A Wedding

To our girls - a chance to be a flower girl , eat cake, drink Shirley Temples, dance til you are falling down, have tons of grown ups telling you how cute you are, run around with cousins and other flower girls, put flowers in your hair, get some candy, count the gifts, try to mess with all of the DJs buttons and switches until people chase you, stay up late in the dark.

To Liam - warm, humid, noisy, really noisy, confining, too many strange people, too many beloved people who aren't in the places they are usually but instead all together, noisy, really noisy, warm, crowded, too much sun outside, too dark inside, lots of people greeting him, saying how handsome, touching him, unfamiliar smells, noisy, noisy, noisy.

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We had a babysitter for the reception so we could go as a family to the ceremony and the dinner, but spare the 2 littles (and ourselves!  Who are we kidding?) the long night. These are the moments when we realize how difficult this special needs life makes it to do things as a family. Next time we won't torment the sweet boy. We will leave him with one of his wonderful caregivers. And we will miss our boy the whole time and feel sad when we take a photo all spiffed up b/c he will be missing.

And yet these are also the moments when we realize that not only has God directed our journey, but he has placed so many incredible, loving, and caring people into our lives.  He allowed me to see early on that although I stay at home to care for our kids, if I want this family to have normalcy and Liam to be happy and thrive, I need to share Liam's care with these amazing helpers.  May God continue to send us such helpers as needed and may he guard our hearts and minds that we will look at such circumstances remembering that we (and Liam) are beloved children of God and not become discouraged.

Mecp 2 Duplication - Explanation of Syndrome and Most Current Research

This link gives a fantastic and easy to understand explanation of Mecp2 Duplication syndrome and talks about the latest research on it.  It really sheds light on why we are so worried each time that Liam has a simple cold. 

http://sfari.org/news-and-opinion/news/2013/duplication-of-rett-syndrome-gene-triggers-immune-problems?utm_source=Autism+research+news+from+SFARI.org&utm_campaign=e0281b169d-SFARI_Newsletter_20130205&utm_medium=email

This video is so moving - it is worth watching!  Wow!  

http://www.youtube.com/watch?v=u8fKswURt6

Rett syndrome and mecp2 duplication are caused by defects in the mecp2 gene. In one case there is too much protein ad the other too little. The symptoms are quite different, but similar in ways too. Research for Rett overlaps with research for the duplication.

Loving the Insensitive

As a mom of a son with special needs, I peruse a number of chat pages for families whose loved ones have special needs.  Family members often share that people make insensitive comments to them or that their special loved ones suffer indignities because of the ignorance of others.  Many times, when I read the offending things that were said or done, I find it stunning that people can be so insensitive.  Yet in most cases, I believe that the owners of the offending statements/actions would be horrified to know how they had offended.  If I mentally step out of my circumstances (as someone who walks in the trenches and speaks the lingo of special needs families), I can understand why the thoughtless comment was made or the thoughtless act was committed.  I’m not saying that I think it was right, but I do understand where it came from. 

Another thing families often mention as bothersome is staring.  People stare at our children.  With Liam’s wheelchair and his often loud vocalizations, we can’t really go anywhere without people staring.  I think it is natural for strangers to wonder, and I actually find it fairly comfortable if onlookers allow me to introduce Liam and tell them or their children a little bit about him. I have never been a very private person, though, and I always love a reason to chat.  I know that not every family feels this way.  Many just want to be able to go places and do things with the relative privacy that others take for granted.  One website that I frequent even sells T-shirts that read “While you were busy staring at my son wondering what was wrong with him, I was thinking the same thing about you and your manners.”  While this might be absolutely true, I am not sure I would want to display it on my shirt. 

How do you deal with out-of-place or misspoken comments?  What is your reaction to staring?  If your child is able to notice such things, how do you guide him/her to deal with them?

I certainly don’t have an answer for how to react in every individual situation, but I know that scripture is our guide to every situation in life.  1 John 4:7-21, which has been titled “God’s Love and Ours,” is an excellent place to find direction for the sticky, uncomfortable situations we all face daily.  You might read it and suppose it’s a great guide for others in how to show love to our families and children.  While that is absolutely true, it works in reverse as well.  This section of scripture is a wonderful guide for us - parents weary of a world that doesn’t understand our children and who want to defend them - in how to react and why.

1 John 4     God’s Love and Ours
7 Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. 8 Whoever does not love does not know God, because God is love. 9 This is how God showed his love among us: He sent his one and only Son into the world that we might live through him. 10 This is love: not that we loved God, but that he loved us and sent his Son as an atoning sacrifice for our sins. 11 Dear friends, since God so loved us, we also ought to love one another. 12 No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us. 
13 We know that we live in him and he in us, because he has given us of his Spirit. 14 And we have seen and testify that the Father has sent his Son to be the Savior of the world. 15 If anyone acknowledges that Jesus is the Son of God, God lives in him and he in God. 16 And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in him. 17 In this way, love is made complete among us so that we will have confidence on the day of judgment, because in this world we are like him. 18 There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.
19 We love because he first loved us. 20 If anyone says, “I love God,” yet hates his brother, he is a liar. For anyone who does not love his brother, whom he has seen, cannot love God, whom he has not seen. 21 And he has given us this command:  Whoever loves God must also love his brother.

The simple answer is this:  Although we are sinners and therefore offensive to God, he loved us so much that he sent Jesus to die for us.  He shows his love daily with abundant earthly blessings.  Because we are the recipients of this amazing love, and through the Holy Spirit living in our hearts, we are able to show love to others – even those who are insensitive to our loved ones. 

Does this sound overly simple and extremely difficult to you?  Sometimes it does to me, too.

I was discussing Liam’s cognitive progress with one of his specialists.  This specialist is an excellent doctor who usually has a fantastic manner.  We have had him on Liam’s medical team for three years now and have been very happy.  However, as we discussed the cognitive progress, he began telling me about how his Labs (yes, Labrador Retriever dogs) do the same things as Liam.  I felt shock as I realized that this wonderful doctor was, indeed, comparing Liam with his dogs – and they were on similar levels!!! 
We could go all different directions with this, but here is the thing:  In love for others, we take their words and actions in the kindest possible way.  So when things like this happen, I understand the other person with love. I know that while the doctor was certainly wrong to compare my precious boy with his Labs, he intended no unkindness.  Does that mean I don’t point out his mistake?  Not necessarily.  As a Christian, I don’t stop educating others about how to love and accept Liam; I just do that educating with love.

My primary earthly purpose is to glorify God and share Jesus with every breath that I take.  When I do that first and keep my focus on Christ and his sacrifice for me, kindness and love will naturally flow out of my heart. 
When this is a struggle, I can pray every day, many times a day, that God the Holy Spirit will work kindness and love in my heart.  I can ask God to give me HIS love for others when mine is running low.  God will be with me and help me to show love to others.  I can return over and over again to this section of scripture to be reminded that God is living in me and I can do all these things through him.  And through my example, prayer, and sharing scripture, I can help my children to cope with others’ less-than-loving actions as well. 

Will this ever be simple?  No way.  Will there be days when I am weary and fail at being kind?  Absolutely.  Will there be times when instead of teaching others in love I give them “what for”?  Unfortunately, yes. 
Thanks be to God that he has already washed those mistakes away.  His robe of righteousness is mine (and YOURS)!  May we share our JOY daily.  

Favorite mecp2 videos

Liam Learns to Sit Up! -- www.youtube.com/watch?v=mMKbqOvE9xk&feature=relmfu

Liam is 3!!! -- www.youtube.com/watch?v=4cFgjHIIgHQ

Not about Liam, but another mecp2 family…
Brighter Days for MeCP2 -- www.youtube.com/watch?v=eglYr_rpXnM

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!