Friday, April 17, 2015

A Mockingbird in the Hand of the Lord


“Listen to me, O house of Jacob, all the remnant of the house of Israel, who have been borne by me from before your birth, carried from the womb; even to your old age I am he, and to gray hairs I will carry you. I have made, and I will bear; I will carry and will save.” Isaiah 46:3-4 ESV

“Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me. The LORD will fulfill his purpose for me; your steadfast love, O LORD, endures forever. Do not forsake the work of your hands.” Psalm 138:7-8 ESV

“Mockingbirds don’t do one thing but make music for us to enjoy. They don’t eat up people’s gardens, don’t nest in corncribs, they don’t do one thing but sing their hearts out for us.” Harper Lee, To Kill a Mockingbird

My twelve-year-old and I just finished Harper Lee’s To Kill A Mockingbird.  It was a poignant read amidst the current reports of police brutality and the resultant climate of fear and frustration. I have five black sons, and before the summer is out, I’ll have three teenagers and a young adult. As the debate rages and blame is slung back and forth, this mother’s heart wrestles with the temptation to fear for her boys. Admittedly, I’ve been the overprotective parent—I’ve homeschooled, spread out vaccinations, and avoided gluten and artificial ingredients. I’ve insisted on good diction, perfect manners, pristine attire, clean fingernails. After an incident in Minneapolis, I now discreetly insert myself between my boys and any group of young men that look like trouble. My husband and I have taught them the rules loving black parents share with their children and pray to God they remember when confronted by law enforcement and the adrenaline is flowing: hands where they can be seen, no sudden moves, absolute compliance, no resistance.  

Then, there’s Daniel. Innocent, naïve, and vulnerable, he’s our mockingbird.

Daniel is moderately autistic. At 15, he’s a brilliant musician, and under the tutelage of a patient and skilled piano teacher, we’re coming to see just how gifted he really is. He’s also a fantastic visual artist. His music and artwork are the ways he best interacts with the world. When we came to recognize his artistic bent, we enrolled him in adaptive theater programs and watched him shine on the stage. But attempt to have a conversation with him one-on-one, and he falls near silent, with an averted gaze. He has definite thoughts and opinions, but it takes a gentle voice to coax out a single sentence. Grow angry with him or frighten him, and he’ll literally roar like the dinosaurs that preoccupy his thoughts.  At least once a week, the scenario plays out in my mind—some dangerous situation, someone yelling commands. I’ve got a script ready, and I rehearse it to be sure I can get it out fast enough: He’s autistic, he’s harmless, he can’t answer when you’re shouting! It’s not likely to happen, I know. Yet it is not entirely an irrational fear. Reports abound of those with disabilities facing violence, arrest, even death because they are mistakenly perceived as threats.
 
As a believer, the Word of God reminds me that there are greater realities that must guide my thoughts and override my fears for my son. Isaiah 46:3-4 and Psalm 138:7-8 reveal God’s personal involvement in the lives of his people from the womb to old age. Isaiah gives the intimate image of his carrying his people (whether or not they are aware of him). He says, “I have made, and I will bear.” He will continue a pattern of faithful guidance and defense throughout their lives. He will preserve them not only as a people, but individually. He has individual knowledge of and plans for his people, and so David declares his confidence: “The LORD will fulfill his purpose for me; your steadfast love, O LORD, endures forever.” Throughout the life of the child of God, the hand of the Lord preserves and protects: “Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me.” The purposes of the Lord for each of his children ultimately prevail, and his love culminates in the imperishable inheritance of salvation through his Son, Jesus Christ.

There is no doubt that Daniel faces a challenging future, and there may be real dangers ahead compounded by his disabilities. More real than what is observable in news reports is the hidden truth of God’s intimate involvement in Daniel’s life across his lifespan. “[T]hough God be the God of the close of our life, yet he is also the God of its beginning,” says C.H. Spurgeon. Over the years, as the parent of a child with special needs, I have come to terms with what author, Krista Horning, describes as God’s good design in disability. What I must trust is that his good design works itself out in a God-directed life that serves his purposes even in weakness. I see evidence of God’s grace upon Daniel’s life, particularly in his prayers, and I believe that the Lord is working out his plan of redemption in his life.

For certain, my husband and I will continue to prepare Daniel to better handle stressful and dangerous situations. But more important, we will cover him with prayer, acknowledging that the safest place for him is in the hand of the Lord. We pray for protection, but we must be as vigilant in praying for his salvation and in exposing him to the gospel.  And we, too, must come to rest in what is true: the sovereign goodness of the Lord, his faithful care and love for his children, and his ever-present help in trouble. “[He] will carry and will save.”

Michele Bovell


Thursday, April 16, 2015

Dangers Untold

Photo "Teacher Waking up Dozed Student" courtesy of Stock Images/freedigitalphotos.net
If any of you lacks wisdom, you should ask God, 
who gives generously to all without finding fault, 
and it will be given to you.  
But when you ask, you must believe and not doubt, 
because the one who doubts is like a wave of the sea, 
blown and tossed by the wind.  
James 1:5-6 NIV

When you are the parent of a child with special needs you REALLY have all you can handle as far as paperwork, and research, and reports to read.  I can't tell you how many times I have to go through and shred old reports in  order to make room for more. When I recently had to get the last three years of my daughter's medical records transferred as part of an application for medicaid, it totaled 581 pages.  That was three HEALTHY years...I wonder how much it would have been if we included the year she had cancer???

So, this week, when I, myself, was put on antibiotics for an infection decided "I don't know why" to actually READ the paperwork that came home with me from the pharmacy; I was SHOCKED by what I learned.  

Cipro...my daughter is prone to recurrent bladder infections/UTIs, so we have had experience with this antibiotic in the past.  We have chosen to ask for an alternative because I recall her having a poor reaction as an infant to it.  But, when it was prescribed for me, I thought nothing of it, until now.
Tammie, what does this have to do with God?  
What does this have to do with faith?  
Why are you blogging about this when you're usually writing more spiritual?  

Well, in the book of Proverbs we are told:
  
How much better to get wisdom than gold,
    to get insight rather than silver! 
Proverbs 16:16 NIV
 
So, today, I give you gold!  
 
You see, I had an issue with a tendon in my shoulder early last fall.  I've since had some discomfort at certain times; when I work out, and sometimes when I'm getting dressed-but it has been pretty good.  However, I read in the "adverse reactions" section of my Cipro paperwork from the pharmacy that there has been incidents where Cipro has been linked to tendon issues like tendonitis and Achilles tendon ruptures.  
 
Ummm...say what now?
 
I started thinking back to some of my friends I know who have had certain infections in the recent years and, huh....some of them have ALSO ruptured their Achilles tendon or had a different Achilles tendon "diagnosis."   
 
DID THEY KNOW THERE WAS A CORRELATION?

Not to mention that the paperwork I had also said that the injury can happen MONTHS after Cipro was taken.

Seriously?  Why wasn't I told this directly?  Why wasn't this brought to my attention?  
 
HOW MANY PEOPLE READ THROUGH THE SEVEN PAGES OF PAPERWORK THAT COME WITH THE MEDICATIONS?

Today, I felt moved to TELL others about this.  God placed it on my heart that THIS is something he brought to MY attention because I needed to let others know.  

READ THE FINE PRINT 

I know, we are tired, and we have too much other stuff to read.  But...OH MY GOODNESS...what else goes unsaid?  

How will anyone know the TRUE NUMBERS of incidents of tendon issues after using Cipro if people don't ever KNOW that there MIGHT BE a CORRELATION and they should report their issue?

I'm not claiming that Cipro, or any other medication with possible side effects is horrible.  I'm not arguing that anyone should or should not take this medication.  What I'm saying here is that there are a LOT of things that go unsaid out there in the medical world when we're trying to get our child or ourselves taken care of.  We actually, at times, carry the burden of knowing their medical history better than the specialist who sits in the room with us.  

But if we ASK God for the WISDOM we need to protect our children and be their strongest ADVOCATE, He will be faithful.  He has promised.  

Pray:  Heavenly Father, the medical world is fast, busy, crowded, and intimidating; but you have equipped us for our lives.  With you, and only with you, we will be able to navigate these challenging waters.  Please, grant us the knowledge we need, the wisdom, the discernment, and the foresight to be the best parents, caregivers, and advocates that we can for our children and for ourselves.  Amen.




Wednesday, April 15, 2015

Moving Past our Brain Glitches

  “The Lord our God said to us in Horeb, ‘You have stayed long enough at this mountain."

Deuteronomy 1:6


 I loved my red and white record player when I was a little girl! (some of you are old enough to remember what I'm talking about :) ) I would carefully lift the “arm” that held the needle and place it gently so as not to scratch or create glitches in the record.  

Once there was a glitch, the needle would stick there, destined to repeat over and over until you finally lifted the needle and moved it past the glitch so it could keep moving forward.

One day, the picture of scratches and glitches popped into my head when I was working with Bethany.  There are times- days- when she gets stuck in a thought or a question- and she just sets up camp and lives there.  She keeps repeating and I keep answering but she doesn't seem to be able to move on.

GLITCHES: Repeating things and getting stuck in our thought processes is something that we all can experience. 


Compare the brain in similarity to a record- yes, the old fashioned disc that played music! The grooves are like the synapses and neurons that when the “needle” or electrical impulses play across the grooves correctly- music or the message comes across loud and clear.  There is a physical chain of events that is occurring in the brain of someone with downs syndrome, (or Alzheimer’s, autism, etc.)  
 http://surprisingtreasures.com/wp-content/uploads/2011/06/phonograph-scratches-and-grooves.jpg


Bethany has what I perceive as little glitches or scratches- in her brain pathways.  These scratches stop the message from getting to the brain quickly.

Sometimes, the “needle” just gets stuck and she can’t seem to process past a certain idea or thought.  

It can get on your nerves to have someone asking the same question or not getting off a single thought.  Impatience is replaced by understanding when I realize her brain is "stuck" and she's not doing the "repetition thing" on purpose.


 I’ve finally learned what to do to help her!

I’ve learned to help her jump forward by “lifting the needle.”


So—– I think, “what’s she thinking about? What’s the next logical thing?  How can I help her jump forward in her thinking?” How can I “lift” the needle so she can press on?
  
 

 This approach has been successful and rewarding! I see relief on her face when she can process and move forward.


So I was thinking- is Bethany really that different from me????  

I have glitches- hang ups- ruts-  things I get stuck repeating and can’t seem to get mentally or spiritually past so that I can move forward.  

There are times when we have to realize- God is saying "You have stayed long enough at this mountain."

We need our Heavenly Father to “lift our needle” and move us forward in our thinking and emotions.  He doesn’t want us to be frustrated or stuck, but ever growing and maturing in our spiritual lives.



Our Prayer Today:  Father, I'm so thankful You aren't  irritated, annoyed,  frustrated, disappointed, or angry-  when we get “stuck” in one place.  “Life” can leave some pretty big scratches and grooves. Thank You for gently lifting the “needle” and putting it back down in the next groove so we can move forward to the good things You has planned us!

~ Cindy Barclay

Tuesday, April 14, 2015

Jesus Was Disabled, Too



"Who, being in very nature God, did not consider equality with God something to be used to his own advantage; rather, he made himself nothing by taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself by becoming obedient to death—even death on a cross!"  Phillipians 2:6-8 (NIV)

Since the day it dawned on me, I’ve never been able to look at Jesus the same. 

Jesus was disabled. 


The one and only Messiah, the Son of God, the Anointed One.

We don’t recognize it because we tend to ignore the finer points of His humanity. We don’t stop to think about what he gave up in order to become one of us in physical form.

  • Jesus was and is the Word, who dwelt in Holy Trinity communion before time began.
  • He hovered over the waters of the deep.
  • Everything in creation was made by Him and for Him and through Him.
  • He is the Ancient of Days, the Holy God, the Almighty One.

There is no limit to who He is or what He can do.

He is infinitely able. And yet He limited Himself, by choice, in the most extreme way. 

He agreed to become “dis-abled” out of His love for mankind, His love for you and me and his heart’s desire to win us back at all costs.

C.S. Lewis says it this way:

"The Eternal being who knows everything and who created the whole universe, became not only a man, but (before that) a baby, and before that a fetus inside a woman’s body. If you want to get the hang of it, think how you would like to become a slug or a crab." 

Let it sink in for a moment.

Jesus was disabled.

And He took that role on purpose.
  • Born as a helpless infant, completely dependent upon a couple of small-town teenagers, in the filthiest of places.
  • Raised in a dusty, dirty world, soiling his hands with manual labor and feeling the scorch of the hot desert sun.
  • Knowing hunger and thirst and pain and sickness and sadness and betrayal.

And then on his final day, beaten cruelly, his body so disfigured that he was unrecognizable, his strength was stolen to the point that another had to finish the task of carrying His cross up the hill. Simon of Cyrene helped to bear Jesus’ burden.

Just as Jesus was about to bear the burdens of all mankind.

No wonder He was so kind to those who were hurting. No wonder He noticed the ones who were so often unseen and unloved. No wonder He showed no fear in reaching out to touch the ceremonially unclean, the diseased, the lame.

Isaiah says that He has borne our sorrows, that He is a man well-acquainted with suffering and grief.

To take on human skin with all its frailty, could there be anything more disabling for the Eternal God?

Maybe this is what He was thinking of when He told the parable of the Sheep and the Goats.

“Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.

Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’

The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ " Matthew 25: 32-40 (NIV)

If we reject the marginalized among us, the poor, the hungry, the naked -- we reject Jesus.


The way we act toward the disabled, the poor, the different, the disadvantaged, the marginalized -- does not go unnoticed. 

We may claim that we didn’t see, didn’t know, didn’t understand. 

We may protest that we didn’t have the resources or the knowledge or the funds to reach out to the ones who needed our help.

But in the end, when we deny those in need, when we deny the suffering and the bruised and the downtrodden and the depressed--we deny Jesus Himself.


The beautiful, willfully dis-abled God man.



"Lord, help us to see. May we see the cross for what it truly represents: the Eternal, Almighty, infinite God who chose disability that we lowly humans might walk ably in abundance of life. As we struggle in our journey of disability, give us strength to rise to the task, and give us compassion toward others. Help us to forgive even when it seems impossible, and help us to gently teach your perfect model of inclusion as we remember your loving sacrifice."

Monday, April 13, 2015

From Coping to Thriving: Hope for Healthy Relationships


Recently, I published the first in what I hope to be a series of books providing support to special needs parents. Today I am sharing an excerpt from Special Needs Parenting: From Coping to Thriving.

But Ruth replied, “Don't ask me to leave you and turn back. Wherever you go, I will go; wherever you live, I will live. Your people will be my people, and your God will be my God. Ruth 1:16 NLT

Relationships are critically important to personal and family resilience.  Maintaining healthy relationships within the family and developing friendships help create a network of support as well as emotional reserves for current and upcoming challenges. The need for relationships among special needs parents is a large part of my motivation for writing material for use by small groups.  One of the greatest gifts parents who are overwhelmed can receive is the knowledge that they are not alone. The relationships that come through meeting others on the same journey provide meaningful connections and support. 

Since healthy relationships are an important part of building resilience in special needs parents, where to begin?
o   Set priorities. Which are the relationships you value most? Which are the relationships most in need of nurture? Spouse? Child? Friends? Set priorities to focus your attention there. A pastor I know shared that he and his wife make an intentional priority to set aside a few evenings each month to nurture relationships with other couples so that they have friendships.
o   Understand the difference between acquaintances and friends. Social media announces our friend count and number of connections. Who can you really count on when needed? Who can hear your disappointments without judgment? Who is willing to work through challenges with you? Do you return the favor? Those are your real friends.
o   Create space for the important relationships. In my household we have “family time” pretty much every weeknight. We read together or watch a show or share a meal. Studies show the simple act of eating together builds family resilience as it engages four relationship building blocks (loving action, time, communication, and healthy boundaries). My husband and I set a priority for a weekly date night. For my most valued friendships I try to keep regular contact and get together as often as possible.
o   Pay attention to the give-and-take of relationships. Are you giving too much and in need of getting something more back? Are you taking too much yourself? Relationships should have a rhythm to them. At times we are in need and at times we are the ones offering support. Relationships that lack a balance of give and take become draining over time for the person who is always in the mode of giving.
o   Enjoy being a parent. Yes, there are therapies to do, medications to administer, schedules to watch, behaviors to observe and modify. Just remember you are a parent and not a caseworker even though it sure can feel that way at times.
o   Set healthy boundaries between you and your child. I often experience among special needs parents a sense of a blurring of that boundary. I have heard the pronoun “we” countless times. “We got a low grade on the math test.” “We had a rough day at school.” “We forgot our medication.” “We had five seizures last night.”



Healthy relationships are an important part of the journey with special needs. In challenging times it is especially important to have a core of support. I opened with a well-known verse from the story of Ruth. Naomi had lost her husband and her two sons, who were also married. In Naomi’s culture, a woman’s status and security resided in her connections with the men in her family. Her worth was tied to fertility. All three of the widows were in a precarious situation, but especially so for Naomi. Unlike Naomi, her daughters-in-law were young and could hold onto hope of another marriage. Yet, in the midst of the darkest of times Naomi had a core relationship with her daughter-in-law Ruth that provided support. The health of her relationship with her daughter-in-law revealed itself in her Ruth’s fierce loyalty. Their mutual support sustained them both through the hardest of times. It may seem difficult to set a high priority to build healthy relationships with so many other pressing needs. However, healthy relationships are a key tool to personal resilience for the journey ahead.

Special Needs Parenting: From Coping to Thriving is available at Huff Publishing.

I hope these ideas will be a blessing to you in your most important relationships.

Loving God, thank you for the relationships in our lives that sustain us and bring us strength when we need it most. Help us to likewise be a blessing to others when they are going through times of need. Amen

Saturday, April 11, 2015

Fifteen Years Ago Today

Listen, my son! Listen, son of my womb!
Listen, my son, the answer to my prayers!
~ Proverbs 31:2, NIV ~

Fifteen years ago today, we dropped our 3 year old daughter off at our friend's house early in the morning and headed to the hospital.

After 15 hours of labor, a medical team was in my room, holding the instructions for a gentle birth and testing of cord blood over my face, so the resident could read them as I spent the final 20 minutes pushing.


Fifteen years ago today, we joyfully welcomed a beautiful baby boy into the world at 8:30 PM.

Fifteen years ago today, despite having a family history of the disorder, I foolishly told people, "Surely God would NEVER give me a child with hemophilia!  Have you seen my shaky hands?  I could NEVER put an IV into a child's veins with these things!"  [Note:  NEVER say "never" within hearing range of God!]

Fifteen years ago today, I had never administered even one of the more than 2,000 IV infusions necessary to keep our son alive and healthy.  I hadn't gone through the repeated ritual of cleaning the table, laying out the clean disposable pad, reconstituting the clotting factor, laying out the ancillary band-aid, gauze, alcohol swabs, saline flush, tourniquet, and butterfly needle.

Fifteen years ago today, I had not yet developed a competency in triage, identifying a bleeding episode and discerning its level of seriousness.  I hadn't done range of motion tests, felt for heat in a joint, drawn a circle around a hematoma with a black marker to see if it was growing, or done a basic lab test for blood in the stool.

Fifteen years ago today, I had not managed hundreds of nosebleeds, pinching and holding for, literally, hours.  I hadn't had kitchen and bathroom floors covered in raging red fear amidst shouts for help.  The blessed help of Amicar had not yet been shoved up his nose on a saturated Kleenex.  Repeated cauterizations had not been done in hopes of holding back the bleeding.

Fifteen years ago today, I had not lived through the repeated trauma of hospitalizations, trying not to worry myself sick over whether or not my son would survive the crisis that put him there.  I had not experienced the discomfort and sleeplessness of rooming in with our boy on the most uncomfortable excuses for fold-out beds known to mankind.  I hadn't crawled into a hospital bed with my child crying out in the middle of the night.

Fifteen years ago today, I had not learned to manage a child with a PICC line at home.  We had not yet experienced the lost privacy of having home health care professionals coming every few days to help care for a central line or train us on infusing skills.

Fifteen years ago today, I had not yet faced hauling a child to school to attend classes in a wheelchair. Our school principal had not yet been contacted with a complaint about me parking in a disabled spot without a tag, despite the fact that everyone could see me hauling a wheelchair in and out of  the back of my vehicle twice a day.  A photocopy of my application sat in the windshield of my car for the police, just in case they did show up as I was maneuvering my boy into and out of school.

Fifteen years ago today, we had not sat trapped in a single, windowless exam room -- sometimes our entire family -- for 3, 4, 5 or more hours with nothing to do but watch mindless television.  We had not endured the every-six-month rigor of hematology clinic with its parade of multiple professionals asking questions, giving advice, and running tests.  We had not yet developed the throbbing headaches that inevitably make their appearance once we are finally turned out to return home.

Fifteen years ago today, I had not endured the frustration, anguish, and hardship of dealing with the obscene expense of raising a child with an expensive chronic illness.  I had not written $1,500 checks to cover the cost of his clotting factor when our boy was less than a year old.  He had not yet reached a size where he was using over $200,000 per year in clotting factor alone.  I had not yet spent hours on the phone duking it out with insurance companies or our blood center over the endless bills.

Fifteen years ago today, Snappin' Ministries didn't exist.  We were a "normal" family whose only real trouble was trying to have children or keep a job.  While I had volunteered for years with our local hemophilia foundation to support my sister and her boys, our reach and service didn't go much farther than that.

Fifteen years ago today, I had not served thousands of families, praying, writing, speaking, planning, mentoring, and fundraising.  I had not yet said, "Yes," to God in spite of the fact that I felt I knew so little about anything related to special needs or disability.  I had not yet made hundreds of connections around the country to whom I could refer desperate fellow parents.  I had not yet worked with teams shipping hundreds of gift baskets and thousands of dollars in gift cards to hurting parents all over this nation.

Fifteen years ago today, my heart was much smaller, because I had not yet spent years raising my remarkable young son.  His incredible, loving spirit not only made my heart grow because of who he was and what he endured every day, but it also grew as he spurred me on to something greater --serving weary parents who were struggling on a similar walk.

 Thank you, son.  Happy Birthday!

PRAY:  Father, I ask You to bless my son and every remarkable kid out there facing a battle today.  Whether that battle be physical, emotional, or cognitive, seen or unseen, help our kids to know that You are with them, that they have incredible purpose and value, and that they are infinitely loved.  Thank You, LORD, for trusting our children to our care.