Wondering

I am going to post this even though I am somewhat hesitant. I belong to a groups of parents whom have children with bilateral anophthalmia. It is a remarkable group, online, from across the world. The group is comprised of less than 100 members. Most of the time we post tidbits of what is going on in our children's lives, the good stuff, the fun stuff, but sometimes someone looses balance. Regardless of what anyone else thinks, being the parent can be hard-sometimes physically: however, nothing can compare to the mental toll it can take on your mind, even on the good days. At some point, we all wonder what happened in those first few weeks, what did we do to make our babies this way, where did we go wrong? There is no answer. And if there were, I do not think anyone should tell us. Sometimes the guilt of thinking I could have done this to her is suffocating. I can not imagine actually knowing. This is far from a blame game. The group is formed in privacy - so I can not disclose what sparked my answer. But it is my answer to our situation. No matter how any one else views me, I move forward every day, I deal with this the best that I can, despite the conflict or stonewalls. Sometimes I just wonder.

In the beginning I wondered why. One thing is for certain, you can not change anything now. No matter the outcome, our children are to be the people they are - not the people others think they should have been. Ivey has a very long list of mental and physical issues; none-the-less, I love her just the way she is. The challenge of learning to accept and go on with the way things are is hard; however, there is no other choice. Acceptance, not that I always accept our new life for the way that it is, is the only way to move forward, find peace and happiness, and love the life that we have. Ivey has definitely opened the world to endless wonders. She amazes me everyday, with every breath.

And as for other family members, or any one for that matter, they sometimes have their own opinions. I have found that they often have a harder time accepting things, and look for answers. Worse, someone is always looking for a place to lay the blame. It is no ones fault - no matter the reason. Ivey was a complete surprise. We knew of no complications until the moment she emerged, and only her cleft lip was of first concern. The flood of complications were to follow - along with all of the hormones. I know we all have our cups and our portions; just remember you have a choice each day - either your cup is partly empty or it is mostly full. There within lies the choice that we have over our own futures and our children's futures. There are no guidelines to Ivey, she is her own person - bilateral anophthalmia is only an insignificant part of her condition - she can live without her eyes and vision, many of her symptoms she will battle for her Life. We have no fortune teller to even let us have a glimpse at what her future holds. No one knows. There is not even a name for her genetic condition. All said and done, she is my life. If you have ever wondered if you could give your life for another, you all already know the answer. It is yes. I give my life in its entirety everyday - just so that she may live. We all do.
Gwen - Ivey's Mom