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