Wednesday, September 30, 2015

A "Smooth Transition" from Cancer to Panic Attacks


As we say good-bye to September (Childhood Cancer Awareness Month) and enter into the 25th Anniversary of National Mental Illness Awareness Week (October 4th-10th), I can't think of a better way for me to encourage others than to share about my anxiety disorder and how it took it's toll during my daughter's battle with cancer.

I've always been an anxious person, ever since I was even quite young.  
I was afraid to sleepover at the houses of friends, I was terrified of bugs to the point of turning my clothes inside out before putting them on to make sure no bugs were taking up residence in a pant leg or sleeve, and I was fairly certain that I had contracted every illness that I saw portrayed on TV or in film.  
My poor mom and dad spent many nights with me as I would wake to "see" bugs crawling on my ceiling, or I'd feel my stomach burning and I was afraid that the acid was eating away its lining.

With that all in mind, I'm sure you can imagine how convinced I am of God's sense of humor when He gave ME a child with a rare disease.  Not JUST a disease, but a RARE disease.  


Really, God?  Now THAT'S a good one.  

My daughter's rare disease comes with a 50% chance of developing Wilms Tumor (a malignant solid tumor kidney cancer).  Now the hypochondriac has a child with a statistically significant chance of developing cancer!  


Wow, God...you really are going to show your strength in my weaknesses...because you are hitting me right in the most vulnerable places!

At 15 months old, the tumors showed up.  It was fall of 2005, and we were headed into battle with our infant. 
We had a tremendous amount of support, prayers, and incredible doctors and health care providers to help us through...but that didn't mean that it didn't feel like Hell on Earth.
One weekend, some girlfriends and I took a short retreat to do some Christmas crafting. I was suffering from a cycle of relentless migraines, which wasn't unusual and totally expected at that time in our lives.  I was taking a combination of migraine prescription medications along with OTC medications to try to combat the debilitating pain.

As it happened, we girls went to see the movie Narnia:  The Lion, The Witch and the Wardrobe.  We were seated in the theater and the previews began.  The first preview was for the movie Cars.  
The engines were roaring and tires were screeching.  My heart began to pound in my chest.  I felt my entire body going into a frenzy as the preview grew louder and the theater grew darker.
The opening scene of Narnia included the drone of an air raid siren and the distant rumbling booms of bombs being dropped.  
My chest felt as though it were taking the blows of those bombs...it felt like it was weighed down by steel.  I couldn't breathe.  I knew something was wrong and I needed help.
I pulled my sister out of the theater and into the hall with me.  I was taking shallow, rapid breaths and telling her that I needed help, I didn't feel safe.  I wanted her to call an ambulance.  She was able, after several attempts, to calm me down and to get me to realize that I was safe; that I was just hyperventilating.  She retrieved my other girlfriends out of the theater and we went back to the hotel we where we were staying for the weekend.  

Once back in the hotel, I got slammed with another migraine and still felt like there were a dozen other things wrong with me.  I called a nurse hot-line through my insurance and spoke to the nurse on-call about my migraines and the medications I was taking and the symptoms I was experiencing.  She was fairly certain that I was dehydrated and experiencing the effects of that. 

"Is there anything else going on in your life right now?"  She asked.
"Well, my 16 month old daughter has cancer..."
Short silence...
"Your daughter has cancer?  Are you seeing anyone about this...a counselor?"
"No, I don't have time to see anyone...my DAUGHTER has CANCER.  How am I supposed to find time to see someone when I'm still working full-time and also caring for my daughter?"
"You NEED to see someone.  Please, promise me you will call your primary physician on Monday and you will set up an appointment to get your migraines and medications evaluated.  Then, ask her for a referral to a counselor." 
So, I did...I did just that.  Because I couldn't survive...not with all the support, faith, prayers, and help in the world.  I needed counseling and I needed different medications to help my body and my brain process what was happening in our life. 
I am NOT ashamed of suffering from an anxiety disorder...NOT ashamed of experiencing panic attacks...NOT ashamed of seeing a counselor.  These experiences have helped to shape me into the beautifully broken person that God intends me to be.  They have brought me closer to God in that they show His strength in MY weakness.  These experiences have made me more empathetic to those around me who are struggling...they have opened my eyes to how paralyzing mental illness can be and that it can happen to anyone.
Did you know that there is a National Day of Prayer for Mental Illness coming up on November 6, 2015?  You can download a toolkit for that day, and find other ways to engage your faith communities on the NAMI website.  Also, be sure to show your support by taking the stigmafree pledge!  With one in five adults in America experiencing mental illness, we can't afford to be silent.  Jesus has commanded us to love one another; and that includes those suffering from mental illness as well.  We cannot allow those who suffer to feel alienated or ashamed.  There's no room for that in God's Church.

Pray:  Heavenly Father, I know that I may be one day away from my own panic attack or diagnosis.  I trust that you are sovereign; that you are in control, and that I have no reason to be ashamed of a family member, a friend, or myself for suffering from mental illness.  YOU have told us that you'll remain close to the broken-hearted, and that includes those experiencing mental illnesses.   Father God, in our weakness you are strong.  And, if I am scared, or if I DO let the stigma of mental illness cloud my opinion of someone, I ask you to have the Holy Spirit reprimand me and show me my fault.  In your gracious and holy name I pray...Amen.

Tuesday, September 29, 2015

IT'S AN ADHD WORLD: Part 1 - Do I Have Your Attention?

Then she called the name of the Lord who spoke to her, “You are [a]God Who Sees”; for she said, “Have I not even here [in the wilderness] remained alive after [b]seeing Him [who sees me with understanding and compassion]?”
Genesis 16:13, AMP

Admit it.  We live in an ADHD world.

Never before in history have humans been so tempted to mentally flit from one thing to the next.  With information crowding and flying past us at the speed of light, we barely have time to focus or digest an item before it is forcibly shoved out by the next.  The 24-hour news cycle has been a huge menace, driving this pace of life.  We are outraged by a social injustice until our attention drifts to the news of another.  We would barely remember there was a murder down the street a year ago if our addled, over-filled brains weren't reminded by the interruption of apps like Timehop.  

Yet, isn't attention what we all want?  

Sometimes the biggest heartache we can endure is the one of feeling invisible, ignored, isolated.  Few people know that pain like we families living with special needs or complex health challenges.  There's that desire to be seen, to be included in all of the wonderful things in life that every other person enjoys.  Additionally, there is that desire for compassion, understanding, for the world to see and care when we are suffering.  Nevertheless, the majority of the time we are hearing the heavy ache of silence, life seemingly passing us by, and marginalization when we crave the smallest amount of attention.

Hagar, the slave of Abram's wife, Sarai, knew the value of attention.  When God sent His angel to meet her, comfort her, and instruct her in the desert, she realized that attention demonstrates:

  • That we matter
  • That this is where understanding begins
  • That we are part of something bigger than just ourselves
  • That we have intrinsic value


So how do we gain the attention every human values in an overly-distracted world, while not becoming overly needy?  Here are some thoughts:
  1. To GET attention, GIVE attention -- It may seem overly simplistic, but as with so many other things in life, we reap what we sow.  Especially in light of the cultural challenges we all currently face, people are naturally drawn to those who people who show a genuine interest in them.  When we affirm others by giving them the gift of our attention, they typically want to reciprocate.
  2. Be fully present -- Along those same lines, step away from the tablet, and put down the smart phone.  We cannot give others our undivided attention when we are continually distracted by texts, e-mails, instant messaging, social media, and electronic games.  Neither can we be aware that someone is OFFERING us their complete consideration when we are distracted. 
  3. Model it to our children -- Given the fact that our children weren't raised in a generation that just went outside and played for hours and hours, they have a much greater challenge with this issue.  While we can become depleted and desire mental space from our kids, it becomes way too easy to push them away by ignoring them.  Demonstrate active listening to your child by making eye contact when they are speaking to you, responding to what they are saying, and putting down the electronics.  The best place for our kids to receive affirmation and validation starts at home.  They cannot receive and pass on those positive attributes if they have not learned them from their parents.
  4. Speak words of value -- Don't waste a minute of the precious time you receive from others.  Be impactful by speaking life into others.  People dread being around a "Negative Nancy," so be mindful of who you are able to be real and raw with.  For the others, it is okay to share your difficult realities, but be certain to include with those thoughts how crisis is positively impacting you.  Let God's glory be reflected in your conversation, in spite of your circumstance.  THAT truly makes people sit up and take notice!
  5. Build awareness -- While we are not always up to the task, educating others is critical when we are able.  The apathy and disengagement from others can truly be born of ignorance.  The typical world does not know the ins and outs of what we live with every day, so how can we expect their compassion and attentiveness?  When I share with people the fact that our son needs to learn to administer his own intravenous clotting factor every-other-day or that his medication costs nearly $200,000 per year, it makes them stand up and take notice.  After a number of years, however, they can even tune that out.  (Remember?  It's an ADHD world!)  I continue to build awareness by sharing with people how the learning curve is going (difficult), and exactly what that looks like (experiencing the dangerous natural consequences of neglecting treatment).  When they see us press on in spite of things that would emotionally paralyze the average person, they learn that God IS a reliable force in all of life's most challenging storms.
Hagar was fortified in matchless ways when she knew that she had been seen and heard by her Almighty Creator.  The difficulties she would face didn't end with her pregnant flight into the desert to escape cruel Sarai.  Even so, she endured because she was refreshed by learning there was Someone attentive to her plight and problems.

I will have much more to say in the weeks ahead about living in this ADHD world of ours.  For now, however, let us all commit to giving people our undivided attention, so that we can foster the renewal of a culture where we are fully present to one another again.

PRAY:  Lifter of our heads, keep our focus where it belongs -- on You and Your people.  As Your ambassadors, let us  affirm the value of each and every person we encounter by offering them the same kind of attention we would like to receive.


~ Barb Dittrich

Footnotes:

  1. Genesis 16:13 Heb El roi; God never sleeps, He sees, He is aware, He is the great Omnipresent God.
  2. Genesis 16:13 Or seen the back of Him who sees me, which would suggest that at some point in their conversation Hagar requested to see the divine Angel (see note v 7) and, as in Moses’ encounter with God (Ex 33:18-23), was granted the privilege of seeing His back. The wording of the Hebrew is not clear enough to further narrow the possibilities.

Monday, September 28, 2015

Caregiver Confidential

"Answer my prayers, O Lord,
for your unfailing love is wonderful.
Take care of me,
    for your mercy is so plentiful." (Psalm 69:16)


My wife's voice was soft and quiet. You could hear the weariness and desperation in her words.

 “I don't always know how to ask for help.”

Seventeen long years as the mother of a child with profound special needs requiring around the clock care takes a toll.

And now, I lay in the ICU with a life threatening illness and facing a long recovery.

She is beyond exhausted, and teetering on being overwhelmed by it all.

She is torn between her son’s constant needs, and her husband's. She has no time or energy for her own needs. Don’t tell her she needs to do something for herself, that is no help to her. She is simply in survival mode. The two most important people in her life require her constant attention, often at the same time.

She feels trapped in her situation, while outside, life marches on for typical families. She would be lying if she said it didn’t make her jealous, envious, and sometimes resentful.

Only other caregivers can truly grasp and comprehend the harsh realities of a caregiver. I asked her to share what she experienced and what had she learned.

Here are her thoughts. 

  1. Compassion fatigue is very real and very draining. Compassion fatigue takes a toll emotionally, relationally, spiritually, and physically.
  2. A little appreciation goes a long way. Simple acts of kindness and thoughtfulness carry a significant blessing to a caregiver. 
  3. Telling her she needs to do something for herself does not help,  it just puts more pressure on her.
  4. Caregivers don't always know how to ask for help. Or even what to ask for.
  5. Caregivers have to fight to avoid being jealous of others whose lives go on seemingly without challenges.
  6. The ones she thought would be there to help were not. But others she did not expect to help were there for her. She learned a lot about the essence of true friendship. But God is also using this experience to teach and reveal so many things to her. Even in the midst of the storm, he sees her.


She has learned what it means to be a true friend, and how even a small gesture of help has a huge emotional return. It makes her lament times in the past where she perhaps could have been a better friend, and makes her more determined to be there for her own friends in the future.

She is more perceptive and attentive to the little “God moments” that happen every day in our lives that we often take for granted or fail to appreciate. She has seen that God will send people, thoughts, and moments into your life all through out the storm to remind you of his presence and his provision.

Finally, she longs more than ever for the promise of heaven. For no more tears, no more pain, no more sorrow, and no more sickness and illness. She longs for Jesus to, as he says in his own words, "make all things new."

She longs for the day we can all go home.

"I heard a loud shout from the throne, saying, “Look, God’s home is now among his people! He will live with them, and they will be his people. God himself will be with them.[a]He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.” (Revelation 21:3-4)

 PRAY: "Father give us eyes to see when others need the same mercy and grace from us that we receive from you. And teach us to love as you first loved us."

--Jeff Davidson

Saturday, September 26, 2015

"Are You Serious?" Awards - Volume LXVI: The Why We Must Not Be Quiet Edition


The stories shared here each weekend have a way of creating a visceral response in the readers.  Too many of them are heartbreaking, leaving us concerned about the well-being of those we love and wondering about the character of our culture.

It is a natural response to want to cover our eyes and ears to such stories, or at the very least, to turn the other way, tuning them out.

Yet, here are two examples of why we MUST NOT be quiet...

Our first story harkens to January of 2014.  A 17 month old boy born with Down Syndrome was murdered by poisoning him with hand sanitizer.  The perpetrator?  His own mother.  It turns out this poor boy had been previously poisoned by his mother with perfume in 2012.

Are You SERIOUS?!  
Image courtesy of nixxphotography via freedigitalphotos.net
Just this week, the mother pleaded guilty to manslaughter in her son's death.  She was sentenced to 40 years in jail.  Her claim was that she merely wanted to end her son's suffering.  

Our second story takes place this week in the Chicago public schools.  The mother of a non-verbal 5 year old with epilepsy arrived at her son's classroom and found him dressed in a garbage bag "poncho," seated apart from the other children in his class.  When she challenged the teacher, she was told that the teacher was concerned the boy might get sick from a shirt wet with drool.  Despite the fact that the mother sent the boy to school with both bibs and a change of clothes, she learned the next day that he was once again dressed in a garbage bag, completely disregarding her original complaint.

Are You SERIOUS?!
Photo image courtesy of WGN-TV
This child's case has not only been made known to the principal, it is now under investigation by CPS.

There are two common threads in both of these stories that lead to such repugnant depravity:

  1. Ignorance
  2. A lack of value for life
THESE are the things that compel us to shun the notion of being silent at times where we would rather look away.  Until people gain a better understanding that a life with special needs is a wonderful, albeit different, life; until people increase in compassion; until humans recognize that they are all just one emergency room visit away from having a family with a disabled member; until educators, doctors, neighbors, insurance companies, and government workers all come to embrace the notion that every life is worthy of dignity and respect, WE MUST NOT BE QUIET.  

God's call on our lives is to shine His light in the darkness.  His glory is on magnificent display through the lives of our complex kids.  It is our duty to build awareness, opening the eyes of others to a more accurate view of our remarkable children.

This means that we step up to be a voice for the voiceless, decrying injustice, and proclaiming the infinite worth of our sons and daughters............  Even when we would rather tune it all out and  turn the other way.   

~ Barb Dittrich


Resources:

Friday, September 25, 2015

Rehearsing Life

“When they came together....they rehearsed all that God had done and how He had opened the door of faith."
 Acts 14:27  KJV




One of the first keys to helping Bethany succeed was "rehearsing".  You know- repeating, reiterating, review, study, and doing a new skill or word over and over and over. :)
bethany spelling
Bethany rehearsing her spelling words via microphone :)


Learning became easy when I realized all I had to do was be patient- teach and repeat.  A lot.  

But rehearsing facts and playing out situations have opened the doors of learning for Bethany- and still does to this day.

We've learned this not only in "home school", but in her dance classes, and piano lessons.  



There is a most exciting new adventure is coming up! She got a small dancing part in The Wizard of Oz at her Middle School.  Oh, the twinkle in her eye as she proudly invites everyone to come see "her" play.  LOL 

 
She has a lot of after school practices to rehearse with her play mates.  We even had to sign a contract for her attendance because her teacher knows from experience- rehearsing brings success.


I've found this principle especially true in my faith life.


When I  declare, repeat, meditate, practice, do over and over; when I rehearse God's Word daily- I'm primed to succeed and overcome life's challenges!



"Rehearsing" God's truths brings confidence, an excitement, an assurance, a unity, and it opens the door to faith.  Because faith comes by "hearing" and hearing comes by the Word of God!  (Romans 10:17)


Instead of letting my brain or mouth rehearse my problems or the bad parts of my day, I'm learning to intentionally rehearse the goodness of God and become more aware of how He is constantly working in my life.


So whether you have special needs- or not- the world is watching and listening- our life is God's stage to show forth His glory.  We only live once- let's live rehearsing God's good words to us!



Prayer:  Dear Father and Lord of All,  We thank you, you've given us Your precious Word to rehearse Your will and Your wisdom.  Give us a heart that hides Your Word, speaks Your Word, and does Your Word.  In Jesus Name, Amen.


Cindy Barclay

Thursday, September 24, 2015

She Said What??! Three Tips to Help us Respond With Grace


“Be kind and compassionate with one another, forgiving each other, just as in Christ God forgave you.”  
Ephesians 4:32, NIV

Maybe some of your children are like my son, Luke. He has a love affair with water. No matter where he finds it—in pools or puddles—he’s drawn to it. A few years back he got into a neighbor’s pool on two different occasions. Thankfully, it was only up to his waist since he can’t yet swim. The second time it happened the homeowner was not pleased.

“This is getting old,” he said. I apologized and explained that Luke had autism and loved water. 

His response? “You need to get him out of here. I’m sorry he is like that but it’s not my problem.” And the clincher?

“I’m glad my kids and grandkids aren’t like him.”

Man, did that comment hurt. Major ouch.

My guess is that some of you have been there. Not the exact situation, but a hurtful comment was said about your child, teen or adult with a disability.

Recently, I had the opportunity to speak at my home church, First Baptist Church of Geneva, as we launched a breakfast and time of fellowship for moms of those with special needs (called Masterpiece Moms). Besides talking about some common clueless comments, we discussed what we could remember, and do, to respond with grace in these sticky situations.

The first thing to remember is what Jesus went through on the cross for us to be forgiven.  Luke 23:34 tells us that while He was hanging on the cross He said, “Father, forgive them, for they do not know what they are doing.”  What amazing grace and unfathomable forgiveness! This is our motivation to forgive others when they make hurtful comments towards our children with special needs.

Secondly, it helps me when I remember my own assumptions and mistakes, of which there are many!! I didn’t have a clue about the whole special needs world before my son’s diagnosis of autism. That was 8 years ago and sometimes I still do really stupid things. Not long ago I found myself patting the head of a GROWN MAN in a wheelchair.  A grown man!!!! Oy.

Lastly, we need each other as we walk the journey of being special needs parents. That’s why online and in person support groups* are so important! Life gets better when we can laugh and share our hearts together.

Prayer: Lord, thank you so much for your word. Thank you for each other. Help us to find the humor in situations where we would otherwise be stressed out.  We love you, Lord.  Amen.

--By Deb Abbs

*For information on Snappin' Ministries' Side-By-Side Parent Mentor Small Groups, visit our website or e-mail barb@snappin.org.

Wednesday, September 23, 2015

The Balancing Act: Setting Priorities as a Special Parent

Photo Credit, David Niblack, Imagebase.net.

Be very careful, then, how you live—not as unwise but as wise...
Ephesians 5:15 NIV

It’s the challenge of parents everywhere: balancing your needs with those of your children. Only it’s multiplied exponentially when you have a child with special needs. You struggle with the specialist appointments, therapy, and medication regimen, the meltdowns (some of them yours), the lack of sleep (due to kids who don’t sleep and to your own anxiety and stress), counseling appointments (often for multiple family members), and the day-to-day of meal preparation, dishes, helping with homework, laundry, and the myriad other tasks that make up a parent’s day.

And all you really want is to go to the bathroom by yourself, a nap, and copious amounts of caffeine and chocolate.

How do you take care of yourself while balancing the needs of children who require extra care and the needs of their siblings who have special needs of their own because of their sibling’s special needs?

I’ve had to redefine normal. “Normal” is different for every family, and my days don’t include a lot of free time. It’s a fact I used to throw pity parties about, but it is what it is. I can’t get away every week (or even once a month!) for a night out with friends. I don’t have hours on end to spend doing things I enjoy. I still don’t get to go to the bathroom alone very often.

I’ve learned to embrace my normal.

I have a good relationship with my children and get to spend lots of time with them between homeschooling and medical travel. We enjoy lots of heartfelt talks together, which gives me an idea of what they’re thinking and feeling as we enter their preteen and teen years.

I write in spurts during my day, while sitting in waiting rooms, during the few minutes we have before leaving the house for an extracurricular activity, and after my kids have gone to bed. And I’m always, always writing in my head, which makes composing when I sit at the computer faster since I already know what I want to say.

I knit or crochet while watching an episode or two of a favorite show with my kids before they go to bed.

We work together to take care of household chores because working together means we have more time to enjoy other activities.

I take advantage of the occasional parents’ night out or blogging meet-up to get some time just for me, without the kids, but these times are rare.

I stay up way too late after the kids go to bed, carving out coveted “alone” time for my introverted self.

It works for now. I take care of myself the best I can, knowing that in a few short years my children won’t need me as much. Even my “special” child will have some sort of job and might not need much from me other than a ride to and from work and help balancing her checkbook. When that day comes, I’ll have all the “me” time I could ever want to attend conferences, write for uninterrupted hours every day, and sleep, read, and knit to my heart’s content.

For now, I’ll keep balancing everything as best I can, trying to get adequate sleep, healthy foods, and exercise so that I can be the healthy mom, daughter, wife, and friend I need to be for a long time to come.

Pray: Father, thank you for the life you have blessed me with. Help me to use my time wisely each day and to focus on the tasks that are truly important so I'll have the time I need to invest in people, and especially my precious children. Thank you for giving me the grace and strength to face each day and to take each moment as it comes. Amen. 

~ Jennifer A. Janes