Wednesday, April 11, 2012

the perfect baby

Lately I have had a lot of interactions that have troubled me. Perhaps it's just people thinking through the definition of words differently than I do- or perhaps people not realizing how their wording is coming across.

Seeing someone else say online recently:
"The mother was told that her child would have Down syndrome, but then, praise God- he was born perfect instead"

people suggesting that the reason that "extras" I deal with Addison bother me because she is then "no longer perfect"

friends returning from an ultrasound saying "THANK GOODNESS the baby looks perfect- no abnormalities!"

I could go on, but I'll stop there.

Let me just stand tall in my little bloggy world and proclaim to all of you that I have a two year old little girl. Her body is covered in scars from surgeries (four, to be exact), she wears braces on her feet and glasses on her eyes. She has 47 chromosomes instead of 46

and she is perfect.

How can I say that so confidently?

Because she was designed by a perfect and loving God who makes NO MISTAKES.

It's not as if he looked at her after she was born and said "oops. I really messed up that one. She's going to have to stay in the NICU for a long time and have some surgeries to fix her heart. Man, I really made a huge mistake here. WHY can't I get those chromosomal issues right? She will have such a HARD life."

No, he formed her exactly to need those things- he created every last chromosome in her body, divinely adding in the extra. He knew that she would have a hard life- and then provided all of the tools and grace necessary for her to rock the difficulty and make it almost appear easy. He then placed her in MY family because he knew that we needed her. He not only allowed her to have health problems and Down syndrome- he DESIGNED her PERFECTLY that way.

I know we all have in our mind what we think our children should be like, but just because something different comes along it doesn't mean that a mistake was made. It just means that we need to adjust our previous expectations thinking that we "deserve" a certain kind of baby.

Struggling with a child who is delayed and you don't know why?
God makes no mistakes-your child is perfectly designed.

Worrying about a prenatal diagnosis?
God makes no mistake-your child is perfectly designed.

Figuring out how you're going to raise a child with a hearing impairment?
God makes no mistakes-your child is perfectly designed.

Crying tears of anguish over a scary new medical procedure looming for your child?
God makes no mistakes-your child is perfectly designed.

All we really want in life is for people to accept us for who we are rather than constantly trying to make us into who they think we should be.

Why can't we do the same for our children?

Can you imagine? "Deanna, if I had known that YOU would be YOU, I would have ended your life before you were born because man....we really wanted a child with a different personality. Yours is rather hard to handle. If ONLY we had that perfect baby that we dreamed about before we met you."

Why can't we hold our new bundles in our arms (or peer at them in their NICU beds) and say with thankfulness "I have been given a perfect baby" no matter WHAT dim prognosis we were just told by the depressing doctor.

You may look at my life and think that you could never do what I do. You could never be Addison's mother.

Well, news flash: I look at your life and think I could never do what YOU do. Because that's just the way it works.

God designs our children perfectly and then puts them in the family that is perfectly suited to grow and stretch along with the growth of the said child.

The tendency of motherhood is often to look at our children as next year's Toddlers and Tiaras contestants. Finding faults- picking out "defects"- trying to form our children into what we feel they should be in order to win a coveted prize of awesomeness or to be the next great whatever.

Why can't we just accept them for who they are? Who they were designed to be? Who God looked at after creating and said

"This is good"

If you're so afraid of having a child who is different, who are you to judge? Who are you to look at a baby and said that he/she is imperfect just because that baby is not what was expected?

Trials in parenting are not about being fair- or about us getting more than our share. It's about our response. It's about letting ourselves adjust to the change and then loving our perfect bundles around the g-tube and cherishing them while preparing for yet another heart surgery.

What is parenting all about anyway? Is it about having "show children" who grow up smart and beautiful, who become genius', changing the world through inventions, cures and laws?

My humble opinion is that parenting is about acceptance. Loving the child you were given- pushing that child to top their best (not the world's definition of "best"- THEIR best)- enjoying that child for EXACTLY who he/she is.

Yes, I share with you my growing pains- this is my place to talk it out- it's my way of coping. But never for a minute would I blame these pains on imperfection- they are simply me expressing how my expectations have to change in order to accept the perfect in my life.

Having a child with special needs is not always easy- and it doesn't need to be painted over with a glossy front in order to appear perfect and beautiful to this world.

Sometimes true beauty is found in the rawness- the brokenness- the truth. When you delve to the bottom of hardship- you can find yourself in a way that you never could if you sailed along life with happiness coming easily to you.

Who's to say how many chromosomes perfection requires? Who decides what is beautiful? Who has dibs on "smart" and "cool" being the most important thing you want for your child? Who says that "different" children are really the "different" ones- perhaps they're the only ones that are normal.

It's all about perspective.

Really, all any child wants is love- and to be equipped for the life in front of them. Each child will require different equipment for a successful life. EACH child- diagnosis or not. Why do we allow a diagnosis to be so paralyzing?

Yes, if there is a diagnosis, find out what it is so that you can tap into the resources available to you to help your child become the best version of himself/herself. You are not alone in what you're going through. But in no way allow that diagnosis to take away your joy as a parent because at the end of the day?

There is a divine reason why. And even if we don't know what it is now- it's only up to us to take it one day at a time, reveling in the happiness that is right in front of us- one perfect smile at a time.

Note: I am NOT announcing the onesie giveaway winner today. Because of some slight miscommunication, the winner will be announced next week instead. What does this mean to you? More time to enter. (-: Thanks for putting up with my first experience as giveaway host!


  1. Couldn't agree more with this post. You are right, maybe our daughters need "extras" to do better like SMO's and glasses, but that doesn't make them any less perfect :-) especially since they were created this way by God and nothing He creates in anything less than perfect!

  2. Really needed to hear this today. Had a "rough child" day and was feeling pretty down, and this just pepped me right up. THANK YOU!!!

  3. Thanks for being so open & honest about your faith in God - I so appreciate it as we look at our DS daughter through the same Christ-centered lenses: God makes no mistakes and our daughter is just exactly as He wanted her to be! God is certainly changing us as a result of having her and that's GOOD! Thanks for sharing your experiences; there are so many of us that can relate and are encouraged.

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  5. PERFECTly written!!!

  6. I've had people tell me things like "oh, your DS child will never tell a lie" ... or they aren't mean ... or they are so happy. Over the last year, I've somewhat resented those oddball comments as I associated them with a disadvantaged "simpleness" about my 1 year old with DS ... HOWEVER, in a light bulb moment I realized it is PURITY not simplicity. Causing me to reposition how even I look at this ... really, who knows if in the Garden, Adam & Eve had the extra chromo ... and as evil polluted the world, people lost the uniqueness, purity, and genuine true to self nature that people with DS have ... flip our way of thinking and what if the people with ONE less chromo are those that are lacking...

  7. I love reading your blog. Especially this entry it was beautifully written!

  8. Big, huge, fat, AMEN! Amen, amen, amen!! Our God does NOT make mistakes!!

  9. This has to be one of my favorite blog posts I have ever read. And you are so right. All of our children are perfect and made specifically for us. And no need to sugar coat everything to make it look perfect, each child is different and comes with hardships regardless of a diagnosis. We just have to be mommas, and love them.

  10. My third child was born with trisomy 18 although all of our docs assumed from her markers that she would have trisomy 21 instead. We "waited it out" and were devastated by her t18 diagnosis when we had prepared for t21. How I wish she had t21 instead. While my daughter was perfect to me, her trisomy and related conditions limited her life to just one year. I would never say she was anyone's mistake. Her life was and is precious.

  11. "Sometimes true beauty is found in the rawness- the brokenness- the truth." Preach it sister.

    I am taking a class right now and I have to write a paper on the nature of God... based on His covenants with us. I struggle with the idea that he made my Kimani the way she is (if this is true of the Ds, then it is true of the brain damage) because of how badly it hurts. I guess I feel more like nature happens and God knows about it, allows it, and makes good from it. When God alters nature or natural consequences we see that as a miracle (one I very badly wanted and did not get).

    Anyway, I hear you with the comments. It hurts to hear people so easily say things that unintentionally belittle our beloved children.

  12. People usually understand perfection in their children as the achievement of certain goals: she will be a beauty queen or he will attend Ivy League, for example. When they /we understand that the main purpose of having a child is loving him/her, doesn't matter if his/her life just lasts a few hours or many years, and teaching him/her how to love God and other people, as this is the reason why we were created, they will see their children as perfect , no matter their physical appearance , intelligence or personality.

  13. When we were coming to terms with Nicholas' DS diagnosis, I wish I'd known just how perfect he would be. I know the months of fear and sadness were all an important part of the process and have helped us welcome him with joy, but my first thought on seeing him was 'how can anyone NOT love and want you?' He is perfect and we are so lucky. Thanks for a beautiful post x

  14. This is amazing, Deanna! Addison has been blessed with the perfect family for her, and she IS perfect!

  15. Once again, well put, Deanna! Great way to summarize and then expound on the truth. God gives each of us the children that will push us to grow the most and also gives us to them to help push them to grow the most as well.

    (Sometimes He even gives us friends that do the same, too!)

  16. Thank you! I've been struggling with "perfect" for a few weeks. I have 2 sister in laws pregnant now and my sister just had a "perfect" baby...their words not mine! Our Hailey is perfect....anyone who doesn't see that may e she reconsider being a part of her life.

  17. Lovely post, so well said. For me, I've always said that we get the child(ren) we are meant to have. I said that long before I had a child. It wasn't really a statement of my faith, it was just something I believed. Anyway, I say it for so long, and then I finally have a child of my own. The little boy I always dreamed of. I didn't dream that he would spend his first 3 months of life in the NICUs, or that he would have to have a g-tube, or that he would have a disease that came out of nowhere, took me about a week to learn to spell and pronounce, that even the doctors didn't know what to do with - but he is the child I was meant to have. There is no question. I am so lucky he's mine.

    Lately, I have been cringing hard when people make comments about how fortunate they are to have a perfect child. How glad they are the baby is normal. Etc. Especially my friends. I wish I could ignore these things, but it stings to read. If only they knew, I have a perfect child too. The imperfection in his chromosome do make our lives different, but I have no doubt, better. If their child was limited edition like mine, they would learn they were blessed too, sooner or later.

  18. I believe that people who make such comments are probably not very educated and obviously have little to no tact.

    Every single child born in this world has been created in the image of God. Some of us come into this world destined to become the next President of the United Sates, or the one individual who will find the cure for cancer. Others come into this world and their primary purpose is simply teach others that whether we are "Next President" or "Joe Plumber", we are ALL "fearfully and wonderfully made". We are all designed by a God who (as you so eloquently stated already), "Makes no mistakes". Further more, no one is perfect. Jesus was perfect, Father God is perfect. Perfection is something that humans can not achieve or even strive to be. It's impossible. We can exemplify and strive to be "Christ Like", but "perfection" only comes after this life time and when we step into Eternity to be with Him.

  19. Perfectly said.
    I realted it to one simple questions - What do you value more in life the things someone give you or the things you work so hard to get? My child with DS might not be easy (but of course her sister isn't either) but I value everything about her. It makes me more aware, it makes me a better mother. I wouldn't change her if I could - she is perfect for me.

  20. Beyond grateful I found your blog. Love your posts. My daughter was born with brain damage, due to her birth mom's drinking. I have no doubt she was sent here for us as she has already taught us far more than we could ever teach her. I posted a link to this post on FB. Thank so much for sharing!

  21. So well said. Your writing demonstrates such beautiful honesty - and such a practical recognition of how God's goodness and sovereignty interact with our daily lives. And, really, continual trust in the goodness and sovereignty of God is one of the greatest examples my mom set for me.

  22. Deanna, I read your blog (and others) frequently but very rarely comment. This post was fantastic! From the minute my daughter was born I've never questioned "why" I just knew she was meant to be part of our family and this is the way God meant our family of 5 to be completed. I too hate the comments that I hear about he/she was born "perfect" the tests came back "negative" etc...This post is a must read.

  23. I found your blog from Parents magazine and just happened to read it today. This post encompasses so much of how I feel about my daughter! I am so glad for this post! Thank you!


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