Is it Fair?

When we have children, we give ourselves over to them — special needs or not.  When my daughter Ellie was diagnosed at birth, I decided right then and there I would do everything I possibly could for this baby. Two years later Ellie’s sister Emily was born, full of spirit, bright and beautiful, and without special needs. It has been an incredible joy to raise my two girls, although I am doing so in two very different ways and I constantly feel like Gumby! Because of Ellie special needs, she has taken more of my energy physically, mentally, and spiritually. The doctor’s appointments, the therapies, the testing, and the constant 24/7 worry– everything is about Ellie. I am doing everything I can to give Ellie as much ammunition to tackle life as possible. It is ongoing and an exhausting process.

If you ask Emily what it is like having a special needs sister, she would say her mother’s life is all about Ellie. This is essentially true, and it pains me beyond words. I have tried hard to be fair and give as much as I can to both of my girls. Emily has a great life and has been spared no privileges. However, she has always just wanted me without her sister.  No question that it is a struggle having a special needs sister. Emily has risen to the occasion and done the best she can. A lot of the feelings Emily has towards Ellie are perfectly normal, but Emily feels guilty for having those feelings because Ellie is special needs. This year, the girls will be 15 and 17 — trying ages in life regardless of whether or not they have special needs.

All children are entitled to the unconditional love of their parents. My mother raised my three siblings and me completely equally – she could do that. We thrived because of this. She raised us to be independent, loving individuals. I have learned from the best. However, because of Ellie’s special needs she has consumed more of me, and though it is not intentional, Emily feels slighted.  It hurts me to ask, “Is it fair?”

We stress in our workshops the need to create supplementary expense worksheets for special needs children. They will never be 100% independent, so we must ensure they have what they need for the rest of their lives, even after we are gone. We need to make certain that they are set financially, physically, and mentally. Is it fair if most of our present and future resources go to the special needs child? I would love to leave my estate 50/50 to my girls, but is this fair? As I plan, I am making sure Ellie is provided for in a way that gives her the resources she needs so that Emily can have her independence. Emily will be able to choose how much responsibility she wants to take for her sister.  If it means more resources will be earmarked for Ellie so that Emily can make this choice, then I say yes, it is fair. Emily has given her childhood to her sister, so she deserves freedom as an adult. Of course I know that Emily will want to be part of her sister’s adult life, but she also has a vision of being a trauma surgeon when she grows up. So I say yes, it is fair to give more to Ellie; this will allow Emily the freedom she needs to pursue her goals.

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