Wednesday, January 9, 2008

For My Niece, Who Shall Not Live in Darkness

I must interrupt my self-centered postings to write about something that has shaken my world.

My niece, my beautiful, 3-month old niece, may never see.

We knew something was wrong. Her eyes were wandering, she wasn't focusing, and her worried parents (my brother and sister-in-law) took her to the local doctor. Local doctor diagnosed two possible problems, but was not certain. We still had hope that it was nothing serious.

Then, yesterday, my niece was seen by one of the top pediatric opthamologists in the country (in another city). He diagnosed my precious niece with this congenital disease. Optic Nerve Hypoplasia. The doctor's tests determined that she cannot see right now, but it is too early too tell what will happen. But he did say she will probably never drive a car and will most certainly have impaired vision or be legally blind.

She will need a lot of treatment, not just to learn how to live without vision or seriously impaired vision, but also because this disease is often associated with other problems such as (1) abnormal brain function; (2) impaired motor skills; (3) impaired speech; (4) seizures; and (5) hypopituitarism, which affects growth and metabolism, and could create problems with development of sex hormones, and low blood sugar.

This is just some of what I have learned about optic nerve hypoplasia in the short time since I learned of my niece's diagnosis, which has been mere hours.

Needless to say, our family is devastated. I want to hold my niece and kiss her and tell her it is OK. I feel like (and am) a complete asshole. When my sister-in-law told me she was pregnant, I was so angry and yes, jealous. She was due when I would have been due if I had not had the ectopic pregnancy, and it was hard to even be around her when she was pregnant. I was angry and judged my brother and sister-in-law because they do not have a lot of money, already have a child, and have a tumultuous and rocky relationship. I was judgmental of them and bitter about the loss of my pregnancy and thought it was so unfair that they were having a baby when they could barely afford it. I was angry that it was so easy for them to conceive, while my husband and I are having such a hard time getting pregnant.

After my niece was born, I fell in love with her at once. At the same time, I physically ached because I knew I should be holding my own newborn infant. But somehow my bitterness over my pregnancy loss evaporated just a little while holding her. She is beautiful and perfect.

After learning of her diagnosis, I am devastated for my niece and my brother and sister-in-law. I also feel horribly guilty about the feelings I had when my sister-in-law was pregnant. They are suffering so much right now and I was actually bitter because they were pregnant. They have no idea at all how I was feeling (I hid it well), but after what has happened, I just feel empty and heartless. And I feel guilty for feeling guilty about my bitterness only after I learned of my niece's diagnosis.

Most of all, I just can't stop crying for my niece. I know she will never read this, but I want to write her a note.

Darling Niece,
I am your Aunt Angie. I love you so very much. You are so special to me. We haven't been able to spend too much time together, but we will. Some will say that your disability makes you less of a person. Oh, that is not true. It will make you a stronger person. And I am here to help you. I am going to read everything I can about this disease and make sure you have the best specialists and teachers and training possible. You have so many people around you who love you, and that love will take you further than you can imagine. And dear niece, although you may never be able to see, you will not live in darkness. Because your parents and I and your uncle and your grandmother and everyone who loves you will ensure that you get the best care and learn everything there is to know about the world. We will be your eyes and we will help you see. You will not live in the darkness.
Aunt Angie
Why did this have to happen?


Tracy said...

I am so, so sorry.

Shelli said...

oh no. I am so very, very sorry.

Denise said...

I'm so sorry.

Don't beat yourself up for how you felt before. You are human and those were just human thoughts and emotions. You obviously love your niece very much and she is lucky to have you as an Aunt.

Anonymous said...

I'm so sorry for this terrible news. you are a wonderful auntie though. I agree you shouldn't feel guilty for how you felt back then. those feelings are totally natural and don't affect your love for your niece one bit, or your compassion for your brother and SIL now. just continue to be the best auntie you can. ~luna