A Mother's Prayer

I sat in church yesterday, not my own home church, but one about 15 minutes away from our town. I was there to pray with and for a fellow family with a Down syndrome baby. We had never met before yesterday, except online through our local Ds chapter, but I had felt the pull to join this sweet family this day and lock-step in prayer over their baby.

Little Stella is only 7 months younger than Anna and is scheduled for heart surgery this coming Friday. We have been blessed in that Anna only had minor heart issues, which God healed over time, and she hasn't had to go through any major surgeries or procedures. And yet, my momma-heart very much feels for those with little ones that do have to endure these medical procedures. I can imagine only too well the fear, anxiety, and worry that permeates for many of their days. For this reason I wanted to reach out in a very small way and join them before our Great Father.

At the end of the worship time, the leader led a beautiful rendition of Great Is Thy Faithfulness which commenced in the congregation singing Jesus Loves Me in acapella. It was the most powerful time I've ever experienced with this song. I think the difference was the position of me, the singer. For the hundreds of times (perhaps thousands?) that I've sung this song... from my own childhood to now over my children... I've always remained singing it as a child (of God) would. Yesterday for some reason, I sang it as a mother. It was gut-wrenchingly raw and honest for me; as a mother of a special needs baby, joining another mother with a baby getting ready to have major surgery... well, this song transformed into a prayer. A mother's prayer of acknowledgment and hope, fear and faith.

Man these sweet words hit me so hard. I was a sobbing mess by the end and I literally couldn't finish singing. (I'm sure those around me thought something was seriously wrong with the stranger holding the baby blubbering to Jesus Loves me in their midst.) "Little ones to HIM belong, (though) they are weak, BUT HE IS STRONG!" Wow. What a simple but powerful message for parents. We only get the honor of shepherding them for a time. Our children are not our own, they are His. They were His long before we ever got custody, and they will be His long after we are gone. We need to not only accept this fact, but rest and find peace in it! And let us take it a step further- we can REJOICE in it!

When our children are weak- weak eyes, weak limbs, weak ears, weak tummies, weak hearts... then He is strong for them. What a comforting thought. Many of our most extra precious children's bodies are 'weak' in multiple ways. Their bodies do not work as strongly as they should... but in that God's work is being done and He is being glorified in those weak areas even now. Praise the Lord.

I will probably never sing Jesus Loves Me the same way again. It's meaning and impact is forever changed in my mind- and my mother's heart cherishes that. When I fear, when I worry over my kids, when the anxiety about catastrophe hits too close to home... I will sing this child's song... I will pray this mother's prayer-

Jesus loves me this I know. For the Bible tells me so.

My little ones to Him belong, when they and I are weak, He is always strong!

Why I'm Not Afraid to Say "Retarded"

This particular article has been one in the making in my head for about 6 months now. It's been close to my heart to write but I didn't know when the appropriate time to post it would be. It would seem that I can't keep my thoughts silent any longer. I want to add a different perspective to the "R-word" debate- one I haven't seen or read yet. I'm quite sure there will be many people who immediately disagree with me, but I would ask you to just read on and see where I'm coming from. Yesterday was the national #spreadthewordtoendtheword campaign; and while I don't necessarily disagree with this sentiment, I do have some thoughts on how very sad it is that this absolutely innocuous word-"retardation"- has been vilified in a completely unfair way.

The words "retardation, retard, retardant" do not bother me one little bit. I'm not offended by them, I'm not hurt by them, and hearing them in conversation doesn't cause me to run to the other side of the room.

Meet my retarded daughter, Anna. She was born with Trisomy 21, Down syndrome. And yes, she is retarded in many, many ways.

Let me give you some background. I became familiar with the special needs community and started working with them back in 1998 while employed at a summer camp for disabled kids. I worked at this camp for 3 full summers. I met my husband, who was also working as a counselor there. Largely due to my interaction with this community, I got a BS in Psychology and eventually degrees in nursing as well. The earliest years of our marriage Gabe and I worked as program directors for a group home- we physically lived on-site with our clients. We were with them 24-7 for 3 years. Later, by God's awesome plan, we had our very own special needs baby, Anna, who came into our family just 14 months ago. Around the same time, I became the medical director for the same camp that started it all. Crazy full-circle stuff right? Our entire family spends 3 months of each year living, playing with, serving, and loving on all sorts of people with special needs.

I know this community. I love and adore this community.

And, still, the word "retarded" doesn't bother me.

Why you ask? Because there is power in words, but there is MORE power in understanding what those words MEAN. "Retarded" doesn't bother me because "retarded" is simply and only a measure of time. It is an objective measurement to describe the growth of something. Merriam-Webster defines the word "retarded" (adjective) as slow or limited in intellectual or emotional development :  characterized by mental retardation. Moreover, the word "retard" which is really what all this flashpoint offense is over, simply means to slow up especially by preventing or hindering advance or accomplishment, synonyms include brake, decelerate, slow, slackenhalt, stophandicap, hinder, hobble, hold back, hold up, impede, inhibit, obstruct, set back, tie uparrest, check, constrain, curb, rein, restrain.

I am a nurse by primary vocation. I have a secondary degree in Biomedical Sciences. Over the course of many science classes during these degrees, the word "retard" or "retardation" comes up often. In fact, the word in used not rarely in many other avenues and situations as well- all of which involve the slowing or slowness of something. What the word is NOT is a diatribe on intelligence, personality, worth, or importance. "Retard" is a transitive verb that has been used for over 500 years as a descriptor of growth or advancement (or lack thereof). It's meaning has nothing to do with good or bad, so at what point did slowness (i.e. retardation) become such a bad thing? Why does our society immediately equate being slow as having a negative connotation? I don't get it. This poor word has been hijacked and it's meaning completely changed!

Fire retardant slows or stops a fire- a good thing.

Chemotherapy retards and hinders cancerous cells from growing- a good thing.

Antibiotics retard and impede bacteria's ability from spreading in the body- a good thing.

Retardation can be (and IS) and very. good. thing.

So what is the deal with avoiding this word like the plague? Yes, I absolutely acknowledge that it has been and is being used a a flaming arrow of insult at people. I'm not arguing that the word is not slang for really mean insinuations. I understand that the heart of the usage can be very hurtful. But only if we let it be hurtful! I have had several people use this word towards Anna (one of which was very much trying to hurl an offense in our direction).

But it didn't stick.

Happy 1st birthday! #caketasting

Because my daughter IS retarded in so many ways. She is slow in her physical development. She is slow to meet milestones verbally and cognitively. She is slow! And I adore that about her!

As a mom, I cherish the extra time it is taking her to learn to sit and crawl and pull up (which she still has no interest in) and walk (something that's not even on her radar yet!) I revel in knowing that I am blessed with just that extra bit of time in each season with her, knowing that her retardation gives me just that many more moments with her. Her retardation has retarded my life as well. What a blessing!

As a frantic, first-world American I desire my life in general to be more retarded. I wish the pace would slacken, my eating would be hindered, my activities held up, my parenting patience elongated, my career path slowed. I imagine many of us have these same thoughts. We want retardation! Do you see what I'm getting at here? How many times do you see people celebrating (or longing for?!) the ability to take life more slowly? To "stop and smell the roses"? To watch the clouds sweep by or the rain patter on the grass? We long for the dizzying effects of our crazy life to slow down, to retard don't we?

As a Christian I wish I were more retarded in my patience, in my speaking, in my anger. We are instructed to be this way dear ones! James 1:19 (NLT) "Understand this, my dear brothers and sisters: You must all be quick to listen, slow to speak, and slow to get angry." Have you ever prayed for retardation in these areas?

That this poor word has been associated negatively with these precious populations blows my mind. It is an objective measurement of time and ability and yet somehow has come to mean something entirely different. When did this innocent word become such a way to degrade intelligence? I mean seriously? Talk about inventing a new definition! Since when does "retard" (which is a verb not a noun...) mean 'not smart'?  Why can something slow not also be gentle and kind, witty and valuable? How did "retarded" become synonymous with 'less worthy' or 'not good enough'?

Retardation is measurable, it is objective, it carries no emotion, it carries no weight of worth.

Anna's growth is slow, Anna's cognitive milestones take more time than normal to reach. (Which by the way, what is normal anyway? That's a discussion for another day...) There is no sentiment or emotion placed on her condition, it is what it is as I love to say. BUT her retardation has zero to do with her intelligence, her kindness, her gentleness, her happiness, her ability to touch people's lives, her worth as a human being. So why on earth would I ever be offended or hurt when she's called retarded? She IS retarded! She's ALSO joyful, happy, silly, smart, gentle, patient, a blessing, valuable, and worthy! None of this is mutually exclusive.

When people are unwise enough to think they're informing me of my child's (or any of my friend's) condition- I go out of my way to tell them they have no idea how correct they are. This special needs population are slowed, praise the Lord and to His glory they are so retarded! And they are better than me in almost everything that's important in life because of it.

Oh, to be more retarded like they are! These amazing human beings that see the world in a way we unretarded people never will because we're too busy being busy. They, who experience life and God in ways we never will or could because we are so very handicapped by our own actual disabilities (pride, selfishness, envy, power, greed, self-doubt, etc.) If there is anything at all that I've come to learn about the retarded population over the years is that they are by far better humans than I can ever hope to be. Their retardation, their slowness and arrested development, has freed them to see and pursue and learn and interact with life in much more meaningful ways. And I do long to be more like them in these ways!

So yes, you who use the R-word, yes. You've hit the nail on the head! My daughter, my friends, are indeed retarded. And that quality within them is perhaps one of the most cherished things about them in my humble opinion. "Retard" does not offend me, even if you mean it for ill, because

  • You're using it incorrectly (it takes the sting out when they're basically saying {with as much venom as they can muster} "So, you have a delayed kid." Not quite as powerful right?)
  • The word carries nothing but a scientific, innocuous definition for me... one that is actually completely correct. I don't get offended when people hurl "You're so blond!" at me... Saying "Anna is retarded." has the same impact.
  • Shoot! Even the slang definition (which is almost exclusively how it is used nowadays), stupid or foolish, is not true to of this population. Anna and my friends with special needs are neither stupid nor foolish! So again, insult hurled- it's not true, therefore it doesn't stick.
  • Plus, as a bonus, I celebrate retardation! I love it, I want more of it in my life and in the lives of those around me!

So, in conclusion (if you've made it this far) though I get the sentiment behind the whole #spreadthewordtoendtheword movement, I feel moreso like we simply need to take the word back- to reclaim it's original meaning. Back in 2000 when I directed the group home, the 'proper' wording had moved from mental/physical "retardation" (which had been in use for years at that point) to mental/physical "handicapped"- nowadays even "handicapped" has started to denote a negative connotation and I see the movement towards mental/physical "disabled" or "special needs" being more 'appropriate'. How long will it be before those are blacklisted as well? 5 years? 10 years? Will those who adore these populations (that society just loves to stamp labels on) continue to give away ground in the name of incorrectly syntaxed words- just so not to be offensive? How about we go to war with "stupid" or "idiot" instead? At least those words are spoken maliciously hurtful in a subjective, unmeasurable, and purposeful way. Yet, I fear that even having such a movement as the one this last Wednesday has given more power and credence to an otherwise purely under-educated group of bullies who obviously failed English 101. Why not correct their incorrect meaning and use it as an educational moment to celebrate retardation instead? Knowledge is power and education will always be key in integrating these amazing people better into the folds of society- all us 'normal' people could certainly learn a thing or two from them being around more.

I do not say "retarded" around people much, simply because there is no reason to use it. I know Anna is retarded, I know many of my friends are. It's not something that needs discussion. And because society has overtaken the meaning, I don't use it often because I don't want to inadvertently hurt anyone's feelings. This article, in fact, is not meant to necessarily change anyone's mind about using the word (or not using it), this is simply a different take on the debate. But those of you who read this, know that when I do use ''retarded" it is in celebration, in respect, in honor, and in awe of such a gift they possess that I do not.

 

I don't hope to reverse the trend into eventual dictionarial (is that even a word?) oblivion that this word will probably eventually find itself; I think the movement is too far gone for that. It's just too bad that we are losing an innocent, objective, and useful word to describe many, many things all around us. I fear this whole concept is dying a slow and unneeded societal death.

 Anna is slow, she is delayed, her development is held back... she is very much retarded. God made her exactly right, exactly according to His plan. She. is. perfect!

I will never, ever be afraid or offended of Anna being retarded.

How Arriving Late Still Counts

Last week I wrote about Anna's creative new crawling style (check out How Doing It Badly Still Counts!), well my friends she's officially "doing it well"! January 19, 2017 at approximately 6:30pm she pulled her little heiny up and got those 4 limbs working together and that babygirl got to moving! Apparently she hadn't had the proper motivation up until now... which ended up being her brother's red car. Who knew? #growingupwithbrothers (If you want to see the moment it happened...)

But I digress (I promise not every blog will be about my kids!) Today I wanted to talk a little about an idea that up until just recently I had some trouble getting my head around. I'm talking specifically about the parable of the vineyard workers from Matthew 20. This is the story of a vineyard owner who hires laborers throughout the day, some late into the afternoon, and then pays them all the same wage in the evening. For obvious reasons, those who had worked all day long- morning to evening- were a bit miffed that they received the same pay as those who had come late in the day and only worked a little while.

In this story, a single denarius was the promised pay; it equated to an entire day's wages for the workers. Every worker got one- the whole day's pay, the pay for a total day's work. I can imagine the ire this must have caused for some of them! It was not without just cause...

Jesus told this story to show that heaven is open to all who accept the invitation- at whatever time and in whatever circumstances. Not unlike the thief on the cross who Christ promised to be with in paradise that very day, so also does God welcome even the late-comers. Man oh man that does seem a bit unfair- like I said... I get it. My justice meter seems to run a tad high when this kind of story comes around. I can sympathize. Though I mentally understand the grace factor in the story, my heart cries just a bit at the seeming injustice of it.

And while God is just... He is also a Father... and in this case, I think He was playing by parenting rules (which as we all know are much more heart-driven, full of mercy/grace/forgiveness and all around inexplicable patience <thank God for that, can I get an AMEN?!>)

I finally understood this properly on the 19th of January, 2017 at approx 6:30pm...

Anna is crawling late in the game. Most (if not all) of her peers have been crawling for awhile, many of them are already walking. Both her brothers had been walking for months by this age. She's behind... really behind.

But I tell you what, from a mothering point of view... I don't care that she's tardy, I don't care that she's delayed, I don't care that she's late. The ONLY thing I see is that she is finally doing it! And it THRILLS my heart!

She's arrived!

She's come!

She's DOING IT!

I imagine God is the exact same way with us. Every single one of His precious children He wishes- no, desperately desires- to show up, to accept Him, to join the party. He doesn't care how late we are, He doesn't care what baggage we bring or what we look like, He doesn't care that we might have taken longer than we should have in arriving. In the same way Gabe and I have been hopefully and expectantly waiting and watching for Anna to take her first timid and awkward shuffles- so also is Abba Father waiting and watching with great expectation for your arrival.

Today, dear one, are you late? Don't let your pride, your present condition, your fear or guilt keep you from accepting His invitation of salvation. He doesn't care the circumstances of your arrival, He just wants you with Him. He wants you arrived.

Be awkward, crawl timidly, step slowly- but GET THERE.

Thankfully, there's no such thing as tardy for the Kingdom of Heaven.

But... there is TOO LATE....

Don't be too late!

Today if you need to accept God's invitation to join His workers, I promise (better yet- He promises) full wages at the end of the day. An eternity in heaven beside Him, a forever, unbreakable union with Him. For more information, please ask a Christian friend, seek out a local church, or I would love to talk with you as well! Don't hesitate dear one- you're only guaranteed this moment... don't be too late!

How Doing It Badly Still Counts

Our daughter Anna, who has Down syndrome, just turned one. Children with these designer genes tend to be delayed on their development- sometimes up to two or three years in motor skills. Because of this, Anna has received physical therapy since she was about 3 weeks old. This entails setting goals for her and then working with her on small steps that help her work towards attaining those goals. For the last 6 months we've been working with her on crawling. She's not technically there yet, but just last week she started doing this bizarre one-shoulder army crawl. It's not pretty but it works for her. I am one proud momma! 'Official' crawling, with the motor movements working together in the traditional way, may come for her... or that particular coordination may not. But she's trying, she's working hard, and by God! that little girl is getting around just fine.

Go Little Miss, GO!

It's been truly a wonderful journey to help teach her little muscles the way to move. It's taken time, energy, and lots of practice; and despite the fact that she's still not 'technically' doing what we want for her... the end goal is the same- she's getting around on her own. It may not look the way it's supposed to (in fact she kind of looks like a wounded little bird hobbling about) but it's progress.

And it warms my heart to no end to see her progress- no matter how bizarre it looks at times.

 

 

Because I don't see the motions so much as I see her MOVING.

The first time I noticed her getting around, I didn't see the way she was doing it incorrectly, I only saw that she was doing it.

Isn't that the real goal after all?

So what's the lesson here? It's been interesting how her crawling progress has paralleled my own spiritual journey of late. There's a goal, instructions, that God's given me to accomplish (as I imagine He has given to you as well.) I have an idea of what it needs to look like and yet, despite practice and patience, my progress is anything but pretty or coordinated. In fact, my spiritual growth is downright ugly at times! It's not regular, it's not consistent, it's not graceful, lovely, or efficient- it's just plain bad. But it is progress! I get frustrated with myself at times, and Satan definitely tries to whisper that my advancements are stupid, worthless, and horribly done.

But, like my own personal pride in my daughter's unlovely progress, so also must my heavenly Father be equally pleased with my ugly path.

I pray He sees that I am moving, I am being obedient... no matter how awkward my motions are in getting there.

Today I encourage you to MOVE. It doesn't matter how unsightly or bizarre-looking the actions are! God wants you moving in whatever direction He's set for you. He doesn't care what it looks like, He only cares that you are, indeed, on the journey to get there.

So dear one.... move badly!

Words Not Required

Did you know that in first-world countries, studies have shown that the abortion rates for pre-natally-diagnosed Down syndrome babies runs anywhere from 50-90%? These babies are killed just because of the diagnosis! (More on that here.) It’s an astonishing number.

It’s a devastating number.

The most recent data collected in 2015 estimated that at best, the population of Ds have been decreased by 30% due to abortion- the number would be higher if the actual numbers for abortion due to a Ds diagnosis were absolutely known.

Wow.

But this blog isn’t going to be about death. I want it to be about life.

October is Down syndrome awareness month and I’ve dedicated my Monday blog posts to all things Ds or Trisomy 21 as it's officially called. This particular population of people have always held a special place in my heart having worked with them extensively through Camp Barnabas and as a special program director through Arc of the Ozarks back in my early 20s. But it took on a new meaning for me when we welcomed our daughter, Anna, into our family this last January. She was a surprise baby with Downs and our life couldn’t be fuller with her around. She is a special angel I believe God sent directly to our little family.

But not all of these angels are so lucky. Many do not make it to delivery; and for as alarming as the numbers above are… the numbers for aborted babies with Ds in other countries is even more so.

But this post is about life- so let me tell you a story about life.

My in-laws are currently in South Korea teaching ESL and Heidi called us the other day to relate a heart-wrenching occurrence that happened to her. In Korea, though not officially a one-child society, they take great pains to produce what is considered the perfect child. According to Heidi, everyone gets extensive pre-natal testing performed and the abortion rate for ANY kind of abnormality is near 100%. It’s not a religious or moral thing there, it’s not considered murder, it’s simply cultural way of life for them. From what I understand, the government doesn’t officially sanction abortion, it just simply turns a blind eye to the hundreds of thousands of abortions the hospitals and doctors perform each year. No questions asked. Heidi explained there is a huge education gap and experience gap within this culture with all kinds of disabilities, Down syndrome none the least. You simply don’t see anyone with it. They are kept hidden, locked up, and the general public is somewhat fearful of them. Those who do slip through the ‘cracks’ of the testing are shunned. There is an assumption that this population is in pain, they suffer, are unhappy, and unable to contribute to society.

But back to my story- Heidi had met up with one of her students one day who was confessing that she and her husband had bad news. They were pregnant and had just received the results that their baby would have Trisomy 21. They were devastated and had made preparations for the abortion in a few weeks. She spoke with high hopes for the next child, that maybe that one would be better. Heidi had a decision. What to do? Knowing that the education gag is immense, she did all she could think to do. Explaining that she has a niece with Down syndrome, she whipped out her phone, and opened Facebook (because, you know, who wouldn’t have the presence of mind to do that during such a heavy conversation?!?)

Heidi showed this lady pictures of Anna. Picture after picture after picture. Pictures of her smiling, laughing, being held, being loved, being celebrated. This woman saw, for the first time in her life, a child with Down syndrome being included, loved on, taken care of, and cherished. By everyone. Picture after picture with literally hundreds of people. (Anna has no shortage of fans and pictures all over the internet...) No one seemed scared of her, no one looked uncomfortable, no one shunned her. Young and old people, men and women, other disabled friends, people in all walks of life were pictured celebrating her existence. She saw pictures of Anna happy, content, interactive, healthy, and most certainly (even at her young age) giving just as much love back as she receives.

What Heidi perhaps could not bridge in educational facts and figures, Anna did by just being Anna. No words required.

The lady broke into tears midway through and kept repeating, “She just looks so happy. She is healthy! Everyone loves her.” And slowly her realization of the precious life inside began to take shape.

Heidi left the conversation, not having tried to talk her out of ending the baby’s life, or re-educating a dulled cultural vision. She simply told her she’d be praying for wisdom for them. She simply did what she could to show what a life with Ds can be- that these precious souls are worthy of life and are worthy of living. No words required.

It is no surprise that my heart aches for those babies whose lives are taken from them for a diagnosis that is not well-understood or accepted. In America, in Korea… anywhere. God’s heart aches as well. It must bleed endlessly for the little lives He’s takes back to be with Him in heaven too soon. But He is at work as well.

God doesn’t need words, He doesn’t need us to have all the answers. He just needs us to be open to let Him do His work through us.

Maybe through Facebook. Maybe through blogs. Maybe through pictures.

Words not required. Anna sure doesn’t use them yet! He’ll get it done still.

And by the way, the couple came back a few weeks later and told Heidi that they changed their mind. They’re keeping the baby.

 

 

Thank you for taking the time to read my heart today. Please comment below with thoughts and ruminations of how this story of life affected you today- and stay tuned for part 4 (the last in the series <sad face>) coming to a blog near you!

Letter to Anna Leigh: My New Niece — heidijoan

 

Anna Leigh. Sweet Anna Leigh. You have no idea how much your blessing of an existence in our family is. It makes total sense you were placed where you were. And we have a very special spot that is fit just for you. You came from a family that has devoted a part of their […]

via Letter to Anna Leigh: My New Niece — heidijoan