Wednesday, January 30, 2013

Show Me The Way

You make the path of life known to me
 In your presence there is complete joy.
~ Acts 2:28, GW ~

Time and time again throughout the special needs parenting journey, my husband and I have found that the most valuable information comes from other parents.  The most renowned experts in any given area of medicine, psychology or education can offer new breakthroughs in science and methodology.  Yet, they never seem to strengthen as does someone who has walked a mile in your shoes.  And since sometimes our adversary can be the doctor or the school, those who have faced those challenges can often bless us with the best tips, suggestions or questions to ask.

I will never forget our first IEP meeting for one of our children.  We were so grateful to have input from other parents who had already been through the grueling process many times.  One friend recommended setting the right tone by bringing treats for the team.  Another cautioned not to sign anything in the first meeting.  While yet another urged us to bring the psychotherapist to help the team understand the unique diagnosis of PTSD.  All of these ideas made the experience go far better than we could have hoped.

Because of our own personal experiences like the one described above, the motivation has been great to build and foster our organization's new Parent Mentor Program.  We want every parent to have that helping hand from someone who is doing life right beside them.  That peer can inspire emotional, practical and spiritual growth in life-changing and live-saving ways.

When our curriculum committee came together 2 years ago to develop the Parent Mentor Program, we did an exercise early on in the process to define what a mentor is in 1 word.  This is what our team came up with:

~Encourager   ~Growing  ~Equipped   ~Compassionate  ~Learner  ~Has Boundaries  ~Encouraged  ~Discrete  ~Confident  ~Discerning  ~Humble  ~Mature  ~Unashamed  ~Pray-er  ~Knows limits  ~Seeker  ~Is dependent on Christ  ~Not world-focused, but God focused  ~Knows when to ask for help  (Using more than 1 word at the end.)

Wouldn't these be wonderful qualities to find in someone willing to come alongside you?  What a treasure to build a new ongoing relationship with another parent who may be a step or two ahead of you on this challenging journey.  How blessed you and that mentor would be to grow as parents and as children of God.  When the road is frightening and the way unknown, your mentor can help show you the way.  Wouldn't the validation and encouragement of cheering one another on as we raise these precious kids be refreshing? 

We are thrilled to have our first classed of intensely trained mentors ready to take flight.  They are each remarkable parents in their own right with much to offer.  If you feel that you might like a parent mentor to come alongside you in your life of parenting a child with special needs, give the below program summary a look.  If it sounds like something you would appreciate, please get in touch with us at barb@snappin.org.  We will happily pair you with a mentor from this class or from one of the upcoming classes.


PRAY:  Lord, help me discern whether a mentor might be just the thing I need right now in my parenting journey.  Show me the way.  And motivate me to take the right steps to take care of myself as I care for my child.


Top Image: FreeDigitalPhotos.net

Monday, January 28, 2013

Lessons from CLINIC

As you are reading this, we are probably sitting in one of the windowless rooms, much like the small  one pictured above, on the second floor hematology clinic at Children's Hospital of Wisconsin.  Every six months we surrender a day of life to spend hours with our friends from the local hemophilia treatment center thirty miles from our home.  During that time, we see the physical therapist who tests range of motion and who urges physical fitness; we see the nurse coordinator who gets the big picture story on where we are in daily life care with the disorder; we see the social worker who checks on our status with financial support programs like Medicaid or the state's Chronic Disease Program or who checks on where we are at with school issues; we see the geneticist who is now trying to enable our son to become an expert in describing his own genetic status; of course, we see the hematologist who does a complete exam and follows up on any bleeding episodes that have occurred between visits.  Eventually, we end the day with the worst part, the Lab.  The needles always add to the anxiety.  As many as 8 vials of blood are drawn as our son's current health status is examined, complications are ruled out, and voluntary studies receive their contribution.

As you can imagine, this whole process is emotionally, mentally and physically exhausting.  While I will be the first person to express my gratitude that the Lord has allowed us to live in a country where our son is able to receive such comprehensive care, our clinic days can't help but be overwhelming.  Some of these visits have lasted as long as 8 hours, intensively focusing on our son's permanent, severe inability to form a stable blood clot.

While I am left feeling much like I have run a day-long race, all uphill, there are still many lessons that the difficulties of clinic have taught me:
  • Be prepared for the trip.  When we head to clinic, the day will always go better if we have packed ahead for the visit.  Besides usually needing our son's infusion bag with injectible drugs, alcohol swabs, syringes, butterfly needles and other supplies, we always have to make sure we have a copy of his infusion log, detailing his treatments.  Snacks, video games, books and a fully charged cell phone are a must on these days along with a full tank of gas and some cash in my wallet.
  • Let people know where you are.  Life tends to take a screeching halt on the days we're at clinic.  I can't get to the school to pick up my other children if they are sick.  In fact, the girls might need a ride home from school depending upon what our check-in time is.  I often arrange to have an emergency ride for my daughters waiting in the wings if need be.  Other pressing matters will also have to wait.  Concerns with work, my elderly mother or other pressing issues all take a back seat, but I'm courteous enough to let people know why.  I graciously let them know, if you want an answer from me on clinic day, it will come later rather than sooner.
  • Waiting can be a blessing.  The amount of time waiting during clinic visits over the years could probably comprise at least one more day of vacationSitting there alone allows us to have mother/son conversations we wouldn't otherwise have.  The individual relaxation of catching up on a book or playing a video game can be a welcome treat as well.  And when the waiting gets to be too much, God is surely stretching our perseverance and patience for a more serious time when it is needed.
  • Give yourself permission to collapse.  I often joke with my husband that the minute my car leaves the hospital parking structure, my head starts throbbing.  I can barely think straight.  I certainly do not feel motivated to do any housework or make dinner that night.  I learned long ago to stop beating myself up for pulling a pizza from the freezer or ordering carry-out for dinner on clinic day.  I go to bed early that night without apologies.
  • There is always someone who has it worse than me.  Our clinic visits are at the MACC Fund Center for Cancer & Blood Disorders.  While there have been times our son's hemophilia has neared the life-threatening phase, it certainly hasn't been the same as the children we see on the same floor battling cancer.  It has always seemed especially unfair to me that children with Down Syndrome, already fighting a wicked battle, are more prone to a certain form of leukemia.  As the old adage goes, few of us would trade our problems for another's.  Although we sit in the admission area bearing the valid weight of our very real struggles, our problems seem to shrink with every precious child checking in at the desk who has lost their hair from cancer treatment.
  • This disorder shapes us, but it doesn't define us.  I always contend that the worst part of clinic day is that it's "all hemophilia, all the time."  It's "in your face."  Your complete focus for those hours of time are directed towards the fact that something is not quite right.  Eyes are on the half-empty part of the glass rather than the half-full.  There is a sudden sense of feeling that our family really does live with serious, life-altering difficulties.  Thankfully, that's not how we live the majority of our lives.  Yes, hemophilia definitely has shaped us.  It has made us grateful for life's smaller miracles.  It has taught us to praise God in the storms.  We have developed a wicked sense of humor about something so dark.  But we are not hemophilia.  We are sons and daughters of the One True King.  We have power in our weakness that our Father makes available to us.  And on days like this, when we feel leveled, we are blessed to have the hope that we are more than conquerors because of Jesus Christ.
How about you?  What sort of lessons have you learned from those grueling clinic visits?  We would love to hear.

PRAY:  Yahweh God, Maker of all, thank You for the medical support You grant us to care for our remarkable children.  See us through every clinic visit.  And help us to focus on the lessons You would have us learn from those all-to-frequent times we spend at the doctor's.

Wednesday, January 23, 2013

TOTAL ACCESS

“Whoever welcomes this little child in my name welcomes me; and whoever welcomes me welcomes the one who sent me. For it is the one who is least among you all who is the greatest.”
~ Luke 9:48, NIV~

Accessibility.  Inclusion.  These are the buzzwords of today's special needs culture.  How deeply those of us living within this disability-challenged world want total access to every place that typical people enjoy.  We want to be given the dignity of using a simple bathroom without it becoming a major trauma in our lives.  And we want the sensitivity of being included, even joyfully welcomed in schools, churches and community events.  

The pain of having ourselves or our loved ones denied participation in church worship or education is one of our lives greatest stressors.  Coupled together with ridicule or rejection by peers, the weight of access denied can be crushing.

So why would the One who created us in His image feel any less when we deny Him total access into every part of our lives?  God made us to be loved by Him.  We are the object of His affection.  Like the humans He made, the Lord loves when that devotion is mutual.  And as the flow of that reciprocated love between God and ourselves is fostered, intimacy grows.

Think of all that the Lord freely gives us access to.  When Jesus gave His life for us, it not only assured our eternal salvation, it also opened the way for every blessing of God to be ours.  In Hebrews 4:16, Paul assures us, "Let us therefore draw near with boldness unto the throne of grace, that we may receive mercy, and may find grace to help us in time of need." (ASV)  We can be bold because we are now sealed by the power of the Holy Spirit.  We have available to us the same mighty power that burst Jesus forth from the grave.  God didn't have to do that for us, but He did.

How then is it that we subtly decide one problem is big enough for God to handle, but we shouldn't bother Him with another?  On the other hand, how is it that we falsely believe that any situation is too difficult for the Lord?  Spending time in solitude and prayer can even awaken us to the fact that we allow God into parts of our lives, but not others.  We may be passionate about letting Him dictate our finances, but refuse to consult Him with our medical decisions.  We may have a set of "church friends," but don't speak of the Lord with our friends from the old neighborhood, and so on.

Pray with me today that we would give God total access to our affections, our activities and our behavior, just as we appreciate having that access to Him.  Let's quiet ourselves each day, taking one small step at a time as we gently unfold like a blossoming flower before Him.  He has our best in mind, but we can only experience His best for us when we give Him that complete and total access.

PRAY:  Father, I have been holding back.  I confess there have been parts of my life that I don't want to surrender to you.  I enjoy them too much or fail to trust that You will handle them.  Jesus, by the power of Your Holy Spirit that lives in me, set me free today.  I want to grow in intimacy with You, so I can experience Your best.


Image: FreeDigitalPhotos.net

Monday, January 21, 2013

Our Contender

I will contend with those who contend with you,
    and your children I will save.
~ Isaiah 49:25b, NIV ~

One of the more heartbreaking and isolating parts of living with a child who has special needs can come when they are ostracized simply for who they are.  Over the weekend, a story broke of a waiter in Houston who refused to serve a family because the father was verbally maligning another family at the restaurant whose son had Downs Syndrome.  Unhappy about being seated near this special family, the irritable father relocated his family to a different table farther away from the child with Downs, but still within the waiter's same section.  To his great credit, and now recognition, the waiter had a very visceral-but-polite response to the man's behavior, "I'm sorry, sir, but I cannot serve you."  The man and his family then left the restaurant without incident.  Wanting to spare the special needs family any pain, the waiter kept the story to himself.  But another ambassador of good will informed the family how the waiter had stood up for them.  Needless to say, it meant a tremendous amount to these parents to have a stranger stand up for them in such a profound way.

Like any other decent news consumer, I couldn't help but have my heart warmed by this anecdote.  Yet, my interest obviously ran far deeper than the average person.  My heart quickened, perhaps an extra few beats, because the story made me believe that perhaps we are actually making headway in building acceptance of people with unique abilities.  

You see, we have been trying to transform the world's view of our loved ones with a diagnosis in various ways for decades.  There has been the Americans with Disabilities Act (ADA) that allows citizens equal access under the law.  Equally essential has been the Individuals with Disabilities Education Act (IDEA).  There has even been the campaign to stop using the "R" word.  Whole groups dedicate their mission to building awareness and acceptance.  While each of us parents are advocating for our children to the wider culture every day.

Still, I have long made the case that none of these things will make a difference until we change people's hearts.  Why do I feel so strongly about this?  Because I truly believe what God tells us in Matthew 15:19, "For out of the heart come evil thoughts—murder, adultery, sexual immorality, theft, false testimony, slander." (NIV)  The toxicity we spill out onto others comes straight from the condition of our own core being.  If we are stuck in that dark place, no law or feel-good campaign will move us out of it.

Yet, the Lord assures us that He will contend with those who contend with us.  Isn't it a relief to know that?  And His contention can come in dealing with that sin condition of human hearts.  He gets straight to the focal point of the matter, using whoever He finds with a willing spirit to rise to our defense.  One at a time He transforms, building love and acceptance in each human heart.

Yes, the above news story is heartening from its human interest perspective.  It is even encouraging from a disability community perspective.  But perhaps it is most promising because in a dark and sinful world, we can be assured that the omnipotent, Sovereign Lord is faithfully shining His light to drive back evil.  That should be a comfort and encouragement for any family that struggles.

PRAY:  So many days I feel like I am swimming upstream, fighting against a cold world. Thank You, Lord, for assuring me that You are with me in the battle.  I praise You that You give us hope even when it feels like the whole world is against us. 

Friday, January 18, 2013

Dream A Little

...Your young men will see visions.
    Your old men will have special dreams.
~Acts 2:17, ERV~

When we are raising a child with special needs, life is like a beaded necklace, moving from the link of one demand to another.  From the minute our eyes are open each day, there are the beads of sequentially pressing needs that every family faces, coupled with the unique, imposing requirements of a diagnosis jammed in between like an unappealing charm for which there is not enough room.  Despite those extra demands, our chain still remains only 24 hours long, so things that the average person would enjoy seem to get left off.  Things like observing our child with fascination and wonder, dreaming about what the future may hold for them are relegated to a dark drawer that you no longer care to visit.

Then there is the fear.  If you're anything like me, your heart skips a beat and your hands shake, ever so slightly, each time the school phone number comes up on Caller ID unexpectedly during the day.  Is my child safe?  Is everything okay?  Do I need to drop everything and run to the school for yet another emergency?  If I find this alarming now, what will I feel like when my child no longer lives at home?

Living life in the moment like this is demanding enough.  We dare not begin to imagine what our child may be or do when they grow up.  No, those thoughts are much too worrisome.  Parents like us look to the future and see expectations that will never be fulfilled.  We get anxious, wondering if our child will be able to care for her or himself.  Will they be able to secure a job with good medical insurance?  Will they ever find a loving spouse who accepts them and is supportive of them?  These places are too frightening for us to tread...  So we don't.

Yet, our children are still children.  It is only natural for them to dream.  We can steer our precious offspring in certain directions, but the fantasies are all theirs.  For example, our son once thought he wanted to be a football player.  My husband was ready to get on his soapbox when I gently patted his hand and casually mentioned to our son that he may want to consider if that was a "hemo-friendly" choice.  It didn't take long for him to quickly recall on his own a family friend whose son ended up in the hospital with a concussion.  In an instant, our son made an about-face, taking his dreams elsewhere.  There was no need for us to worry.  We merely needed to equip him to examine his own goals, and the Holy Spirit took care of the rest.  And it was fun just for that short while to picture our boy as a force to be reckoned with on the gridiron. 

While it can be a bit hard on our stomachs, our children need us to enter in and dream a little with them once in awhile.  They need the relaxation of setting limitations behind them.  Our encouragement and support mean everything to them.  Nothing can be more fulfilling to them when they grow than to know we are proud of them and their aspirations.

At the same time, those day dreams or fantasies can benefit our emotional health.  What a relief it can be allowing our minds to wander to greener pastures versus the dry, dead grass of grief that is ever at our heels.  It can lessen stress and depression, stimulate creativity, boost productivity and add to our energy.  Giving ourselves permission to share those dreams with our kids may even help us to find ways to make those aspirations become reality.  

This weekend, take a break from all of the "have-to's."  Engage your child in a conversation of "What do you want to be when you grow up?".  Even if your child communicates through an assistive device or is cognitively delayed, spend time imagining together.  Don't worry about tomorrow.  After all, Jesus tells us each day has trouble enough on its own. (See Matthew 6:34)  Instead, take a mental vacation and support your child in their dreams.  You never know which ones the God of the impossible situation might make come true!

PRAY:  Lord, so many dreams for my child have had to change since diagnosis.  I have been afraid to imagine the future.  Comfort me, Jesus, and help me abandon that grief long enough to enjoy the visions of "some day" with my child.

Wednesday, January 16, 2013

The Fellowship of Suffering

Just as we have a share in Christ's many sufferings, so also through Christ we share in God's great help. ~ 2 Corinthians 1:5, GNT ~

For the past decade, the ministry I have had the privilege of leading has hinged upon the words of Paul in 2 Corinthians 1:3-4, "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." (NIV)  When our son was only 2 years old, I sought to be served, to connect with other parents who were approaching their challenges in raising a child with special needs by clinging to Christ.  That was difficult to find 10 years ago, and God revealed to me that I was blessed to be a blessing.  He called me to serve rather than be served, which was a scary notion.  Obedience would mean that I had to get my focus off of myself and on to the concerns of others.

Yet, one of the greatest blessings of the past decade has been the fellowship of suffering which I share with the thousands of parents we serve.  One of life's greatest heartaches is to watch the child you love struggle or suffer.  But if suffering is inevitable, and Jesus assures us it is (see John 16:33), then what a treasure the Lord gives us in knowing that we are not alone. Somehow it seems a bit less frightening when we have another hand to hold as we venture into dark and unknown places of any kind.  That is no less true on the journey of raising a child with special needs.  To have another there who is traveling that same bumpy road as us validates our pain, encourages us to keep going and comforts us when we need a break.

Humor can even find its way into the fellowship of suffering!  There is nothing like the shared, sometimes "dark humor" of parents raising such a unique child.  Being able to joke about otherwise repugnant things such as body fluids and medical procedures shrinks their power over us.  Otherwise crushing things like mountainous medical bills or uncooperative schools are placed in their proper place, under our feet, when we can mock them with another who understands.  Somehow the gift of that unexpected little snicker in the most unfunny of places assures us of the deep joy that can never be stolen from us.

And the truly amazing thing is that this fellowship of suffering has the most coveted of members -- King Jesus.  He knows what it is to feel pain.  We often fixate on the physical pain of His death.  While the humiliation of slapping, hitting and spitting, the mutilation of of scourging and the agony of crucifixion are no small thing, they are merely the crescendo to a life of suffering.  Prior to His death, Jesus suffered the pain of losing his earthly father to death, of being doubted and disrespected by his mother and siblings (see Mark 3:21), of living in poverty and having no home of his own (see Matthew 8:20).  People routinely rejected him, and even his own closest circle of friends abandoned him in his darkest hour.  Because He faced all of these unenviable trials, Jesus can identify with us, and we can identify with Him.

That mutuality with the King of Kings redeems our suffering and gives it immense value.  How awesome to know that, "Since we are his children, we will possess the blessings he keeps for his people, and we will also possess with Christ what God has kept for him; for if we share Christ's suffering, we will also share his glory." (Romans 8:17, GNT)  Let's give thanks today for this special fellowship we share with God and with each other.

PRAY:  Dear Lord, some days I feel like I am in a club to which I would rather not belong.  Still, you assure me that I will have to see suffering in this imperfect world.  So if I must suffer, thank You that I do not suffer alone.  Thank you for the fellowship of other faithful parents who also walk this journey.  But more importantly, thank You for the unique fellowship I have the privilege of sharing with You.

Monday, January 14, 2013

The Apple Doesn't Fall Far From The Tree: The Challenge of Genetics in Special Needs Marriage

Finally, brothers and sisters, rejoice! Strive for full restoration, encourage one another, be of one mind, live in peace. And the God of love and peace will be with you.
~2 Corinthians 13:11, NIV~

There is an ugly monster which lurks underneath the surface of special needs parenting that no one seems to talk about.  Thousands of studies on a number of different diagnoses make the case for conditions from ADHD to autism to learning disabilities to mood disorders all having a genetic component to them.  While that can be helpful to families who struggle with wanting to know how or why a disorder has occurred, it can also point to why couples experience difficulty in their marriage.

The fact is that a child with special needs may also reveal an adult with special needs that had previously gone undiagnosed.  And this can be a valid source of friction.  While it may not be intentional, one spouse can suddenly find brewing under the surface a level of resentment towards the other spouse who is the genetic carrier of the disorder.  Add to that the sudden awareness that the typical spouse is now also responsible for the care of an adult with special needs, and the relationship can really find itself on rocky ground.  The unaffected spouse can also find themselves more exhausted as they suddenly come to worry that the other spouse is unable to control or improve behaviors that were originally thought merely to be annoying or due to thoughtlessness.

So, how is a couple to survive and hopefully, thrive in such an unexpected tangle?  When life gets complicated by a parent and child both being diagnosed with a similar social, cognitive or emotional disorder it is time to take a huge "rest stop" for the family to reassess things.  These are the occasions in life to revisit God's foundations.  "Love one another," "Live peaceably with one another," and "Encourage one another," are all commands of God's to cling to at a time like this.  View yourselves as a team, and learn how to play the part that each of you have been given by God.

Talk back to the negative thoughts.  The world does not think the way God does.  Plenty of well-meaning people will be there telling you to walk away from your marriage.  This sort of poor advice only serves to feed the wayward thinking, "I don't deserve this,"  "It will never get better," or "I didn't know my spouse would be like this when I married them."  If you are the unaffected spouse, it is time to remember that you married the other person for better or for worse, in sickness and in health.  That includes the health challenges that originate in the body organ of the brain.  Evict any thoughts that lure you into behaving in a way contrary to the way you would like to be treated.

Make concrete plans to adapt in an organized fashion.  No matter what the diagnosis, structure is inevitably a helpful tool.  Commit as a couple to abide by the structure of therapy, classes, medication schedules and any other accommodations that need to be made to succeed at managing a household with both an affected parent and child.  While it may take time for the spouse with a diagnosis to accept that they need to make changes around that diagnosis, some patience and outside help are definitely in order.

This is where ongoing support and help are a must.  Proverbs 15:22 tells us, "Plans fail for lack of counsel,     but with many advisers they succeed." (NIV)  Seeking pastoral care, getting family and individual counseling, as well as finding respite are all vital to the strength of this type of family.  It absolutely helps to have others to talk to who are going through similar things. Normalizing our challenges can bring such a sense of relief.

Finally, remember our God is bigger than any difficulty we could face.  Sometimes it may feel like there is no way out of the darkness of such persistent challenges, but our God is the God of the impossible situation.  These things are too heavy for we humans with our limitations.  Yet nothing is beyond the amazing, creative ability of our Sovereign Lord.

PRAY:  Lord, we are imperfect people living in a imperfect world.  Help us to love one another, encourage one another and see each other through Your eyes.  Thank You for making us a family.

*Recommended for further reading:  

Friday, January 11, 2013

Looking Backwards To Go Forwards

Lord, I remember what you have done.
    I remember the amazing things you did long ago.
~Psalm 77:11, ESV~

One of the greatest blessings of my life is the habit I worked diligently to develop, rising just a bit before the family does each morning, in order to enjoy my "quiet time with Jesus."  I meet with the Lord around the same time, usually in the same place before the loud chaos of departing for school and work begin.  Over the years, I have chosen certain tools to compliment that sacred time.  For example, one year I set the goal of reading the entire Bible in 12 months, so I would spend my time each sunrise with The Message//Remix: Pause Bible to help with my daily reading.   For the past couple of years I have been moved each morning by Streams in the Desert by LB Cowman.  Some of my ventures have taken less than a year, like when I feasted on Praying the Names of God and Praying the Names of Jesus both by Ann Spangler.  Most of these journeys in growing closer to God have been incredibly transformative in my life.

Perhaps that is why this year I found myself drawn to look backwards in order to go forwards.  For me the past 19 months or so have been extremely tumultuous.  The day after Father's Day, June 20, 2011, I lost my beloved, sassy Irish father quite unexpectedly.  Losing Dad was anguishing, but we barely had time to grieve his loss as my mother's medical needs demanded our attention.  She and Dad were still in their home, and he had spent every day of his retirement as her caregiver.  Soon after Dad's death, emergency room visits and repeated hospitalizations began for Mom.  Ultimately, she was diagnosed with a contained, lesser form of kidney cancer that could be cured by removing the kidney.  Of course, she became less mobile by the minute, and the kidney removal finally caused her to accept that she must relocate into an assisted living facility.  Her cancer surgery was successful in January of 2012, and we were able to move her into her apartment by February 2012.

Once Mom was settled in her new living quarters, our son had a surprising medical crisis.  In mid-March, he expressed some sudden pain as I picked him up after school one day.  At the doctor's instructions we proceeded to the hospital, only to discover he  had a life-threatening bleed in his right hip.  This was the first bleed of this kind for our boy, and it changed life for us at home for a number of months.  After several days stay, he was released from the hospital with a central line in his arm.  We had a doctor visiting our house at least once a week for care.  After two weeks out of school, he was able to return in a wheelchair until late April.  The emotional toll it took on our immediate family was quite high.  Attempts by the doctor to move our son towards self-infusing stalled, and we prayed that a repeat of this bleed, which is not uncommon, would not revisit us over the summer months.

Eventually, our son had stabilized, and it was time to return to the care of my mother.  The clock of opportunity was ticking for her to repair and sell the family home before the warm weather months escaped us.  Delegated the responsibility of being her financial adviser, I found myself in the throws of getting my parents' property repaired, updated, cleaned out and put up for sale.  Of course, no such an event can be completed for a family with 6 adult children without much strife.  Amidst the long, scorching summer I struggled through this unenviable task.  With God's mercy, the house sold quickly with the closing set for late August.

Once the nightmare of the house sale was behind me, I faced the beginning of the school year once again.  And this school year would be a big transition for our "Little Miss" from grade school to intermediate school.  The grade school had done such terrific work with her that the decision was made, albeit somewhat reluctantly, to drop her from an IEP down to a 504 Plan.  I held my breath, expecting the worst, but we were off to a good start.  Unfortunately, with each passing month things deteriorated, mostly with social issues.  This required great amounts of energy, time and prayer, working with the school to help her through the challenges she faced.

With this being the least opportune time for our son to have additional health issues, he encountered another crisis.  More related to his global anxiety disorder, terrible traumas began to ensue with his hemophilia.  There was a great deal of missed school, a new psychologist 30 miles away, and a broken toe resulting in more school attendance in a wheelchair.  Somewhere in there I believe there were some holidays.  And that same broken toe, almost completely healed, was re-sprained just as the Christmas break came to an end.

Why do I tell you all of the sordid details of my deeply personal roller coaster ride?  I share the story of this past year to let you know that when your world has been so utterly rocked, shaken and turned upside down, God calls for you to cling to something foundational.  Along those lines, He drew me to dust off a devotional that I hadn't glimpsed at in a decade.  But that book was life-changing when I was in the early stages of my special needs parenting journey.  So now, I am again reading and studying Experiencing God Day By Day, written by Henry Blackaby & Richard Blackaby.  I find myself in awe, not only of how richly this devotional brings the heart into intimacy with God, but also at how beneficial it is to reflect on what I had written in the journal portion of each page.

Looking backwards at such a snapshot in time with the Lord allows me to reflect on where I once was, how far God has brought me, and what demons I still face.  Revisiting this volume has already been such refreshment in the first two weeks of the new year.  From all the pain, tumult and chaos has come a sudden hush of reverence, of holiness, of wonder once newly discovered.  My circumstances haven't changed.  In fact, we have encountered another medical crisis with my young daughter.  But revisiting what the Holy Spirit taught me so indelibly 10 years ago has drawn me into that peace that surpasses all understanding.  I suddenly carry within me this unshakable sense that He has seen me through the darkest valleys before, and He will again.  I feel empowered to go forward without that sense of dread that I left back in 2012.

I feel blessed to have heeded God's call to do some holy remembering, reexamining old lessons, so foundational, so rock solid, to help me move forward into a very uncertain future.  It is times like this that awaken the soul's awareness that He is indeed at our side, holding us up, walking right along with us through it all.

PRAY:  My Loving Lord, thank You for drawing me forward by making me take a glimpse backwards.  Sometimes we need to see how far we've come in order to trust where You are taking us.  I praise and thank You for that opportunity! 

Wednesday, January 9, 2013

Special Mom Brain

“For my thoughts are not your thoughts,
    neither are your ways my ways,”
declares the Lord.
~ Isaiah 55:8, NIV~

A local radio station in our area has a year-end trivia quiz each winter that awards big prizes for those the eventual winner.  The show host is brilliant, so it is always fun to listen to the 3 hours of quizzing and play along with those who are brave enough to call.  Involved in legislative advocacy, always abreast of current events, a well-informed decision maker, this year I stood ready to answer the questions.  Yet, I found myself shocked at how little I knew or could readily recall.  

A number of days after listening to the trivia quiz, I cajoled my family into playing a game that we had received from "Santa" for Christmas.  "5 Second Rule" requires the players to name 3 items of a certain category within 5 seconds.  For example, the player to your left might read a card that states, "Name 3 Ivy League Colleges."  To score a point, the player must then name those 3 colleges before the 5 second timer runs out.  For a reluctant group of players, my family certainly found themselves laughing uproariously as they watched my husband dominate the game as I scored nothing.  That's right.  Not a point.  In fact, the entire family was able to score at least 1 point, most more than one, before we had to end play for the night.

As I reflected on my lack of mental finesse in calling up facts with both games, it occurred to me that I have come to a point in my life where I deal with so many challenging things that I only keep easily accessible within my brain that which I need to function in the immediate term.  If information is needed to traverse our daily life, my mind can access it.  If not, it is tucked away.  For instance, I can share with you volumes on IEPs and 504's or easily educate you on relevant medical processes and how they occur.  But ask me the name of someone I recently met or what happened on a given date, and you're sure to get a good case of the "Ums" from me.

Believe it or not, there actually is a diagnosis for this lack of cognitive acuity on my part.  It has been deemed by me, "Special Mom Brain."  One doesn't have to look too far to find endless publications and remedies declaring that stress does take a toll on our minds.  While I like to joke around that my head is crammed too full of necessary information fit ancillary data in, this really isn't far from the truth.  Studies have long indicated that certain hormones induced by stress affect neurological function in the brain, and ultimately, how we humans store and recall information.  In other words, if you think raising that child of yours is affecting your head, you're right!

Knowing these facts and accepting them, however, are two very different things.  It is frighteningly easy to malign myself as a "dingbat," worried that others will regard me with disdain.  After all, I was  an investment broker once-upon-a-life, analyzing price-to-earnings ratios and the percentage of debt companies were carrying.  Who would ever believe that with the state of my mind now?  How will I ever get the doctors to take me seriously with how forgetful I am these days?  It's easy to feel diminished.

But then I remember that I am not only a mom, but advocate who would argue the value of any life regardless of cognition.  Whether a person be gifted permanently with the mind of a 3 year old or a Harvard graduate, I would contend that God gives that individual infinite purpose that we may not fully realize this side of heaven.  And no matter how intelligent or able to recall any human brain may be, it would always pale in comparison to the boundless thoughts of our Heavenly Father.

So I have Special Mom Brain.  I might have to resign myself to the fact that I will never be the family champion of "5 Second Rule."  But there are worse things.  I could be a superficial human who finds value in only those who hold a doctorate or who make millions.  Instead, I'm a completely imperfect person who loves her children and does her level best to care for them.  That absolutely makes my absent-minded diagnosis one worth enduring. 

PRAY:  Father God, some days I feel as if I'm losing my mind in motherhood.  If nothing else, help me to remember that Your power is made perfect in my weakness.  And remind me to value people with the same high esteem that You do.

*Notes: "Study Shows How Stress Affects Memory Tests"by Thilaka Ravi on  March 28, 2012 at 10:48 PM Mental Health News ; "Rat Study Shows How Stress Disrupts Short-Term Memory" By Senior News Editor, Reviewed by John M. Grohol, Psy.D. on September 17, 2012; The Franklin Institute: Resources for Science Learning, Stress on the Brain Topics: How Your Brain Responds to Stress, Stress and Memory, and Impact of Stress Studies http://www.fi.edu/learn/brain/stress.html

Monday, January 7, 2013

Not Alone

 But if we are living in the light, as God is in the light, then we have fellowship with each other, and the blood of Jesus, his Son, cleanses us from all sin. ~ 1 John 1:7, NLT

Fellowship.  It is a word that implies togetherness, a shared bond, unity of purpose, and enjoying time with one another.  Mentioned 94 times in the NIV Translation of the Bible, fellowship is something that definitely matters to God.  We were made for relationship, with God and with one another.  And as today's Bible verse tells us, Jesus sacrificed everything to bring us into that right relationship.

Sadly, one of the heaviest burdens a special needs parent can bear is that of isolation.  When people ask, "How are you?", they have a funny way of changing the topic if your answer contains anything mentioning your child's challenges.  That shutting down, closing out, and general discomfort conveyed by the typical population leaves us feeling anything other than fellowship.  In fact, we can be left feeling quite alone, rejected, misunderstood, and as if we are an oddity.

But praise God for faithful servants like my colleague, Michael Woods, who shares my heart for parents and challenges just like this!  Through his initiative and outreach, he has managed to draw together 20 various parent bloggers to create Not Alone Parents.  January 7, 2013 represents the full launch of the new website.  Mike states on the site's Facebook page that Not Alone is, "Where parents can be real, refreshed, and supported in faith as we raise kids with special needs. Whether you're caring for a child with physical, mental, behavioral or emotional challenges - we're glad you're here!"  Now THAT'S fellowship!

Part of what inspired Mike was that there were numerous parent bloggers out there who lacked the cohesion one wrapper.  This new one-stop community will not only provide inspirational blog posts for parents of special children, there will also be a book club and a weekly book giveaway from each of the contributing writers who have a publication available.  What valuable resources for weary parents!

Additionally, for those of us who are either frequent visitors to medical facilities or who remain at home quite a bit out of necessity, that fellowship is only as far away as internet access.  The ability to connect with others who are on a similar journey will be readily available to all through the Facebook page, Twitter, and even Pinterest.  In my ministry experience, these online tools have been an immense gift from God to end our isolation.

I pray that you will take a look at Not Alone Parents and find yourself blessed.  I can't help but look at the entire project and hear God's words from 1 Thessalonians 5:11, "Therefore encourage one another and build each other up, just as in fact you are doing." (NIV)  What a smile this must bring to God's face as He watches us foster relationship with both Himself and one another!

(It is my great privilege to be one of the contributing writers to Not Alone Parents.  I invite you to view my pre-launch post from December 28th and to look for my future posts on the 3rd Tuesday of every month.)

PRAY:  Oh, Creator God, You made us for fellowship with You and with each other.  Bless us as we seek to end the isolation that sin and sorrow can bring.  We know that You have much better in mind for us.  We were made for heaven.  Thank You for helping us bring a little piece of it here to earth.

Friday, January 4, 2013

Unapologetic

Those who put their hope in you
    will never be put to shame...
~Psalm 25:3, NIRV~

"Maybe a little less sugar would help her," the grocery store clerk suggested as my daughter chattered and bounced.  "No," I grimaced, holding my tongue painfully until we could complete our transaction.  My Little Miss was her usual loud, energetic, socially awkward, but friendly self as we passed through the check-out line that day.  I hurriedly shoved my mountainous cart of groceries out of the store after the exchange, head held low, not wishing to disturb any more customers or employees.  My spirit drooped as those old lying voices of inadequacy haunted me.  This wasn't an unusual occurrence in public...  or with relatives...  or with friends...  or with fellow church members.  No matter what the occasion, and usually when I felt least equipped to handle it, the comments about my youngest daughter's behavior would fly.

Having a middle child who is more medically fragile and who struggles with anxiety disorder, you would think our youngest would be the "easier" of our two children with special needs.  However, since the day this child was born, something has been different about her.  When she was a toddler, I can remember one incident where I went to use the toilet and came out to find her gone.  Rather than helping me rescue her, one neighbor called another and said, "Look out your back window to see who is running through the yards!"  Sure enough, it was my missing toddler.  Smart as a whip, she has long been misunderstood, not getting compassion or help until she was eventually diagnosed with multiple severe allergies, asthma, severe ADHD (of course, her allergies include all ADHD medications), social deficits and sensory processing disorder.

Over the past decade, I have learned to treasure all the unique parts of my daughter.  I sit and imagine what God will do with all her traits and gifts when she is grown.  Before we got her the diagnoses with the accompanying help that she needs, I used to worry that I would be visiting her in jail.  Thank God, with the blessings of some wonderful teachers, therapists and doctors, we have been able to help her with reading and writing as well as channel her imagination and energy in positive directions.  Rather than endlessly apologizing for who she is, I know that God has made her "fearfully and wonderfully." (See Psalm 139:14)  I am proud of this incredibly unique little treasure that the Lord has seen fit to entrust to our care.  I watch her when she doesn't realize it, and I giggle witnessing her silly quirks. Now my job as a parent is to get others to view my child with that same warmth.  

This thought really sprang up in me over this past week as another parent of an older child with special needs had an occurrence at a restaurant where he ran from the mother and created some chaos in an area where he should not be.  The mother called me, crying in shame, feeling she couldn't apologize enough for her son.  Sadly, the restaurant owners are family with the special young man.  He had never before behaved in such a way in their establishment.  Yet, the extended family had never made an attempt to understand the boy's challenges in any meaningful way.  The result is that a mother now sits feeling that she can never show her face in the restaurant again and that she is a horrible person because of her son's behavior.

I have to wonder, looking at this mother's situation, looking at my own situation, if we should really be the ones apologizing.  Don't get me wrong.  There are dangerous circumstances that our children can create or get involved in that we must act upon.  And when we are negligent, we must repent.  Nevertheless, I would hazard to say that those types of situations are the exception rather than the rule with parents like us.  Instead, I would say that those around us are more likely to move through daily life with disregard for God's mandate to bind up the brokenhearted, to love the least of God's children, to laugh with those who laugh and mourn with those who mourn.

Instead of tiptoeing through this life sheepishly, we as parents need to fill our tanks enough so that we have energy both to parent these children and to educate the world around us.  Building acceptance is part of our high calling.  That means that we need to be unapologetic for who God made our precious children to be.  Yes, these children of ours have imperfections, but so does every human in this fallen world.  Showing others how to adapt and include our loved ones is something for which we parents are uniquely equipped. 

Parents, let's resolve to move through as many days as the Lord grants us, loving our children, taking in their beautiful and unique qualities, being unapologetic for who they are, and enlightening those around us in the special way He has given us.  After all, we don't know if our child might be the very tool that God uses to change others in some unforeseen way.  And that makes every life, even the quirky, chaotic or unusual, extremely worthwhile.

PRAY:  Father, may I never lose sight of the remarkable creation of my child.  Thank You for giving me eyes of love to see the unique, worthwhile person inside.  Only by Your power can I go forward to awaken an uncaring and critical world.  Put the right words in my mouth to build acceptance of those with special needs.

Wednesday, January 2, 2013

A Fresh Start

Image: FreeDigitalPhotos.net
"See, I am doing a new thing! Now it springs up; do you not perceive it?"
~ Isaiah 43:19, NIV~

What is it about the New Year that makes even the sad heart spring to life?  After all, the snoring husband on my couch at midnight on New Year's Eve assured me it was really just another night.  What is it about this time of year that does so much for our psyche?  Perhaps it is that clean slate marked by a specific date that energizes us.  Maybe it's leaving so much weight from the past year behind us.  Whatever it is, we are well served to take advantage of it.

Parents that walk our weary path raising a child with special needs carry a heavy load.  We carry the weight of this years school IEP, which may or may not be working out.  We limp through the endless medical and therapeutic appointments, with all of their revelations or lack thereof.  We rush from any number of activities to help our children blossom to their potential, whether it be Special Olympics, hippo-therapy, or adaptive music programs.  We wrestle with insurance companies and medical billing services in our attempt to harness the financial monster that takes up residence when we raise a child with such challenges.  Never mind the concerns we parents can have about spiritual matters or the future of our child.  All of these stressors can build up to a point where we are carrying a 400 pound gorilla on our backs.  

What if we put them down?  That freshness that comes with a New Year makes it the perfect time to set down all we weren't even fully aware had been hitching a free-ride in our lives the previous 12 months.  It's no surprise that we can be unwittingly, through the year, putting more in our parental "back packs" with each passing day.  By the time we get to the holidays, which can be stressful in and of themselves, we can really find ourselves dragging.  What a relief it would be to park that pack rather than continue to carry it into a new year!  

If we leave our burdens in the previous calendar year, we do ourselves a great favor.  I am not talking about being oblivious to what we have learned the past 12 months.  Rather, leaving the unnecessary things that weigh down our hearts, minds and spirits, even things that can wait until a future date to monopolize our attention, can open our eyes and ears to new things that God is doing.  Clearing the decks, quieting ourselves as we breathe in a new year can refresh our awareness and empower us to move into the months ahead as an alert, smarter, more focused and effective parent.  In embracing a "refresh and reset" we remove from our shoulders the toxic and unnecessary, and leave ourselves open to something new.  It may be a surprise new ally or the opportunity for a new course of treatment or divine intervention in our financial well-being.  Frankly, the miraculous can be happening right under our noses without recognition.  We can't help but have our focus on the heaviness we lug along.  But when we are willing to lay it down, begin again, we can finally witness the every day miracles happening right within our view.

PRAY:  Lord, I give you all of the weight that has been building up over this past year.  Carry it for me as only You can.  I surrender my senses to You that I might perceive the new and miraculous things You have in store for me in the days and months ahead.