Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))

Welcome!! Grab a cup of coffee and visit with us! We hope you enjoy our story! (((HUGS)))
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Wednesday, October 10, 2012

Fetal alcohol and Down Syndrome

In a perfect world I would think that having a precious baby with DS would be enough challenge in itself.

But in a fallen world, other things can come into play~ babies who have DS, can have birthmoms with drug and alcohol problems. In fact I know a birthmom due to have a baby with DS soon, who has alcohol and drug issues.

**Will you please join us in prayer for this birthmom and her baby with DS she is carrying. God knows who she is.**

This breaks my heart. FAS, FAE, or drug effects on these precious souls is an added burden.

Meet our LOVE, Noah~
Noah is 9 years old. He has the small head, protruding ears, flat philanthrum, wide spread eyes, so common with FAS. His precious birthmom was an unwed mom. I make no judgements. My heart hurts for her. A child of God who turns to alcohol. A baby who suffers her consequences. Makes me so relieved that God is in control. 
So is it DS and FAS or FAS and DS? I hate labels, but sometimes you just wish you knew what the primary diagnosis was. Just my human nature.
We do know that Noah should walk! Praise God and thank you to his Baba's help!! He's now walking along furniture!

He does "learn". He now knows what "shh" means :o) and he knows a tissue to your mouth means- "no spit" LOL!!

He loves routines, he's readily learned the routine of -LOVE=food= clean clothes and clean warm jammies= lots of clean diapers=quiet sleepy nights= happy good mornings, and then it happens all over again! :o)
He's still finds it challenging to "play". If overstimulated by Julius' very active play, he lays on his back, pulls his sleeve off of one arm and chews it to soaking.
No matter how many fun chewies we give him, that sleeve calls his name! ;o)
He has a great desire to be loved. His sensory seeking is all about not feeling alone. My heart breaks for all of the pictures I have of him in his Country, eyes shut tight as if awaiting rejection, arms reaching blindly. Reaching-reaching-reaching. Then grabbing and holding on to whom ever, whatever. We don't see that here. In fact we hold his hands so much, he lets go!
Is it a blessing that Noah doesn't understand how the FAS affects him?

Our Andy age 36 and Faith age 11, struggle each day to understand how FAS affects their lives. Andy and Faith don't have DS. They ask questions about their "disability". Sometimes their questions haunt me. Andy has asked me many many times "Why can't I be normal mom?" (I know- what is normal, but his thinking is high enough for him to be confused about his and our thoughts.)

Holding Noah, LOVING Noah. I guess that's enough for him and should be enough for me too. He lives a beautifully simple life. :o) regardless.
We thank God for our Noah Faithful!

6 comments:

  1. This is a beautiful post. I don't think a lot of people realize that people with cognitive disabilities can be painfully aware of their limitations. It's tragic.

    Of course, then you also have people like Noah, who is just content to be Noah! :)

    Always thinking about you and your family. I've been following this blog for quite a while now, and I still can't believe that the whole crew is finally home!

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    1. you are so sweet! (((HUGS)) Thanks for reading! :o)

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  2. Hello...I just happened to stumble across your blog and completely enjoyed reading Fetal Alcohol syndrome & Down syndrome. Your kids are so precious. I was curious about Noah...did you have a chromosomal analysis done on him? The reason I ask, is because he has features of Kabuki syndrome. Maybe the mixture of FAS and DS combined have given him those similar features. Anyway, God Bless you and your family. Very, very beautiful!

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    1. Thank You!! I will ask for genetic testing! We had our boy Julius tested when he came home because his Dr (Urologist) said he did not have DS and he was a girl! HA!! He does have DS and he is a boy! I do see the similarities of Kabuki facial features in Noah. BG said they did testing- but we will do our own now! (((HUGS)))

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  3. Hi, I hope you don't mind me commenting, but the other Anonymous has a point - Noah's features are very much those of Kabuki syndrome, and not Fetal Alcohol. He should be seen by a clinical geneticist as he most likely has a mutation in either the gene MLL2 or KDM6A; it would be very sad if his birth mum is blaming herself for something that is not connected with alcohol, but rather a rare and unpredictable consequence of gene mutation that could happen to anyone. I hope this is available for you, and best wishes for your lovely kids.

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    1. Thank You! He was tested last fall and he does not carry or have any Kabuki mutation. After the comment of Kabuki was pointed out last year we had him tested!
      (((HUGS))) to you
      And his precious birthmom had a "history" which is how we knew possible FAS, which we know now is true. Bless her soul no one "blames" her. She gave us Noah!

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