Tuesday, August 31, 2010

Beyond Comprehension

"Just as the heavens are higher than the earth, so my ways are higher than your ways, and my thoughts are higher than your thoughts."  (Isaiah 55:19, GWT)

There are certain things in this great big world that will just never make sense to us.  As parents of  kids, with special needs we already wrestle to understand why a loving God would allow our children to suffer the way they do.  But the trials of parenting a child with difficult diagnoses does not necessarily exempt us from further difficulties.

I recently returned from a vacation to receive news that a loved one is facing some new challenges with their cancer treatment.  It took me to a place I have been more times than I care to admit at my young age.  I have grieved at the funerals of at least two special needs moms and one of our faithful volunteers in the first decade of this ministry.  Another of our mothers recently saw her young daughter relocate to her home in heaven, way too soon by our standards.  Such unspeakable anguish can't help but leave a person reeling and wondering why!  Haven't these people been through enough?  How could God allow such things?

The only way we can find peace in such awful turmoil is by trusting in our loving God.  He assures us that His ways are beyond our comprehension.  This gives me confidence that there is some positive purpose for all our bitterest grief.  Jesus alone fills me with the hope that, "our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." (2 Corinthians 4:17, NIV)

I must encourage you that in each of the situations I have mentioned above, God was glorified!  While two of the deaths were very sudden, others bore the hallmarks of humor, endurance, growing in faith and increasing value in what was truly important.  Even the families mentioned who experienced the shock of sudden loss praised God and had their vision set towards heaven through their tears.  They were all living testimonies that our response to tragedy can be a light in this very dark world.

As I share the grief in my heart with you today, I would like to spur you on to a hope that goes far beyond the circumstances of today.  There is so much we don't see or know that God is working out in the heavenly realms.  And when we get to heaven, the beauty of His unveiled purposes for every heart ache will overwhelm us with joy.  I leave you today with a poem that I post every now and then that has been a great encouragement to me over the years:



~The Weaver~

My life is but a weaving between the Lord and me;
I may not choose the colors, He worketh steadily;
For He can view the pattern upon the upper side,
While I can see it only on this, the under side.

Oft times He weaveth sorrow, which seemeth strange to me;
But I will trust His judgment, and work on faithfully.
'Tis He who fills the shuttle; He know just what is best,
So I shall weave in earnest and leave with Him the rest.

Not till the loom is silent and the shuttles cease to fly,
Shall God unroll the canvas and explain the reason why -
the dark threads are as needful in the Weaver's skillful hand
As the threads of gold and silver in the pattern He has planned.

~Author Unknown~

Friday, August 27, 2010

The Music of Laughter

"He will yet fill your mouth with laughter and your lips with shouts of joy."  (Job 8:21, NIV)
If you've followed this blog for any amount of time, you know what a great fan of laughter I am!  In fact, the talk I've given the most around this great land is on the healing power that laughter holds.

But one point I can never emphasize enough is that daily chortles are a requirement for living a life with a child who has special needs!  Over the years it has become not only an essential stress reliever for me, but lack of it has become a barometer which indicates I've neglected to adequately care for myself emotionally.

There are so many serious issues we face as parents.  The grave nature of many special needs can be extremely heavy for our children as well.  They are forced to grow up too soon through disappointments, fears, treatments and pain.  Death can be a very real concern for some of them.  Our stress and their stress can end up feeding off of each other in a vicious cycle.  We are "hard pressed on EVERY side"!  (2 Corinthians 4:8)

Yet, the Light of the World shines through as we guide our families in age appropriate ways through these trials.  One of the ways we can guide them and ourselves through the pain is to laugh in the face of it.  For example, I have discussed with MANY parents groups the disgusting travail of dealing with toileting issues in kids with special needs.  It can wear a parent down in big ways.  But if we turn that challenge into a joke (one mom sings the "Roto Rooter" song in her head as she deals with her daughter's issues), the burden suddenly becomes lighter.  I've often joked myself at the stinging comments or stares I get when my son with hemophilia is sporting unusual bumps or bruises.  "Yeah, go ahead and look!  If you think he looks bad, think of what you'll look like after I get done with you!"

Laughter doesn't have to be tied to the special need.  Croquet is a silly tradition originating from my husband's side of the family.  Every time we get together with his extended family the tournament must be held!  Our immediate family has even taken up the habit of playing it every time we camp.  There's no way we can get through this goofy sport without cracking up!

Laughter bonds us together as family no matter what we may face!  As I reflect on the days past, my best memories always include something ridiculous that brings me joy.  Even the inappropriate remarks of my youngest daughter with special needs are hilarious in retrospect.  As I look forward to the days ahead, that gift that God blesses us with is something that helps minimize any hard times we may have to endure.  Laughter is the music of life that rings throughout the past, harmonizes the present and ushers us into the future, creating perspective in darkness and joy that makes life worth living.



Tuesday, August 24, 2010

Overcompensating

 "Don't fail to correct your children.  You won't kill them by being firm and it may even save their lives."  (Proverbs 23:13-14, CEV)

It seems inevitable, but we parents so often seek to remedy things when our children suffer through the "unfair-ness" of life.  It just doesn't seem right that our children should have to grow up too soon by facing things like tough medical treatments or surgeries, discrimination or even facing the worry of death.  In our heartache, we try to balance the scales by seeing our kids worthy of some huge reward for all they have to endure.  Spoiling them rotten with toys, treats and outings can seem only natural when they endure and are forced to understand things that would cause even most adults to faint.  We may even refrain from disciplining them, offering them an "out" that we wouldn't offer kids who are unaffected or healthy.

This is commonly known as overcompensation, and I've done it myself.  In fact, my hilarious friend Tony Piantine who runs Camp Daniel in Athelstane, WI often jokes with my eldest, neurotypical daughter that the two of them are going to run off to McDonald's together to make up for all the times they've been slighted when their sibling with special needs got to go.  Tony's brother, Dan, surrendered his battle with a neuromuscular disease for a heavenly home in 1994, while our daughter still lives with a brother who has hemophilia and a younger sister who has several diagnoses including ADHD, severe allergies and sensory processing issues.  Despite the span of time, our eldest can certainly relate to the memories our friend has of his disabled brother.

How challenging it is to not tilt the scales towards showering our kids with all that delights their hearts when they face the injustice of awful suffering!  I would much rather have it be me than them who is subject to painful tests, treatments and countless hospital visits.  My heart aches right along with theirs as they battle to have a reasonable life.

But when all is quiet, and I'm steeped in God's word, I must admit the truth.  God never promised a picnic in this life.  In fact, Jesus promised, "In this world you will have trouble.  But take heart!  I have overcome the world."  (John 16:33, NIV)  So why do I try to make this world heaven for my special kids?  There's something that God hard-wired into mothers that makes us quick to protect and defend our offspring.  But that must be balanced out by teaching our children coping strategies and how to navigate through life's difficulties.

If we sincerely believe the truth of Romans 8:28 that God can and will use everything for the good of those who love Him, then we need to couch that overcompensation.  We need to use this opportunity to shape our kids to reflect His glory in powerful ways that an adult never could.  That can only happen by balancing the extra TLC our kids may need with the proper discipline that they require.  Every child, no matter what their level of challenges or abilities needs to be taught love of others, kindness, teamwork and pushing oneself a bit.  That may look very different in each child, but it's essential to their growth into a well-adjusted adult.

Let's also be honest that no one likes a brat!  And when our kids always get their way, get every little object their hearts desire, this is what they become.  How does that endear them to those who don't understand the disabled?  Does that reflect light or darkness?  It's certainly not a positive way of recycling pain.  Instead, it makes the ignorant feel righteous in their faulty beliefs that we get what we deserve and we're nothing like them.

The next time you feel that knee-jerk reaction to give in to your child with special needs, remember a few things.  First, remember God loves that child even more than you do (Matthew 7:11).  He's even numbered the hair on their heads (Luke 12:7), which is certainly more than what you've done in love as their parent.  Next, take seriously all of God's mandates to raise that child up in a responsible way.  (Proverbs 22:6)  His or her adulthood depends on it!  And God saw fit to make you the steward of that precious gift.  Finally, remember that God never says in His word that you will take away your child's ever tear or sorrow.  "He will wipe away every tear from their eyes.  There will be no more death or mourning or crying or pain, for the old order of things has passed away."  (Revelation 21:4, NIV, emphasis added)

Friday, August 20, 2010

Order


"For God is not a God of disorder but of peace..." (1 Corinthians 14:33, NIV)

I don't know about you, but there comes that time every year when I'm ready for the kids to go back to school. It's not that I don't love being around my children or doing things with them. Summer is a treasured time of building memories through fun activities as a family. There are less stringent obligations and more adventures together. And even during the holiday break there are delights that we can indulge in, like staying up late or all-day visits, that we wouldn't be otherwise be able to partake in during the school year. But there's something greatly lacking during that time off.

Even when we were homeschooling, there was definite structure to each and every day. There was a schedule, and that schedule actually brought freedom. We were free of chaos and the stress of continually being on the go. We didn't have so many places to be because our place was in school. That is no less true with our children back in public school. Bedtime, waking time, the beginning and end of the school day, meal time and extra activities all had a regulated place on our daily calendar. Those boundaries brought a great relief to saying "yes" to some things and "no" to others. Each day had clear time lines to it.

This was particularly helpful to me as a mother who is officed in her home. When an individual has an office in their house, they can work all hours of the day or night when it's quiet. However, when there are young children and a new puppy added to that home, all bets are off with the structured work schedule. Summers and holiday seasons, while fun, are extremely stressful for me on the job front. My usual juggling act suddenly has a few more balls thrown into it!

When I feel the guilt of longing for the order of those school days, I take comfort in knowing that God isn't all that fond of my summer chaos either. While our Lord certainly isn't an inflexible legalist, He knows that He created a certain pattern to life for our benefit and His glory. We are happiest and He is most magnified when there are routines and boundaries creating a certain rhythm to our lives.

Doubt what I'm saying? Just read Genesis 1 in the Bible and see the order our Creator put to all He made! He separated water from land and sky; distinguished between different fruits, vegetables and trees; and fashioned various species as well as genders. If that's not order, I don't know what is!
If having a certain tidy, managed pattern is this important to the God of the Universe, shouldn't it also be of value to us? Again, I'm not implying that we should be rigid in our schedules, but having some regular groove is worthy of our attention. Our sense of overwhelm and stress are noticeably improved when we are keeping our lives reasonably organized and under control.
When the idea of merely having the kids back in school is not enough to restore your sense of routine, I recommend enlisting the aid of a certified life coach. While every major city in this country offers some type of local CLC you can connect to, one of my favorites is Joan Celebi of SpecialNeedsParentsCoach.com. When money is a concern, Joan offers tools you can use in your own home that are practical and inexpensive. Besides that, she is the parent of a child with special needs herself, which offers a great frame of reference in offering advice.
Regardless of how you go about it, take some time in the next month or so to enjoy the restoration of that protective hedge in your life. After all, parents whose children have special needs experience enough surprises and chaos throughout the year to keep life plenty interesting!

Monday, August 16, 2010

The Comfort of a Mother


"As a mother comforts her child, so I will comfort you..." (Isaiah 66:13, NIV)

A sweet friend of mine received the serious diagnosis of cancer this year. Faced with the grueling treatments of radiation, chemotherapy and surgery, her dear mother has traveled from another state to be there by her side. Her presence has not only given much needed aid at home, but it has also given great moral support and comfort.
Last week I had the opportunity to discuss this sort of unique encouragement with a group of 40 mothers at a day camp as we studied an entry from Jolene Philo's A DIFFERENT DREAM FOR MY CHILD for our Bible study. The entry we read shares how Philo and her husband discover the importance of touch when their newborn son is hospitalized with difficulties. She ends her passage by asking readers to consider what sort of touch expresses their love and soothes their child.
Of course, since touch is often an issue, this struck a cord with each of the mothers who had a child on the autism spectrum. Some shared the value of deep pressure massage, craniosacral therapy or even a scented bath. Those whose children were overcome with anxiety also found this to be a pertinent discussion. In the end, no mother could deny how important their touch was to their son or daughter, no matter what the diagnosis was.
The conversation widened as I shared with the mothers that "touch" may come in different forms. It may be your tender words that calm your child. Time spent together doing an activity your child loves may be a precious way you touch your child. Or it may just be your presence in the room that makes all the difference.
Regardless of how it comes, isn't it amazing that this is on the radar screen of the God of the Universe? He even uses our behavior as mothers as the standard by which He shows His own lovingkindness to us! In fact, it is His very Spirit that acts in and through a faithful mother to impact and shape a child's life.
When you are feeling inadequate, as we mothers so often do, pull away for awhile and reflect on the amazing comfort that only you as a mother give to your child. Whether age 4 or age 40, no ones presence can bring us tenderness quite the way our mother's can. God has given you the exceptional gift of being the one person who can not only offer your child groundedness, but also help your child to thrive. When life's challenges arise, God smiles, not because we are perfect as parents, but because we make His presence known to our offspring by merely being present to them. For your child, you are the very embodiment of "the God of all comfort".

Tuesday, August 10, 2010

Distance Makes the Heart Grow Fonder???


"Every time you cross my mind, I break out in exclamations of thanks to God. Each exclamation is a trigger to prayer. I find myself praying for you with a glad heart... He (God) knows how much I love and miss you these days." (Philippians 1:3-4, 8, MSG)

Life with a child who has special needs is an endurance game. There are many days where we parents would like to pack it in and hand it all off to another person to take care of. As much as we love them, our children's behavior can wear on our last nerve. Additionally, the demands of running to doctors, dealing with schools, visiting therapists and giving treatments at home can all dissolve our vigor. When we find ourselves at this place, it's time to pull away for a bit.

We parents are great at playing the martyr and stating that there is no way we can find a minute apart from the kids. I rarely see instances where this is absolutely true.

The first step in pulling away for refreshment is letting go. Believe it or not, God has your child's best in mind. As much as we parents would like to think that we're the only ones capable of caring for our child, they will do fine with others looking after them. Our mindset must transfer to the fact that it's okay if another caregiver doesn't do things exactly like us; our child will be fine. This opens up the possibility for us to withdraw, leaving a spouse, a nurse, a respite worker, a camp counselor or another competent individual to step in.

If we are able to let go, we can find a wide variety of ways to spend some time at a distance from our children. Initially, it make take the form of one night a week taking a couple of hours to go read at the library or window shop at the mall. From there it may transform into taking a weekend away with a friend or a spouse. After that it can even graduate to sending our kids away to a week at camp or leaving for a week-long vacation ourselves.

Once we are able to "come apart before we come apart", we not only find restoration, but a new view of the children we care for. In the quiet of distance and lack of demands, we may find ourselves missing the charges we are subject to every other day of the year. We suddenly have time to reflect on all we love about our children. By the end of our little respite, if we didn't feel it before, we may find ourselves with a deep longing to return to those precious young people. The fog lifts and we can suddenly realize what a tremendous gift has been entrusted to our care.

This week my husband and I dropped two of our children at a hemophilia camp hundreds of miles and several hours away from home. The one remaining child is attending a local day camp for children with special needs. Of course, for us none of this would be possible without generous scholarships. I find myself grateful that not only do each of our children get to enjoy unique adventures and experiences, but I also get a break from the intensity of their care. I smile as I think of them and wonder what they're up to all day. Even when I got a call with a question from the hemophilia camp less than twenty-four hours after drop-off, I snickered when I realized my precocious son was in good hands. This time apart is just another part of the life experiences that will shape who they become over time. I miss them, and I know it will be a remarkable, joyful reunion at the end of this week!

Thank God that there are things like scholarships, charities and programs out there to offer us breaks regardless of our financial status! We each need to get creative in our thinking and keep our eyes open for these opportunities to spend some distance from those we care for. Please, don't hesitate to use these good gifts that the Lord has placed in your life! You will find yourself to be a better parent for it!

Friday, August 6, 2010

Sweet Sleep!


"I can lie down and sleep soundly because you, Lord, will keep me safe." (Psalm 4:8, CEV)

The entirety of Psalm 4 is a prayer of great distress and frustration while still praising the Lord. Scholars believe that King David wrote this psalm at the time he was fleeing Jerusalem from his son Absalom's government takeover. Imagine the absolute exhaustion a person would feel not only from fleeing for their life, but also by being done in by their own son! Still, David leaves good insights for weary parents like us.

Step one: Call out to God in your times of trial. He's there to hear and answer your every prayer. The answer might not always be the one you want to hear, but He will address your concerns.

Step two: Develop a relationship with your Maker. Get to know the value of following Him and His ways. As you grow in intimacy with the One who desires to know you and be known, you will experience of joy in spite of troubles.

Step three: Experience refreshment of your soul during any stretch of life. David was able to get restful sleep regardless of his circumstances. God will allow you no less when you cling to Him.

Let me zero in on the sleep portion of this, which can be especially problematic for those of us with children who have special needs. Be assured that there are certain things you can do to cooperate with the Lord who wishes for you to be refreshed, not burned-out.

Frequently, kids with given diagnoses will have major sleep problems. Keep that child in a routine. Use relaxation tools of every kind like warm baths, soothing massage, gentle music and deep breathing to help them settle in to sleep. When your child sleeps well, you naturally sleep better. Keeping them out of your bed is definitely helpful too. If you are in a stretch where your child is not able to sleep through the night due to illness or other bumps in the road, take any help you can get so that you can restore yourself with naps or other breaks of refreshment during the day.

Parents of kids with special needs have worries to spare! Cooperate with God by parking your worries at the door before bedtime. Often, writing concerns down on a list or keeping a journal can help you do a "worry dump" instead of staying up all night, tossing and turning with fears. The same relaxation techniques used for your child can be used for you. Add to those tools the power of distraction whether it be a humorous tv show, a good book or best of all, God's word, and your mind will be pointed in a less stressful direction allowing for more refreshing rest. Memorizing verses like Proverbs 3:5-6 can be a calming meditation.

Finally, a child with special needs definitely adds to the work on our daily list. Get better at planning so that you are not up late at night. Experts agree that quantity of sleep is essential to adequately recuperate. Commit to a set bedtime for yourself and shoot for that goal. The dirty dishes or un-vacuumed carpet isn't going to grow legs and walk away. It will keep until you have time to get it done. And as you frequently hear me say, "Good enough is good enough." Your priority must be taking that refreshment of sleep that God intends for you.

How faithful our Father is that He allows us to sleep in peace despite our trials! Now be certain to take advantage of that!

Tuesday, August 3, 2010

Where Can I Go?


"My soul thirsts for God, for the living God. When can I go and meet with God?" (Psalm 42:2, NIV)

There are days where I want to run away from home. The relentless needs of my family give me little, if any, time to regroup. I jokingly say, "Everybody wants a piece of me, man!" But inside, I feel like my head is being held under water with no one letting me up for air.

There is one thing that helps me overcome that feeling. It is my time with God. Only the Lord can help me with the demands of parenting children with special needs. He fills me up so I can be poured out. He carries me through the tough times. And His presence is my peace.

This time is so necessary that I have devoted myself to making certain it happens every day. When there is a period where I can't have that oasis, it becomes very noticeable in my life. I'm thrown off kilter and my mood deteriorates. Because of this, I have found that the moments at Jesus' feet are non-negotiable. And it is something I would encourage every person to discover.

So many people feel lost at the thought of any such meditation. Therefore, preparation before you start can be helpful. Certain things make for a more rejuvenating time with God:
  • Meet Him first thing in the morning. Let Him get you off on a right start. God blesses you when you put him first in your life. And giving him the first part of every day is a great way to make it known that He is your primary focus.

  • Meet Him in the quiet. Our days are filled beyond capacity with the noisy demands of parenting. We can be too easily distracted even with the background sound of having the news on. Some of my favorite quiet times are in nature, on the patio, on an early morning walk or in the woods when we're camping. My spirit is then open to hearing what God has to share with me.

  • Meet with him in a special place. When it's warm out, my sunny patio with views of the blue sky and lush surrounding greenery is my special meeting place with God. I feel His presence there and almost hate to leave as the day carries on. When the weather turns cool, I have a special chair in the living room where I have a beautiful view out the windows, paintings of gardens and statues of angels that all naturally make me contemplate the One I'm meeting with.

  • Meet Him with the right tools. A translation of the Bible that you can read and understand is a must. I've heard people share a humorous little acronym for Bible: "Basic Instructions Before Leaving Earth". But I prefer to see it as God's love letter to us. His word is so rich with loving, merciful insights. Your time wouldn't be the same without His word to refresh you. Some people also find devotional books helpful as well to enhance their understanding or the practical application of God's word.

  • Meet Him in a special environment you've created. The word "holy" or "sanctified" means "set apart". Make your setting with the Lord unique in a way that feeds your soul. Perhaps it's with candles. I love candles not only for their peaceful glow, but also because they have signified the presence of God throughout Christian tradition. And I dare not have these lit when the children are bouncing around the house! Other things like a lovely journal and fancy pen, a soft blanket, flavored tea or coffee help make your time with God extra sacred. You go all out when guests come, why wouldn't you do the same for the Lord of the universe?

These are things that will fill your cup when practiced on a regular basis. We must be deliberate in carving out that time each and every day or we will reach a breaking point. We were not made to be constantly drained without being replenished. But we were made to have fellowship with our Creator!