Thankful For More Than Mittens?

When I worked in an urban after-school ministry with many children of poverty, we once took a group of children to spend a day at the county zoo. Spring was just beginning, and the day started out extremely cold. Every boy and girl was expected to wear a hat and mittens. As the day wore on and the sun became brighter, things warmed up. By lunchtime the kids wanted to take off their hats and mittens. I noticed one of the girls remove her very nice, new-looking hat and mittens and toss them into a trash can. I immediately asked her why, and her reply was, “I don’t want to carry those. My mom got them free, and she will get me another pair free, too.”

You and I have been given so much more than a free hat and free mittens. But are we just as ungrateful?

Although we deserve only punishment for our sins, God saw fit to send his only Son to the cross of Calvary for us. Through his death and resurrection, we will live eternally in heaven some day. God has given us his beautiful Word so that we can know him better as our dear Father in heaven. God sent his Holy Spirit into our hearts, and through his Word the Holy Spirit created faith and nurtures that faith. God truly is the gift-giver of all time! And he doesn’t stop there . . .

Every day, God provides us with earthly blessings in abundance. We have homes with heat in the winter and a/c in the summer. Most of us drive cars. Our children go to schools, and many have amazing teachers and therapists who are emotionally invested in their learning and growth. The list of blessings goes on and on and on and on.

While God blesses us so greatly, we are still living in a world marred by sin. Often our blessings are shadowed by hardships and difficulty. Even in the midst of the hard times, our God gives us so much to thank him for. Psalm 30:4-5 says, “Sing to the LORD, you saints of his; praise his holy name. . . . Weeping may remain for a night, but rejoicing comes in the morning.” Similarly, Psalm 126:6 observes, “He who goes out weeping, carrying seed to sow, will return with songs of joy.” You see, even in the midst of great hardships and pain, the cause of our inner joy still burns within our hearts. Our faith in Jesus and our hope of heaven give us joy that defies our circumstances. We know joy will come in the morning, and that knowledge carries us through.

So how can we thank a God who abundantly blesses us and has given us his own Son as the ultimate sacrifice? How do we thank a God who gives us earthly blessings with such abundance that we cannot even count them all? The Bible has a lot to say about thanking the Lord:

Psalm 100:4: Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name.

Psalm 105:1: Give thanks to the LORD, call on his name; make known among the nations what he has done.

Psalm 106:1: Praise the LORD. Give thanks to the LORD, for he is good; his love endures forever.

Isaiah 12:4: In that day you will say: “Give thanks to the LORD, call on his name; make known among the nations what he has done, and proclaim that his name is exalted.”

What does thankfulness look like in our lives? Out of thanks, many people offer prayers and worship to the Lord. Many offer acts of service to other people. Many offer special monetary gifts to missions of their choice, their church, or someone in need.

In Old Testament times, the Israelites had clear guidelines for bringing offerings to the Lord. The Lord had specified what could be brought, how it should be brought, and how it would be sacrificed to him. These offerings were a picture of the Sacrifice that was to come. Since every law was fulfilled in Christ, we don’t have specific rules about our sacrifices.

We recall the Bible story about the first children in the world, Cain and Abel. When they became workers, they each brought God an abundant thank offering, but God found Cain’s to be unacceptable. It wasn’t unacceptable because of its content, but because of the heart of its giver. Cain did not give out of the overflow of his heart, and so his offering was unacceptable. When we think of the blessings we have been given so abundantly and spend time in God’s Word, our thank offerings will begin to overflow out of the love in our hearts. Colossians 2:6-7 says, “So then, just as you received Christ Jesus as Lord, continue to live in him, rooted and built up in him, strengthened in the faith as you were taught, and overflowing with thankfulness.”

When we live “overflowing with thankfulness,” others take notice. (Writing that made me laugh because, who are we kidding?! Our children have special needs - others take notice of us anyway!) As they take notice, it is our joy – our defiant joy in the face of difficulty - and our focus on God’s grace that they will note. The Holy Spirit will use us to bring the news of Jesus to these people. When we live this way, our lives become a thank offering to God. Every day becomes Thanksgiving Day.

So this Thanksgiving holiday, maybe while we are thanking God for good food and enjoying our families and friends, we can share our inner joy, our relationship with Jesus, and our hope of heaven with others. We don’t need to use words. As they watch us overflowing with thankfulness (maybe even in the midst of difficulty), they will see. When our lives overflow with Christ like this, they are an offering of thankfulness to God – an acceptable, from-the-heart offering. May our offering this Thanksgiving be an overflowing life!

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