"For you formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well. My frame was not hidden from You, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them." - Psalm 139:13-16
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12.03.2007

spe·cial–adjective
1.of a distinct or particular kind or character
2.being a particular one; particular, individual, or certain
3.pertaining or peculiar to a particular person, thing, instance, etc.; distinctive; unique: the special features of a plan.
4.having a specific or particular function, purpose, etc.
5.distinguished or different from what is ordinary or usual
6.extraordinary; exceptional, as in amount or degree
7.being such in an exceptional degree; particularly valued

Often when we are out as a family we are asked by strangers, "What's wrong with your child?" Not really wanting to use up our family time educating the masses, I normally reply, "She's special needs," knowing that most people have never heard of Nonketotic Hyperglycinemia. There are many terms used for these little kiddos-disabled, handicapped, developmentally delayed/challenged. Uncaring people call them useless, retarded, vegetables.
Aaron and I have found "special needs" to fit Rylee. It doesn't negate her symptoms, the severity of her disorder, but rather recognizes and celebrates her uniqueness.
One of the dictionary descriptions uses "special" in context-"the special features of a plan."
How can anyone not look at this precious little girl and not see her life as extraordinary, of exceptional degree? God has used her to remind each of us of His unconditional love, mercy, and grace. Rylee's life has been one special feature in His Master Plan for our life.
Jeremiah 29:11 "For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. "
God has taught us so much these past three years, and continues to grow us up a bit more in Him.
Your thoughtful nature causes health issues because you worry too much. (Have you noticed all the prescription drug commercials lately?) Your generous spirit means high interest payments on a credit card, or two. (Do you really need to buy a Christmas gift for your cousin twice removed?) Your love for others means you are frequently disappointed. Your hopeful attitude (Pollyanna) causes you to neglect the future, be unprepared. Your availability to others sacrifices your time at home with your spouse or children. Your excitement for life can cause for some misadventures (think bull in a china shop). Your strength of character conceals a prideful heart.
There is a special gift that God gives each of us...yet, we need His guidance to reach our full potential. Honestly, if you think about it...we are all "special needs" in some way.
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"For Thou didst form my inward parts; Thou didst weave me in my mother's womb. I will give thanks to Thee, for I am fearfully and wonderfully made; wonderful are Thy works, and my soul knows it very well. My frame was not hidden from Thee, when I was made in secret, and skillfully wrought in the depths of the earth. Thine eyes have seen my unformed substance; and in Thy book they were all written, the days that were ordained for me, when as yet there was not one of them."

Psalm 139:13-16