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
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12 comments:
Perfectly said, Gwen. Beautiful. I think it's our human nature to make sense of things that don't make sense. Trying to find a place to lay blame is almost a way of finding closure...if we just know then we can move on. Accepting that it just is what it is is so hard, because that's not our nature. But Ivey is teaching big lessons every single day.
I loved the Milestones post so much. I like the idea of printing out your posts and binding them. I'll help in any way if you want!
"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." Beautifully said.
I can’t imagine the thoughts of why, and what you could have done differently will ever completely go away… in many of your past posts and comments, it has been said that you did not choose this for Ivey, nor did you choose this for yourself, but it was in fact God who chose this.
I agree whole heartedly. The only explanation is that God created Ivey exactly the way He wanted her. Every inch of her. It is faith that allows me to be so certain. And God chose you because He knew that you were strong and resilient, that you would cherish her and defeat every obstacle sent your way. That you would hold her life with more value than your own. That you would be an example to those who know you, and even those who do not… She is so blessed and lucky that God chose you to be her mother.
You have already seen the impact of her life on too many people to count. Children with special needs set such a special example of living Christ-like. Ivey will live for and through love. She will teach those around her what values to hold closest to your heart. She will teach us that it is truly on the inside that counts…
With Ivey’s birthday fast approaching, I know you and Matt are so proud of your sweet baby girl. I hope you are also so proud of yourselves. You are amazing...
Psalm 139
For You formed me (Ivey), and my inward parts
you wove me in my mother's (Gwen's)womb.
I will give thanks to You, (Papa),
for I am fearfully
and wonderfully made;
Wondeful are Your works.....
Your eyes have seen my unformed substance (although I may not see you now, I will one day)....
.....The days that were ordained for me, (are Your gift to my parents),
When as yet there was not one of them....
as I am fearfully and wonderfully made...
Sometimes all we have is God's word...
Gwen, I don't even pretend to know what you feel... Only God does..
Thank you for sharing your heart and being transparent....
Love ya
Connie
That was beautiful. I needed to hear some of the words that you said and I apprciate you taking the time to post. Your words are moving and full of love.
Amanda D.
(JenMom's Sister)
Gwen,
What a beautiful post and tribute to the love you have for Ivey. Your strength and insight continues to amaze me. Thank you so much for sharing your story with all of us.
Whitney
That was so beautiful, Gwen. I learn so much from you, Sarah, Trish, and the Mooneys. God is using your testimonies to touch so many lives. I am thankful for you, your hope and determination, your dedication, and the beauty of your words. God bless your sweet family.
So beautifully spoken Gwen! I love how Connie wrote some of Psalm 139. Ivey is so wonderfully made. Not a mistake, for God doesn't make mistakes! Her little life is so precious. Just the way she is!
Gwen, I didn't drink a single diet Coke when I was pregnant with Caiden because I was convinced it would be bad for him. Then I drank three a day (with my dr.'s approval--no wonder I like him!) when I was pregnant with Grayson. Ironically, Caiden was the one born with a genetic stomach disease requiring emergency surgery. Grayson was born fat, happy, and very healthy :)
With Addison I had an equally uneventful, relatively cautious pregnancy. There was nothing until the last couple of days to suggest anything was wrong. And once she was born, I questioned every decision I made while pregnant. Should I have lifted that? Should I have exposed myself to this? And on and on and on. It could make me crazy if I dwelled on it!
And the bottom line is what Psalm 139 says--Addison was created and known intimately in the womb by God. He knows all the answers, and thankfully I don't right now.
Either way, whether I did something wrong or not, Addison is beautifully crafted, an amazing treasure, and worth my life. For me to think any less of her because of a syndrome would be the true tragedy. I know you feel the same way about Ivey--thank you for being brave and honest to post these things.
Okay, I could write a book here, but this is your blog, not mine ;)
"I give my life in its entirely every day..." Also, beautifully put. I am so blessed to know you!
Gwen,
You amaze me with your wisdom and extremely genuine honesty and gratitude. You have seen the truth first hand, that God's beauty is shown forth in all forms and only those willing to look through His eyes will see it. I have absolutely loved getting to know you through your blog. You are a beautiful woman raising a precious daughter and sons. I love your heart. I will say in so many of your posts, I've sensed a real struggle with pressure of some sort from others who don't seem to take the time to understand. Most of the time, you seem easy to forgive them precisely because they can't understand. But whoever it is, I pray God will at least lead them not to judge. You willingly do far more than most of us will ever be asked. And you do it with pure grace and overflowing love.
I have not commented in a long time, but this one brought me back out of hiding. I have felt many of your thoughts over the last 4 years raising our son with DS (which was a surprise to us too). I remember docs and all wanting us to get genetic testing/counseling done to see what caused this. There was NO WAY we were going to do that so that blame could be put on either myself or my husband. Our job was now to raise this special boy - not point fingers.
Thanks for putting it all out there. And I loved the part about your cup being half full or half empty.
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