Friday, May 31, 2013

Destroying to Build

There is a time for everything,
    and everything on earth has its special season...
 There is a time to kill
    and a time to heal.
There is a time to destroy
    and a time to build.
~ Ecclesiasted 3:1, 3 ~

We parents of children with special needs are repeatedly called upon to do difficult things.  Often times, just the daily living with our kids and their chronic diagnoses can be challenging enough.   Yet, there are times we must escort our precious children into the depths of destruction in order that they may be victoriously rebuilt.  Talk about emotionally and mentally demanding!

I have been there countless times myself.  The 2,000+ times our son has been through the pain, and at times, horror, of IV needle pokes over the past 13 years have walked him towards physical safety, better joint health and indeed, even life.  Most recently, I fought a hard won battle to usher our youngest daughter into removal of her tonsils and adenoids, as well as having her nose cauterized on both sides.  I was motivated knowing how important this miserable maneuver was to a little girl who faces frequent bouts of tonsillitis, while also being severely allergic to every antibiotic but one.

Sensing the wisdom of the Holy Spirit poured into my heart, has helped me face these ugly things.  Knowing that God has deemed such times, such decisions as appropriate in due season, gives me the strength to walk with my children into the necessary dark valleys.  He equips me with discernment and motherly instinct just for times like these.

I realize that I am not the only parent who must venture into destruction for the sake of my children's ultimate benefit because I have walked through it with so many others.  There was the mother who sat with her non-verbal son wretching in the hospital after having rods surgically placed on both sides of his spine, so he wouldn't suffocate from scoliosis.  There have been the multiple families dealing with Botox injections or heal cord surgeries in hopes of increasing their son's or daughter's mobility.  There was the parent who had to make their child pick up cereal pieces off the toilet seat to desensitize them to their OCD symptoms.  And oh, the anguish of many families deciding on residential living when the prospects are more hopeful for their special child somewhere other than home.

To hearten us all, the Lord reminds us that He has endured the same with His only Son.  To build humanity up for eternity, He had to walk Jesus into the destructive valleys of rejection by family and neighbors, derision by religious authorities, homelessness, poverty, and even the torture of a crucifying death.  Our Heavenly Father knows the tough decisions we face because He faced them too, and more.

My fellow warrior parent, do not be discouraged or full of self-doubt when you sense the call to walk towards something that may seem destructive or difficult in the short-term.  Feel your Ultimate Fellow Parent walking with you into those times He has ordained as seasons of destroying to build.  Know that you are stepping heavenward with wisdom as you move through every new trial you confront.

PRAY:  Father God, strengthen me for every time an season you call me to face as a parent.

Wednesday, May 29, 2013

Obeying Is Better Than Sacrifice

“What pleases the Lord more:
    burnt offerings and sacrifices
    or obedience to his voice?
It is better to obey than to sacrifice.
    It is better to listen to God than to offer the fat of sheep."
~ 1 Samuel 15:22, NCV ~

It was the Summer of 2010.  As with so many previous years, we had faced plenty of sorrow.  My husband lost his father to a long battle with Emphysema in late January.  Our son's struggles with hemophilia and post traumatic stress disorder (PTSD) had kept him from many days of school.  Our youngest daughter had a horrible school year with some of her sensory issues finally getting diagnosed and a hard fought IEP was eventually put in place.  We were downtrodden and stressed.

We made the commitment to cling to one another over those Summer months and enjoy our time as a family.  This included intentional plans to go camping.  Some of our best family memories over the years had included a tent, a fire and all that come with them.  Over the years we had become well versed consumers of Wisconsin's recreational areas.  Given our appreciation for clean bathrooms, copious activities to keep the kids active, and a site with fully functional electricity and water, we opted for private campgrounds around the state.  It seemed no matter where we went over the years, the kids always wanted to go back to one favorite place -- Evergreen.  

That summer of 2010, we enjoyed some especially wonderful time at Evergreen.  The weather was perfect.  We had a 4 day weekend.  The swimming was phenomenal.  The croquet had us in tears of laughter.  And there was this campsite...

When special needs came into our lives, it seemed our ability to dream as a family left town, except where that silly campground was concerned.  The majority of Evergreen had permanent seasonal sites that people made their summer homes.  For the decade we had been camping there, we walked the streets of the campground fantasizing about what it would be like to own one of those permanent getaways.  During our 2010 summer stay, an opportunity to purchase the camper and site of our dreams arose, and we had the financial wherewithal to pay for it.  My husband felt resolute that this was something worthy of investing the inheritance that his father had left him that year.

To our delight, we became the proud residents of Site 348 in our 33 foot Forest River Rockwood trailer, capable of sleeping 10.  The purchase included a previously built deck, large shed and gas golf cart.  God blessed us with lovely warm weather lasting well into September, which is when we closed on the deal.  So, our grateful little family wasted no time enjoying this small slice of heaven that the Lord had graciously granted us.

Over the past 3 years, we had the kids each bring up numerous friends, celebrated holidays, and enjoyed our preciously rare vacation time from Spring through late Fall each year at "the cabin", as it is affectionately known by the kids.  My father spent the last day of his life there and succumbed to an aortic aneurism the next morning.  Board games, yard games, art and craft projects, and fun cooking have all helped us create awesome memories at our Evergreen retreat.  Friendships have been built there.  Books have been read there.  Quiet time alone with the Lord, away from the daily challenges of life, has been enjoyed there.

This Memorial Day weekend, amidst the sobbing tears of a child who struggles with social understanding, we had to abruptly put our dream up for sale.  A consulting job I was expecting to come through by mid-May fell through, and the medical bills had unexpectedly become too mountainous to climb this year.  And this is where God brought us to come face-to-face with the choice between obeying Him and putting our desires first.

I will not kid you, I was a ball of emotions as we headed there for the Memorial Day weekend.  I spent much time talking to the Lord.  Why would He grant us this dream only to rip it away?  This has been another horrible year for our children.  Must they also face this small scrap of simple joy stolen from them?  Father, if this is what you are asking of us, help my heart to accept this.

As the weekend progressed, the Lord met me where I was at.  He reminded me of Abraham putting is son on the altar for love and obedience of Yahweh.  He touched me through my daughter's sharing of a story from  Reckless: Following Jesus to the Point of No Return, where a child fixated with the delight of playing with an upside down skateboard's wheels learns to let go of that pleasure long enough to discover the greater joy of riding it upright.  He comforted me through the whooshing of mighty pines and oaks, as a mother hushes her crying child.  I was able to walk towards submission to God's Sovereign will.

Yes, to obey pleases Him better than sacrifice.  But sometimes, setting aside our dreams and making the sacrifice is the obedience.  My will, our family's will, must give way to His directions if we truly love him more than all else. 

My prayer is that this, more than any little dusty, wooded vacation spot, will leave a permanent imprint upon our children's character.  Watching us do life's most difficult things for love of the only One worthy of our ultimate affection, is an irreplaceable lesson.  And every painful tear will be worth the obedience and sacrifice if it teaches our children to do the same.

PRAY:  Father, help me to lay on the altar anything you ask of me.  May my obedience be a fragrant offering to you and example for the next generation.

QUESTION:  What is God asking YOU to put on the altar?

Monday, May 27, 2013

Happy Memorial Day!

They charge like warriors;
    they scale walls like soldiers.
They all march in line,
    not swerving from their course.
~ Joel 2:7, NIV ~ 

Today we gratefully remember along with you all who gave their lives so that we could live free.  Join us in prayer for all who have lost loved ones in the service of our nation, past and present.  These precious families have given us their all.

Friday, May 24, 2013

7 Special Sources for Our Military Servants

With your help I can attack an army.
    With God’s help I can jump over a wall.
~ Psalm 18:29, NCV ~

A treasured friend of ours now holds the rank of Captain in the US Army Reserve.  We have supported his wife, loved his children and shipped all sorts of goodies to him during his multiple deployments.  Memorial Day, Veterans Day and any other patriotic holiday always cause us to pause, taking time to thank him for his service.  We understand what a huge sacrifice our friend and his family have made for the sake of our freedom. 

When I look at everything our friend has endured and given up to protect the country he loves, I can't help but think of others like him who live with similar nobility, but who also have children with special needs.  I can't imagine the level of stress military wives raising children with special needs must face.  First off, no one goes into the armed forces to become rich.  I'm not certain that most Americans stop to think of how poorly we compensate our service men and women.  That financial challenge alone, coupled with the added expenses of caring for a chronic diagnosis makes these families noteworthy. 

Then, there are the deployments.  My husband and I often share our admiration for single parents raising children with special needs.  That esteem comes largely from feeling we can barely handle things as a couple!  When a spouse is called up for duty, life gets turned on its head.  In essence, you still have a member of the parental team, who can't fully function as a member of the team in some instances.  There are many times when the spouse at home feels like a single parent.

On the flip side, the distance of a loved one and worry about their well-being must certainly produce an underlying stress to the family.  How do parents properly prepare a child for such emotion?  How do they themselves cope with the pressure?  Certainly, reentry after deployment adds to the psychological and emotional strain on a family as well.

Thankfully, we live in a more proactive era than our predecessors.  There are so many wonderful tools, people and resources for military families to plug into these days:
  1. Military Special Needs Network is a phenomenal peer support for families with exceptional members.
  2. The Department of Defense Special Needs Toolkit provides parents with much needed information and apparatus for navigating benefits and resources.
  3. The National Military Family Association has several helpful insights and links.
  4. Wrightslaw has their own excellent resource page just for those in the armed forces.
  5. STOMP (Specialized Training of Military Parents) has served as a clearinghouse of information, a liaison for support, and a means for connecting parents since 1985.
  6. Numerous blogs offer experience, encouragement and empathy as they post on parenting a child with special needs while living the life of a military family.  Michelle Beau, Rebekah Benimoff, and Kathryn Sneed are just a few of the remarkable parents out there sharing on the topic.
  7. Care.com has special programming to help military families find suitable child care.  This can be critical for a parent who is desperately missing the help of their spouse.
While I am heartened by the number of options underpinning those who have given all for the service of our nation, I personally never think it's enough.  Freedom isn't free.  Come alongside these parents when you are able.  And be certain to join me in thanking those in the military and their families every opportunity you get. 

PRAY:  Father God, protector of mankind, bless and protect our men and women in uniform.  Watch over their families while they must be apart.  And pour your goodness out on these friends and neighbors who are willing to give all just as Jesus did.

Wednesday, May 22, 2013

8 Questions to Get YOU Thinking

The wise see danger ahead and avoid it,
    but fools keep going and get into trouble.
~ Proverbs 22:3, NCV ~

Major tragedies always move us to great emotion.  There is something deep inside each of us that thinks, "There, but for the grace of God, go I.".  We feel moved to volunteer, to give money, to donate blood, all to support the suffering and make a difference.  And that is the way it should be.

However, the fact remains that in the moments immediately following a natural disaster or crisis situation, we must be prepared to care for ourselves.  No government agency or benevolent organization can assure an optimal outcome like we can for ourselves.  No one can get to our location quickly enough when minutes matter.

This is especially true when there is a family member who has a special need.  First responders, government agencies and diagnosis specific groups would not even have on hand what our individual family needs in an emergency.  If we are without power, cell phone service and water, we are very much on our own.

Planning ahead is critical to families like ours.  Failing to plan could mean a death sentence when there are special needs.  While we parents of unique kids are notorious for putting off preparation because we are inundated by so many other demands, this is certainly not a risk we want to take.  Simple steps can be taken.  Resolve to spend 1 hour a week for 4 weeks, and you will be much better prepared than when you had nothing set in place at all.  Some simple questions to start with might be:
  1. What medications does my child need in an emergency?  Do I have them readily packed, so I could grab them and go in less that 2 minutes?  (HINT:  To keep all of your family's prescription names & numbers readily available, take a photo of each to keep on your cell phone.)
  2. What ancillary supplies do I need to go with my child's medications to make sure I can administer them in an emergency situation?  (ie gauze, syringes, medicine cups, bottled water)
  3. What alternate power source do I have to assist with the emergency function of any medical equipment that runs on electricity?
  4. Are everyone's medical alert tags up-to-date?  (REMINDER:  Medical alert jewelry is only effective if a person is wearing it.  Make certain you find something that your child can be comfortable wearing on a regular basis.)
  5. Where would we meet in the aftermath of an emergency?  (HINT:  Identify a marker on your property if there is a fire or other need for evacuation.  Have a key person whom you can contact to let know where you are and what your status is.)
  6. If we have to take shelter in our home, where would we go?
  7. What non-perishable food sources do we have packed for an emergency?  (HINT:  Pack food with your emergency medications.)
  8. What comfort items will my child need to emotionally cope in the short term?
These are only a few of the questions to get you planning.  Put that plan in writing.  Experts also highly recommend that your family practice emergency procedures on a regular basis.

For more sound, helpful information, we recommend visiting the Inclusive Preparedness Center website, and Preparing for Disaster for People with Special Needs by FEMA & The American Red Cross.

PRAY:  Holy Spirit, you are the source of all wisdom.  Help us to avoid danger with prudent planning.  Guide us to be deliberate as we care for our loved ones with the possibility of crisis in mind.

*Our hearts and prayers go out to all of those affected by the devastating recent tornadoes in Oklahoma.  

Photo Image Courtesy of 123RF

 

Monday, May 20, 2013

The High Calling of a Special Needs Parent


There's no doubt that it takes only a few weeks into parenting a child with unique challenges for us to realize the high demands of a special needs parent.  But how much time do we ever stop to think about the high calling of a special needs parent?  It is so easy for us to get bogged down with the difficult parts that perhaps we miss the fact that God has called each of us a to a remarkable set of purposes and plans.

To discover these traits of our calling, we need to look no further than our Bibles.  We are called to:
  1. Know that God loves us, and that He has a purpose and plan for our lives.  "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future," Jeremiah 29:11 (NIV) tells us.  Without fully realizing how very much we are loved and what good intentions God has for us, we are unable to see the remainder of the Lord's high calling for us.  It's not unusual for parents in our position to sometimes feel that our Maker might have plans to harm us.  Yet, when we come to know and accept that He truly wants nothing but the best for us, we come face-to-face with our high calling.
  2. Speak what you learned from #1 into your children's lives.  Our children can too often be battered by school bullies, unreasonable adults, their own internal craving to belong.  When our precious kids are feeling worthless and hopeless, our high calling is to pour the truth we've learned from God into them.  Comforting our children with the value and the hope that the Lord has a purpose and plan uniquely designed for them can help them see a way out of the darkness of the things they face.
  3. Reflect God's glory to a hurting world around you.  When people see the adversity we face and watching us happily worshiping God in spite of it, they stand up and take notice.  Parents like us have every reason, by the world's standards, to have a bad attitude and the bad behavior that goes with it.  Yet, when they hear us praising the Lord, and sharing the boundless ways he has blessed us, it turns their standards on their heads, in a positive way.  In this way, we meet the high calling of reflecting God's glory.
  4. Edify other parents.  Mark 2:1-5 describes this, "A few days later, when Jesus again entered Capernaum, the people heard that he had come home. They gathered in such large numbers that there was no room left, not even outside the door, and he preached the word to them. Some men came, bringing to him a paralyzed man, carried by four of them. Since they could not get him to Jesus because of the crowd, they made an opening in the roof above Jesus by digging through it and then lowered the mat the man was lying on. When Jesus saw their faith, he said to the paralyzed man, 'Son, your sins are forgiven.'” (NIV)  Of course, we know that when questioned by the Pharisees about His authority to forgive sin, Jesus then commanded the man who was paralyzed to get up and walk.  The act of kindness executed by the four friends carrying the stretcher in this story is known as "The Fellowship of the Mat".  How many times we watch other parents who are paralyzed by their struggle raising a child with special needs!  Like the four men in Mark 2, it is our high calling to carry them to Jesus when they are unable to carry themselves.
  5. Bring an awareness to the church.  Sadly, the modern Christian church has often become like an exclusive club.  As one mother told me, "They talk a good talk, but in practicality, not so much."  If I had a dollar for every parent of a child on the Autism spectrum who has been asked to leave a church, it breaks my heart to say that I would be a rich woman.  Even so, our high calling is to bring an awareness of Christ's mandate to love the weak and the sick.  Since most seminaries offer no training to pastors in ministering to those with a special needs or diff-abilities, our loving nudges and living example should not relent in transforming our faith communities.
  6. Advocate in a godless world.  This is a dark culture where transplants are denied to children because they have disabilities, or where 90% of infants prenatally diagnosed with Down Syndrome are aborted.  I love the 1966 translation of the Jerusalem Bible which states God's high calling so well, "This may be a wicked age, but your lives should redeem it." (Ephesians 5:16)  We parents of children with special needs are called to be a light in this dark age.  Merely living our lives with joy makes people rethink the notion that a life with difficulties is not a life worth living.  Our ordinary existence can assure people that every life has value.
These are ingredients that comprise the high calling of a special needs parent.  Every day we are invited to it afresh.  Live it well today, friends.

PRAY:  Majestic God, you have assigned me an incredible purpose by allowing special needs into our lives.  Holy Spirit, help me live up to the tasks you have set before me.  Jesus, show me how to love as you love.  Make my life an eloquent invitation for people to place their hope and joy in You.  

Friday, May 17, 2013

No Greater Love

The greatest love you can show is to give your life for your friends. ~ John 15:13, NOG ~

"I'm SO.DANG.TIRED" reads my Facebook status yet again.  My child with ASD is being revisited by troubles with self-regulation, keeping her from falling to sleep on her own at a reasonable hour, while her brother's anxiety has him burning the late night oil, worrying about getting caught up on homework he's missed because of another bleed-caused absence from school.  When it's not staying up too late with an insomniac, it might be being awoken in frantic crisis over a middle-of-the-night bleeding episode.  

The energy-sucking does not only come from sleep deprivation.  The 2+ hour doctor's appointments we are subjected to at least 3 times per year are enough to make the brain go numb and to require a full day's recovery to process all the information shared.  Dinner?  Want some McFood or a frozen pizza?  I'm going to bed!  IEP and 504 meetings don't do much for me either.  Multiply that by 2 children with different diagnoses, making sure the school actually honors what is in writing, and I have little energy left.  If we have a year where one of my 2 specials requires a hospital stay of some sort, you can plan on me needing the remainder of the month to even start crawling out of the mental/emotional pit.

Bottom line, I am worn.  I am tired.  I have little left financially or emotionally for the types of activities "normal" people enjoy -- going to movies, enjoying festivals, dining out.  But I am glad to lay my life down for the sake of my kids.  Okay, sometimes I am resentful, but most of the time I am glad to lay my life down for my kids.  I would jump in front of a runaway locomotive for them any day of the week just to save them.  

Not only do I know my children, but I like them.  I watch in wonder as God gives me a front row seat to watching them grow.  Amidst all of their struggles, I see their incredible qualities, hidden from the irritated school administrator or grocery store line critic.  I ponder who the Lord will grow them to be when they are adults.  There is so much potential, undeveloped leadership and pliability there!  

As I watch my kids with delight and know that they are being grown into remarkable people by their Maker, my heart breaks watching how they struggle.  Tears of bitterness fall as I wish they could be exempt from the trials they face.  "If only they could breeze through life like their peers do," I agonize.  But then, without the difficult parts, my kids wouldn't fully possess all of their amazing parts.

Perhaps that is the fuel that continues to feed my love for my children.  Watching how the Lord shapes each one as a unique and intriguing individual helps me to see that their trials are part of their formative process.  He is preparing them to be lights in a dark, dark world.  And I get the high privilege of being their mother.

I have to reschedule my hair appointment today?  Alright.  I can live with my gray showing and a misshapen head.  I just got called out of my Bible study again?  Well, I guess I get to practice what I'm learning from God sooner rather than later this week.  I scrape together the piggy bank to pay for gas in my car again this week?  Our humbling finances are not too high a price to pay for the gift of one another's lives.

I  may not be the craftiest, most creative mom who takes her children to enjoy all sort of experiences, but I can rest secure knowing that how I love my children follows in the footsteps of the Savior.  I give my life for them.  That is a pursuit that I think any mother of a child with special needs can feel deeply satisfied with.

PRAY:  Jesus, thank you for teaching me how to love.

Wednesday, May 15, 2013

Praying for YOU


We always pray and give thanks to God for you...
~ Colossians 1:3, NLV ~

In case you are one of our regular blog readers and haven't yet heard the news, our ministry has recently developed an application or "app" for parents of children with special needs to use on phones and tablet devices.  You can download this app for FREE at both the Google Play Store and the iTunes Store, depending upon the device you have.  It is a truly amazing tool.

One of the exciting parts of being able to offer this tool to parents is the fact that they can connect to compassion, encouragement and resources no matter where they are.  You can read more about the key features to the app on the post I wrote for our leadership blog.  Both this devotional blog and that leadership blog can be accessed directly through the app.

There is an amazing feature which I purposely did not detail in the leadership post.  I can think of way too many times where I was in a doctor's waiting room or sitting in a hospital with a child when I wish I could have connected to others in prayer.  The isolation of being stuck in a medical setting, trapped with my own thoughts can be awful at times.  It has made a huge difference in my personal well-being and the psyche of my children when we have known we were being prayed for or that there were others joining with us in prayer.  

I am not the only one who has enjoyed these benefits from prayer.  Myriad studies show, not necessarily increased healing, but increased ability to cope, improved quality of life and enhanced strength to fight depression provided by the practice of prayer.  Both intercession and personal supplication have been the subject of these examinations.  Those of use who love the Lord need no such studies to prove prayer's worth.

Because of the tremendous need for prayer, especially when we are experiencing the challenges or celebrations of special needs, our new app makes a prayer wall available to those who use it.  Under the section entitled "More" on the Home Page, there is a specific section entitled "Prayers and Praises".  This remarkable feature allows parents to post prayer concerns, share updates that have them rejoicing and even empowers every user to be about the work of prayer for those on the "wall".  

For iPhone or iPad users, simply touch the + symbol on the app and write your prayer, comment, concern or praise. Once your are finished, click "Submit" and it is immediately posted.  You also have the ability to "Cancel" if you don't care for what you have just written.

For Android users, when you are on the Prayer and Praises Wall, tap your "Menu" button, which will automatically bring up the "Add" button.  Click on "Add" and begin writing your prayer as described for Apple device users.  Once again, click "Submit" or "Cancel" to finish.

The amazing part is that SNAPPIN' MINISTRIES has the ability to see every prayer posted and respond to it.  We can join you in prayer or respond to comments.  Likewise, inappropriate remarks or comments can be deleted promptly.

Goodbye isolation!  What an incredible opportunity to connect to others in prayer!  What comfort to know that even as we are undergoing, others are lifting us up!  There is no need to ever be without someone who will be offering you spiritual support, no matter where you are.

Please download the app today and avail yourself of the tremendous tools God has orchestrated just for you.  It is our high privilege to be the willing conduit to make this happen for every hard-working parent of a child with special needs.

PRAY:  Lord, we give You thanks for being El Roi, "the God who sees".  You have seen the needs of parents raising children with unique challenges, and You know what tools will bless them.  Thank You for making these tools available to the benefit of so many!


Monday, May 13, 2013

I Am a Smorgasbord Mom

“Dominion and awe belong to God;
    he establishes order in the heights of heaven."
~ Job 25:2, NIV ~ 

I am a smorgasbord mom.  

You know what a smorgasbord is -- a large buffet with a wide variety of offerings.  Most of the time when you get into the line to serve yourself, you have no clue what you will end up with.  It might be a little of what you like and a lot of what you don't like, beautifully arranged and garnished with care.  Your plate may not be big enough to hold all that has been dished out for you.

Such is the life of a smorgasbord mom. It is a full display of often unwelcomed servings, beautifully displayed and garnished in the form of offspring and other family members.  The layout begins with perhaps an initial diagnosis.  That diagnosis can morph into another or several others.  Soon you have a child with "comorbid" conditions, multiple issues all setting up residence in the person you love at once.  The fun continues with another child bearing the weight of special needs.  Frequently, this loved one will represent a second helping of the first one's diagnosis...  Except when they don't.  This can mean a whole new set of issues, specialists and difficult directions in health care.  

The line at the smorgasbord isn't necessarily limited to two family members with multiple diagnoses.  It can include more children, a spouse, or an aging parent.  It leaves parents like us pulled in many, many different directions, feeling almost endlessly overwhelmed.  It's too bad there isn't any antacid served along with this buffet.

This is my life.  Thirteen years ago it changed forever with the diagnosis of Hemophilia A - Severe in our newborn son.  Little did we know that with his active bleeding pattern, his sweet demeanor would be changed by PTSD (Post-Traumatic Stress Disorder) and generalized anxiety disorder as he grew.  When we had been guests at the "banquet" for only 2 years, our third child was born.  Early in her little life, things were amiss.  Ear infections would conclude with emergency room visits as she would react to antibiotics with continued intensity.  We tried rebuilding her immune system with organic products and raw milk, but that caused internal bleeding in her brother's digestive system that bought us a hospital stay.  After the allergies came the ADHD.  Of course, then there were the allergies to all of the oral medications we tried to treat the ADHD.  Next came the Sensory Processing Disorder (SPD) and the social deficits.  Most recently, others consulting with us are thinking Asperger's might be a more appropriate label.

The smorgasbord has continued with adults in our family.  Somewhere in those 13 years I had 4 knee surgeries in 2 years time, the last being a partial knee replacement.  Three of the 4 parents belonging to my spouse and I also passed away.  The one surviving parent has had repeated serious health issues and had to be moved to assisted living whilst having a home repaired, cleaned out and sold.  

I couldn't tell you how I have survived all of this, but by the grace of God.  Surely the Lord knows what He is doing when He sets out the banquet table.  And He certainly blesses with the sweet and the salty as well as the sour and bitter.  In fact, unless we step up to that table accepting helpings of that which we dislike, we will never have the opportunity to enjoy the much more wonderful parts.

There are also incredible byproducts of that smorgasbord.  While we may have so much information to consume and too many decisions to make, we find ourselves coming through with a wide base of knowledge, able to guide others with much wisdom and compassion.  We can navigate many things with much savvy.  Our perspective is completely changed.  While others are getting uptight about life's minor things, we know better.  We appreciate God's simple gifts like no others.

Yes, being a smorgasbord mom is a unique special needs journey in and of itself, but our Sovereign God still has control over it.  He makes order out of our chaos.  I know I am not the only parent who goes through this.  I serve too many who have more than one child on the autism spectrum or several kids with different diagnoses.  And because I walk this path, I pray that I can encourage others to rest secure in knowing that if God has brought us to it, He will bring us through it.

PRAY:  Lord, even though I am dealing with many things at once, I know that you are a God of order.  I trust that you will make sense of our chaos.  You alone make beauty from life's challenges.
 

Photo Image Courtesy of 123RF

Friday, May 10, 2013

If I Had It All To Do Over Again, I Wouldn't Change a Thing

...Therefore I will boast all the more gladly about my weaknesses,
so that Christ’s power may rest on me.
~ 2 Corinthians 12:9, NIV ~

Mother's Day -- A time to celebrate the gift of motherhood.  Yet, too often in today's culture, we see this esteemed role devalued as life is snuffed out as an inconvenience.  Rather than using prenatal and genetic testing to prepare for the road ahead, too often these tools are used to opt out of raising children like mine, children considered "imperfect" by the world.  Women are given the "choice" to say, "I will not raise a child who might have serious challenges."

As I celebrate the blessings of being a parent on this special occasion, I contemplate what life would be without the 3 terrific treasures God allowed me to bring into this world.  They have 2 siblings that have already gone ahead of them to heaven.  I spent many hours on my knees praying that the Lord would either grant me a successful pregnancy or take away my fierce desire for motherhood.  How I rejoice that God's divine plan was to give me the gift of being a mom!  And I can tell you almost every detail of those pregnancies that Our Creator saw fit to bestow upon me.

While my life without these 3 children would be free of hemophilia, anxiety and PTSD; free of severe allergies, asthma, ADHD, SPD and Asperger's; free of endless medical bills and constant appointments; free of IEPs, 504s, wrestling with schools, and taming bullies; free of rude, ignorant relatives, neighbors and "friends," my days would be so utterly empty and sad.  I tend to talk out loud more about the difficulties because I need encouragement from others to endure them.  Yet, they are only a part of parenting my remarkable children.

If not for these unique kids, I would miss out on so many things.  I would not have the stories from going around the dinner table every night sharing, "What was your favorite part of the day today?".  I wouldn't have the memories of a redheaded preschooler sitting in my lap on the patio, looking up at the night sky, singing "Twinkle, Twinkle, Little Star".  I would not have the hilarious experience of listening to an 11 year old son teaching the hispanic nurse at the hospital the German that he learned in school.  I would be missing the excitement of the energetic grade school girl being the only girl on her football team, and being one of only 3 girls on her t-ball team.  There would be no family camping trips, Wii Sports, Legos, Build-A-Bear Workshop, anime or Moonlit Movies.

Without my 3 children and all of the challenges that have accompanied them, I would not so readily see God's creative majesty and redemptive power on display.  Because of these kids, I get to see 3 incredible human beings, in need of character-shaping, who will each be leaders in their own right some day.  I delight in watching my eldest carry on my love of reading and writing, already dreaming of how she will be published.  I guide my son as he contemplates career choices, trying to narrow down which of his many talents to pursue in the years ahead.  Should he be an engineer?  Go into medicine?  I laugh as I hear him dream of marriage and already decide what his children's names will be when he is a father.  I encourage our youngest as she suffers rejection, seeing in her incredible potential.  The world could be blessed to receive her as a veterinarian or gym teacher or computer game designer one day.  Regardless, I get the gift of watching her splash bright color on the lives of those who lovingly welcome her.

If I had it all to over again, I wouldn't change a thing.  Yes, 2 of my 3 children have serious special needs.  But those challenges have only shaped their character and enhanced who they are.  Life would be so much less meaningful without them.  The world would be deprived without these 3 compassionate, resilient, energetic, unique and funny individuals.  We would all be poorer without them.  

How I wish I could make those who would think themselves humane for removing kids like this understand the error of their thinking!  Perhaps the only way I can convince is by enjoying the life we lead, reflecting God's glory as a shining example.  Maybe then they will know that a life with special needs is still a life worth living indeed.  And I thank the Lord for the myriad diagnoses in our family, because without them, I would not experience the joy of being known as "Mom" on Mother's Day.

PRAY:  Father God, every good and perfect gift comes from your hands.  These children ARE good and perfect gifts just the way they are.  Thank You for the gift of being entrusted with their care.  I am so grateful to be their mother.

Wednesday, May 8, 2013

Loving the Special Needs Mother With a Pierced Heart This Mother's Day

"...And sorrow, like a sharp sword, will break your own heart.” ~ Luke 2:35, GNT ~

Mary's heart must have been excited and full as she brought her week old first born baby to the temple for his dedication.  Seeing the angel-shared prophesy come to its fulfillment in her tiny Jesus, she surely must have been full of anticipation thinking of a grand future for her son.  The Jewish people had big expectations for their long-awaited Messiah, and Mary was likely no exception.

Imagine the shock and dismay when Mary heard Simeon's words warning her of the heartbreak that awaited her.  What could possibly bring such dread after the grateful proclamation of salvation Simeon had just made?  Surely these words must have sprung up in Mary's mind as she watched her son suffer.

If you are the mother of child with special needs, Mary's pain may be very similar to your pain.  In your own experience, you live with a pierced heart.  You too have had big dreams for your child that were shifted by seemingly out-of-control circumstances.  

While so many eyes are focused on that child and their uphill battle, few pay much attention to the heartache born by the one lovingly raising such a child.  Every mother has a high calling and a selfless, challenging job.  But those whose hearts bear the scars of watching their child unjustly suffer cry out for a little more of the world's love and comfort.  

Is the average mother sleep-deprived from her child's illness?  The special needs mother has sleeplessness as a constant companion.  Does worry nag at typical mothers?  It relentlessly harasses the mother raising a child with a disability.  Are there serious decisions for every mother to make about her child's medical treatment, education and future?  Those are only a fraction of what the mother raising a child with a chronic diagnosis must face.

Not that life is a pain contest.  It's just that a mom raising a child with special needs has a heavier load, many more sorrows and much fewer of the simple pleasures others take for granted.  If she is fortunate enough to find a babysitter who is willing to watch her remarkable child, all of the medical and therapy bills may well have eaten up any funds for a possible date or haircut or vacation.  And as she faces these things, she lives in a world that expects way too much from her.

Yes, we mothers of children with a serious diagnosis may be a bit more abrasive, but can you blame them?  They are at war with the school, fighting to get accommodations which the law guarantees to our child, but educators often wish to deny.  Bullying is a constant battle and frustration.  They are at war with doctors, attempting to get accurate diagnoses and treatments for our child.  The level of frustration we mothers feel in being talked down to by medical professionals who barely know our children can hardly be underestimated.  They are at war with neighbors, relatives, churches and the like who are too quick to criticize and too slow to help with the heavy load of child rearing.

Love and compassion are the greatest gifts for the special needs mother with that broken heart this Mother's Day.  Withholding criticism, offering to watch her children to give her a break, sending an anonymous gift card for a dinner out for her and her husband, weeding her garden, including and comforting her in the church community are only a few of the simple ways to show her that you care.  Listening, I mean really listening, even if you have compassion fatigue, is a tenderhearted gift you can give this mother.  Little, simple acts of kindness are a big deal to her.  Taking the time to mentally put yourself in her shoes may be one of the most charitable things you could do for her.  It will change the entire way you view and treat her.

Whether you are the mother of child with special needs, someone closely acquainted with such a parent or a member of the society as a whole, this Mother's Day reach beyond the common warmth of this observance and pour out some extra love on the mother with a pierced, broken heart.  It cannot make up for what her child endures, but it can strengthen her for the journey and renew her view of mankind.  Even Jesus recognized this from the cross as He entrusted his precious mother to the care of the "disciple whom he loved."

PRAY:  O Father of compassion and God of all comfort, pour out an extra measure of your care and love on the mother who parents a child with special needs this Mother's Day.  She needs the superior hope and affection that only You can provide.  Help each of us to be a steward of Your care and to be Your hands and feet in pouring out that love upon her.

Photo Image Courtesy of: FreeDigitalPhotos.net

Monday, May 6, 2013

If Not For The School Nurse

"May the Lord reward your efforts! May your acts of kindness be repaid fully by the Lord God of Israel, from whom you have sought protection!”
~ Ruth 2:12, NET ~

The kids are filling her office before she barely has both feet in the door each morning.  She should be wearing a super hero cape for the number of kids with chronic illnesses she cares for on top of the typical sneezes, sniffles and nausea each day.  Medication schedules and interruptions for asthma inhalers rule her day.  And if you want to know what is causing the latest wave of absences, she can tell you.  She is our school nurse.

We have been blessed by one of the finest school nurses in the nation at our intermediate school.  Denise has grit, wisdom, compassion and comedic relief all resulting from her law enforcement, nursing and parenthood experiences.  While many school staff might be fearful of dealing with someone who has a diagnosis like our son's, we have been blessed to have a health room leader who assists both us and our kids with warmth and confidence.

To tell you the kind of person Denise is, let me share with you how she saw us through after our son's hospitalization last year.  Confined to a wheelchair and equipped with a PICC line in his arm, we needed to get him assimilated back into the school setting.  Denise met with myself, our son and the vice principal to discuss what his needs were and how she could see him through.  She brainstormed with us, even offering him safe haven in her office and a trial run on a half-day of school.  He couldn't participate in vigorous physical activity lest he cause himself a reinjury.  Yet, he needed mild activity to prevent atrophy.  Denise worked at having either herself, another staff member or even a student get our son out of the wheelchair, slowly walking the halls of the school while the others were at recess.  She checked his PICC line once a day to assure there were no signs of infection.  And when he accidentally strained his arm with the line in it, and felt the need to call home, she endured the harsh scrutiny of the district nurse who acted like Denise knew nothing of what she was doing.

The care of this school nurse has truly been life-changing for a family like ours.  Certain diagnoses can be confining, debilitating and isolating.  Our school nurse has offered us the ability to normalize life as much as humanly possible, and she does it as if it is just a matter of course.  We love her to pieces!

May 8, 2013 is National School Nurse Day.  This observance always falls on the Wednesday of National Nurses Week, which was first proclaimed by President Richard Nixon back in 1974.  Subsequently, President Ronald Reagan proclaimed "National Recognition Day for Nurses" to be May 6, 1982.  These dates being based around both the birthday and mission of Florence Nightingale, the American Nurses Association then permanently designated May 6 - May 12 to be a week of recognition to honor those in the profession back in the 1990's.  The tradition continues to this day.

An indispensable, key member of any special needs family's team, nurses (and the school nurse in particular) should be someone we go out of our way to remember and thank.  Here are some simple gestures to show our appreciation:
  • A personal certificate in a picture frame along with some baked goods or candy show you care.
  • A poem or picture written by your child is a thoughtful expression of love.
  • Gift cards for gas, her favorite place to shop or even a dinner out can be a surprise luxury.
  • A homemade gift basket with goodies just to pamper her can be memorable.
  • Hand-picked flowers from your garden or a simple bouquet from your grocer are sweet.
  • Humorous items such as funny/unusual gloves, masks or bandages along with a card can even recognize the day.
  • For more ideas, visit out Pinterest board for "Thank You Gifts"
Whatever you decide to do, make certain that you acknowledge the value of that school staff member whom you and your child could not do without.

PRAY:  Lord, bless our school nurse.  Thank You for how she watches over our child during the school day.  Help her to know how very grateful we are for her care. 

Photo Image Courtesy of 123RF

Wednesday, May 1, 2013

The Ball-and-Chain of My Smart Phone

 He said to all of them, “Those who want to come with me must say no to the things they want, pick up their crosses every day, and follow me."
~ Luke 9:23, GW ~

"Out of Courtesy, Please Turn Off Your Phone," the sign at the dentist's office admonishes upon my arrival.  I know that I cannot adhere to the request.  I make certain that I explain my noncompliance to the hygenist, so she doesn't think I'm just being an obstinate patient.  A week later, the pediatrician sighs in disgust as I answer my mobile phone in the exam room.  I understand his reaction.  After all, he also has a sign on his office door, "Please Be Courteous And Turn Your Cell Phone Off!"  Yet, that hematologist who is essential to this ongoing pediatric appointment is finally calling me back.

For the past 13 years with a medically fragile child, I have carried the ball-and-chain of a mobile phone with me wherever I go.  This has become an essential tool for raising a boy whose chronic diagnosis can bring us to the crossroads of life and death at a moment's notice.  Like a volunteer EMT, my husband and I are on call every hour of every day.  

Being the mother, I am the first line of defense.  Despite the fact that I work full-time, my job allows for much more flexibility than my husband's.  I am also the one who takes the children to their myriad doctor appointments, dental appointments, emergency room visits and overnight hospital stays.  That makes me the triage and charge nurse of the household.

My husband can and does fill in during my absence, but frankly, he would rather not.  He is so overwhelmed with his work load at the office, while also wondering how he will ever earn enough to pay all of the looming medical bills.  I want to be sensitive to this, so I try not to ask for help unless there is no other way.

Alas, I stay chained to that darn phone.  When our son was little, we would be hunted down by the babysitter on that rare occasion out because of something as inconsequential to others as a bloody nose.  As he reached school age, I developed PTSD symptoms around seeing that glaring school district phone number Unknown 262-560-XXXX alerting me on my droid.  The reflexive reactions of my heart and my stomach have always surged as the phone rings and that number flashes.  "Hi, Barb.  I think you had better come get him.  They were doing this warm-up in gym and..."  It doesn't take much, or necessarily anything at all, for a child with severe hemophilia to start bleeding internally.

While I know the smart phone is a blessing, giving both our son and ourselves greater freedom, I hate always being tied to it.  I love that he can develop greater independence, riding his bike down busy streets, texting me that he has safely arrived once he is at his destination.  But I wish I could turn that cell phone off in the dentist's office.  I wish I wouldn't get that emergency phone call while I'm enjoying a rare minute away to get a haircut.

Despite the fact that others might view me as heroic or entitled to a break, there is still an incredible amount of selfishness inside of me.  I don't want to say "no" to myself.  I want to be carefree.  As my son's warrior mom, triage nurse, and own personal EMT, I will never be carefree.  My life will always be like walking through a mine field wondering when the next crisis will explode.  But rather than facing this challenge with the resolve of a good soldier who has been chosen for an involved special mission, I all too often wallow in discontent.

Because of my worldly nature, I am in constant pursuit of spiritual growth.  It is only in clinging to the Holy Spirit that I can develop the ability to surrender my will for God's.  Only through the eyes of Jesus can I see taking up my daily cross as the gift that it is.  The privilege of parenting my remarkable children can only be fully appreciated through a heavenly mindset.  The Lord alone gives me the ability to deny self and fix my eyes on something infinitely better that He has planned for me.  In the immediate term, it may not always seem better, but in view of eternity, it most certainly is.

I know that I am not the only parent who struggles with being held captive by a child's special needs.  I'm not certain that necessarily makes it better.  But I do know in love and wisdom, we can encourage one another to always do the right thing.

PRAY:  Father, not my will, but your will be done.

*Do you live in the State of Wisconsin and have a child whose emergency care you want to assure in your absence?  If so, please consider the Patient at Risk Program.  This innovative tool allows parents to make their child's information readily available to emergency medical personnel when a parent is off site.  This tool can be critical when seconds count!
 

Photo Image Courtesy of 123RF