Wednesday, August 29, 2012

Sympathetic Siblings

Today's gift is sympathetic siblings.

If my daughter didn't live with Rett Syndrome, I can not say whether or not my other two children would have the same level of sympathy for others who are suffering....particularly children with special needs.   They live with it 24 hours a day, 7 days a week, 365 days a year....and they see how hard life is for their sister.  They pray for her all the time, they ask the most heartfelt questions, they spread awareness, they are not afraid to talk about their sister to others....they are unbelievable for only being 5 and 7 1/2 (soon to be 8 years old).

Not only are they sympathetic towards her, but to all children with special needs.  Because of our life situation, we have become close friends with many families who also have a child with special needs.  My children care for their children too!  My children have realized we are all the same, but some of us have been given different challenges in life.  My children do not stare at handicap people in general when we are out in public....to them....strangers are just people.  Sometimes when we are out my middle daughter will notice someone who has a special need and want to ask me a question...because she genuinely cares....so we have a "code" when we are out in public.  We make eye contact and I will nod if I know why...if not then she will look in the direction with her eyes...then when we leave the store or public place we talk about it in the car.  I know she has lots of questions and I always want to answer them for her...in the right place.  And she knows we don't like it when someone stares at her sister.

My middle daughter is amazing when it comes to being a "little/big" sister to her older sister with Rett Syndrome.  What would you say if I told you she talked in front of a crowd of 250 adults when she was only 5?   And then she did it again in March in front of over 1000 people (high schoolers and adults)???  Impressive I know...especial since I do not like to talk in front of a crowd at my old age....and I certainly would never have done it at 5 or 7 years old!!   If you want to read what she said please visit this link, Her Climb Blog: We're all in this Together

Tonight while we were having dinner my middle daughter said, "Mom, when will they have a cure for Rett Syndrome?"  I said, "honey, I hope soon as they are very close to some potential treatments, but I do not have a particular date, just pray it is soon".  Then she said, "when they cure Rett Syndrome, can my sister walk me into school (the current school they both attend) and take the bus home with me so we can talk about our day?"  Ok....at this point, I just want to start crying...but I have to keep it together for my three children...but my heart is melting by the minute!  I respond, "well, I don't think it will be while you are at your current school, because your sister only has two more years left there (this year 4th grade and next year 5th), and I honestly do not think they will have anything for girls with Rett Syndrome in two years...I would love them too, and I pray nightly, but I do not want you to think it would be this fast."  To which she responds..."so when we are middle school and high school they will find a cure and I can take the bus home with her and she can walk me into school then?"  While I wanted my eyes to start flowing with tears right then and there and scream how unfair the world can be sometimes...I held it in and said, "I hope honey...I pray....and I would love nothing more than for your sister to walk you into school and take the bus home with you one day.  I want nothing more than a cure too!"  So I saved the tears for right now....writing this post.

The love she has for her sister is never ending and moments like these make me feel so sad for her.  She wants to have the "normal" relationship with her sister so badly and can't!  She is craving it!  And while she understands why she can not (and for 7 1/2 she understands much more about neurological disorders than any child should know!), she still holds onto the hope she will have the "typical" school experience with her sister one day.  While they go to the same school and share many "typical" things (my middle daughter is known as my oldest daughter's "little sister"), I know she only wants to have the "typical" sibling relationship like her peers have with their sisters.  My heart truly ached for her tonight, but I know due to her sister having Rett Syndrome she is one strong, understanding and sympathetic child who I am so proud to call my daughter.

Here are some quotes for today....

You don't chose your family.  They are God's gift to you, as you are to them- Desmond Tutu

A sister is a forever friend- Unknown

The best thing about having a sister was that I always had a friend- Cali Rae Turner

A sister is a little bit of childhood that can't be lost- Marion Garretty




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