Tuesday, June 29, 2010

Life, Liberty & The Pursuit of Happiness

As this 4th of July quickly approaches, I thought this post from last year was worth publishing once again:

It is absolutely clear that God has called you to a free life. Just make sure that you don't use this freedom as an excuse to do whatever you want to do and destroy your freedom. Rather, use your freedom to serve one another in love; that's how freedom grows. For everything we know about God's Word is summed up in a single sentence: Love others as you love yourself. That's an act of true freedom. If you bite and ravage each other, watch out—in no time at all you will be annihilating each other, and where will your precious freedom be then? (Galatians 5:13-15, MSG)

If you look at international strife in our current days and throughout time, you will see a long history of various forms of tyranny. Going far beyond moral codes of conduct and laws for public safety, mankind had invented new ways of enslaving and imprisoning populations for ethnicity, religion, philosophical beliefs and societal differences. Unspeakable horrors have resulted as dictators financially oppress their citizens and torture any who would disagree with or disobey them.

Knowing this, we should be far more grateful for this little 225+ year experiment in freedom we call America. We enjoy so many liberties that others crave, such as freedom of speech, freedom of religion, the right to own property, a voice in our government and self determination. We have programs and services galore for the less fortunate that are sadly lacking in too many nations. Our fulfilling pursuit of happiness continues to draw countless immigrants to this land.

However, as the saying goes, "Freedom isn't free." While that's usually pronounced in the context of the faithful men and women who have given their lives for our nation, it goes a bit farther. Our freedom calls us into a great accountability. God reminds us that we are not to use that freedom to run roughshod over others, but to live in community as Jesus exemplified. "Our Constitution was made only for a moral and religious people. It is wholly inadequate to the government of any other," pronounced John Adams in 1798. When we have politicians (of any party) and individuals (of any vocation) drunk with power and thinking they know better than the people they serve, that country's freedom is at risk. When the life in "Life Liberty & the Pursuit of Happiness" doesn't honor the lives of the weak and voiceless in the population, that nation's freedom is in peril. When citizens disregard their call to generosity, kindness and service, making only the government responsible for these mandates, that land has already begun to relinquish a good portion of its freedom. When self is god above all else, hedonists discriminate as to which citizens will have freedom and which citizens will be denied.

The next time the word "America" crosses your lips, think of all the responsibility that comes with the privilege of citizenship. If each of us would look to improving the way we use our freedom rather than pointing at public figures, what restoration we would bring to "Life, Liberty & the Pursuit of Happiness"!

Friday, June 25, 2010

Second Class Citizen

"Energize the limp hands, strengthen the rubbery knees. Tell fearful souls, 'Courage! Take heart! God is here, right here, on his way to put things right and redress all wrongs. He's on his way! He'll save you!'" (Isaiah 35:3-4, MSG)

I think one of the hardest things about having a child with special needs is when people treat you like a second class citizen. The stark difference between benefactor and patient slapped me across the face with such force when our son was born, and it's a story worth sharing.

Because I have two nephews with severe hemophilia, I had been an active volunteer and benefactor in the bleeding disorders community for over a decade before our son was born. We attended gala balls, were wined and dined on yachts or at private parties. We had the ear of key people in the community. But the drastic change in behavior of one key individual when our son was diagnosed with hemophilia himself completely shocked us. We were no longer treated warmly by that person because we were now... a patient! I won't go into all the unkind things that took place, but it was shocking to us. In fact, it even resulted in a sabbatical from volunteering for a few years.

While awful, this is just a caricature of what seems to happen to families when there is a diagnosis of their child. Whether it is the condescending treatment by a doctor or the heavy judgment of a neighbor, we can find ourselves being demeaned in a variety of ways. Even those who are supposed to be raising funds in our names and our children's names have been known to address us as "you people". And getting the schools to comply with the law almost always puts us in an "us/them" struggle.

It's so easy to get discouraged! I hate being treated like we're just a dumb patient or dumb parent who is worried about nothing. I loathe being made to feel like I have to grovel to get the aid we need to care for our son. And I still grieve the friends I've lost because they can't handle the chaos or abnormality of the life we live.

What a blessing it would be to be treated with comfort and compassion instead of insults and exclusion! While the wider world may not have the heart for our community, this is something that we can provide to each other. The value of connecting goes far beyond sharing a simple resource. We have a place where we don't have to feel like a second class citizen. We've all redefined "normal" in our lives -- if there actually is any such thing! We have some idea of what it's like to walk a mile in each others shoes. We don't have to explain ourselves or feel like people are judging us. There is empathy for what we are enduring.

That support we can gain from each other in a hostile world is just one expression of God's care for us. We can feel strengthened knowing that when the world is unjust, He is on our side! The Lord loves "the least of these" and wants the world to do the same. Nevertheless, this is a sinful, fallen world, and we are only passing through here. Being mindful of that often keeps me going. I know that when I stand before God all wrongs will be set right. And I praise Him because I am "fearfully and wonderfully made" in His image! I'm NOT a second class citizen, neither are my children. He gives me infinite value, and those who treat us otherwise are nothing but fools.

Monday, June 21, 2010

Why Can't We All Just Get Along?

"My prayer is not for them alone. I pray also for those who will believe in me through their message, that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me. I have given them the glory that you gave me, that they may be one: I in them and you in me. May they be brought to complete unity to let the world know that you sent me and have loved them even as you have love me." (John 17:20-23, NIV)

We can accomplish more together than we can individually. Common sense would dictate that. Yet, day after day I witness with great sadness plenty of divisiveness and in-fighting within the special needs community. It never ceases to frustrate me and break my heart when I see people expending so much energy in an area that is so completely useless.

It's not to say that we have to agree with everyone on everything. Debate can stimulate great examination of an issue, pondering of the details and thinking through an outcome. Vigorous conversations can be essential in getting some amazing things done. But we can disagree without being disagreeable.

Throughout the year, I get numerous phone calls and e-mails regarding quarrels going on between people that have a great deal in common. There are the individuals in the autism community who are divided because some believe that immunizations truly are a cause of their child's diagnosis while others think that possibility has been totally eliminated. The two factions look upon one another with contempt. There are the people with severe hemophilia who think those with any other bleeding disorder in no way have it as bad as them, so they view themselves as superior in some way. There are the people on committees who can't agree on an approach to dealing with a problem situation, so they go at destroying each other instead of the problem. And there are those who are jealous and disgusted with families who have more financial security than they do. There are even those who hate others in the community who refuse to use "people first language" when addressing a particular diagnosis.

All of this can amount to a tremendous amount of cannibalizing of each other when we should be uniting in battle. We become our own worst enemies. A physician at a recent conference I attended mentioned how "fractured" the particular community was, thus, making it difficult to conquer the social crisis at hand. How well put and what an awful insight!

God's intent for our lives is to join in unity. Our troubles are meant to be recycled in order to bless one another. (see one of my favorite, oft-quoted verses 2 Corinthians 1:3-4) We are meant to find common ground an pool our energies towards a positive outcome. Being polite grown-ups, learning to hold our tongues when an issue is not "life or death", and seeing others hearts instead of their sometimes clumsy actions will take us far!

Our true enemies are not one another, but injustice, exclusion, intolerance, fear. Our energies should be expended on tenderly educating the ignorant, firmly fighting the unjust, breaking down fears and exclusion by being approachable and welcoming. We can change our world and our children's future in such positive ways when we come together!

Next time you get frustrated with another in the special needs community, offer them mercy, grace and a listening ear. It will take a great amount of self-control to do it, but you may be surprised how far it carries you. Treat others the way you would like to be treated. And realize that you have more in common than you have differences. And when you reach that place of peace, know how much you make God smile. After all, He tells us: "How good and pleasant it is when brothers live together in unity!" (Psalm 133:1, NIV)

I encourage you to use this song as a meditation for making this your new mission: http://www.youtube.com/watch?v=ay7fMkreT98

Friday, June 18, 2010


"Which of you fathers, if your son asks for a fish, will give him a snake instead? Or if he asks for an egg, will give him a scorpion? If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!" (Luke 11:10-13, NIV)
My father-in-law left us this year. We miss him terribly in a number of ways. I laugh to myself so many times as I recall funny comments he had or things he did. One of them was the comment he made, shaking his head, astonished at watching my husband with one of our kids. He said, "Back when we had kids, I didn't do all that stuff you guys do now. I think I only changed one diaper in my life." He looked relieved!
My own father also shares that type of experience. In fact, I laughingly assured him, when I was pregnant with our eldest, that he should be glad he wasn't born in the era where he had to attend breast-feeding classes with his wife like my husband did. The video in the class would've embarrassed him!
Aside from all the responsibilities that fathers are now expected to share, the added struggles of a child with special needs challenge modern-day dads to go above and beyond the call of duty. While mothers still carry the lion's share of the child care load, these dads are partners in the extra care that special kids need. They become literate in a whole new language. They are forced to join in the decision making on medical care. They acquire skills in home therapy that they never imagined they'd have to learn. And they often do it with far more humor than their wives do!
These men also carry a unique burden that is heavier than the typical father. The financial anguish of a child with special needs keeps these dads awake many a night. Most men have that inbuilt stress in regards to providing for their families -- How much more so for these dads! The weight of making certain they have adequate health insurance coverage, that their employer doesn't know how much treatment costs so they don't suddenly find an "excuse" to eliminate their jobs, to earn enough to make ends meet beyond all those medical bills is often beyond the comprehension of a wife. In fact, this is an area where mothers of children with special needs frequently lack understanding.
So often mothers look to their husbands to give them the relief they need from the heavy challenges of parenting that child. They forget that though different, each of you is carrying a heavy load within the family's life. Looking to that spouse for a break may not be the best place to focus.
Critism and tension can continue beyond this. Because loving care is not shown in the same way, women can forget that their husbands are doing their best to provide a good life for their child as an expression of love. Mutual compassion is due to each partner, and an awareness or appreciation of each parent's role. Simple words of acknowledgement can often go a long way towards encouraging your partner to press on.
When there is a void, pray for the Holy Spirit to show you where you can each get the help and support you need to strengthen you in your given roles as special needs parents! God is faithful to meet these needs. He never meant for this to be a one person job! It does take a village to raise these kids. And when a father who goes above and beyond the call of duty is a part of that village, how blessed we all are!
Although my father-in-law never saw his son infuse his grandchild, he did proclaim many times over the past decade, "I don't know how you do it!" My own father had to walk away with tears in his eyes as he watched my husband and I manage our son in the hospital. Oh, how things can change in a generation. Wives may wish for more from their spouses, but they don't always realize how much more they do have than their predecessors. Don't forget to applaud these contemporary fathers who go that extra mile for their kids!

Monday, June 14, 2010

Making the Case for Marriage

"Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." (Ecclesiastes 4:9-12, NIV)

My "Beloved" (Yes, I really call him that. And yes, I have friends who laugh at me.) and I just celebrated our eighteenth wedding anniversary. While remarkable, it causes one to reflect on what keeps a couple together for better and for worse through those years. Candidly, it hasn't always been a picnic. Between repeated misfortune with joblessness, miscarriage, infertility, financial woes and kids with various chronic diseases, it's a miracle we've survived with a marriage intact.

Why would we stay together when the statistics of an 80%-plus divorce rate for parents of special needs kids is stacked against us? Do we have some out-of-the-ordinary relationship, of the ilk that you read about in novels? Truthfully, no. But our marriage is the result of hard work and dedication to both each other and God. That effort and commitment pays off in spades in more ways that one:
  • First, unless a spouse is physically abusive, children benefit from an intact marriage. They learn problem solving skills when they see their parents work things out. The sense of belonging and teamwork that is built from a shared family experience with parents of both gender is difficult to replicate elsewhere. Ironically, children may also learn what not to emulate when they become married themselves. There's no shortage of information on the heavy toll divorce takes on our children. Anxiety, depression, poor sleep, lack of appetite, slipping grades and behavioral issues are all common results.
  • Second, if you think you have difficulty working out the details involved in caring for your special child while you're both under the same roof, imagine how difficult it is when you're each living separately! While your spouse may not always offer you what you think you need in the way of support, it is still a support system. Figuring out how the medical expenses are going to be paid for along with daily living costs when you're dwelling in 2 separate residences can be daunting. Further, consistency in medical treatment, boundaries and basic routine are much harder when you and your spouse no longer reside together.
  • Third, staying together pleases God, and that should be the main purpose of our lives when we're in relationship with Him. In Malachi 2:16 God is clear and emphatic that he hates divorce. It's not that He hates the people getting divorced, but His intent for marriage is for it to last. He is as hurt as those divorcing when we walk away unable to work things out.

It never ceases to amaze me when I hear that the divorce rate in the Christian community is higher than that of the non-believing population. Yet, I do hear many a Christian trying to justify calling it quits. There is no doubt that God wants better for His people.

So what are some things that help a couple over the inevitable hump of disliking each other in the course of a marriage?

  1. Devote yourself to marriage. Taking the attitude that quitting is not an option will help avoid the easy mindset of "Well, if it doesn't work out, I can always leave."
  2. Think of your kids instead of yourself! You may be unhappy or challenged, but have you thought of how unhappy a divorce would make a child who is already fighting the battle of a special need?
  3. Realize that God loves that spouse just as much as He loves you! When you find yourself in that self-righteous position of thinking you've been wronged and the other person owes you, remember that God sees each of you as His precious children. Strive to treat that partner in the same way that God sees them.
  4. In Colossians 3:23 we're told to do EVERYTHING as if we're doing it for God and not for men. Marriage is included in that command. When you're challenged by your spouse, remember that you're pushing through those difficulties not just for the benefit of the two of you, but for the sake of God's larger plan.
  5. Remember that you're not flawless either! Romans 3:23 reminds us that we're all less than perfect. Be courageous enough to take a long, hard look at yourself admitting your shortcomings. Marriage is give and take. Could it be that you're taking as well as giving?

In short, if I have to leave my kids with one bit of marital advice to take into their adult life, it's that marriage is hard work, but well worth it. Hopefully, our kids will cherish that advice and remember how I joke with my husband, "We're lucky we found one another because no one else would put up with either of us!"

Tuesday, June 8, 2010


"Be still, and know that I am God..." (Psalm 46:10, NIV)

The other day I got a note from a friend lamenting that she just couldn't get back into the groove of things. Besides the usual travails of parenting a child with special needs, a number of traumas had hit the family. I was under the impression from her words that she expected herself to be back to her pre-crisis operating levels with high energy and much accomplished. But alas, she was stuck in a "coasting" pattern.

Something struck me in witnessing her situation. What was wrong with coasting? Sometimes, that's just where God wants us. Stop and think about it -- There's no amount of high functioning and achievement that can earn God's love. Nothing we DO can earn us salvation. So why do we think we're less than acceptable when we are merely getting through life moment by moment with our days operating at a lower level?

To our detriment, we seem to have bought into the modern day lie that our value as a parent, as a human being, lays in our output. The more laundry we crank out, the more activities we run our kids around to, the more events we attend, the more we get checked off the list at work, the more acceptable we feel in the eyes of the world. If this were not so, how would a term like "slacker mom" make its way into contemporary jargon?

When Jesus dined at the home of his friends Martha, Mary and Lazarus (see Luke 10:38-42), one sister sat at the feet of Jesus clinging to his every word while the other sister frenetically ran around cooking and arranging to serve the flood of guests that had suddenly shown up. The NIV translation describes the sister who was working at the level of the typical modern day citizen, Martha, as "distracted". In fact, Jesus acknowledged her anxiety, but told her that her sister Mary had really made the better choice by chilling out with him.

In our lives as parents of kids with special needs, we have many demands, stressors and trials that wash over us. While we may foolishly expect ourselves to dance through these situations unscathed with our superhuman capes flapping in the wind behind us, God knows better. He designed us to do some coasting. Being fully present in the moment, even if that moment includes suffering, is what the Lord intends for us. We were not made to fly endlessly from one thing to the next like a spinning top. It's alright to just do the next thing, rest a little or leave the chores undone for a bit.

The next time you find yourself feeling bad that you're not accomplishing tasks to the level you think you should be, challenge those thoughts! Realize that God doesn't esteem your output. And embrace the saying that I have come to live by, "Good enough is good enough!"

Thursday, June 3, 2010

No Longer Flying On Auto-Pilot

"You have heard that it was said, 'Love your neighbor and hate your enemy.' But I tell you: Love your enemies and pray for those who persecute you, that you may be sons of your Father in heaven." (Matthew 5:43-45, NIV)

I'll go to my grave telling people that the Lord Himself writes these entries that I share with readers. I'm merely the pencil. The exchange that takes place between the Lord and I as each post is written is an interesting one. He makes me aware of what He wants written in some of the oddest ways at some of the oddest times. It always makes me laugh because it only affirms that these words are not merely my own.

The other day I was getting ready in the morning when I had to stop cold wondering if I had completed one part of my routine that was needed in order to proceed with what remained. The Lord brought to mind how much of our lives we go through out of habit without giving it a second thought. He showed me through the disruption of a silly, automatic, daily ritual that He has some lessons for us to learn.

What if we didn't fly around life always on auto-pilot? What if we challenged some of the things we do without a second thought, especially when it comes to special needs parenting?

For example, what if we found a way to respond differently to doctors or educators we disagree with? What if instead of launching into that automatic defensive position, we took a deep breath and held our tongues? What if we pulled back for a minute and reassessed things, so we can come to a reasonable resolution? What if we tried to put ourselves in the shoes of those who are causing us angst? What if we prayed for those who irritate or persecute us? What if the outcome were better as a result?

Another example of snapping out of that auto-pilot habit -- What if we changed our routine when our children's behavior frustrates or angers us? What if we tried to see the cause behind their behavior? What if we took a deep breath before we responded to them? What if we were more longsuffering with our children, got down to their level and showed them what mercy looks like? What if we spent more time praying for our kids than losing our cool with them?
Life improves for us and everyone around us when we trade-in the default of irritability and strife for kindness, gentleness and humility. It's not to say that we can exercise these skills perfectly, but what if they became the usual response to our triggers rather than the aggressive habits we have naturally? We do many things each day by reflex that may not be God's best for our lives. If we begin by building an awareness of what it is that we are doing today without giving a second thought, these habits can change. Challenge yourself! The peace that awaits you as a result may surprise you!