Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus.
Phil 4:6-7

Friday, November 29, 2013

Who is perfect? cont'd.

I apologize for stretching out this story. I have done a real job on my back, and it is taking me five times longer to do any job, so preparation for Thanksgiving was precarious at best, cooking yesterday was difficult, and then we threw in the "cat's accident." I am still entertaining a houseful at dinner time, so I pray that I have the grace to hold up under pressure.

I also got a little bit of "cold blogger's feet" after I posted Part I. I felt sure I had offended readers and would offend more. But you know the Edmund Burke quote, "All that is necessary for the triumph of evil is that good men do nothing."

There is also, "No one could make a greater mistake than he who did nothing because he could do only a little."

And, "An event had happened, upon which it is difficult to speak, and impossible to be silent."

It seems Edmund Burke and I were quite of the same mind.

So, if you read Part I of my story, you know that I learned early on in my motherhood that striving for some form of perfection is not only impossible, but dangerous. Likely it's a concept perfect by old hairy legs -- "must not have anything that is not perfect." When we seek perfection, we are disappointed, for nothing is perfect, except God. We can strive to be like God,

Therefore be imitators of God, as beloved children. And walk in love, as Christ loved us and gave himself up for us, a fragrant offering and sacrifice to God. Ephesians 5:1

 but to strive for perfection is prideful. This is a lesson I have to learn every day, but fortunately it is a thought that is very close to the surface of my consciousness, so I remember it often. It is our nature to want perfection, in one way or another. We all have a different idea of what should be perfect. 
I believe our faith in God is what dictates our perfect ideals. Clearly my my neighbor (Part I) thought her child should be perfect, and having the life of her child was not worth risking any form of imperfection. Better to be dead than imperfect, right? That sounds cruel, but it's true. If that makes you angry, I can only remind you that the first response to truth is anger.

As a mother of 24 years I certainly have learned that a child imperfect at birth is merely facing the first of an abundance of imperfections discovered throughout life. We become imperfect right off the get-go, most of us. And in fact, most of us are not even perfect at birth, even those who look perfect, according to some human idea of "looking perfect." (We're all perfect in our parent's eyes, thank goodness.) Our genetics give us predispositions for all kinds of imperfections, from life-threatening allergies to life-ending high cholesterol. Those are just the hidden imperfections.

Which brings me to the reason I started writing this "story." I picked up a book last week, and it offended me so greatly I ended up in tears, closed the book, and will never read anything from the author again, not a blog post or a best-seller. I have decided not to tell you who the author is, nor the title of the book, nor mention her daughter's name. She is a well-known blogger, especially for the topic which she wrote the book about, and if you have read the book, then you know. But, if you haven't, you might accept the truth (or what is written as truth in her book) better not knowing too much background. 

The author's story is about the birth of her daughter, a baby with Down Syndrome. The author did not know in advance of her daughter's birth that she would have Down Syndrome, and she was stunned to learn the truth at her daughter's birth. I had read the author's writings on her blog about her daughter's birth, about the surprise, and about her subsequent acceptance of the condition. The blog posts I have read, however, don't even touch the depth of her grief at the birth of an "imperfect" child. I only read the blog a few times, however, and maybe she did divulge the whole story and I missed it. The book really gets into it. 

Long story short, the author goes into quite a bit of detail about how many friends she has, how perfect her life is, how wonderful her husband is, how darling, how perfect, her first daughter is. She tells how her friends came to her, and supported her when she was at the hospital, brought her food, gifts, stayed with her all night long while she cried, and cried, and cried, and apparently said things she never said to anyone before or since. She cried when she spoke to her family on the phone, over and over. She cried each time a new friend came and she experienced the newness of the diagnosis (which at that time had not even been formally diagnosed). She cried and cried, and said she was so sad, over and over and over. 

I finally decided I would be the friend who said, "Ok sister, your five minutes of crying is up. Now pick up your baby, love her, and thank God for the beautiful gift that she is, or I'll take her home and make her mine." In other words, I would not be her friend, I think. 

The author talked a lot about how she loved going shopping, eating out, playing and cooking with her perfectly beautiful little first born daughter, living a rather glamorous and rather wealthy life. She loved things, it became very clear, the farther I got into the book. She loved pretty, perfect things, and it is very clear from the moment her daughter was born, that, at least early on, immediately after her daughter was born, she did not find her daughter to be either. She mourned the loss of the daughter she thought she was having. She kept saying she wanted to go back in time to the time before her daughter was born -- when she still thought she would be so perfect. She mourned events of the future that she would not be able to experience because her daughter was "imperfect" -- like the weddings they would each have with each other as the maid of honor, like birthday parties, and like baking sessions and all of the worldly things she imagined would never happen because her baby had Down Syndrome.

Like I said, I closed the book and said, "No more." I understand being stunned because one's child has a serious developmental disability. I truly do. I understand thinking, "Life will never be for that child like it is for everyone else." I do. But I don't believe that mourning the loss of birthday parties and "perfect" relationships is what God wants for us. God wants perfect acceptance of His will.

He destined us in love to be his sons through Jesus Christ, according to the purpose of his will, to the praise of his glorious grace which he freely bestowed on us in the Beloved. In him we have redemption through his blood, the forgiveness of our trespasses, according to the riches of his grace which he lavished upon us. For he has made known to us in all wisdom and insight the mystery of his will, according to his purpose which he set forth in Christ  as a plan for the fulness of time, to unite all things in him, things in heaven and things on earth. In him, according to the purpose of him who accomplishes all things according to the counsel of his will,we who first hoped in Christ have been destined and appointed to live for the praise of his glory. Ephesians 1:5-12
God is with us at all times. When we are struggling, when life is difficult, when we are faced with challenging imperfections, we are given the grace to handle those situations. We are not given the grace a moment before it is needed. 

My grace is sufficient for you, for my power is made perfect in weakness. 2 Corinithians 12:9
And if we choose not accept the grace, we walk alone.

to be continued...


  1. oooh.. "if we choose not to accept the grace, we walk alone." Striking. It's a thought I hope to carry with me (always). I am looking forward to your promised continuation!

  2. Well, I'd never heard of the blogger, but HAD heard of the book, oddly, and now I've heard of both (because she wasn't too hard to find by your description and because I am insatiably nosy.)

    So I went and read the baby's birth story, and it was... odd. Maybe I was just envious because I did not look so well dressed, made up, and not-exhausted after giving birth to any of our seven children. Or maybe it was the enormous crowd there to witness the blessed event? I don't know. Just... odd.

    I never have before and won't ever again read her blog (don't like it) and have learned by now to never read a blogger's book, but you might like to know that there were at least two reviews on amazon, very eloquently written, that completely agree with you.

    I read a while back that you almost never see down syndrome children anymore. That's because approximately 90% are aborted when parents receive the diagnosis. It's terrible, and it's because nobody wants to give that much to a child.

    In other, sort of related, news, my children were watching the Macy's parade on television yesterday, and an ad came on for an Elmo toy that hugs the child and suggests games to play. We were all horrified! What sort of environment must a child live in to require affection from a toy?! The child was obviously alone in the ad: no parents smiling in the background, no siblings, no sign even of other playthings. Just one lonely boy playing horse with Hug Me Elmo. "He needs a sibling!" one child exclaimed. Which is another, related issue, if you ask me. We don't want children who might be too much trouble, and we don't want too many of them, because that would be too much trouble, too, and it's all just so sad.

  3. OK, what's funny is that I know who you are talking about, but I didn't know she had a book out (but don't all the BIG bloggers have book deals nowadays?) I knew about her because I followed a link trail through some of my favorite places to the post she wrote about when her daughter was born. So many people were calling it profound and deeply moving and all that. My thoughts were similar to Jennie's above. Overall, I was glad that she finally "came around" to accepting her child, but I wondered in the back of my mind what she would have done had she gotten the prenatal diagnosis of Ds? Maybe that's cruel, but I couldn't help it. I read the birth story and then I never read another thing by her.

    I read quite a few blogs written by mothers of kids with Ds, including those who did not have a prenatal diagnosis and were surprised, and their stories and accounts are completely different than this woman's. I also know women who were given prenatal diagnoses that were fatal to the baby, and they still carried the baby to term.

    I wonder about their strength and their attitudes toward a situation that seems so patently unfair to the rest of the world. I can only say that the difference is that these women have prayed specifically to be strong enough to do God's will.

    And again, I come back to the fear. Fear is not from God because God's perfect love casts out all fear. And fear of imperfection, of suffering, of loss - that's what runs the world.

  4. And this:

    "I finally decided I would be the friend who said, "Ok sister, your five minutes of crying is up. Now pick up your baby, love her, and thank God for the beautiful gift that she is, or I'll take her home and make her mine." In other words, I would not be her friend, I think. "

    I would be the same way. :)

  5. Being a mother of a child with a birth defect, I can honestly say, I did have those dreams...maybe I'm too simple. I do not have any of those dreams for any of my children...weddings and all that stuff...I just take it as it comes.

    Their lives will be a gift all the way through and we are not supposed to know what that gift are before we open them, right? My thoughts are more on the -I want them to be holy and close to God kind...

    I have read her birth story on her blog, (Years ago) and was disappointed. I also kind of realized this is the way "most" people think. Maybe her perfect way of showing things in her life on her blog will help another to keep their Down Syndrome child...or maybe that will disappoint them even more when their lives won't be as perfect as she shows. I used to just lurk at all the pretty things she'd show...but then got sick of the un-realness of it all.

    The sadness I felt when Simeon was diagnosed in utero was almost all because I would not be able to nurse him...fear of the unknown...but these things bring us back to total trust in God. All things like this are opportunities to turn to God. Who, in turn, shows you how perfect each child truly is. That He knew them from the beginning of time. He knew them. Gosh, I love that.

    This brings me back to the day the kids got to see him through the windows at the hospital (he was a preemie and the kids could not go in by him) Their first reaction was how beautiful he was.

    I would have done the same thing, your 5 minutes is over, now roll up your sleeves...

    (this probably did not make any sense)

    Prayers for your back, hoping you are feeling better soon...

  6. I have read her story. I never thought of it that way, I guess. I think she is a very emotional person and gets carried away with literally EVERYTHING..from every holiday to on birthday party. Everything is one big emotional event.

    She really doesnt have a strong religious foundation to lean on and I attribute that (maybe) to her reaction to her baby.

    She has done some really amazing charities and other things for DS kids.

  7. I too, am aware of that blog (haven't read her book) and she is an emotional person. She's also very detail oriented. She has a huge heart, has gone on to have another baby and has raised thousands of dollars through her blog for DS. She also is active with older DS people in her community. I know young couples in my area who have had DS babies...one couple has two...and when you don't expect that diagnosis at birth, it is very shocking. I would think it would take a tad longer than five minutes to get over it as there is so much the mind processes initially. One initially imagines that child's lifetime of struggles and it's upsetting. From her blog, she obviously loves her family to bits! Barbara, I hope your back heals quickly! Hugs!

  8. Oops...I meant to say "I did NOT have those dreams..."

    I forgot the NOT.

  9. I must be the only one who reads your blog who has no clue about whom you're talking, but no big deal.

    While you were writing this, I was at the hospital with my 11-year-old who had a new diagnosis of diabetes. Until 8 days ago, I'd have described him as an "extremely healthy" child. Now I have to think of him as someone with a chronic illness, one that could kill him if it's not properly treated and managed.

    There has been no time for pity parties, for grieving, for crying to friend after friend after friend. I have a kid who needs his life to be as normal as we can make it, and he needs me to help make that happen.

    I thought he was perfectly healthy, but he is not--and never will be again. And I pray that God gives me the grace to be the mother he, and my older children, need me to be. I need every single bit of it.

  10. A friend like you is exactly what any woman in her situation needs - someone to encourage her to buck up and stop the pity party, but also to come along side her and show her how to love her baby. I hope she had people in her life who were not so put out with her they stopped being her friend.

    I have a child who looks normal but acts strangely at times. This has caused a great deal of emotional pain for us both, at home, out & about, and especially as we have made a change of parish. I find people's reactions, kids and adults alike, quite alienating. Grace and understanding on both sides goes a long way.


I appreciate your comments -- sometimes I feel like I'm talking to myself!