Friday, February 26, 2010

A Hope That Does NOT Disappoint!


And this hope will never disappoint us, because God has poured out his love to fill our hearts. He gave us his love through the Holy Spirit, whom God has given to us. (Romans 5:5, NCV)

When our son, Charlie, was diagnosed with severe hemophilia A immediately after his birth, we found ourselves quickly swept into the stream of looking for the positive ahead. The standard of care at the time he was born dictated that eventually a portacath would be inserted in his chest to provide access for the infusions of clotting factor he would need to be given 3 times per week or more. As our treatment center used an approach described as "secondary prophylaxis", we would need our son to have a joint bleed prior to having that port placed. Until that port was placed, we would need to bring him to our local children's hospital for infusing, which was always 3 hours out of the day when the trip was a quick one. Oh, how our sights were set on having that port placed! That was our hope of a reasonably "normal" life because once the port was placed, we could infuse at home.

Being a very active child, Charlie ended up being a very active bleeder from early on. I would make trips to the hospital 2-3 times a week with him. Hoping we could have the port placed because we were already having him infused as if he were on prophylaxis, we requested the opportunity to move forward with the procedure. Both because he had not had his first joint bleed and because there was a shortage of clotting factor at the time, we were denied our request. Our hopes were dashed as we continued the stressful treks to the hospital, never knowing when they would occur.

Eventually, we made the decision to skip placement of a port and moved to home therapy using peripheral venipuncture. When we got to that step, our hopes moved towards the talks of a cure for the disorder. Gene therapy was the talk of the community as diagnoses like hemophilia and cystic fibrosis were obvious candidates for researchers. Things looked exciting as human trials were being conducted. Suddenly, all hopes in gene therapy were dashed as trials halted due to a human fatality.

Over the following years, I was invited to engage in legislative advocacy for people with bleeding disorders. On several occasions I traveled to our nation's capitol visiting with congressmen and senators on issues of concern. Each year I would see families hoping to get a piece of relevant legislation passed only to face frustration and discouragement as things got hung up in our messy federal government. One law that both sides of the aisle agreed was good found itself on numerous occasions attached to another law that was not so good, thereby assuring its demise.

Why do I share these stories from our journeys with hemophilia? I want to make it clear to each of us parents that there is nowhere in this temporal world where we can or should hang our hopes - not in treatments, not in cures, not in legislation. People disappoint.

Remember, Jesus told us in John 16:33, "In this world you will have trouble. But take heart! I have overcome the world." Not only do the words of Jesus remind us that we should expect trouble and disappointment in this life, but they also remind us where our real hope should hang! The God who was big enough to overcome the grave is surely big enough to overcome hemophilia or any other challenge in life. He promises that in heaven, "He will wipe 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." (Rev. 21:4, NIV) That's the kind of place I want to hang my hope!

The best gift I can give my children is to direct their hopes to a place that will not disappoint. The challenges of this world are rough enough as they are. Eyes directed heavenward will have assurance of that joy without a doubt!

Tuesday, February 23, 2010

It Takes All Kinds


Now the body is not made up of one part but of many. If the foot should say, "Because I am not a hand, I do not belong to the body," it would not for that reason cease to be part of the body. And if the ear should say, "Because I am not an eye, I do not belong to the body," it would not for that reason cease to be part of the body. If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? But in fact God has arranged the parts in the body, every one of them, just as he wanted them to be. If they were all one part, where would the body be? As it is, there are many parts, but one body.
The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. (1 Corinthians 12:14-26, NIV)


"Silly Sally went to town, walking backwards, upside down." So begins one of our favorite children's books written by Audrey Wood. In our home, however, Sally's name is replaced by the name of our youngest daughter, Sophie. Any who know our girl realizes how befitting the SILLY SALLY tale is with Sophie's name substituted for the main character.


You see, with her various diagnoses including ADHD, multiple severe allergies, and sensory issues, this young darling does not get to places in the typical fashion. When she reads, the pictures are so overstimulating and distracting that she stalls in the midst of the words just to fully examine every detail of the picture. Smart as a whip, she'll drive a person crazy trying to complete a sentence because she has to interrupt with so many off-the-beaten-path questions. And forget asking her to sit still through a book, a car ride, a church service or a meal!


But as she dances on my last remaining nerve, I realize that God has big plans for this precious little girl. The Lord created each of us in completely different ways, with such a variety of gifts in order to fill the many roles and purposes He has for each of us in life. What may appear as a disability to one person, may in fact be an area of extreme giftedness to another. Countless examples throughout history can be cited of individuals from Einstein and Beethoven to Whoopi Goldberg and Michael Phelps who offered unique contributions to society despite their various diagnoses.


It's on the days when I am feeling defeated and like I will never succeed at helping this child get control of that wildly impulsive behavior, that I need to remember "it takes all kinds". God's word assures me that each part of His Body, even those seemingly undesirable ones, are necessary. Her high-energy, athletic prowess, vivid imagination, terrific sense of humor and unending curiosity can be a blessing to those around her as she reaches adulthood. Her Creator loves her just the way she is and will refine her gifts for His good purposes. And along the way, it will take her to some amazing places in life.


Wood's cherished story ends, "And that's how Sally got to town, walking backwards, upside down." What's important is that the main character does arrive, as will each of our special children - no matter how colorful the journey! I, like every parent, need only to rest and trust in the Father's plan.


*SILLY SALLY by Audrey Wood, Copyright 1992, Published by Scholastic Inc., 555 Broadway, New York, NY 10012, by arrangement with Harcourt Brace and Company.

Friday, February 19, 2010

STANDING STONES


When Jacob awoke from his sleep, he thought, "Surely the LORD is in this place, and I was not aware of it." He was afraid and said, "How awesome is this place! This is none other than the house of God; this is the gate of heaven." Early the next morning Jacob took the stone he had placed under his head and set it up as a pillar and poured oil on top of it. He called that place Bethel, though the city used to be called Luz. Then Jacob made a vow, saying, "If God will be with me and will watch over me on this journey I am taking and will give me food to eat and clothes to wear so that I return safely to my father's house, then the LORD will be my God and this stone that I have set up as a pillar will be God's house, and of all that you give me I will give you a tenth." (Genesis 28:16-22, NIV)

When the whole nation had finished crossing the Jordan, the LORD said to Joshua, "Choose twelve men from among the people, one from each tribe, and tell them to take up twelve stones from the middle of the Jordan from right where the priests stood and to carry them over with you and put them down at the place where you stay tonight." So Joshua called together the twelve men he had appointed from the Israelites, one from each tribe, and said to them, "Go over before the ark of the LORD your God into the middle of the Jordan. Each of you is to take up a stone on his shoulder, according to the number of the tribes of the Israelites, to serve as a sign among you. In the future, when your children ask you, 'What do these stones mean?' tell them that the flow of the Jordan was cut off before the ark of the covenant of the LORD. When it crossed the Jordan, the waters of the Jordan were cut off. These stones are to be a memorial to the people of Israel forever." (Joshua 4:1-7, NIV)

The other day, one of the amazing mothers I connect with through social media proudly announced: "My formerly G-tube fed son ate an entire grilled cheese sandwich today. It can happen for you, too." What a powerful story! Something we all seem to take for granted - swallowing, eating, digesting on our own - was given as a new gift to this toddler that day. Years of parental struggles and concern over getting the proper nutrition into this child neared a close. It's times like these that we can share the joy and proclaim, God is good!

This woman's life is a great deal like the stones we read about in today's scripture passages. There for all to see, she bears witness to what the Lord has done. When she perseveres and no one can figure out how, she has the opportunity to share how her faithful Savior has carried her through. Despite her sorrows, she has the powerful effect of causing others to worship and praise their Creator for life's simple miracles.

You have a story to share as well - an AMAZING story! If you're walking hand-in-hand with God, raising a child with a special need (or living with any sort of challenge), you have the gift of being used to change the world around you. Whether you realize it or not, people are watching you. They're wondering how you get through this life that, some days, you feel you are barely crawling through.

That's a heavy, but delightful responsibility if you meditate on it! If we are fixing our eyes on Jesus, pressing on with Him, being faithful stewards of the pattern He's allowed for our lives, then we will be a beautiful reflection of Him to everyone around us. We will just naturally glow with His glory. People will see us as those standing stones in their midst and ask, "What's happened here?" That gives you the chance to share even more with them, changing their lives in powerful ways.

Yet, if we face our trials with continual bitterness, seeing no good in the midst of our weariness, we will look like oozing mud rather than a standing stone. Mucky, dirty, unstable and definitely not something people want to get stuck in, we will repel those around us. In endless self-pity or anger, we lose the great gift of having our pain being recycled for our own good and God's magnification. We lose people's understanding and support for the less fortunate. And we add to the building of society's hardness around us.

It's not to say that we don't all have our bad days where we fall apart for all to see, but we must not remain there. When people see us renewed and restored after an episode of breakdown during a tough time, we are "real" to them. They see us doing things imperfectly and realize that they too could carry on with the help of the Lord. If we walk around with an endless grin, others give up, thinking a joyful life in Jesus is unatainable, and that you are either a fraud or repressive.

Be real! Share those stories! And if you are connected to THE Rock of Ages, your stories can't help but give you divine purpose as one of His standing stones when you make your life transparent to others.

Tuesday, February 16, 2010

Hitting the Wall


"He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (Isaiah 40:29-31, NIV)

In sports, there's an expression used for when an athlete has used up their last ounce of energy leaving them exhausted and delirious. The name for that state of overwhelm is called "bonking" or "hitting the wall". At those times, the athlete needs the total assistance of others, offering them rescue, rest and nourishment. Only then can they be restored and renewed. For those with the great misfortune of having no aid when they hit the wall, demise can be imminent.

Though you may not personally engage in competitive sports, I'll bet you've been there. Each of us has times when we have pushed ourselves as hard as we can, strained to meet the needs that are demanded in a given situation, and then found the world spinning around us as we are ready to collapse. Our thoughts become irrational and we expect way too much of ourselves. We need the help of another because it has become impossible for us to take even one more step.

It's easy at times like this to be self-condemning. We foolishly compare ourselves to others, never seeing what we have amazingly just come through. We feel defeated as we cling to false perceptions of how things truly ought to be. Having depleted ourselves physically and emotionally, we are unable to clearly see where to go next.

Oh, what a merciful, generous, loving God meets us at times like this! The most remarkable thing I find in today's scripture passage is that the Lord knows we will bonk from time to time. Ironically, He reminds us that even the most vital among us, youths or young men, will at times find themselves in a position of utter helplessness.

Yet, our tender Savior meets our stumbling, not with condemnation and further expectation, but with that much-needed rescue. When we're dragging, He's not cracking a whip and shouting, "More! More!" Jesus is gently renewing. He lifts us up, strengthens us with as much time and refreshment as we need to get back on track.

In today's passage, the flight of the eagle is also cited. In Deuteronomy 32:11, there is a description of how the mother eagle teaches her young to fly. It is nudged out of the nest, and while it's in total flapping, panicking free-fall, the mother swoops under it to catch it. While frightened, the eaglet is strengthened through teaching. What a perfect example God gives us of His care for us!

The only thing that is required of us at times like this is to put our total hope in Him. That seems mind-blowing in a culture where we are so performance driven. Even religion can leave us feeling that we need to earn the love of our Father. But it would be against His very nature not to swoop down and catch us when we trust in Him. How foolish we are when we expect of ourselves what even God himself does not expect of us!

Why look towards other people? They're only human. They can disappoint. Why rely on ourselves? We surely don't have it all figured out! Why depend on good fortune? That certainly comes and goes. Only Jesus can lift us up to a place that helps us rise above our circumstances. He gave His life for our restoration. The next time you hit the wall, pull off of life's race course and find your refreshment in Him.

Thursday, February 11, 2010

Don't Tread On Me!


"Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock. But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand. The rain came down, the streams rose, and the winds blew and beat against that house, and it fell with a great crash." When Jesus had finished saying these things, the crowds were amazed at his teaching, because he taught as one who had authority, and not as their teachers of the law. (Matthew 7:24-29)

Face it, we all have times where we're worn down, exhausted and mentally not at the top of our game. At these times, we ultimately have to decide which battles are worth fighting and which are not. It is precisely at times like these where we can find ourselves turning authority over to others and submitting to their opinions rather than our own wisdom. That's not necessarily a bad thing, unless that's where we live all the time.

God does not want us to live our lives as a bunch of pushovers! Now that may be a distasteful comment for parents who find themselves confused, sleep-deprived and overwhelmed. But in order to keep ourselves from being taken to places we don't want to end up, each of us needs to build a strong foundation. We need to set our boundaries and determine in our minds what is acceptable for our children. A game plan of what we will and will not choose for our families needs to be thought through.

My friend, Shannon, regularly states out loud, "God gave these kids to ME, not to the schools, not to the doctors, not to the government. He gave them to ME!" And this is a strong and simple reminder that we as parents should embrace the same confident attitude. Never forget that no one knows your child like you do. You are with them day in and day out. You have seen them through more history than any other person in their lives. You know their likes and dislikes. You are aware of what works and what doesn't work with them.

Because that child is yours, cover them in prayer. I continually praise God that there is no problem too big or too small for Him to handle! Lift the details of your child's life up to Him. Is there difficulty with staff at school? Pray for God to soften their hearts and open their eyes to what is needed to remedy the situation. Is there a doctor that won't budge on what you'd like to see done with your child's treatment? Ask the Lord to show you what next steps to take. Are there difficulties at home? Go to your Savior for refreshment and clearing of your mind.

This is how we build a strong foundation for our families. Inevitably, we will be questioned or challenged in one of our weak times. Yet, with that foundation established, we will know what battles to fight and will possess the discernment to make right decisions. We will neither major in minor things nor be swept away by the opinions or assertiveness of others. And that foundation will grant us peace in the midst of any of our storms. We will solidly remain where we have determined, in partnership with God, to be!

Tuesday, February 9, 2010

TMI


"You listen to the longings of those who suffer. You offer them hope, and you pay attention to their cries for help." (Psalm 10:17, CEV)

I did it again the other night -- The classic "over share". I said a little too much about how our son was doing and about what life was like with him on that challenging day.
Shortly after our baby was diagnosed, my husband and I shared a reaction that we began to detect when chatting with people. We both noticed how someone would ask how the baby was doing, but then would glaze-over when we started sharing sincerely from our hearts. It was hurtful at a time when we just needed someone to listen and let us talk through our grief. Their demeanor belied their words. Though they asked how we were doing, their behavior made it seem that they really didn't care.
We had the great fortune of having a social worker available to us as part of our son's comprehensive care. When we shared with her how disheartening it was trying to discuss our son's hemophilia with anyone outside of our medical providers, she mentioned that they might be suffering from a type of "compassion fatigue". She said that it probably wasn't that they didn't care, but that they had heard so much and didn't know how to help. It was then that she talked to us about building a good support network where we could share our trials and griefs with others who would listen and understand. Little did we know then that this type of support would take years to build.
Certainly, you've been there too. The sting of people who dismiss what you are saying or can't find time enough to hear your challenges, only adds to the weight of what you carry. In this day and age, the saying "TMI" (standing for "too much information") indicates that the listener has heard much more than they care to. It shuts down the one speaking and quickly extracts anyone who would be forced to listen to them. Every parent who faces the ups and downs of caring for a child with special needs has experienced the TMI reaction, leaving them feeling isolated from time to time.
The great news of hope is that there is One who will never tire of listening to us! Without much digging, I can easily cite at least 15 verses in the Bible that describe how God listens to us. Isn't it amazing that the Creator of the entire Universe even considers listening to little, ol' us?! No problem of ours is too big or too small for Him to be concerned about. He cares so deeply for us, and shares our burdens. In fact, He not only listens, but also empathizes! In Hebrews 4:15 we hear how He was like us in every way except for sin, so He knows all about our troubles. We can pour out our hearts to Him any time, anywhere and know that He is close to us.
If you're anything like me, sometimes you need a little more than a God you are unable to see, feel or hear in the physical realm. He is so loving and gracious that He knows our limitations and deep need for relationship with others. So in His infinite mercy, He brings others who we can connect with. He often does His work through these people. We need to do our part. The Lord isn't going to magically produce someone to stand in our bedroom as we lay there in fetal position feeling sorry for ourselves. But if we put a little effort into it, we can find ourselves blessed with others who are walking the same road and need someone to listen also. Sometimes these friends can end up being the life line we need when we are at the absolute end of our ropes because they have been there. They get it. And while they will pray in faith with us and point us to God's word, they will also joke at the repugnant and recognize our frustrations.
What an awesome Savior we have! He did not make us to bear our burdens alone, but hears our every cry for help. He is a relational God and not one of putting on a false happy face. He allows us no burden that He will not help us to bear. And when we need to be heard, the thoughts springing from our hearts are never TMI to Him!

Friday, February 5, 2010

FRAGILE! HANDLE WITH CARE!


"Singing cheerful songs to a person with a heavy heart is like taking someone’s coat in cold weather or pouring vinegar in a wound." (Proverbs 25:20, NLT)

Most days, I go through my life with a grateful heart. Despite the fact that our family bears many burdens and a seemingly disproportionate amount of trials, I am ever-aware that we could be living in some 3rd world country, homeless, poorly-clothed & starving. Nevertheless, no person is at the top of their game every day. We all have days where we're worn out, fed up, sad, angry or confused. I try to be transparent on days like this, so other parents know they're not alone in their journey. There is something strengthening about knowing that others can identify with our challenges.

Inevitably, on those days, there's always the individual who thinks it is their duty or God-given right to set you straight. There are the comments like, "It could be worse...", which only manages to discredit and minimize your valid struggles. And then there is the, "God doesn't want us to have a pity party...", which is usually not backed-up by any sort of biblical truth and takes on an air of spiritual superiority. Worst of all are the accusations of "Maybe there's some unconfessed sin in your life that hasn't been dealt with." Far from helping, any of these glib remarks can sting and even throw kerosene on your fire! Be assured, none of them are truth from the mouth of your Savior.

Here is truth to equip you the next time an ignorant, albeit well-intentioned person comes at you on a down day. First, when you are having a rough start, crack out your Bible and dress for the occasion. Ephesians 6:12-18 describes the full armor of God to protect you from hurtful and false things people throw at you on these days. When people say ridiculous things like, "You're too blessed to be stressed," let those flaming arrows bounce off your shield of faith.

Second, know that God's word is PACKED with admonition of how people are really supposed to treat us on those weak days. In Romans 12:15 (NIV) we're told, "Rejoice with those who rejoice; mourn with those who mourn." Galatians 6:2 (NIV) says, "Carry each other's burdens, and in this way you will fulfill the law of Christ." The list of quotes from God's word could continue on. In his book When Bad Christians Happen to Good People: Where We Have Failed Each Other and How to Reverse the Damage, Dave Burchett brings to the reader's attention that we get Christianity so wrong so often because we miss that the heart of Jesus' message is love. It is not too much to expect that others would demonstrate God's tenderness and mercy when you're not feeling your strongest.

Third, know that there are big names in the Bible who have struggled just like you. In Exodus 17:11-12 we see that Aaron and Hur helped Moses by seating him and holding up his arms when he couldn't, so the battle would be won. In 1 Samuel 1 we see how God was patient and merciful with Hannah, granting her the child she had long desired. In 1 Kings 19 Elijah runs for his life and becomes greatly discouraged. While he is weak, God nourishes him tenderly and equips him for the journey. When people behave in such ways towards you, welcome them in and accept their blessings. The rest, tune out as so much useless noise.

The other day, I had another mother say to me, "God never gives us more than we can handle - Now THAT'S something you never hear people say in the first person!" Remember that too often, most people who have not walked your journey lack the ability to comprehend your difficulties. Perhaps on days like these, we should all just walk around wearing labels like I see on our shipping boxes, "Fragile! Handle With Care!"

Tuesday, February 2, 2010

Reinforcements Required!


Defend the cause of the weak and fatherless; maintain the rights of the poor and oppressed. Rescue the weak and needy; deliver them from the hand of the wicked. (Psalm 82:3,4, NIV)

Let me this entry by humbling myself with an apology. After ministering to parents of children with special needs for nearly a decade, I must confess that this is the first devotion I have written about or for single parents. It hasn't been for lack of concern. There has never been a time where I haven't had a heart for the enormous weight that single parents bear. Frequently, my husband and I have plopped down frazzled and exhausted at the end of a day asking one another, "How do single parents do this?" So I pray that I can adequately visit this topic with readers now.

It may come as no surprise to you that the divorce rate is significantly higher in homes where a child has special needs. There can scarcely be greater heartache than to not only lose your dreams of a healthy, "normal" child, but then to also lose the person you hoped would be your partner for life. The withdrawal, blame, apathy and dumping of one spouse on another leaves the recipient feeling battered with self-doubt. Once the split is made, that strife between former husband and wife has to be overcome to the extent that care of that special child still needs to be worked out and maintained. The constant head-butting can tear apart a parent's insides for certain!

With all of this in mind, what does life for the single parent need to look like from the view of both the one undergoing the turmoil and the community that surrounds them? Let's begin with what we need to be offering to these parents, especially if we call ourselves Jesus-followers.

Clearly, God mandates in His word that we are to help the weak and the weary. With the prevalence of divorce in this current culture, we can too easily overlook the need for help. Because a child who is medically, emotionally or cognitively challenged can multiply that need 10 times over, our keen sense of observation is required. We need to get our heads out of our own immediate little goings-on, pausing long enough to see the heavy burden of these families.

Simple acts of kindness can go a long way to offer comfort to a single parent. Something each of us can easily give is the gift of an encouraging word. Being isolated with nothing but needy children, these parents don't receive that affirmation of another adult voice in the household. You might express, "You're doing a great job with your kids," or "I can see how much energy you pour into your child - you're remarkable!" While it may not seem like a big deal to you, words like that can be just the thing a person needs to get through a rough day.

Other gestures of mercy can include offering to take the kids in order to give a much-needed break. Driving the children to or from school, clubs or social events can be a helpful gift to a parent as well. And a meal for no reason at all can be that unexpected blessing that reassures mom or dad that they are valued and not abandoned.

Aside from these small ways of reaching out, the biggest kindness could be offering a listening ear to that parent. Withholding judgement, not trying to fix problems, but just allowing that person to share what's on their heart is lovingly generous. After all, who does this person share their frustrations or burdens with at the end of a work day? Who do they get to bounce ideas off of?

For their part, single parents need to do some things that they may not want to do. Realizing that people are oblivious to anything outside of their immediate, daily life, a parent without a spouse needs to make others aware of what they need. Expressing to others how they can be of help to you will bring relief in both directions. Patiently educating people who have not walked a mile in your shoes will not only be of help to yourself, but it will also help other single parents who come along after you. Trying to be a hero or a martyr by handling the challenges of parenting children, especially one with a special need, does no one any favors.

Ultimately, God made us to be social beings. We are to look out for one another. Help each other through the ups and downs of life. When we obey the command to "bear one another's burdens" (Galatians 6:2 ) we make a better world for all of us!