Our Weakness - His Strength

Talking with other moms whose children have special needs and reading their essays, books, and blogs, I've noticed they often mention that well-meaning friends and acquaintances tend to say certain things to them. Some of the favorites seem to be "God only gives these special kids to special mothers" and "God knows you are strong enough to handle a child with special needs." I cannot count how many times I have heard or read such statements! They cause many thoughts to run through my head.

I wonder if these people have any idea of the fear and grief that my heart feels each day? I know what it is to look forward to my typical child's future, but when I imagine Liam's adulthood, I feel huge amounts of fear. I feel fear that he WON'T live to be an adult. I feel fear that he WILL live to be an adult who cannot walk, cannot care for himself, and must be diapered. I have great amounts of anxiety over what that will mean for my life. In fact, my fear about Liam's future is so great that I consciously do not allow myself to think about it! So while I dream about my little girl's future, I don't even go more than a year out with Liam! Because of the fear and anxiety that I have, my motto with Liam is "one day at a time." These doesn't really sound like the thoughts of the "special and very strong" person that people seem to think has a child with special needs.

My fear about the future is only one aspect of my weakness. I won’t begin to list them all for you, but I will assure you there are MANY! I have quite a network of friends whose children also have special needs, and all of our sentiments seem similar. Although we can each look around us and see abundant blessings, inside there is a part of us that is WEAK, EXHAUSTED, WORRIED, AND TERRIFIED.

So I wonder if REALLY the opposite is true about the "strong, special" parents of kids with special needs. Maybe God chose us not because of our specialness or strength, but because we have weaknesses in certain areas. Please hear me correctly: I certainly do not mean that we were chosen as a punishment for certain weaknesses. Rather, maybe God allowed the challenges associated with parenting our children into our lives, not because we are so special or so strong, but because in our weakness HE will be glorified. This is true of other challenges in life; why wouldn't it be true of ours?

When Paul is talking about the "thorn in his flesh" he says, "But he (the Lord) said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong" (2 Cor. 12:9-10).

Gideon is a perfect example of the Lord’s power being made perfect in human weakness. During his time, the Israelites were in the hands of the Midianites. The LORD went to Gideon and, after calling him a mighty warrior, told him, "Go in the strength you have and save Israel out of Midian’s hand. Am I not sending you?” (Judges 6:14). I can imagine that Gideon was in total shock. Maybe Gideon thought that God got the wrong guy – mistaken identity? Gideon immediately reminded God that not only was he the weakest in his family, but his family was from the weakest tribe. What an illogical choice he was. Human thinking says, "Really, is this the man whom God chose to save Israel?!" The Lord's answer is "I will be with you. . . . Peace! Do not be afraid." (Judges 6:16,23).

How many times have I reminded the Lord that, like Gideon, I am not the right choice for this “special” assignment? My list of reasons that I am ill prepared to mother a child with special needs is at least 100 items long. I remind God of these reasons (and of all of the things that I WAS prepared for - all the typical milestones and growing pains), and his answer in scripture is "Am I not sending you?"

We don’t know if God chose us because of our weaknesses or despite them. Truly, it doesn’t matter. We do know that he has given each of us a child with special needs. We know all of the unexpected ways that our child has blessed our lives, but we also know that our dreams and plans have changed because of this special blessing. God doesn’t put us on this path and desert us. He promises to go with us, just as he promised Gideon. He promises not to give us more than we can bear. He promises to carry us when the load gets too heavy.

It didn’t matter to God what Gideon’s qualifications were or what tribe he was from, nor does it matter what our weaknesses are. What matters is who God is and what his strengths are.

Author Max Lucado uses the story of a commercial flight as an example of this.

“I write these words on an airplane. A late airplane. An airplane different from the one to which I was originally assigned. My first flight was cancelled for mechanical difficulty. I and a few dozen not-so-happy campers were down-loaded onto another plane. As we checked into the new flight, I heard many of my fellow passengers ask, is this plane ok? Any mechanical flaws with this 747? We were full of questions about the plane’s ability to fly, but the attendant had no questions about our ability to do the same. Not once were we asked, 'How about you? Can you fly? Can you flap your arms and get airborne?'"

"Bizarre questions. My ability to fly is not important. My strength is immaterial. I’m counting on the plane to get me home, hence I inquire as to its strength."

"Need I make the connection? Your achievements, however noble, are not important. Your credentials, as remarkable as they may be, are of no concern. God is the force behind this journey. His strength is the key factor. Focus not on your strength, but his. Occupy yourself with the nature of God, not the size of your bicep.” (Max Lucado, Entering His Presence)


The pages of Scripture contain so many other examples of God being glorified through human weakness. David the little shepherd boy, equipped with stones and a sling, is able to kill the giant. God’s strength is shown through human weakness. Moses, who like Gideon tells God that he is not equipped to lead the Israelites, is able to do exactly that and do it well! God’s strength is shown through human weakness. Solomon feels ill equipped to lead and prays to God for wisdom. I Kings tells us that people from all over the world sought out Solomon because of his great wisdom. God’s strength is shown through human weakness. Mary, a young virgin girl, becomes the mother of the Savior. God’s strength is shown through human weakness. Saul, a vicious persecutor of Christians, becomes Paul, who shares Jesus with countless hearts. God’s strength is shown through human weakness.

These examples and many more in Scripture show us how God repeatedly chooses to work through human weakness to show his glory. Why do I share this with you? I want you to know that we don’t have to be these amazing, strong, special moms and dads who can do it all.

Gideon and his small, weak army defeated the great Midianites with only their voices. In God, Gideon was able!

God knows our weak nature and loves us anyway. He feeds us regularly through his Word and the sacraments to strengthen us and refocus our wandering eyes. We don’t need to depend on ourselves or our own strength or specialness. God does it all for us. He saved us, once and for all, on Calvary’s mountain. Whenever and wherever we are exposed to his Word, the Holy Spirit is hard at work in our hearts, changing them. God will do his work. We don’t need to be amazing, special, or strong by our own might. We need only to be his. In the safety of his strong arms, our weaknesses don’t matter. He will hold us up. Beyond that, he will work in our hearts and lives to accomplish his great purposes. In him, we are as able as Gideon and the heroes of the Bible. In him, we can do whatever he has called us to do.

Praise be to our God who is able and strong! May his strength be shown in our weaknesses.

An Obedient Heart

on Saturday, November 20, 2010 at 6:37am

I recently read a devotion* entitled "Sippy Cup Trust" in which a mom talks about how her little son became panicked whenever he dropped his sippy cup and could not get it by himself. He would begin to yell and cry until she gave it back to him. If she took a few minutes to give it to him or had to do something else first, his panicked yelling and crying would become louder and louder. She would reassure him that she would get the cup in a minute, but he would begin to flail his arms and legs into a tantrum. She often found herself thinking, "Doesn't he know I see it fall? Doesn't he hear me when I say that I will get it? Why can't he trust that I will do what I say?" Over time she realized that this struggle with her son paralleled the struggle that she was often having with God - not remembering that He sees all, not trusting that He will handle things better than she could, not trusting that He will keep the promises that He has given to her (and all of us) in Scripture.

A huge parenting struggle in our home has been that I have been wrestling (only figuratively of course) with my 5 year old for control in our relationship. She has her own ideas and is trying very hard to assert them. While we value her ideas and intelligence, Scripture makes it clear that in a Christian home, CHILDREN MUST OBEY THEIR PARENTS. I have spent a lot of time talking about God-pleasing obedience being 1) immediate, 2) with a happy heart, and 3) thorough. Simple compliance doesn't do the trick. It is my responsibility to teach her that she needs to be in the habit of obeying those whom God has put in authority.

As I thought about this family struggle in relation to the sippy cup devotion, it dawned on me that I was like the mom in the devotion. The struggle that I was having with my daughter was a picture of my current relationship with God! I have been wrestling with Him just as my daughter has with me! Knowing that God demands obedience from His children hasn't stopped my heart and mind from questioning and rebelling these past months. Sophia isn't being obedient to me in a God-pleasing way and I am not being obedient to my Heavenly Father the way that He wants me to. My brain knows that God sees all, that His word promises that His plan for my life is being carried out, and that I can trust him absolutely. But that same mind and my hurting heart are in rebellion.

I spend my time trying to teach my precious child about obedience, but how do I – God’s precious child – learn to be more immediately, cheerfully and thoroughly obedient to my Lord? First, I look at who I am. I am a sinner and because of that I cannot obey God. My natural, sinful will is to disobey. Yet through saving faith in Jesus, I have been washed clean. The Holy Spirit is dwelling in my heart. In thankfulness for Jesus’ saving death and with his Holy Spirit dwelling in my heart, I arise daily with the desire to obey my Heavenly Father. As I read God’s Word and spend time in prayer I come to know my God better. I understand WHO my God is and what His good and perfect will is. My will begins to be more and more in line with the will of God.

If I try to think of good examples of Christian obedience, the apostles are some of the Bible folks who come to mind. In Matthew 4 we are told that when Jesus said, “Come follow me” the disciples “at once … left their nets and followed him.” THAT is God-pleasing obedience. They didn’t hem and haw. They didn’t check their accounts to see if they could afford it. They didn’t even go home and consult their families. They obeyed IMMEDIATELY! That is an amazing example of God-pleasing obedience!

David, too, is an example of obedience. Can that be? Can an adulterer, murderer, and liar be a great example of obedience. YES! Although David was definitely all of those sinful things, through faith in God he was also obedient. David repeatedly had the opportunity to harm or kill his assailant, King Saul, but he did not out of obedience to God. David’s obedience shows that he placed his full trust in God. Even in the desert David sang to the Lord, “I love you, Oh Lord, my strength. The Lord is my rock, my fortress, and my deliverer; my God is my rock, in whom I take refuge.” (Psalm 18:1-3) Knowing that David, full of sin that was plain to see, was also a “man after God’s heart” and at many times in his life was very obedient to the Lord helps me to see that I can be obedient as well.

David yearned for the Lord. He talked to the Lord. The disciples spent their days and nights with Jesus – listening and learning. THIS is how I can become more obedient to my Lord. Did David and the disciples have moments of doubt that led to disobedience? They certainly did. God shares some of these moments of weakness with us in Scripture. He doesn’t share them with us just so that we can wipe our brows with a big “WHEW, they were sinful too!” of relief, but to help us see that God works in, through, and despite our mistakes. Does our disobedience and lack of trust make things harder in earthly life? Often it does. If you look at the lives of Bible believers, you will see that is the case for them too. David sure made his life harder when he had an affair with Bathsheba and then fixed it up with murder. Jonah ran from God and God saved him from drowning. Spending a few days in a fish’s belly can’t have been easy though. Maybe immediate obedience would have been easier?

Ever since she began afternoon kindergarten, Sophia is exhausted in the evenings and finds many reasons to be upset. One night as we were sitting down to a dinner of salmon and brussel sprouts (both of which Sophia actually loves) she came to the table crying and yelling that she wanted to eat a sandwich for dinner and WOULD NOT eat anything else. My patient husband filled her plate with the food that was being offered and got her to be quiet, pray, and eat. By the third or fourth bite, the crying seemed to be a faint memory (to her!) and with a big smile on her face she said, "Papi, I love salmon." How much easier, for Sophia and all of us, wouldn't it have been if she could have been obedient from the beginning. If my daughter's thoughts had been obedient, her behavior would have looked completely different. God-pleasing behavior is a reflection of God-pleasing thought.

So where does that leave me- the mom of a child with special needs who often feels that life is just not what I want? In thankfulness to my Lord and out of love for Him I want my thoughts to be obedient to him. And yet, I want my son to walk and talk. I want to have a larger family. I want typical sibling relationships for my daughter and I want my son to live a long, healthy life that includes things like marriage and children. I want an earthly life for my family that looks different than than what I have been given. This whole “special needs lifestyle” of adaptive equipment and medical interventions makes me want to run away like Jonah.

I look around me and it seems that most of the families we know get exactly what I want. They don’t even have to try. They have healthy baby after healthy baby. Their lives aren’t revolving around adaptive equipment, hospitals, and therapies. How do I bend my will to God’s in this most difficult thing? How do I trust my God who has allowed things into my life and my child’s that I am not particularly excited about? Knowing that He promises to work through them definitely helps, but just knowing doesn’t take the rebellion out of my heart.

The good news for me is that just like Sophia has a patient father who works her through her disobedience, I have a heavenly Father who describes himself as a shepherd who rejoices when one sheep re-enters the fold. This Shepherd loves me enough to work with me, through my bouts of disobedience. He forgives me when I wrestle with him and refuse to accept his will for my life. He offers closeness with himself to me in the pages of Scripture. Through the words of Scripture He comforts my wounded and rebellious heart. As He is doing this, his Holy Spirit is residing in my heart, making my will resemble the Lord’s – more and more everyday.

So to rid myself of my rebellion toward God’s will I can confess my disobediences to him and then immerse myself in getting to know His will better. I can bathe in the Psalms, drink the Gospels, and surround myself with His promises. The Bible tells us that His Word never comes back empty. That applies to outreach and nurture. When our hearts are nurtured in God’s Word, His Word will work on them.

So today let us pray, as the parents of children with special needs, that whatever is causing our hearts to rebel against our God will be soothed with God’s Word. May we look to Him to ease us out of our disobedience. May he inhabit our hearts and make them His dwelling place. Our actions will show this indwelling and our hearts will become obedient.

*The Heart of a Mother

Compilation by Wayne Holmes

Bethany House Publishers, 2003

Sippy Cup Trust by Tamara Rice

Our Perfect Father

Thursday, January 20, 2011 at 4:06pm

My son is getting bigger. He is big enough at three years old that he is difficult to carry. We hesitate to ask Grandma and Grandpa to babysit because we worry that he is just too big for them to manage. Liam cannot walk or crawl, so he has to be picked up and carried wherever we go. We have a wheelchair, but it is often faster and easier to carry him (to and from the car, within the house, etc.). Also, Liam is the happiest when he is in our arms. He loves to be held, cuddled, and rocked. He doesn't understand that he is a big boy and it is difficult for us. He just knows that he loves our arms around him.

I have always known that eventually Liam will be too big to carry, but I am not sure when that time will come. I am beginning to experience painful injuries to my own body that are the result of picking him up and carrying him. This transition from being able to carry my son to having to "transfer" him from one adaptive apparatus to another is coming fast, and I am forced to face it because of the failings of my body. My son needs me, and my weak human body cannot continue to help him the way that it has been able.

Whether a Christian or not, almost everyone knows the story of the “Footprints in the Sand.” The story is usually set on a beach. The footprints represent a Christian’s journey through life, and there are usually two sets walking along next to each other. Whenever there are difficulties in the person’s life, though, one set disappears. The Christian asks the Lord, “Why did you always leave me in my time of need?” and the Lord answers, “It was then that I carried you.” The story may have become cliché, but it gives a wonderful picture of how our God works in our lives.

Our heavenly Father does not get sore joints. He doesn't tear tendons or slip discs. He can always pick us up. We are never too heavy; our worries are never too great for him. In Matthew 6:25-27, Jesus says, “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?"

Although we know that our God will direct us with his Word and carry us through the difficult times, we constantly try to go our own ways. We sin daily. We often push God away or ignore him and think that our ways are better. Our God does not let that stop his love for us. He chose to send his own Son to bear the punishment for those sins - our sins. Because of Jesus' sacrifice on the cross we will live in Heaven someday. Also, he continues to show love to us here on earth and give us many rich blessings. He continues to carry us through troubles by giving us comfort in his Word and loving friends, families, and church families. He gives us blessings too numerous to list!

That same Heavenly Father who sent Jesus for us and blesses our days also encourages us to turn to him with every worry, concern, or thanksgiving that we have. He wants us to talk to him daily as dear children ask their dear father. In Matthew 11:28, Jesus says, “Come to me, all you who are weary and burdened, and I will give you rest." In Phillipians 4:6 we are told, "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." There are many, many passages that talk about prayer or show Jesus' example when he was here on earth. God wants us to depend on him. He will hear our prayers and answer.

The ignition of my minivan must have a connection to my daughter's brain and mouth. As soon as the van is fired up, so is she. She can ask questions and have conversation NONSTOP all through the city of Milwaukee and anywhere else that we might go. My mind becomes a numb jumble of a five-year-old's questions. Don't get me wrong, some of her questions are very insightful, but when they are coming at me morning until night, I often become weary and find myself decreeing "No more questions. Mommy is all done."

God's head does not spin or become numb with our prayers. He wants us to pray CONTINUALLY. He always answers our prayers. It is never due to weakness and exhaustion when we seem to have to wait for his answer. It is God's perfect timing. He never decrees that "God is all done with questions today." NEVER. He wants us to come to him with everything, at any time, and with confidence. He does care. He will listen. He always answers.

Back in 1855, Joseph Scriven wrote words that are still true for today’s Christian. God is the same in 1855, in 1955, and today!

What a friend we have in Jesus,

All our sins and griefs to bear!

What a privilege to carry

Ev'rything to God in prayer!

Oh, what peace we often forfeit,

Oh, what needless pain we bear,

All because we do not carry

Ev'rything to God in prayer!

Have we trials and temptations?

Is there trouble anywhere?

We should never be discouraged -

Take it to the Lord in prayer.

Can we find a friend so faithful

Who will all our sorrows share?

Jesus knows our ev'ry weakness -

Take it to the Lord in prayer.

Are we weak and heavy laden,

Cumbered with a load of care?

Precious Savior, still our refuge -

Take it to the Lord in prayer.

Do your friends despise, forsake you?

Take it to the Lord in prayer.

In his arms he’ll take and shield you;

You will find a solace there. (CW 411)

Praise be to God for being the perfect Father. Carry us, God!

Keeping My Focus

on Saturday, September 17, 2011 at 6:06pm

This week I attended a children’s chapel where the pastor was talking about Samson. As he discussed this story, I began to think about FOCUS.

You see, Samson was set apart from birth for God’s special purpose. An angel came to Samson’s childless mother and told her that she would conceive a son. This visit shows just how special Samson would be. God didn’t often send angels with such a task. (There were only a few other times in Scripture when an angel announced that a child would be conceived. One time was with Sarah and Abraham. Another was when Gabriel announced the birth of John the Baptist. The other was with Mary, the mother of our dear Savior. )

The angel told Samson’s mother that her son would “begin the deliverance of Israel from the hands of the Philistines” (Judges 13:5) and gave very specific instructions to her. Her son would be a Nazarite. This meant he could not consume fermented drinks, eat unclean meat, or cut his hair. This wasn’t a magic recipe, but a vow. Samson was to be a Nazarite from birth until death. It was not a vow that Samson took by choice; God chose this for him. By fulfilling his vow, Samson would show his love and dedication to God.

As Samson grew, it became apparent that he was, indeed, special. He was so strong that he was able to overpower a lion and kill it with his bare hands. No regular man could do that. God was the source of Samson’s great strength!

Although Samson was set apart by his vow and special because of his miraculous physical strength, he was still a sinful human. As such, his eyes began to wander. He fell in love with a woman who did not love the Lord. He put his love for Delilah above his love for God.

Samson loved Delilah, but she only pretended to love him. She used him. Delilah sold Samson out to his enemies. She cut his hair, causing him to lose his strength, and he was captured. His captors put out his eyes and mocked him.

Samson lost his focus long before the Philistines put his eyes out. He had taken his eyes off of the eternal prize, and all he could see was Delilah. He had to have her. His faith didn’t matter, nor did his vow; his only concern was that he have that woman for his wife. And he got her! But they didn’t live happily ever after.

It has been said that where we put our focus is the direction we tend to go. For me this is very true. If I am driving (or sometimes even walking) and I get distracted and look off to the side, I will suddenly find myself headed toward whatever it is that has caught my eye. So far this hasn’t caused a car accident for me. I have, however, come close at times. I must confess that while walking, distraction has caused me to head into walls and doorframes and run into or trip over furniture. I am good at multitasking in the social and household areas, but as a not-so-coordinated person, gross motor activities require my total attention.

The same is true for me spiritually. Every day I fall in love with worldly things. At different times in my life the distractions have been different. But the heart of the problem is always my heart and who or what it loves the most. Like Samson, I take my eyes off of the eternal prize and the Savior who has won it for me. I focus on earthly things and love them more than that dear Savior.

These days I would say that my most critical distraction is my own collection of wants for my family. I don’t want God to have a plan for us. I want my own way. Just as Samson did, I stop seeking God’s will for us and make plans of my own. No, I am not chasing after an eligible Philistine, but I do chase dreams that become more important to my heart than my God. If I want something badly enough, then of course God MUST want me to have it, right? Not necessarily!

Maybe it would be easier to accept God’s plan for my life if an angel had come to announce it. My sinful heart continues to rebel against God’s desires and plan. I want him to have my desires as his. I often find myself envying the big families and healthy children of others and thinking that of course this SHOULD be what God wants for me. I have been kind, loving, and hard-working; doesn’t that entitle me? Why should he give so many healthy children to families who don’t even lovingly nurture them the way that I would? Why them and not me? This cannot really be his plan!

The questions that my heart rebels with are logical to the human mind. Yet, God isn’t a genie who offers us three wishes. He offers us something better – an eternity in heaven with him. Through his Son, we will share in this blissful eternity. We are not here on this earth to live out our wishes and dreams. We are here to serve this AMAZING GOD who knows the number of hairs on each of our heads. He is the purpose, and when our purpose is anything other than glorifying him in our every action, we have lost our focus.

The wonderful thing for us (and Samson!) is that God knows our fickle sinful nature . . . and he loves us anyway. Knowing that fickle nature, he has given us his Word, the sacraments, and a Christian family to encourage us on our earthly walk. When our eyes stray from him and our steering begins to veer, we are fed with God's Word, redirected, and reminded of his forgiveness by loving Christian friends. God continually blesses us in our earthly lives with so many wonderful people and physical blessings to support us through the journey. What a gracious God that he daily blesses wandering hearts with such riches!

In I Corinthians 6:19-20, we are told, “You are not your own; you were bought at a price.” The price was Jesus' blood on the tree of Calvary. He beat the devil for us and rose in victory. We are his. Our children are his. Our lives are his.

Just like Samson was perfectly made for God’s purpose, so are you and I, your children and mine. He designed every part of us for his distinct purpose. He designed every part of each of our children for his distinct purpose. Even though Samson screwed up big time with his loss of focus and suffered great consequences for it, God still used him.

Samson came back to the Lord. He was blind and a prisoner when he implored the Lord not to let the Philistines win and tarnish the name of the true God. With that repentance, God forgave Samson and allowed his strength to return one last time. The power was not in his uncut hair, but in his GREAT God. He pulled the pillars down at the Philistines’ grand victory celebration, and they all lost their lives. The victory did not belong to the Philistines but to the Lord! The Lord and his great power were made famous through the life of such an unfocused man!

God is using our lives and our children’s in the same way. We are not set apart as Nazarites. We don’t have superhuman physical strength. We do each have special qualities and capabilities that God designed perfectly for his purpose. As he uses us for his purpose, let us pray that through time in God’s Word our wills become more like his so that our hearts do not rebel at his plans, but rejoice in them! Let us pray that he is made famous through our lives and those of our children. Let us live each day as if we remember the price that he paid for us. We are his. May he help us to live like it.

Name Above All Names

Before I became a mother, I was a teacher. As a teacher, I often encountered the problem of teasing and mean behavior at school. Teasing and children saying mean things are inevitable parts of having 20 or 30 sinful, little people together daily. Although, I was blessed to be in a Christian school where these things could be dealt with in the light of Scripture, they were continual problems – with some classes more than others. I often told parents that enduring such things is character building for children and develops interpersonal skills and problem solving. I won’t delve into the topic of how such behaviors should or should not be dealt with at school. What I will say is that “mommy Wendy” needs constant reminding of what “teacher Wendy” knew so well.
Likely you have heard mothers compare themselves to a mother bear. When my children are the object of negative feelings or talk (whether true or untrue) I find myself extremely defensive of them. In fact, my reaction to such things directed at my children is much stronger than to the same type of thing directed at myself. I think for every mother this is the case. That is why the comparison to a mother bear is so accurate. A mother bear fiercely defends her young from every threat, real or perceived.
As adults we are often part of conversations that leave us feeling hurt and defensive on behalf of our children. Often with adults, these conversations are less mean-spirited in nature and more of thoughtless speaking nature. Yesterday, I experienced a conversation like this. Here is what happened:
I had gone to have a therapeutic massage on my injured arm (injured by picking up the sweet big boy we will speak of!). I had never gotten this type of massage before and found that it was a strange combination of painful and very relaxing. The room was dark with quiet music playing and no children in sight. As the therapist pushed on inflamed muscles and I alternately resisted the urges to scream in pain and drool with relaxation the therapist’s questions got the best of her and she began to inquire about the big boy I have at home and why I would need to carry him around. She wasn’t satisfied with the pat answer that I had ready - “He is in a wheelchair.”
She went on to ask me very in depth questions about his physical and cognitive functioning and was clearly shocked and felt that the doctors and therapists must have missed something. Surely in our hour long massage, she could think of a way that we hadn’t thought of to get this boy up and walking! As she thought and questioned, thought and questioned she began to broaden her wonderings to what the future might have in store for my little man. I explained to her that right now his functioning level might be evaluated between 9 and 12 months, with some things far exceeding that and some holes as well. Liam continues to make progress and we hope that he will. We don’t know though. I did tell her that the majority of men and boys living with the syndrome function around a 2 year old level or below. Of course, we hope that Liam will walk independently and far exceed the 2 year old level, but we have to see what God has in store and we value our precious boy no matter what his functioning levels. Upon hearing this, she was flabbergasted and exclaimed “MY GOD, they have parrots that function on a 3 or 4 year old level. That is so sad.”
As I drove alone in the car, I laughed out loud at how people think it is okay to say such thoughtless things. As I have digested this comment over the last 12 hours, what my mind has settled on might surprise you. I have gone over and over the feeling of insult that my son is being compared to an animal and that the animal is somehow better off. But what I am left with is an awareness of something completely different.
You see, that comment was not only insulting to Liam. That comment used my God’s name in vain. I do everything I can to protect my children’s names and reputations, including being angry and offended by well-meant, but mis-spoken comments. When it comes to my Lord and God, the same God who sent his own Son to the cross for my sins, I merely bristle a bit at the misuse of his name. When someone insults my child or thinks badly of him or her, I can walk around bothered for days and weeks about it. But when my God’s name is used to curse, swear, lie or deceive I am momentarily irritated. The name that is above every name… The name at whose sound every knee should bow… This is the name that is signed on the PAID bill for my sins. Paid in full, love Jesus. That majestic name used to swear. That beautiful name paired with the most awful words in the English language. There are even times when I pay $9 to sit for 2 hours and listen to this misuse over and over again in a movie theater!
There are so many wonderful uses for Jesus name, as the hymnwriter points out:
How sweet the Name of Jesus sounds
In a believer’s ear!
It soothes his sorrows, heals his wounds,
And drives away his fear.
It makes the wounded spirit whole,
And calms the troubled breast;
’Tis manna to the hungry soul,
And to the weary, rest.
Dear Name, the Rock on which I build,
My Shield and Hiding Place,
My never failing treasury, filled
With boundless stores of grace
During my teenage years, I often used God’s name without thinking. It became something that fell off of my tongue with no meaning. As I became more intimate in my relationship with God, I realized how majestic and amazing that name truly was. It carries so much meaning and is so important to me that I no longer felt that it was acceptable to use it as a filler in my speech. I wanted to use it in the way that the hymnwriter describes.
Now, as I reflect on the passion with which I guard my children and their names, I also want to guard my God with the same passion. I not only want to guard him with passion, but I want to proclaim his deeds from mountaintops and show my zeal for him in every action. The mom and author, Angie Smith, writes that she wants to “make his name famous” by her life. I feel exactly the same way and I believe that making him famous involves treating his name with more love and respect than I would treat my own children’s.
So as I continue my days here on earth, I do it with the prayer that my devotion to my children will be outdone by my devotion to my Lord. Loving my children is something that God has built into me. It is the easiest (and hardest) love that I have known. It is only with the help of the Holy Spirit that my love for my Lord can be as zealous as that love for my children. My love for my children can turn me into an irrational and crazy momma bear. I pray that through the Holy Spirit, my love for my Lord can be more zealous and crazy than my love for my children! I pray the same for you!

Good Grief

2/19/11

GOOD GRIEF!!! This was a favorite statement in Peanuts cartoons and one that I find myself saying from time to time. I tried to find the derivation of the statement, but didn't have much luck. You see, I have been thinking about grief lately a lot. Not just any grief, but the grief that hits me like waves and leaves me gasping to catch my breath. Specifically, I have been thinking about my grief over Liam's diagnosis and the reality of our life with mecp2 duplication syndrome.

Maybe you are thinking "Wait a minute, is this diagnosis something new?" No, you are right. The diagnosis is over 2 years old. While life has moved on and our lives are filled with daily joys and blessings, I find that every time I think that I have come to terms with our "new normal" I am mistaken. CS Lewis wrote, "Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape. As I've already noted, not every bend does. Sometimes the surprise is the opposite one; you are presented with exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn't a circular trench. But it isn't. There are partial recurrences, but the sequence doesn't repeat."

I think that grief in itself is not the real problem. We are human and we will feel grief. When Jesus was on earth, his most beloved friends felt grief when their brother Lazarus died. He did not reprimand them for it. The Bible tells us that he wept too. But the devil, sneaky liar that he is, worms his way in when we are weak with grief and whispers his lies in our ears. Often grief leads us to take our eyes off of our Almighty God and to focus them on the object of our grief or maybe on ourselves and the way that we are feeling.

I am at that place as I write this. I struggle to keep my eyes in focus on my God. As I listen to the lies, the devil gets a foothold.

The lazier that I become about reading God’s Word and worshipping, the more my focus shifts to my own sadness, the louder those whispers become…

• “Look at that mom….a whole family of healthy kids and another on the way. Why does God bless her and not you?”
• “That boy is just Liam’s age. If only Liam could…”
• “Normal families don’t have to struggle through hours in waiting rooms and doctor offices! This stinks!”
• “You are 36. Time is ticking away and your family isn’t what you had hoped.”

And the more I listen, my discontent grows and the whispers which are becoming louder and louder become about gripes that are more and more trivial. I find that I am no longer just sad about Liam’s diagnosis, but I am resentful and angry over a host of small things. The devils’ lies have become my focus and I am miserable.

Our Women’s Bible study has been studying the women that are mentioned in the book of Luke. The first two that we studied were Elizabeth and Mary. By earthly terms neither of these women had an outstanding life. Elizabeth spent the prime of her life as a barren woman. I wonder if you had met her the week before the Angel Gabriel came with his news what she’d have described her life as. Did she feel that life had let her down? What was her attitude? What would have been her emotional state? The Bible doesn’t share this with us, but does share the fact that Elizabeth clearly believed Gabriel because she said the words “His name is John” when the neighbors wanted to name the baby Zechariah. Scripture also shares Mary’s attitude of Godly submission when, in the face of many difficulties that she would experience because of this pre-marriage pregnancy, her words were “Let it be to me as you have said.”

I would like to tell you that I am like these women. Sadly, I am not. In fact, reading these accounts lately has caused me to bristle a bit. These woman and their (seemingly) easy submission to God’s will even make me a bit angry. Why were they so cooperative? They couldn’t see the big picture any better than I can. Is it easier to have that attitude of submission if an angel visits you? I continually pray to become like these women. But truthfully, right now I don’t even like hearing about them. I much prefer to hear the stories of David and Jonah. These are the ones that soothe my guilty heart. These were men who ran from God, hid from him, made stupid decisions – sometimes decisions that hurt or killed others. Boy, reading about them makes me feel loads and loads better!!!! You see, they did wrong, even terrible things, but they loved the Lord. They took their eyes off of Him and believed the devil’s lies. They repented and God still used them and their lives for His glory. This is music to my sin-filled, pity party ears!!! Forgiveness. It is the greatest gift he could give to David and Jonah. Through Jesus, God gives his forgiveness to us too. Such an amazing gift for sinners who often can’t seem to keep their focus on Him – and yet God did not stop with forgiveness!!!

You see David and Jonah prayed to God. They spent time in His word and with Him. And as they did this, slowly their own wills became more like God’s. The things that God wanted for them and planned to do through them became things that they also willed. God lived in their hearts and their wills changed. Then God used them to carry out His plan.

God will do the same with me and you. He changes our hearts and then uses us to carry out his work. 2 Corinthians 4:16-18 “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. FOR WHAT IS SEEN IS TEMPORARY, BUT WHAT IS UNSEEN IS ETERNAL.”

I really think that this will be a lifelong battle for me, as Liam’s mom, in a different way than it will be for a Christian who doesn’t have a child with special needs. Just as CS Lewis said, this grief doesn’t go away. There is no time frame or ending in my sight. Just as Liam gives our family great joy with his loving personality and each of his hard-earned milestones, every part of this journey is filled with daily reminders that this wasn’t what we had expected or hoped for. We dearly love him, but we also mourn all the typical parts of life that won’t ever be part of Liam’s. Not only that, but I constantly find myself mourning the loss of the big family that I had hoped to have. These are things that cause real grief and I know that Jesus weeps with me over these.

Yet I also know from the pages of Scripture that there is a much bigger picture - one that only my Shepherd can see. So as my heart aches, rather than listening to the foe, I will let myself be folded into my shepherd’s embrace and let him soothe my tears. With my eyes fixed on that dear Shepherd, I will pray, Lord change my heart. Change all of our hearts and use us for your purposes. Help our wills to become more like your good and perfect will.

Sources

CS Lewis, A Grief Observed. New York, HarperOne, 2001

Waiting for God

on Monday, May 17, 2010 at 8:39am

During any given day I can be heard saying “Just wait!” or “Be patient!” repeatedly (probably in a not-so-patient voice). When you live with a five-year-old, you are well aware that waiting is tough. Whether it is waiting for juice to be poured or jackets to be on so everyone is ready for a walk, or the longer wait required for birthday celebrations, waiting is no easy feat. For the little waits that are just part of any day, we try to distract our children. For the long waits, we might make countdown calendars or charts. We often feel impatient with our children’s lack of patience. Interesting, huh? Impatient with impatience.

Lack of patience is a common struggle. We are called upon to have patience with our children, our spouse, strangers who do not understand our children’s special needs, and many others. In some ways we have to be more patient than parents with typical kids. We spend oodles and oodles of our time waiting for medical professionals. We also might spend a very long time waiting for our children to do things that take their peers far less time. The struggle can make us weary. However, more difficult than needing patience with other humans, and more dangerous to our faith, is when we are lacking patience with our God.

There are times when God calls on us to wait. We know that His timing is perfect and that His plan is being carried out. This knowledge helps us with waiting, but often it is still difficult. Sometimes, when we know what we want to happen in our lives, we plan and scheme to make it happen. We succumb to the “get it now” ideology. However, Psalm 37:7-9 directs us to “be still before the LORD and wait patiently for him; do not fret when men succeed in their ways, when they carry out their wicked schemes. Refrain from anger and turn from wrath; do not fret—it leads only to evil. For evil men will be cut off, but those who hope in the LORD will inherit the land.” This waiting that God expects of us is still not easy, but we are encouraged not to worry. Those who hope in the Lord will inherit the land!

Right now, my family’s life is in a season of waiting. We are waiting for our house to sell, waiting for our adoption process to move along, waiting for our annual visit to Germany, waiting for kindergarten for Sophia, and waiting for Liam to move on to the public school system. Wait, wait, wait. Some of these waits are well defined and have a clear end result. Others, like the adoption and selling the house, have time frames and results that are known only by God. This is not an easy way for me to wait. I like to know the time frame and the end result. I keep thinking if I could just get a quick snapshot of my family five years down the road, maybe I could relax about all of this. It was easier for me to trust in God when we had a devastating new diagnosis for Liam, repeated hospital visits, and nonstop respiratory problems to deal with. When I felt that God was my only hope, it was natural for me to look to Him. Now I must daily read Scripture that reminds me WHO is in control and that He is always worth the wait. When I try to do things my way, to push my will ahead of God’s, it will often make a mess. Matters become more complicated.

We can remember the great example of waiting on the Lord that is given to us in the account of Abraham and Sarah. God had promised them that the Savior would come from their line. Yet time passed and passed . . . and passed, and they remained childless. They were getting older. Their friends became parents, and still Abraham and Sarah were childless. Their friends became grandparents, and STILL Abraham and Sarah remained childless. I can imagine that it was excruciatingly painful to want a child so desperately. Yet they had been promised by God . . . As time went on and on, their faith in His promise weakened, and so Sarah brought Hagar, her handmaiden, into the picture. Sarah succumbed to the “get it now” mentality. This led to trouble later on, when God’s promise to Sarah and Abraham had been fulfilled and Isaac was growing up. Sarah was distressed about the inheritance. She wanted Abraham to send away Ishmael, the son that she encouraged him to father with Hagar, so that she would not need to worry. What a mess - two sons from two women . . . one inheritance. Not an easy situation!

No, we haven’t sent our husbands a handmaiden, but have we gone against our consciences at times in order to get our way? Have we trucked ahead with a plan without taking the time to pray about it and see what God’s Word has to say to us? I don’t know about you, but I sure have. The good news: God works through us anyway AND He forgives us. Look again at Abraham and Sarah. Yep, they messed things up, but God still sent the Savior from their line. God loved them and they loved God. Abraham and Sarah’s sin caused a big tangled mess here on earth, but it was washed away when Jesus died. Fully forgiven. Our sins are washed away as well. We are fully forgiven and God continues to work through us, despite our sins.

The real truth is that those of us who get tired of waiting for God become worn down by the waiting. The thoughts of our desires eat at our trust in the Lord. As time goes by, more and more trust is eroded by these thoughts, and soon we find ourselves acting out of impatience as Sarah did. When we feel our trust eroding, we should recall Isaiah’s words: “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” (40:30, 31).

So, who will help us wait on our God? Who will lift us up when we want to start dragging in the handmaidens? GOD! The one we are waiting for has a plan. He knows what is best and will always do just that. He is with us through our wait. He will help us to soar on wings like eagles. What an amazing picture! God will renew our strength! At times when we are feeling that erosion, we need to turn to the Bible. The Holy Spirit works in us to strengthen us whenever we are hearing or reading God’s Word. We will be renewed through His word. God gives us a church family and Christian friends. We also are renewed through encouragement from them.

Let us not lose our hope in the God who is so faithful that He always follows through. Let us not lose our faith in the God who is all-knowing and will invariably do what is best. Let us not lose our faith in the God who loves us so much that He sacrificed His own dear Son for us! Our God is always worth the wait! If we hope in our God, we will not grow weary. The Lord will renew our strength!

Lenten Reflection from the Mom of a Special Child

on Saturday, March 20, 2010 at 8:55am

I have spent the past few weeks pondering a question that has not been asked of me. God did not give me a choice, and I am grateful because I truly think that my answer would not have been God-pleasing. The question: “If God had told me about all of the lives that would be touched, all of the souls led closer to Christ . . . if He would have shared with me the ways that Liam’s life and disabilities would touch others . . . would I have - could I have - said (as Mary did) ‘Let it be to me . . . and my child . . . as you have said’?” Right now, I would have to say that my answer would have been a begging, pleading, crying plea that God would use someone else’s child. From the depths of my heart I would beg for my child to have all of the eternally unimportant (but wonderful) blessings of earthly life: first words (that don’t get lost after saying them for a few weeks), first steps (that lead to walking a few days later), a first day of kindergarten, fights and friendship with his sister, a first best friend, confirmation, graduations, a wedding, a long earthly life . . . and the list goes on and on. On a cognitive level, I know that these things are insignificant and that they can actually LEAD US AWAY from our Savior and the goal of heaven. Yet in my sinful, human heart, they are what I long for in Liam’s life.

Thankfully, God, in His infinite wisdom, did not ask me for my opinion. He made the decision for me. In God’s perfect love, when He formed Liam He allowed a duplicated gene in every cell of his body. Beyond that, God has given me His great grace to be able to see the daily blessings of Liam’s life and our life with him. God creates life, when and how He sees fit. He has the good of His kingdom and the eternal good of each individual in mind at all times. In 2 Corinthians 12:9 Paul writes, “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.” I try to focus on the things of God and pray daily that I will continue to revel in the great blessings of our earthly life and the wonderful ways that God is using Liam’s special circumstances. So even though the unasked question is irrelevant, pondering it has been productive for me because it makes me think of God’s own Son and what God chose to do through him.

John 3:16 says, “For God so loved the world that he gave his one and only Son, that whoever believes in him will not perish, but have eternal life.” Out of love for sinful humans, God chose to send His son to earth. Not as a king, but as a small baby. Not born to a rich, powerful family, but to a poor and unmarried virgin. God allowed His son, also TRUE GOD, to be born under the “disability” of being lowly. In 2 Corinthians 8:9 we read, “For you know the grace of our Lord Jesus Christ, that though he was rich, yet for your sakes he became poor, so that you through his poverty might become rich.” Jesus’ crown was left behind . . . traded for a manger and swaddling clothes. God chose this for His own son!!! Out of love for us, the all powerful, all knowing, perfect God was born into this sinful world. As a human, he felt hunger, pain, and temptation. He was under the authority of sinful humans: parents, church leaders, and later Pontius Pilate and King Herod. Could any of us choose such a “disability” for our own son? God did it without a backward glance!!!

Since I became a parent, my thinking about God sending Jesus to earth expanded from thankfulness to a sense of jaw-dropping awe. Being the parent of a child with multiple disabilities, I struggle to find words that can encompass such sacrifice. Not only did God allow His perfect son to be born into this sinful world, but Jesus’ earthly life fulfilled the prophecies of old, as we especially remember during the Lenten season. Just like Jesus’ humble beginning on earth, his death was not an easy or pretty thing. God knew that and still He chose this for His Son - to save US!

Some people think of the Lenten season as a time of sadness. It is a time when we remember one of Jesus’ dearest friends betraying him for some money. Another friend repeatedly denied knowing him. He was falsely accused, beaten, mocked, and scourged. Finally, he was hung on a cross to die a death of terrible shame, flanked by criminals. These are certainly terrible and sad sufferings for the innocent Son of God to endure, but thankfully the story did not end there.

Jesus uttered the words “It is finished” and died on Calvary, but his time in the tomb was short. When Sunday morning came, the stone had been rolled away to show only emptiness! The angels shared the happiest news that humanity has ever heard: “He is not here; he has risen”! Because of the great gift given in the manger, the terrible suffering on the cross, and the joyous news of Easter morning, we can join the Heavenly banquet when our earthly life is over.

God had a choice. He has a PERFECT son. His son is TRUE GOD. He could have chosen not to demean His Son in such a way – God taking on the lowly form of a servant. He could have declared that humans were not worth the pain and agony of watching His Son’s submission to earthly trials, temptations, pain, suffering, and finally death. But God loved US so much that He chose to send Jesus FOR US!!! Because of God’s great love for us, we are covered with a robe of righteousness. When God looks at us now, it is Jesus’ perfect and holy life that He sees. Our place in heaven awaits – we can go there, all because God chose to send His Son here.

We may never have the selfless capacity to choose a disability for our own child to further the kingdom of God, but we certainly can be thankful that God chose to have His Son take on weakness. Faith in Jesus, our perfect Savior, undoubtedly brings with it fruits of faith that do make it possible for us to live a JOYful life with our special child. We may even be blessed at times in this life to see the ways that God is using our child (and us) to further His kingdom.

May we approach the rest of this Lenten season as not just a time of sadness, but a time to reflect on the absolute joy of an eternal home waiting for us - a home in God’s presence, free of the great disability of sin. Lord, thank you for your Son, through whom we have the promise of heaven!!!

Joyful Moments

on Saturday, February 20, 2010 at 9:11pm

It has been over a year since our son, Liam, was diagnosed with a very rare genetic disorder. I feel that we have accepted his diagnosis and are learning to move on. We have a workable therapy schedule. We have strong support systems, and our life is moving forward in a positive way. My heart has been feeling less weighed down by the thought of life with a child who has special needs and more excited about the way that God is using this in our lives. I am able to enjoy life with Liam every day. Or that is what I thought I was feeling . . . Then someone close to me told me that she feels I have been in a hurry, grumpy, and seeming upset every time she has seen me in the past year. Upon hearing that I thought it was time for a bit of self-reflection. Am I always in a hurry? OH, YES! Am I often grumpy or upset? Only when I am in a hurry! In realizing that while I am trying to run our family's daily life I am operating on a short fuse quite often, I was very disappointed in myself. I have been entrusted with God's precious little ones, and instead of showing them my daily joy in God's great grace and blessings, I am showing them how to rush through life.

What is your attitude every day? I don't mean your attitude when you have the chance to talk about your special child and the amazing things that having him/her has done in your life. I mean, in the hustle and bustle of the moment, what is in your heart and on your lips? Praise to the Maker of your child? Thanks to God for all His great gifts? Well, if you are like me and your answer is "Not always . . ." listen to the great encouragement our Lord has for us in His Word.

Having our TRUE goal in mind at all times of the day helps us to find joy in the moments. Paul says in his farewell to the Ephesian elders, "I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me - the task of testifying to the gospel of God's grace." These could be our words! As Christians, our #1 goal in life is to testify to the gospel of God's grace. Everything else comes later . . . is less important. 2 Corinthians 4:17-18 says, “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal.” This goal puts into perspective the crazy moments, zany happenings, and downright exhausting hours. These things may feel significant, but in the big picture they aren’t. What reassurance for us when our many tasks of the moment go WRONG! Our eyes can be fixed on the real task at hand, the eternal one.

In the story of Mary and Martha, Mary diligently listens to her Savior, while Martha bustles around making sure that her home and her meal are worthy of such an esteemed guest. In Luke 10:41,42, Jesus says, "You are worried and upset about many things, but only one thing is needful. Mary has chosen what is better and it will not be taken away from her." I think that we all know this, but we have to - every day, every minute, every second - remind ourselves. We forget easily. There are school events, church obligations, lessons, therapies, doctor appointments, friends we want to see. The list goes on and on. It is a struggle to get everyone to the places they need to be at the times that they need to be there. The weather doesn't cooperate. The garage door sticks. The baby fills his diaper just as we finally get out the door. The four-year-old won't walk to the car but insists on trudging through the snow. And once again we are late. Now we are grumpy and snappish. We are sweating (although it is freezing), exhausted, and ready to give up. And it is only 8 a.m.! We know that these things are fluff! Unimportant. Only one thing is important: our #1 goal. So how do we keep our focus on that goal? How do we find joy in these less-than-joyful moments?

The Lord gives us EVERY reason to be joyful in ANY and EVERY circumstance. After a long list of complaints, the writer of Lamentations says, “I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me. Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.” God gives us daily evidence of this love. Every blessing that we have is evidence: our children, their smiles, our homes, friends, families, churches . . . the list of blessings is different for each of us. For each of us that list is way too long to read off in an hour’s time. The greatest evidence is that He sent His own son to be our Savior. What an amazing gift; what amazing love! We are forgiven . . . for every grumpy moment, for every rushed prayer, for every time we did not appreciate our blessings, and for every sin we cannot remember. This forgiveness came through God’s own dear son and his death on the cross. Through his death and resurrection our sins were washed away – no longer counted against us.

When we keep our hearts FULL to the brim with our Lord and His word, we will have that TRUE joy. The more that we are in God’s Word, the more we will see our focus shifting, even in these difficult moments. God wants us to know Him and has given us His Word so that we can do just that. He also wants to hear our thoughts, our fears, and our requests through prayer. God talks to us in his Word and welcomes us to talk to him as dear children talking to their dear Father. Without God there can be NO true or lasting joy . . . none. He is the source! All TRUE and lasting joy comes from Him! The more that we are saturated in his Word, the more that we are talking to Him in prayer, the more joyful our moments will be. Let’s be IN His Word and focused in our days ahead so that we might feel true joy . . . in our days, hours, minutes, and seconds. Joy in the Risen Christ. Joy that cannot be taken away. Joy that permeates difficult moments and trying times. True joy, lasting joy, joy that is from THE SOURCE!

God's Plan: Bigger and Better than Mine

on Tuesday, November 24, 2009 at 4:06pm

We were delighted to bring home our second child, Liam. Other than having a bit of difficulty nursing (not unusual in new babies), he was a healthy 8-pound 9-ounce boy. We thought he was perfect: 10 fingers, 10 toes, and startling blue eyes just like his big sister, Sophia. After a few days, he became an expert nurser and we got on with the business of being a family of four.

As the months went by, I began to notice that Liam was not developing like his sister had - or like any of the other babies that I knew. My very first realization of this came when I took him for his six-week pictures – a stress-filled experience that took two tries and yielded only one or two halfway decent photos. I remember driving home and wondering why, when Sophia was that age, we had been able to get her to concentrate on me and end up with so many great photos, whereas with Liam, not only was he fussy, but we could not even get him to look at me or a toy long enough to take a good photo. I had a sick feeling in my stomach, but I just pushed it down and told myself the reason for Liam’s difficulty that day was a combo of reflux (which he had been diagnosed with) and that socially boys develop differently than girls.

The next thing that we noticed, around the same time, was a bizarre arching to the left side. Liam’s whole body would be shaped like a rainbow. All of the muscles on his left side would be tight while the right-side muscles would be loose. I told the doctor. His response was that babies do lots of strange things. He was unconcerned. I videotaped it. He did an x-ray and said Liam was fine. . . . And so began 11 months of visiting every specialist I could think of. Our pediatrician thought I was overreacting, but I was calling every medical professional, biologist, etc. that I could find. Anyone was fair game. I had to find out what was going on with my son. We spent hours in doctors’ offices (in addition to the hours we were spending in therapies) and underwent many tests requiring sedations, blood draws, you name it. We left no stone unturned.

Finally, on a Thursday afternoon when Sophia was napping and I was nursing a 14-month-old Liam (yes - it was an 11-month search!), the phone rang and we got an answer. It was SO MUCH WORSE than I had ever even imagined! What Liam had made him severely cognitively disabled, would give him great physical challenges, and would extremely decrease his life expectancy. If that weren’t enough, I carried the gene! Not only were our dreams for our beautiful Liam shattered, but what about the family that we had planned? What about more siblings for Sophia? Would she never have a "normal" brother or sister whom she could play with, fight with, and confide in? How would we take care of Liam? How would this affect Sophia? The questions were endless . . .

I was devastated! When I wasn't feeling devastated, I was exhausted from running to docs, and hospital stays, and therapies, and trying to give Sophia a normal life. When I wasn't feeling devastated or exhausted, I was ticked! I was mad at my husband and his family for being so positive and supportive about it. I was mad at my parents for being so upset about it. Then I was mad at all the people who have one healthy baby after another and at God for allowing them to, but not me. I might be able to do this with God's help, but I DIDN'T WANT to!!

And yet we have had so many successes and joys in our short journey with Liam. Don't get me wrong; I have not "come to terms” with Liam's disability . . . Some hours, yes. Some days, yes. But other days and hours and months I feel all of those negative things that I felt in those first days. Not so keenly, not as desperately, but I feel them still. But God has not JUST given me great earthly joys with my children to get me through, His Word tells me everything I need not only to get through this but to find joy. And so if you have the moments that I do when it comes to dealing with your child's special needs, God's Word has something to help you.

First of all, God never promises Christians an easy life. Whether you are at the beginning of this journey like I am or have been doing this for 10 or 20 years, I think we can agree that being the parent of a child with special needs gives our lives a different set of challenges. I Peter 4:12 says, "Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you." James 1:2-4 tells us, "Consider it pure joy my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." Being "mature and complete" does not mean that we have some special strength or wisdom of our own, but that we have complete dependence on our wise, powerful, and loving God. God does not promise that our life as a Christian will be easy, but He is with us for the journey. All wisdom comes from Him. If we rely on Him completely, we can find JOY and He will show us how to dream new dreams. He has a plan, not just for us but for our child. Our children are NOT mistakes; God has a plan for each of them!

In Phillipians 4:4, we are told to "rejoice in the Lord always." I don't know about you, but rejoicing was not always at the forefront of my mind during these past years with Liam. A pastor friend was talking about this verse, and he said that it is helpful to remember that the word "rejoice" is made up of two parts: "re" and "joy." The "re" part of rejoice can remind us to return to the source of our joy. Is the source of our joy a perfect family of healthy and typical children? No. It is our perfect God and Lord . . . the sacrifice that Jesus made on the cross of Calvary for us . . . the hope of heaven someday. That is why we "Rejoice in the Lord always." We will always be disappointed when we seek joy from other places. Our joy comes from the Lord.

If we keep our focus on the cross, God will carry us . . . just as Peter was able to walk on the water when he kept his eyes on Jesus. If we focus on the difficulties, the unfairness of it all, the hardships, we will sink as Peter did. We pray today that God will fit each of us with lenses of faith that keep our eyes on Him and will carry us through the difficult days, months, and years ahead.

Maybe all the parents of "typical" kids don't get it. They get upset about going to the doc for checkups and shots. They don't know what it is like to watch their child be hooked to tubes and monitors galore. They are upset if their child is left out of games at recess. They don't know what it is like to have their child always be different, not fit in, stand out, and be stared at. GOD DOES. He gave his Son to die . . . as a criminal . . . beaten . . . hated . . . humiliated. What pain God the Father must have felt. And all for you, me, and our dear, dear children. Thanks be to Him.

Jesus’ great sacrifice on the cross has made us clean. All of the doubts that we have, the negative feelings, anger, or envy - these are gone. When God looks at us now, he sees the robe of righteousness that Jesus gave us. He sees not our weakness, but Jesus’ perfection. Again, thanks be to God! May we keep our focus on Him in the days ahead.

What is Mecp2 Duplication syndrome?

During the past few years, I wrote devotions as a way of processing our "new reality" with mecp2 duplication syndrome. I find that writing about what Scripture says redirects my thoughts and helps me make them captive to Christ.
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The site www.mecp2duplication.com was the site that I found only days after Liam's diagnosis. When I saw photos of the boys who have the syndrome, I knew that Liam's diagnosis was correct. It was shocking to me that he resembled several of the boys so closely.

This site has been a gift from God for me. Through it I have met more than 100 families whose children have the syndrome. Their moms have become my dear friends, support system, and the sounding board for questions that come along with raising Liam. Pam, the mom of 2 boys with the syndrome founded the site and I feel a debt of gratitude to her for the amazing connections that her site made possible. You can read more about the syndrome and other boys who have it at her site.

The following is from her site - About the Syndrome

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The syndrome was first discovered in 2005.

The MECP2 Duplication Syndrome is usually caused by duplication of DNA on the Xq28 region of the chromosome. Most reported duplications are sub-microscopic (cannot be seen with a microscope by standard chromosome analysis) and span 0.3 to 4 megabases of DNA in size. Many cases of “functional disomy” of the Xq28 region (meaning an extra copy of the Xq28 region that occurs somewhere other than directly at Xq28) due to chromosome Xq-Yq translocation, chromosome Xq-Xp rearrangements, and chromosome X-autosomal chromosome translocations have also been reported. Many of these cases were reported before the name “MECP2 Duplication Syndrome” was assigned.

MECP2 Duplication Syndrome is most commonly inherited in an X-linked manner. Most affected males have inherited the MeCP2 duplication from a carrier mother, however, spontaneous (also known as de novo) duplications have been reported. If the mother has a MECP2 duplication, the chance of transmitting it in each pregnancy is 50%. In the case of de novo duplications, the possibility exists that the mother can have mosaicism and therefore only carry the duplicated X chromosome in her ova or egg cells (or only in some of these cells). Because ova or germ-line mosaicism cannot be ruled out in de novo cases, the risk to subsequent pregnancies in de novo cases is approximated to be about 5%. Because the duplication affects the X chromosome, MECP2duplication syndrome occurs in all males who have the duplication. In females who have symptoms, it is thought that the X chromosome with the duplicated allele is active in a number of cells (one copy of the X chromosome is turned off in every somatic cell in females, a normal process called X chromosome inactivation).

When MECP2 Duplication Syndrome results from a duplication that is present on the Y chromosome, or one of the autosomes (chromosomes 1-22), then it is important to assess if either parent is a carrier. To date, no cases of men transmitting the duplication have been reported. This is because, as far as we know, all boys/men who have the duplication have MECP2 Duplication Syndrome. Therefore, in the majority of boys who have the duplication syndrome due to the Xq28 duplication being present on the Y chromosome, the duplication event likely occurred spontaneously when the sperm developed in the father. Just like in females, however, men can have germ-line mosaicism, and so the risk to subsequent pregnancies in de novo cases is estimated to be 5%. If the Xq28 duplication is carried on one of the autosomes, then the duplication may be de novo, carried by the mother, or be a result of germ-line mosaicism.

The Xq28 region contains several genes, and one of these is MECP2(methyl-CpG binding protein 2). The beginning and end of the duplicated region (breakpoints) vary among different individuals, but the finding that MECP2 is the only duplicated gene in all patients with a significant role in the nervous system supports its important role in causing MECP2 Duplication Syndrome. Furthermore, genetically engineered mice that have twice the normal levels of MeCP2 protein develop the features of the duplication syndrome. These studies pinpoint increased levels of MeCP2 (rather than other proteins) as the culprit of this syndrome. This is why the syndrome is now called “MECP2Duplication Syndrome.”

It is important to note however, that some boys have larger duplications that include many other genes. The full extent of phenotypes due to duplication of other genes is not completely understood. We do know, however, that boys who also have duplication of the Filamin A (FLNA) gene are at risk for intestinal pseudo-obstruction and perhaps other phenotypes that have been associated with other types of mutations inFLNA. Therefore, it is helpful for all boys with MECP2 Duplication Syndrome to have a study to map the extent and gene content of their duplication. When detailed studies are performed, some boys are found to have triplication of Xq28 which appears to result in a syndrome that is more severe, especially when the MECP2 gene is included in the triplicated region. Finally, some cases of duplication of Xq28 actually have breakpoints (ends) that are located within the MECP2 gene. In these cases, it may be that disruption of one copy of the MECP2 gene, rather than duplication, causes the phenotype.

Characteristics of MECP2 duplication in affected boys:

*Hypotonia

*As a result of hypotonia, motor development including sitting, crawling, and walking is severely delayed or impaired

*Cognitive Disability 

*Recurrent respiratory infections (in 75%)

*Epilepsy (in 50%)

*Constipation and/or reflux

*Limited or absent speech

*Autistic behaviors

*Ataxia

*Progressive spasticity (usually noticed in the legs more than the arms)

*Stereotyped movements of hands
*Teeth grinding

*Developmental regression occurs in some boys

Characteristics of FLNA duplication:

*Intestinal pseudo-obstruction

*Perhaps other problems