Thursday, November 8, 2007

And she said...

Friends and Blog Readers: In response to the e-mails I received about my sister's comment to my post yesterday, she has posted a reply to my reply entitled "Autistic Kids ROCK" on her own blog.

Her blog post further solidifies the point I made in the first place:
Our individual perspectives are skewed
as we look through the smudged glasses of our own experience.

As I mentioned yesterday, while I would love to be fully and completely overjoyed for all of my pregnant friends with no other hidden emotion, I cannot be. (Not yet, at least.) My experience of multiple losses thus far prevents that total freedom. While I'm sure my sister would like to be sympathetic to my continuing pain of loss and the struggle to grow my family, the outcome of that decision for her family and the daily struggle of raising an autistic child prevents her from being completely sympathetic to me.

I do have children who irritate me from time to time. My son has ADHD, and while life with him has been a hard and often frustrating road, I get those good moments, those moments of connection, those cuddles, that love. My daughter can be generally irritating in a way that any growing girl can be, but all in all, she is a joy to my soul and the light of my life.

Nothing I've gone through with my children has been more than slightly worse than average, mostly everything has been similar to the average struggle of parenting children who are healthy and whole. Because of my perspective, because of my experience that children are God's blessing and His reward, and because so far raising kids has been the best thing I've ever done in my life, I've wanted to have more children and have pursued that end through hardship and four losses. It is that positive perspective that even sent me under the knife to have my uterus, along with the way I would ever be able to bear children, permenantly modified in an effort to prevent more deaths and to dramatically lower my risk of premature delivery in any possible future pregnancies.

But my sister looks at life and childbearing through different glasses. The context of her comment is far different from mine. She has a daughter who, though extraordinary in my opinion, is probably similar to any other random teenager terrorizing her parents and preparing to leave home. When her daughter was small, my sister desired to grow their family, and as a result, she and I have similar journeys of loss (which is why the insensitivity of her comment shocked me to the core). Beyond that, though, my sister's day-to-day life is quite different from mine. Following the death of her own 22-week preemie, she and her husband pressed on and life with autism is the result.

In the way that my kids love and connect with me, my sister received love and connection from her daughter, but not her son (at least, not in a way we without autistic children would understand). She is constantly challenged and every part of their life is affected in ways I cannot begin to conceive. You can look back through her blog and see. Her struggle with autism is the result of that trying one more time, and though she loves her little one, the decisions she made to get to where she's at seem to burden her and haunt her still. I'm confident it's that amped-up struggle, frustration, and irritation that forms the foundation for her expertise to tell me to suck it up and move on.

But back to my perspective (it is my blog, after all): Yes, kids can be irritating, and yes, that irritation comes in such varying degrees that from one end of the spectrum you cannot even imagine the other. But in spite of our private pains and hardships, our perspective shouldn't be all there is. There is more to life than a general sense of egocentricity.

Every pregnancy could end in loss. In fact, only one in four pregnancies make it. Four out of my five pregnancies have ended in loss, so statistically, I have tipped the scale. Even though because my experience in pregnancy and loss could make me an "expert," who am I to say, "Oh no, don't get pregnant. You could be like me." I would never, ever tell anyone to suck it up and move on beyond their desire to pursue parenthood because of what could happen. "Expert" opinion is only that, an opinion. It is neither fact, nor the Truth.

Basing a life or a decision on what could be is a fearful and empty way to live. Could my desire for another child, or for a healthy child, never be fulfilled? Absolutely. Despite the body modifications, am I still at risk for a child born prematurely or one who will die? Sure. But on the same token, I could have a child who is born healthy with no complications who fills our life with joy and wonder, and that child could just become sick all of a sudden and die. I could have many years with a son I bear, and my healthy boy exploring like healthy boys do could get run over by a train and be killed.

My point now, as it was yesterday, is that I struggle because I want to feel one way, and cannot yet, merely because of my experiences. Those experiences and my response to them is what I long more than anything to have changed, so that in them, I find myself not to be defensive, but rather, humbled. I do not need my experiences to make me right, but rather, merciful. And just as I do already, may I moreso share grace and comfort with those who hurt like me, instead of criticism and expertise.

"Children are a gift from the Lord;
they are a reward from him."
Psalm 127:3

"...Look at every proud man and bring him low,
look at every proud man and humble him..."
Job 40:11b-12a

"Now which of these three would you say was a neighbor to the man
who was attacked by bandits?” Jesus asked.
The man replied, “The one who showed him mercy.
Then Jesus said, “Yes, now go and do the same."
Luke 10:36-37

"God blesses those who are merciful,
for they will be shown mercy."
Matthew 5:7

"There will be no mercy for those
who have not shown mercy to others.
But if you have been merciful,
God will be merciful when he judges you."
James 2:3

"All praise to God, the Father of our Lord Jesus Christ.
God is our merciful Father and the source of all comfort.
He comforts us in all our troubles so that we can comfort others.
When they are troubled,
we will be able to give them the same comfort God has given us."
II Corinthians 1:3-4


  • Amy

    Well said.

  • Christy

    Oh Mandi, I never meant to come across as insensitive and I would never tell you to "suck it up". I just meant we have to take what life throws at us in general... I guess I am just not as eloquent a speaker as I thought I was. I truly apologize if I said anything to hurt your feelings and thank you so much for coming to my defense.

    I guess I am a little scarred by my experience, but even in my struggle with autism I still have those days when I wish I could try again. And of course I love my children, both of them are exceptional in so many ways. I thank God for them everyday and I couldn't imagine my life without either of them. I wouldn't trade them for the world.

    Again, I apologize profusely. I never fully realized how harsh I may sound... Usually I'm just being silly and sarcastic but I guess that doesn't always translate very well to the written word.

    I love you with all my heart and I would never intentionally add to your pain.

  • Amanda

    It takes courage to apologize in public. I appreciate it very much...

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