives.

Reflection: In what ways do you focus more on your child’s outward appearance than you do their heart? What can you do to show your child(ren) how much you love their heart?

Third – Focus on Your Child’s Gifts and Passions

In Exodus 31:1-6 God tells Moses about how He designed and gifted Bezalei. God says “I have filled him with the Spirit of God, with skill, ability and knowledge in all kinds of crafts-to make artistic designs for work in gold, silver and bronze, to cut and set stones, to work in wood, and to engage in all kinds of craftsmanship.” You can sense the pride in God’s voice as He brags about Bezalei using his gifts and skills. This was the man that God had chosen to build His holy tabernacle, where God’s presence would reside. 

When you have a child with special needs, it’s easy to want to focus on the areas they need to improve, rather than focus on their strengths and passions and giftings. Our children have gifts and talents that God wants us to help nurture and steward in our children.

They have something awesome to offer the kingdom of God too. And we have the honor of coming alongside them and helping them identify and use and grow their gifts and skills and passions.

 Reflection: What are some of your child(ren)’s gifts and passions?

What can you do to nurture those gifts and passions? 

*    * *

It’s an intentional mindset shift, choosing to focus on these aspects of our children when it can be so easy to focus on other things. But by choosing to focus on seeing our children as God does, it will help you find the beauty in the way God uniquely, fearfully, and wonderfully crafted your child(ren). 

Reflection: Which of these ways do you find easiest to focus on your child(ren)?

Which ways do you want to be more intentional in focusing on your child(ren) like God does?

Written by Jenn Soehnlin

Jenn Soehnlin is the mother of two young boys 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. 

When I Am Not Enough

This morning my Bible reading found me in Psalm 34. I sometimes will read a Psalm and circle the attributes or roles of God that I see throughout the Psalm and note it in the margin. I don’t do this every time I read the Bible, but that’s what I was doing this morning. I’m only 34 chapters into Psalms, but as I’m sure you could guess, the same ones keep popping up again and again. Some of the most common themes so far are: helper, rescuer, defender, protector, fortress, refuge, guide, strength, unfailing love, holy, trustworthy, faithful, compassion, ruler, judge, and more.

 Today, as I was reading, something stood out that hadn’t stood out to me so far in my Psalm reading. Let me quote a few parts and see if you pick up on it too.

“I prayed…he answered…he freed.” v. 4

“Those who look to him for help will be radiant with joy;” v. 5

“I prayed, and the LORD listened; he saved…” v. 6

“Those who trust in the LORD will lack no good thing.” v. 10

“The LORD hears his people when they call to him for help. He rescues…” v. 17

“No one who takes refuge in him will be condemned.” v. 22

In each of these, it is the individual who goes to God first, “I prayed” “…who look to him.” “…when they call to him…” “…who takes refuge in him…”, before the need is heard, the rescue is realized, the freedom given, the fears allayed, the joy radiating, the condemnation averted. 

God didn’t step in and say, “I see this is a problem, let me take care of that for you.” No, He waited for the person to bring it to Him in prayer, look to Him for help, trust Him, or take refuge in Him.

That last one, “…takes refuge in Him…” brought to mind the verse “The name of the LORD is a strong tower, the righteous run into it and they are saved” Ps. 18:10. I got a little cartoon video in my head of a medieval stone tower running to cover and shelter a person and how silly that would be. No, the person (a soldier in the cartoon video in my head) chooses to run to the tower for safety.

When I think back on the hardest days and years of our son’s journey, I recall wanting God’s help, expecting His help, waiting for His help while all the time trying to solve all the problems and carry all the burdens on my own. I don’t remember asking for His help or moving to Him for His help and shelter until I completely exhausted myself and physically broke. I very distinctly remember asking for His help that day and the days following, when I was at the end of myself.  

God doesn’t always answer right away and He may not always answer in the way we want things to be answered. But, sometimes, He’s just waiting for us to come to the end of ourselves and to look to Him.

Sarah McGuire  is the Mom of two boys and 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 is launching a new online community October 1! You can check it out at www.HopeAnew.com.

Should We Do ‘Chores’?

For many years now we have not had ‘chore charts’ or lists in our house. I don’t know what your experience is like but we found that when our oldest two reached an age where ‘chores’ seemed appropriate we did the right thing, we made a list, had a reward system in place and sat back to watch as skills, confidence, independence and a sense of team blossomed! We were brought down to earth with a bump fairly quickly.

For us chore lists became battle grounds, and what seemed to blossom was resentment, feelings of failure and comparisons. ‘I did mine on time, she didn’t – how come she gets the reward too?’ ‘His were easier than mine, and he had less homework – it’s not fair!’ ‘But you always help them, you don’t help me!’…

We persevered for a bit but in the end we quit. Chore lists were certainly not promoting team effort, or a sense of interdependence. I’m not sure any new skills were gained by any of us. And the experience gave none of us more confidence – personally or in our parenting abilities!

But I find myself here again, should we do ‘chores’? Our youngest is now nearly 9 and because of our last attempt she has rarely ever seen a chore list stuck to the fridge – but there are definitely now skills that she has to offer to help family life run well.

She’s great at making a bed for example – if reminded, and in the mood. She can help unload the dishwasher, wipe clean a table, and feed the animals. So should we try again? Am I letting her down if we don’t – aren’t chores an important part of learning responsibility and seeing we’re all part of a team?

It’s a difficult one – I don’t want battles, or resentment – we have more than enough of both of those as it is. So is there another way to develop skills and a sense of team work in family life without that being the result? I was reading around and came across ‘family contributions’ as an alternative approach. Still based on doing age (and ability) appropriate jobs around the house but rather than chore then reward, the focus is more on recognizing (and hopefully growing) what each person in the family contributes.

I like the concept. It is less like a duty or a rule which suggests the need for visible fairness and more like an attitude in mutual gratitude. This may have something going for it. There feels already to be more room to value different abilities – it didn’t seem fair to have very obviously different types of chores being equated on a reward chart side by side. Maybe there is more to be learnt using this concept – not just a sense of responsibility to do a duty but also in each doing what we can do well and being noticed maybe we will learn to value each other’s abilities that bit more. That can only be a good thing.

One thing our family life is very good at is reminding me daily that none of us can do everything, but we are all good at some things. Our abilities and strengths need praising and encouraging in family life, especially in a world which often praises such a narrow selection of abilities and talents.

I am willing to give it a try, there are plenty of printable examples out there that I could adapt to match our particular family and our abilities, and I’ll introduce it very, very, gently. Small steps. And lots of celebration over the offered contributions of everyone, however different, however seemingly small, or how often they are offered!

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

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

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

Diagnosis, A Defining Moment

I remember the moment perfectly. I was a counselor and was at a Burger King with a client when I heard the news about the planes hitting the twin towers in New York.  The rest of that day, my role was to help my clients process their own fears as the news unfolded.  Coming alongside the student who had hidden under his desk and was scared to come out and checking in with the rest of my families to see how they were doing.

There was a unification in our country as we mourned with the families impacted and we wanted justice. There was a time when it was no longer taboo to talk about God and how He comes alongside us.

The pain has faded for many and except for a posters on 9/11 saying “We Will Remember”, life has returned to normal for those who were not directly impacted.

---

 For those of us with a child impacted by disability, there is another date that is cemented in our minds. We each have our own twin towers moment. That moment when our world came crashing down. My twin towers moment began with Sarah telling me, “I think our son has autism.” The rest of the conversation is a bit of a blur to me as she walked me through why she thought Jordan was autistic but I do remember the emotions.

I remember being flooded with denial and thinking that she was over-reacting and must be wrong. I remember the fear of the unknown and what it would mean for his future. I remember the feelings of being overwhelmed and the sadness that came with wondering if Sarah was right.

 After Sarah shared this with me, I went into work the next morning and sat down in the office of a trusted colleague who had a grandson that was diagnosed with autism. When he asked how I was, the first words out of my mouth were, “Sarah thinks Jordan has autism.” We talked, he listened and I went back to work grieving and eventually building a new normal, and a new dream.

If you and I were to sit down together, I bet you could tell me exactly when your child was diagnosed, where you were and how you felt. You could tell me what life has been like since then and about the people who were there for you in the beginning and who it is that still comes alongside you.  

You may still get a sense of anxiety and panic as you are in situations that bring back those memories. You may still be in that place of grieving and asking God those hard questions. That’s okay. Someday, you will be able to dream a different dream too.

Healing will come but we will always remember.  

“I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.”

 Ephesians 3:16-19 (NIV)

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.

A Mentor During Hard Times

Have you ever had those “ah ha” moments? Sometimes they are that one piece that helps everything else fit together and sometimes they are so obvious that you don’t know why you didn’t think of it before.

I was helping our youngest son fill out a form for an online contest, when I had just such an “ah ha” moment.  One of the questions on the form asked him who he considered to be a mentor of his. He went through the obvious answers of his grandparents, his mom and his dad. Frankly, I was excited to see that I still made the list. It was his last answer that surprised me and made me think. The answer was God/the Holy Spirit.

At first, I wanted to say that he couldn’t say that. I wanted to tell him that wasn’t what the question meant. It reminded me of the old joke where a Sunday school teacher would ask the students a question and the students would always give the answer of “Jesus.”  It didn’t matter what the question was.

After we talked, our son reminded me who our God, specifically the Holy Spirit is. He is always with us and He helps us in understanding God’s word. He convicts us. He teaches us.  

The definition of a mentor is an experienced and trusted advisor. Synonyms are a guide, confidant, counselor, spiritual leader, and therapist. For those of us, who have a relationship with Christ, the word “mentor” so wonderfully describes who the Holy Spirit is to us.   

As followers of Christ, the Holy Spirit  is our mentor, our counselor, our comforter, our guide, our confidant who lives within us (Romans 8:9).  

Do you ever get stuck in those moments of wanting to give up? Do you ever feel like you are alone in this journey and like a complete failure? Perhaps you are struggling with God, His promises and wondering why He would ever allow your child to struggle with the pain they are experiencing. Maybe you are in the process of making some difficult decision and you feel like it’s a no win situation.  

We often go through life, trying to make it day to day on our own. There is a feeling that we should be able to “pull ourselves up by our bootstraps.”  Our pain is so deep and vulnerable that we don’t dare open up to those who are close to us but keep it buried somewhere.

In those moments, remember that if you are a follower of Christ, you have a mentor, a counselor, a comforter and a guide.  You have someone that knows your fears, your feelings of guilt, and the depths of your struggles. You have someone that will guide you to the truth, and our hope.

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.

The Other R Word

We dropped Luke off at the Monarch Boarding Academy on August 9th, 2018. It was one of the few times, in our 25 year marriage, I’ve seen my husband break down.

I did too but that was nothing new. I’d been crying daily for a few months thinking about Luke not living at home with us. Caring for Luke, who has autism, has been my main job for 14 years. He has been my most constant companion.

After I had a serious injury during one of Luke’s meltdowns our school district suggested last winter that we consider visiting residential schools. I was hoping and praying to at least find a good option close to home. Then Luke could keep attending Giant Steps, a private day program he has gone to since the end of kindergarten. His wonderful teacher, assistants, and other therapists loved him and didn’t want to see him go.

Mostly, though, I told my husband (a very tough, caring guy who serves as a police LT. and therefore can’t always be with us) even if it meant being home bound or getting hurt again I wanted Luke home with us.

I knew someday FAR OFF we would need to figure out a good living situation for him but he is only 14.

Over the last few months the Lord has shown us bringing Luke to Monarch Center for Autism is His will in a variety of ways, but it is still gut wrenching; the hardest thing I’ve ever done.

On the long car ride home after leaving Luke, I felt torn up, raw, sad and guilty. During the 30 day transition time we couldn’t visit Luke but when we called or Skyped he seemed to be doing much better than me. I am very thankful for that.

Something making this whole transition even tougher is the feeling that I don’t fit into my special needs world like I have for the past decade. While so many of our friends, with and without children who have special needs, have been extremely supportive I have gotten comments that tear me up inside.

Heck, I’m sure I have said, or at least thought some of the comments myself.

Hearing “I would NEVER do that to my child” from another parent of someone with special needs crushed me. It seems to me that RESIDENTIAL is the other R word. Or at the very least something too scary to think or talk about.

The week after we brought Luke to his new home, we brought our 18-year-old, Brandon, to college. It was tough saying good-bye and leaving him but a whole different experience. The college had a ceremony for new students and their parents to celebrate the new beginning and give time to say good-bye. At Augustana College’s orientation a few months ago a speaker for the parents discussed how we might be feeling and gave us some tips for letting go. These things didn’t happen for us with Luke, although the staff at Monarch have been kind and helpful.

My great comfort is knowing how much God loves Luke and how He has used him in people’s lives in the past. In my good moments I pray for my boy to keep knowing Jesus’ love and showing that love to others at his new home and school. Heck, right now both Luke and Brandon are missionaries at their respective schools!

Written by Deb Abbs

We (Hope Anew) are starting an online community October 1, including a group for those families whose loved ones with special needs live apart from them. We would love to have you join!

Read more from Deborah Abbs and others in Life on the Spectrum. To learn more follow us on our FB page Life on the Spectrum Book.

Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Our honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.  Come on the journey with us!

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Rejoice To Do Good

Rejoice to do good.

Those words from Ecclesiastes 3:12 have been easy to obey this month with the release of Sharing Love Abundantly in Special Needs Families, which I co-wrote with Dr. Gary Chapman. Yeah, he's the love languages guy. So I have plenty to rejoice about these days.

But when I was a kid surreptitiously carrying my dad's urinal to the empty in the church bathroom or feeling the stares of neighbor kids as I wheeled him around the block, the command to rejoice to do good stuck in my craw.

After the birth of our first child, my reaction to the rejoice to do good thing would have been to throw my Bible across the room. If I'd had time to read my Bible. Which I didn't thanks to sleep deprivation, and atypical baby care like pumping breast milk 6 times a day to pour down his feeding tube, and way too many 240 mile round trips from the remote town where we lived to the doctor's office.

 All of which prevented the throwing of my Bible. And proves that Romans 8:28 is true. God does work all things to good for those who love Him and are called according to His purposes.

 Back to rejoice to do good thing. My point is this.

 Throughout my childhood, when Mom, my siblings, and I cared for Dad we were doing great good. My husband and I also did great good caring for our son during the hard first years of his life. In both situations, we had no idea we were doing good. We were just doing what loving families do–we were taking care of our family members who couldn't care for themselves.

I'm sure there were people who pointed this truth out to Mom, but it went over my daydreamy head. I think there were people who pointed out this truth to my husband and me, but we were too sleep deprived and stressed for it to register. Not to mention that hearing such a sentiment from a person who is hasn't raised a child with disabilities or special needs would have been hard for me to swallow.

I, however, am a parent who raised a child with special needs. I am like you, so I can speak this truth into your heart. You are doing great good.

You do great good every time you race your medically fragile child to the doctor's office or hospital.

You do great good when you stand calmly beside your child when he has a meltdown at the grocery store.

You do great good when you advocate for your child at IEP meetings and annual reviews.

You do great good work when you change your adult son's diaper or your adult daughter's menstrual pad.

You do great good by showing up at church with your entire family on Sunday morning.

You do great good when you drag out of bed every night to comfort your child.

You do great good by biting your tongue and choosing words of affirmation instead of frustration.

You do great good when you look into your child's eyes and say, "I love you. You are worthy. You are made in God's image."

In these ways and a thousand million others every day you are doing great good.

Though you may not see all the good now, one day–in this world or the next–you will. In that day, you will be amazed by the good God has accomplished through you and through your child. This is why we can rejoice to do good even in the hard days of caregiving. We can rejoice to do good because as believers and children of God, we stand upon God's promise to use our present situation for eternal good. We know, without a shadow of doubt, that the best is yet to come. 

Now to Him who is able to do far more abundantly beyond all that we ask or think,

according to the power that works within us,

to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen.

Ephesians 3:20–21 (NASB)

Written by Jolene Philo

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. Most recently, She co-wrote 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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To The Mom Who Feels Like A Failure

It was another long day, which turned into another long night, week, and month. There wasn’t much distinction between day and night. Either way, my son was in pain, screaming, and needing what comfort I could provide.

Have you been there? On caregiving duty day and night. All day. All night. All week. All month for months on end.

What was expected to be the newborn exhaustion phase has continued and instead of a few weeks has lasted several months or years? Sleep deprived. Your brain is foggy. Your emotions aren’t exactly stable. You’re not sure when you last showered, an uninterrupted bathroom break is a luxury, and sleep? What is that? You’re not the picture of the joyful, intentional mother you always dreamed you’d be and still crave to be.

I don’t know if that’s you, but that’s my story.

It can seem unending. And trying to squeeze in anything else, how do you do that when you’re already on full-time duty 24 hours/day? You know, those other peripheral things like the basic daily care of your husband, other kids, household tasks and reading your Bible.

 You’re just dragging yourself through the day (and night) because while you’re no longer that energetic, “I’ve got this” mom, you are that loving, caregiving mom and you’re doing all you can to make sure your child survives and hopefully gets the help he needs too. Yet, you see all things and people you are neglecting in life and they stack up like a litany of failures of all that you are not doing. Cannot do.

If my story and the feelings of failure and guilt resonate with you and some part of your story and feelings, it’s time to reframe some of those thoughts! You may not be able to change your circumstances, but you can change your thoughts and perspective. 

Over the next two weeks, together we will look at four of those thought patterns that we so often struggle with and how we can reframe them.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and 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.

Moms Of Kids With Special Needs Are Pretty Special

Has having a child with special needs changed how you see the world? It certainly has for me. I was struck by this realization when Jonathan and I were out seeing the sights and doing typical tourist things in Cleveland, OH with some new friends, also parents of kids with special needs. We absorbed history, admired artifacts, meandered through quaint shops, enjoyed delicious foods, and had some fun laughs together. It was a perfect spring day with the sun shining, the pressures of life and home a hundred miles away, and delightful companions to enjoy it with and to get to know.

As a couple of the ladies and I stood waiting outside a shop in the sunshine while the husbands were choosing delicacies in a bakery, the conversation turned to one lady and her necklace. She explained how she saw it in a second hand store, and even though it had some dings, she had loved it immediately. It was made of metal links, that from a normal conversational distance, couldn’t be distinguished from each other they were so small and tightly linked. It was cylindrical in shape, forming sort of a flexible metal tube. There was nothing flashy or especially attention-grabbing about it, but it was lovely against the solid colored background of her red sweater.

Another dear lady I know and love always picks the pumpkins that are lopsided, scarred, or warty to decorate her fall table and doorstep. Because they are the least likely to get picked by anyone else. She favors the homeliest looking dog at the rescue. She always champions the underdog. She too is a mom of an adult child with special needs.

 As the first lady explained that her necklace had dings and dents, but she loved it, I thought, “Isn’t that quality of seeing the beauty in things that others would pass over or reject so characteristic of a mom of a child with special needs.”

 At a certain point on this journey, if we keep learning and growing and working through all the hurt and struggle, we learn to see beauty in the mess of life. We learn that beauty is not what the rest of the world would define as beautiful. We learn that the dents and dings often add more beauty rather than detract from it.

I know someone else who sees that way too.

• “But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.” ~ 1 Corinthians 1:27 (NIV)

• “Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.” ~ Luke 14:21 (NIV)

• “The Lord is close to the brokenhearted and saves those who are crushed in spirit.” ~ Psalm 34:18 (NIV)

God doesn’t reject you because you struggle, doubt, fail, are weak, broken, or guilty. No, just like the loving Father that He is, He bends His knees and crouches low, opens His arms wide and eagerly waits for you to run into them.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and 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.

Healthy Rhythms Part 1: Rest

It feels a little bit vulnerable to write about the importance of Healthy Rhythm to this group. Because let’s be honest, raising a child with any kind of special need does NOT lend itself to that. There are so many things that are unpredictable and our plans change frequently.  Because that is our reality it makes rest so much more important.

Early on in our special needs parenting journey my husband and I were really lucky to be a part of a church that highly valued healthy rhythms of rest, work, and relationship, and so they became priorities for us.

So, let’s dig in and talk a bit about healthy rhythms.

One that is extremely important for all parents, but even more so those of us parenting child with high needs is REST. I define rest as something that brings you life. And that might look extremely different person to person. For me rest is active. I don’t do still well. So getting to go peruse target- kid free, while listening to an audio book feels restful. Or spending some time being creative, whether that is doing a home project, or sewing, that process of creating while might seem like work gives me life.  Now my husband would consider both of those things work. And his rest often looks like getting away to watch whatever NFL game is on with a buddy. Or having literally nothing on the schedule.  

Rest is something that is so vital for us to remain or get into a healthy place, but it feels impossible at times.  So how do we make it happen?  

We have to Plan & Protect it. 

I don’t know about you guys, but nothing LITERALLY NOTHING important gets done unless it is on my calendar. Especially not something that is for me and me alone. No matter how vital something is to me I will push it off to meet the more urgent needs. But if I fail to take care of my needs it leads me to a thin place and then things start to unravel.

 Rest for me started when a friend offered to watch my daughter 1 day a week for a few hours. It meant I had to let go a bit, trusting my friend to take care of my complex (then seizing) kiddo. At first it felt awkward setting aside those four hours to myself every week to not get things done, but to instead bring fresh air to my overwhelmed life. Then it became a habit. It became a time I relied on and resulted in me coming back as a better mom, wife and woman. Over the years it has transitioned to my husband allowing me the time every week and me doing the same for him. But we have to start by planning and protecting it.

God did not design us to work endlessly and then fit in rest at the end if possible. God created man on day six. And then day seven was a rest day. THEN, only after a day of rest Man set to work in the garden. 

How would our lives change if we committed to scheduling a block of rest time- something that is life giving every week and doing it- and then working from our rest instead of resting from our work?

Written by Laurisa Ballew

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: WHEN LIFE DOESN'T GO AS "PLANNED"

Our church recently had a family game night. I was playing Farkle at a table with other ladies. Two who are currently pregnant, one with her first child. Oh, the anticipation! The glittery eyes, the talk of baby things like car seats, strollers, carriers, sippy cups and swings. I loved joining in on the celebration, excitement, and planning for this new precious one’s arrival.

The conversation turned to maternity leave with all the same joy and sparkle of the previous conversation. Six or eight weeks off work and then back to work and baby gets to come along and how wonderful the situation will be so mom can be out and about. 

That triggered me. I’d had the same anticipation when I was pregnant. I’d had similar expectations. But it had turned out so very differently.

Suddenly, I was struggling to participate in the conversation or even stay sitting at the table. I couldn’t rejoice with the anticipation of the soon-to-be-mom anymore. I wanted to try to warn her to be careful with her expectations or at least have a Plan B in case baby isn’t an easy baby. Because, well, you just never know.  

I couldn’t leave the table without it being abrupt, so I tried hard to keep a pleasant, neutral look on my face so I didn’t throw a wet blanket of gloom on everyone at the table and festivities. I don’t know if I succeeded, but conversation continued swirling and my mind went back in time.

I’d been so excited about my baby. I’d planned and prepared. I’d gotten everything ready. I’d been so careful about not taking any over-the-counter medications or eating food that could pose a danger. I researched natural birth. I had a birth plan. Due to our life circumstances at the time, I had an after-hospital plan, a 2-month plan and a first year plan. And of course, expectations for the rest of my newest little love’s childhood and life. 

But, things don’t always go as planned. You know that or you wouldn’t be reading this. Sometimes plans gone awry are a little hiccup, no big deal. Sometimes, life will never ever be the same.

During the first few years I fought it with everything in me. In the last few years I have come to accept it – whatever “it” looks like – progress or regressions. The unknowns of the future. I grieved the child and life I expected but will never have and came to accept our new normal. Not to say that daily life is easy. But I’ve accepted our reality and am content in my life.

Let me be clear – I delight in my child and who he is, but accepting all the challenges that came with him, the struggle that he (and we) live with daily, and the total upending to our entire life expectations is what was difficult.

Then there was game night and an excited new mom-to-be. As I sat down to write this blog post and traveled back to where she is now, I found tears rolling down my cheeks and sobs escaping my throat. I guess I’m still grieving the loss of that dream, of what never was and what never will be. It’s been so long since I’ve gone there and remembered that I ever had a different dream than what I’m living right now.

Chronic grief. It can be all consuming when you’re in the worst of it or can hit at any moment, unexpectedly. It’s okay. It doesn’t mean you don’t love your child with all your heart. It means that you lost something that was dear to you. Cry, sob, acknowledge it, name it - grief. Then dry those tears and go hug the child you do have and love dearly.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that comes alongside the parents of children with additional needs on spiritual and emotional level. You can follow Hope Anew on Facebook here.