I remember driving home from that appointment and I called my sister and cried. I cried for Julia - for the pain she has had to endure and the bravery she has shown at such a young age. I cried for myself - what had I done wrong? Why me? Why Julia? What was going to happen? Would my baby be able to see out of both eyes?
My sister was wonderful and just let me cry. She didn't try to fix it or make it better, she just listened. So far all of you wondering how you can help a friend in a similar situation, here is some advice.
Don't say:
- It is going to be okay. You don't know that and can't guarantee it. A better choice of words: I know this is difficult and the future is scary, but I will walk with you to the other side.
- It could be worse. She/He could have cancer, heart disease, etc. We know it could be worse. We visit hospitals all the time with our children and we see other kids in terrible health situations. But we don't need to hear this right now. Because right now it is "worse" for us. It is our baby and we are scared and angry and upset. A better choice of words: This is horrible. It is not fair that your child is going through this. It is okay to be upset, afraid, and angry. How are you really feeling?
- At least she/he has a good eye. Again, we know this. And while we are thankful for this - it doesn't help to be reminded in this moment. We are scared, sad, and angry about the other eye (leg, arm, whatever the case may be). A better choice of words: What is her prognosis? Do you want to tell me about the situation? How can I help you while you go through this?
I think most of all we just want to be validated. We may feel like our world is crashing down around us and we need someone to understand that. To hear us vent, be scared and rant about how unfair this whole situation is. Someone to listen.
I know that I have felt lots of emotions surrounding Julia and her "eye." It has been a roller coaster ride that is neverending. I have wondered, "Did I do something during the pregnancy?" "What did I do to make God angry?" "Why is this happening?"
A couple weeks ago at church I heard a new worship song. Here are the lyrics:
All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
All around
Hope is springing up from this old ground
Out of chaos life is being found in You
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
All around
Hope is springing up from this old ground
Out of chaos life is being found in You
You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us
You make me new, You are making me new
You make me new, You are making me new
You are making me new
You make me new, You are making me new
You are making me new
And I realized, God is making me new. He is making beautiful things out of the dust. Don't get me wrong, it isn't easy or fun. This is the challenge my daughter has and I am going to let God make something beautiful out of it. I have never liked the Christian platitude that "He turns a mess into a message." When I am in a "mess," the last thing I need to hear is that God is going to use it for his glory. Really? God gave me pain and suffering on purpose so that He can have a message? He made my daughter suffer so that He can have a testimony. I don't buy it. I'm not sure why some people suffer in certain ways but I know that this journey is changing me. And I am going to try to let it change me for the better. Not for a "message" or "testimony" but because He cares about me. God loves me and wants my life to be a garden springing out of the chaos of this world. So in the chaos, pain, hurt and fear - I will find beauty in the dust:
He is making something beautiful out of us:
And if you want to listen to the song, here is a link:
You Make Beautiful Things - song
Well said!
ReplyDeleteThat's a favorite worship song of mine. I went on a women's retreat this past March, and a dear friend of mine talked about a tragic loss of her son that she has gone through this past year. She was adamant that the Lord didn't do this to her family to teach others, but she did talk about how we can (in time!!!) let others learn from our pain. Not to "let our pain be in vein." It was an awesome lesson that I learned a lot from. We are planning on having a 5k run sometime in the next year to raise money for a local vision foundation in honor of Grant. We are going to have some type of ministry cards that talk about how as thankful we are that Grant's sight has been restored, we are praying deeply for his spiritual sight to be restored as he gets older. Anyway, it's still a huge work in progress, and I do think God can use it. But you are most definitely right. He didn't do this to our children to teach someone else something. He loves our children more than even we do! That's a pet peeve of mine for people to say. :)
ReplyDeleteThis is beautiful Laura!
ReplyDeleteOn the other side of a storm cloud the sun IS shinning, you need the rain from the storm to create a rainbow. And when you see that rainbow form from your pain it is the most "beautiful thing!" We will see rainbows, one day we WILL see rainbows and they will be the most beautiful thing we have ever seen. We will know it, we will feel it because we know what it took to make it.
Thank you for this!
One thing I have learned through Austin's life, platitudes are not something to say to anyone struggling with any situation. Whether it be disability or illness or something worse or something I think is insignificant, do not say the first thing that comes to your mind. Likely they have heard it 20x and they are sick of hearing it.
ReplyDeleteAlso, I love that Julia's patch matches her shirt perfectly. I love the little head picture. They are so sweet. You have beautiful children.
Hi, I just wanted to say thank you for sharing Julia's journey - I live in Australia and my 8 week old daughter had a unilateral congenital cataract removed 4 weeks ago - we have been on the path of patching and contacts for only 3 weeks, but it is reassuring to know we are not the only family going through this. My daughter and I still have a long way to go, but we are determined to see it through. Thank you again, Kendall xx
ReplyDelete