I want to introduce you to a very special little girl from which I learned so much and hope to still learn.

Anchen is her name.  She has the most beautiful copper colored hair and huge brown eyes.

She turned three on the 4^th February 2012 and I was honored to share the day with her.

Anchen was diagnosed with Lissencephaly as a baby.

This literally means smooth brain, and is a rare brain formation disorder, characterized by the lack of normal convolutions (folds) in the brain.  The surface of a normal brain is formed by a complex series of folds and grooves.  The folds are called gyri or convolutions, and the grooves are called suici.  In children with lissencephaly, the normal convolutions are absent or only partly formed, making the surface of the brain smooth.

She is one of less than two thousand cases reported in the world.  Research is limited and they are not even sure what causes the defect.

She gets almost every seizure that you can think of and some I did not even known was a seizure.

She is on medications some of which are sometimes as strong as for an adult.  The medication makes her very sleepy.  Have you ever eaten while you sleep?  That is how things sometimes go for Anchen.

Once she was in hospital with gastro and she completely forgot to eat.  Her parents had to struggle from scratch.

Her grandparents only saw her eyes open when she was about a year and half.  How are you suppose to learn basic life essentials when you are asleep most of the time?

They are not sure how her brain interprets hearing, feeling, vision etc.

Her parents pleaded that the medication be changed.

However with the love of very ordinary parents that is under Gods guidance she is developing slow but definitely.

Never tell them that God knows to whom to give special angels.  At first I was thinking the same.  I mean I will not be able to do what they are doing.  But that kind of thinking really hurts them and when I started to read on the net about other families I came upon this truth.

God give special children to ordinary parents, and then he trains them to be extraordinary parents (God’s children).

I realized that in life we are just ordinary people with special kind of challenges.  It is the way we choose to tackle these challenges.  If you put yourself in God’s hands and trust in his absolute love, you will learn to become an extraordinary child. It does not make you superior, it just give you special tools to be in the service of God.

Of course you can choose to let the challenge get the better of you, however I then think you are not listing to God.

And this little fact I learned from a beautiful brown eyed girl and her ordinary parents.

At the moment they are reducing her medication and it was like the turning of a page to just watch her bloom.  She is now more awake. 

She has a standing chair in which she learns to stand and train her legs to support her bodyweight and other abilities.

When I visited her a week or two ago her mom showed me and she was totally out of her box.  She held her head upright, and was ‘talking’ and smiling as to say look, see what I have accomplished, do not stop looking, you might just miss something

For the first time I played with her and was not scared that she will get seizure.  It was so much fun.  And a absolute honor to share this with her.

Each day is an experience with Anchen.  You pray that she will learn something new. You pray that the seizure will get less.  You pray that her parents get the strength to make it through the day.

Yes this little girl keeps people on their knees before God. She keeps us thankful for what we have and she keeps me astonished that God love us so much.

Her parents were also blessed with a beautiful, very busy healthy girl a year ago.  Her name is Chante.

My youngest boy (8 today) loves to go and visit them.  When I help Chante’s Mom with Anchen, Devan feeds Chante and plays with her.  I was amazed at my boy’s caring nature.  I mean they are men.

Your wonder how Annelien does this.  I do not know but she is very organized and she never stops. She have shown me to never give up, even when she is dead tired she is there for her babies.  Yes, God took an ordinary lady and is training her to be an extaordaniry mom.

I know her parents will say it is not true but they are an example of God’s love and being his children.

So I think from a scary word like Lissencephaly, God has toughed us so much and then people ask why does God do this.  I think we have to realize that God’s enemy has power but God has the ultimate power to change challenges for the good.

I hope that Anchen’s mom and dad will one day share their experience with the world as this is only how I see the world.

I am going to give updates on Anchen on my quilt-blog and hope that my limited quilt time will let me make her a warm loveable quilt.  Block for block and stitch for stitch and just maybe her development will be faster than my hands.

Ruby