Letter to parents new to ACC (or CACC)

There is hope. It is not all bad news. With lots of love and care, the brain has a "mind-boggling" ability to create NEW pathways and connections, even after birth and beyond. So many children go undiagnosed, and are misunderstood, so be glad for the diagnosis. With knowledge comes power, and there is much you can do to help your child, in play, practice, repetition and love that will build the brain in new, exciting ways never believed possible. And, early intervention. love and not giving up until you succeed are very important.

My personal experience as a mom was shock, fear, sadness, at the terrible diagnosis of Complete ACC of my first born; the reality has been God's presence, surprise, delight, joy, confounding of the wise medical world/ specialists with progress with his ability and hope ((what has come to be entertaining to witness).

My son has Complete Agenesis of the Corpus Callosum (with Colpocephaly), he looks normal, is the typical normal naughty, battles a bit with some things, but soon understands concepts after practice. We chose to let him repeat Grade R as he was slightly immature for his age and was battling with phonetic awareness. It made a huge difference and he was far more ready to go to big school. He is in Grade 2, starting to read well now, and excellent at Maths. He is very motivated by stars, recognition, reward. A perfectionist, thus hard on himself, and there is nobody who tried harder than he does. He is happy and cheerful. Thrives on discipline. Leo is growing into a fine young man of good character, sensitive to the needs of others, and a perfectionist. He had occupational therapy for low muscle tone which was very effective, and completed successfully. His eye sight is perfect, and people in general cannot believe there is anything wrong at all. (including Educational Psychologist after an hour long examination, and new teachers who have only taught him for a while.) He is our trophy of God's grace.

Right now, words mean very little, I know the feeling all too well. I remember my husband and I going to front of the church for prayer... the gynae had suggested an abortion... our pastor just held our hands and cried with us. When Jesus was dying on the cross, the Father too, just cried. The God who created our special child, is the God who specialises in things thought impossible. Who finds pleasure in giving good gifts to his precious children, regardless of how deserving we feel at times.

God does not always change circumstances, but He often changes us.

When we reach the point where we can accept, from our heart, that no matter what cards we are dealt: God is giving us a choice gift . We're then at the point that God works his miracles. Remember He only gives good gifts to his children even although we may have a difference of opinion at times.
We serve a God who specialises and delights in things thought impossible. No good thing does he withhold from those who walk righteously, and urnestly seek him. Trust an unknown future to an all knowing God. If you do not know God, seek Him with all your heart, find Him, and He will make your paths straight.

Having a child with (C) ACC is a challenge at times, but it makes us appreciate so much more in life, and achievements are so much more rewarding.

Lot of love.

(Debra, South Africa)

 

 

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.