Experiencing Joy

This is the day the Lord has made, let us rejoice and be glad in it. (Psalm 118:24 NLT)

Today, yes today my soul is filled with joy.

And although I wish I could say that is my normal, I have to admit there have been many days that I have wasted the gift of the present day by fretting about the future. Oh, today though, I stopped and breathed in the experience of being present in the moment and discovered a bounty of blessings all around me. I was met with gladness, with pure joy that overflowed in my heart… you know the type of joy that makes you just want to get up and dance and skip around the room…yes that type of joy!

It was not an elaborate vacation or hiking in a flowering field, that brought such joy. No, it was sitting in the stands of my son’s Special Olympics track and field event.

The world seemed to have stopped as I took in the scene of over 100 athletes who all had challenges but not one single individual showed the struggle or the pain on their faces. I watched athlete after athlete, my son included, crossing the finish line with smiles and shouts of joy at their accomplishment. Here were individuals that had to persevere through so much to just make it to the event not to mention the physical or sensory obstacles that stood between them and the finish line. It did not matter if they came in first or last, their focus was locked on the finish line. I saw athletes stop running to go to another athlete’s side who had fallen, I saw athletes walking with what looked to be a debilitating limb, I saw athletes in wheelchairs powering through with their hands… all with one goal in mind, to finish!

I leaned further and further into the moment. I embraced the present and I saw modeled right in front of me how to receive the day as the Lord intended and I watched what it meant to be truly glad in it. And at that moment, I heard a whisper in my spirit say “Child, every day can be like this when you receive the day as a gift from Me and focus only on being present in it!” I breathed in again absorbing the lesson my Savior was teaching me at this moment . A lesson on how he longed for me to receive the gift of the day from Him and embrace it with gladness.

But some days are really hard on this earth, aren’t they? Some days the pain of broken relationships, or of illness, or of job loss, or of loss of life can take us down and steal our joy. But our Lord declares even those days, He has made! For me embracing this truth meant I needed to move the truth out of my head and into my heart. Such a journey would allow me to say through the pain, that there is gladness in my heart and rejoicing in my spirit even on such hard days.

As I sat and watch men and women with such gladness pushing through so many obstacles, tears of understanding of what it looks like to rejoice and be glad came to my eyes. And my soul was being transformed to see with the eyes of my heart. At that moment, sitting there on those stands, I was taking a profound lesson on joy.

So let me ask you a question, are you sitting with joy in your heart today? If not, what is holding you back from accepting the gift of the day and truly being glad in it? If you are struggling to find joy through the pain, then would you consider inviting God into your doubt, your hurt, and your fears? Come to Him authentically and let your heart be molded to His likeness so that you can receive every day (even the painful ones) as a gift from Him and experience joy!

Written by Carrie Park

From Carrie’s heart…

By God’s grace, my heart was taken captive by Him and I was brought to my knees as an adult acknowledging my need for my Savior.  God has filled my life as a wife, a mother of five, and as a leader of people. And through this journey, I have discovered a passion of mine to reach, encourage, and inspire others to live a thriving life with our Savior, Jesus Christ. 

​So come, grab a cup of tea settle in and find encouragement from Carrie’s blog Abiding in the Between here.

R.E.S.T.

Being a parent often seems like there is never enough time, and often we shortchange ourselves on rest to compensate. Sometimes I thrive on all the hustle and bustle, and other times I feel as though I’m on a speeding train I’d love to make an immediate departure from. The worst part is that sometimes I’m unable to distinguish between the two, propelling me into confusion.  My wife Naomi knows too well, but after I’ve given my best to work and the kids, there isn’t much left for her.  That isn’t fair, or honoring our sacred relationship.  What am I robbing myself of when I deprive myself of rest in all its forms?

Rest.  This is an elusive and mystical word to a parent of young kids, which often makes me think;  “one day I’ll have time for that”  or  “I’ll rest when I’m dead.”  Neither of these views help me give my best to my family.  But I often fall into the trap of pushing myself, keeping busy and just getting the things done that Dad’s need to do.  Do I wear it as a badge of honor?  Possibly, and that is not healthy nor productive. That view is selfish and does nothing to glorify God.  When I can’t be my true (and rested) self, I am robbing the world of the joy God has placed in my heart.  Even if you're SuperMom or SuperDad, be honest, you can’t fake it but for so long.

But I got responsibilities man! Your quick schemes won’t work for me! Yes, it’s a challenge to find rest, or is it?  I think it’s important to remember that Grace through Jesus comes through Him, not through our deeds.  Deeds keep us busy, and we often give too much credit to our works. We spiral into an endless cycle of “doing” in order to prove our worth, and this isn’t just a spiritually manifested issue. 

I can’t give you a definition of what rest looks like, because everyone’s needs are different. But lately I’ve been thinking of an acronym that helps me, and may help you determine how you can weave rest into your schedule, however brief.  Here are my guidelines for R.E.S.T.

Recurring - Make it intentional, and on a schedule that works for you.  Even if it’s locking yourself in the bathroom to escape for 5 minutes (and yes, we have all done it).  Don’t let those little fingers under the door distract you, they will surely survive, as their only aim at that moment is to pull your attention. Setting yourself  boundaries will help you carve out some time.  Isn’t it strange how boundaries can make us more free?  Understanding this has always been a challenge, because as the parent you are always the enforcer.  In my daily rhythm, I try to catch myself “scrolling” and jolt myself into stealing my time back. We all find ourselves scrolling social media, so this is the perfect time to reclaim that few minutes as your own.  I also find that if I wake up before my kids, it’s hard for them to interrupt me during that time.  It’s the absolutely most perfect time of the day, since I tend to be a morning person.

Enjoy - The act of resting should recharge you, which means it should be a departure from your normal routine.  Shock your system by doing something you enjoy, which is something you have probably deprived yourself of as a busy parent.  You will be surprised how even a small burst will recharge your battery. This is a deeply personal choice, dig deep for something God has uniquely placed in your heart. 

Solitary - I’m a social person, so this one is sometimes a struggle for me.  But I find with the constant draw for my attention by my kids, the best rest for me in my current phase of life is often in solitude. It gives me a chance to reflect, which leads to the last and most important part.

Thankful - When you take time away, always do so with a thankful attitude.  You shouldn’t shame yourself while you are taking time away, that will always be self defeating.  The idea of rest (in the form of a sabbath) is deeply Biblical. You can choose to explore any of the scriptures around this topic, but I always fall back on the creation story. If God decided to take a rest, then it’s perfectly fine for you to do so as well! 

As you go about your day, I challenge you to implement these ideas.  Did you notice that it costs nothing?  And that it has no constraints on what you should do, or how long it should take?  You may need to enlist some help for you to carve out a small block of time, this is also perfectly acceptable. It is a process, just make sure that you protect what works for you. Take heart in this, and work on giving a slightly better version of yourself to the world. We are called to let our light shine, so do so with a restful heart.  

Written by Jesse Brubaker

A 19 Year Old Revelation

I've been a parent of a child with Special Needs for almost 19 years, and I just had a revelation.  I recently realized that even though I thought I had it "all together", I really don't.  I have some scars that are almost 19 years old and I'm just now learning how they impact my life and my mental health.  

This revelation was uncovered recently during a conversation with my therapist.  I started seeing a therapist because of some external adversity that I've had to deal with for the last couple of years.  This external challenge was amplifying my anxiety and panic disorder, and my husband and I thought that therapy would be helpful.  This past session we started really diving into things that cause me anxiety. She had me think about the times I feel anxious and what causes my panic attacks.  While panic is often stirred by an immediate crisis, my anxiety can rise at anytime. It’s something I can not run from most days. (Note:  Anxiety and panic disorder could be a whole separate blog post. I'm not addressing that here, but you should know that this is more common than you may believe, and professional help can make a difference.)  

My therapist has spent time getting to know me and what parts of my life have been difficult.  In my last session, I began telling her about Ben.  I told her about his birth and the way I felt the months afterward, how I responded to his diagnosis and  how I respond to him now.  As I talked I could feel my anxiety rise.  I began to have heart palpitations, stomach ache, dizziness, shakiness, tears and shortness of breath.

After she helped me calm down and relax, she made a pretty stunning observation.  She said "I believe Benjamin is the cause of your permanent anxiety.  You have PTSD and I think you are still dealing with the grief this has caused in your life.”

I was shocked.  I am thankful for him and I clearly recognize how he has blessed my life and others.  I feel equipped to help other special needs parents deal with a new diagnosis.  I even write about all the ways that Ben has expanded my life.  But, my therapist thinks that I have unresolved issues?  How could this be? 

In January of 2002 the diagnosis for Ben was determined about a week after he was born.  As I look back I see how my anxiety grew to an entirely new level: I could not sleep, I could not stop crying, and I could not stop Googling. I had to find answers to how to help. I remember every day living with a tightness in my chest, not wanting to see friends or even get out of bed. Always exhausted, completely lost, and totally overwhelmed. There was lots and lots of crying. I had anger at God. I had at anger at Ben. It felt as if the world was closing in around me. There were times I felt as if I couldn’t breathe, and thinking straight seemed impossible. 

As the months past, I began to understand more about Down Syndrome. I began to meet people who had children with Down Syndrome older than Ben and I thought I was gaining some solid ground against my anxiety. Ben was making progress in  therapy, and was incredibly healthy for a child with Down Syndrome, but with that came the overwhelming realization that we are in this for the long haul. His disability is a long term diagnosis. 

Now as I sat in the therapy it began to make sense. I have a special needs son.  A son who makes me question my parenting, one who will need help to live alone, a son who will never truly leave the nest. He has trouble articulating his feelings at times. He needs help with some daily living tasks. I find myself thinking of ways to help him become more independent but immediately feel like a failure when I am not consistent. I constantly clench my teeth, at times my chest feels as if an elephant were standing on it, and my heart hurts at times for my son who I know has a long life battling odds. I feel like I live  in a constant state of “waiting for the other shoe to drop” and can at times  feel the emotional spiral. 

 I know many special needs parents struggle with anxiety. Learning that my anxiety is essentially post-traumatic stress disorder is helpful.  I know that it’s relentless and traumatic in nature.  But, I know where it comes from now.  This awareness will also help me manage my anxiety.  I know that I can "fix” some things for him, but I can't address it all.  

Being a parent of an individual with special needs feels like you have to give the absolute best of yourself every single day.  We want to do the best for our children and be "on top of our game".  But, we also have to recognize where we need support.  I have a great therapist now.  I have also joined Facebook groups to find parents who “walk my walk”.   I can find answers in these circles with comfort and no judgement. I have a “tribe” of friends who love me and are there for me when days are tough. I have a church who loves me and more importantly love and include Ben. I am praying over time I‘ll get closer to “fixing” my anxiety the best way I know how. 

As parents, we tend to give our all to our children. However, if anxiety is standing in the way of the best version of you, it is imperative for you to remember to take care of yourself and to develop coping strategies. You are important. Your anxiety is real. Everyone needs some help at times.  Make sure to ask for help and be willing to accept it. 

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. 

A Good Habit To Break

I overheard a teen at the check out counter the other day use the word "retarded." He wasn't talking about someone but something that was "retarded." Believe it or not, I hear it fairly frequently.  When I do, I try to be polite and let it roll off my back. I'd even say it doesn't rank high in my list of pet peeves since most people don't even think about what it really means.  

The R-word is an expression used for retard or retarded, words considered offensive and disrespectful when used to describe people with intellectual disabilities.  It is also used to insult people, places, and things.  The verb "retard" means to hinder or to make something slow. "Mental retardation" was introduced as a medical term for people with intellectual disabilities , replacing terms that were considered to be more offensive.

Over time, the word "retard" came to be used as an insult, tossed around the playground as a synonym for "stupid" or "dumb." It is not a respectful way to refer to individuals with any kind of disability.

We often fail to understand how words can hurt until they become personal. Right now our country is in a war of words. Books have been written to teach us how to use politically correct words for race, religion, and politics. 

While 'disability awareness' isn't trending like some other topics, I hope you're willing to think about this population for a moment today. 

Here are a few thoughts from a mom of a kid with special needs:

1. Stereotypes are crippling. It affects how the world views my son. He is not dumb or stupid, just a person with  genes ordered differently that you or I.

2. I wish that Ben's siblings never had to hear that word.  I don't want them to think of their brother as "less than" in any way.  He is much more than his intellectual capability.  

3. I'm not trying to censor anyone's language, or be politically correct. I just want to use words that provide appropriate consideration, dignity, and respect for people with disabilities.

4. I'm also not trying to shame anyone.  I've used "stupid" or "dumb" in the wrong way before having Ben.  But, having Ben has taught me that the value of a person is not found in their cognitive abilities. 

5. It's never too late. Maybe you only use the word occasionally or maybe it's a habit. But it's never too late to stop. Here's a way I can help you.

Every time you are about to say the R word... please think about the people you are hurting when you you throw around such a useless word.  There may be someone within earshot that has a friend, sibling or child with a disability.  Consider if their loved one should be reduced to "dumb" or "stupid".  

Also, think about the value that those with disabilities bring into the world.  For example, my kid brings more laughter and happiness to my life than I could ever imagine.  He takes life in stride and could teach us all to not take things so seriously.  Rather than being "dumb", it's almost like he is a genius at teaching joy.

He has compassion. He feels and loves big.  And when you love big, you can also feel hurt deeply.  He hurts not just for himself but for the ones who are hurting around him.  He has a Master's degree in compassion.

He has accomplished many things. He plays soccer, baseball, runs track, and was manager of the Middle School basketball team, High School baseball and football team. 

He is daily teaching me about loving, laughing, patience and working hard.

So the next time you think about using the "r" word just think about him!

It is really a good habit to break and worth it to us!

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. 

To My First Born Son On His 18th Birthday

18 years.

18 years filled with laughter and love and sometimes heartache and tears. 18 years of watching every milestone and “checking it off” – feeling like we accomplished something. 18 years of watching some milestones pass by and realizing we still haven’t met them and dealing with the grief that these are the milestones that you may never meet.

But as I write, I realize you have risen above my expectations I had for you and I know you will continue to. It’s because even though there are many things we may have ahead to learn there are things you have taught me and others.

…you have taught me God’s sovereignty. From the moment I held you I knew He had a plan for your life. When we found out about the Down Syndrome, I didn’t understand why God had chosen this path for you or me. As the dust settled and the tears dried there was one passage I clung to. The passage is in John 9 when Jesus heals a blind man. Although I knew that “healing” was not the answer for a genetic condition. This scripture helped me find an answer for why God chose this path. Jesus’ answer is in verse 3. Jesus’ followers were baffled. Why was this boy born blind? Obviously someone sinned . But Jesus responds “he was born blind so that he could be used to show what great things God can do.” Now 18 years later I am able to see so many of these great things. I have learned it’s not my fault or that I’m being punished . These verses remind me that your disability is anything but that. The plan God had all along for you is a gift so that you can display the works of God through your life and your unprejudiced mind and heart.

… you have taught me patience. Every step of this journey together has been slow, every milestone, every word, every year of school, every IEP – a lesson in learning to be patient in God’s timing. While I’ve spent days, months and years waiting for each step, It causes me to think how patient God is with me. So many times it takes me so long to learn things that I’m sure God feels like he has tried to teach a million times over. You are my visible reminder that God brings beautiful blessings in His time if we just wait.

…you have taught me to laugh. You are silly. Always trying to make me laugh. And always laughing. You can make anyone laugh and you know how to laugh at yourself. And when I start to take life too seriously you are there to help remind me that life is too short not to laugh a little.

…you have taught me to see things through different eyes. To catch a glimpse of what really matters most. Not the little events of life but the way these events affect our soul and others. Your concern when others are sick, or sad. The way you never want to make anyone mad. The way you put others first. I often wonder what the world would be like if we all saw others through your eyes.

…you have taught me unconditional love. You give and accept love from others with no conditions. You share love so easily and I’ve seen you hurt because of the way you love someone or something so hard. Your heart is so big and filled with so much love for the people you know. You have taught me that loving is not about what we want others to be but about loving them as they are. It’s about loving me when I have a short temper or snap at you. It’s loving like Christ … not because of anything I could do but loving because that’s what you are.

I’m reminded of the old hymn, “Come Thou Fount,” it speaks in the second stanza of raising an Ebenezer. Strange language isn’t it? The prophet Samuel set up a stone after the LORD helped Israel win a great victory. This was not without repentance and seeking the LORD on Israel’s part. They had to put away their false gods and pray. The stone, named Ebenezer, commemorated that victory, for “Thus far the LORD has helped us” Whenever the Israelites would pass by the stone, they would remember what they were capable of, and how the LORD acted on their behalf.

So you my son are my true Ebenezer. You are the physical reminder of God’s faithfulness and goodness. In 18 years you have taught me all these lessons and more. You remind me daily what the Lord is capable of doing. And you show me daily that God has and is still continuing to teach me more about Himself through you.

So HAPPY 18TH BIRTHDAY Bub. You are so loved!

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.