After Nellie's new diagnoses my mother said: Well you better start thinking about her care after you're gone. Little did she know that was something I'd already thought about over and over. I think all parents regardless of if their child is disabled or not. We do have a guardian picked out, but if our other children are old enough we hope and pray one of them would also take care of their sister. The last thing I ever want to happen would be for her to be taken away from her family and put into a home.
I have no doubt that one of Nellie's siblings would take her, why, because they adore her. I grew up with a disabled sister and my mother basically threw me to the side. I was determined not to allow that to happen in my house. The other children have always understood Nellie and the things that are "wrong" with her have been explained thoroughly to the best of our abilities. The understand she may not always be able to do things other people do and they always baby her because of this. They are gentle, patient, and very kind to her. They take her under their wings and will help her find a way to join in their activities.
Yes, my children get disappointed at times when we can't do something because Nellie can't handle it, or if we have to leave somewhere because Nellie got sick, but they always rub her back or hands(Th only two places they can touch on her) and tell her it's okay.
I think it's important as a parent that each child feels special and loved and it is because my children are they are so excepting. In fact my two middle daughters look forward to hospital trips so they can ride the elevators. All of our lives have changed in four years, but where my kids may fight, argue and generally just torment each other they don't Nellie and when it comes down to it they rally together for the good of the family.
I worry that our blood tests will come back me and Dave are the carriers and a few of our other children have this condition as well. I am thankful they are not as effected as Janelle and I'm glad their lives will be easier than hers. But what I am most glad about is they will always love their sister.
I have been witness to many occasions of love poking it's head out from them. Leanna who weighs more than 15 pounds less then Nellie will let he sister climb on her back and give her a piggy back ride. David will sit next to her and watch TV shows made for a three year old. Sara just yesterday watched her sister at a park so she could play longer. Emma will play barbies and never complain when Nellie steals them. It even seems Devony realizes something and sits and laughs at her sister. It warms my heart to know how much love is in this house. I am sure it oozes out the windows and flows across the neighborhood at times.
So I am sure when my time comes the only fighting between the siblings will be who Nellie is going to live with. I know they like us ill be thankful to feel the love and happiness in their households and with their children :)
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