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“This is holy work,” I begrudgingly reminded myself a day after returning home from a much needed couple’s vacation; a week of relaxation, sun, and reconnecting, and here I was now, again, changing my 13 year old’s diaper, my handicapped boy Lucas who was currently on his third bout of diarrhea in a month; so many wipes, diapers, hand washes, and missed school days – #buttwiperforever.
Continue reading “Holy Work: Being Obedient to the Call”

It’s Lukie’s 12th birthday – be still my soul.  My miracle boy is a pre-teen – a pre-teen!  From being told he’d never see the light of day to almost a teenager.  Where have the years gone? There are so many emotions that flood my heart as I think on this day, this 12th year of his life, and the significance that it brings in terms of my own life and God’s faithfulness throughout many difficult times.  

 I think back to the prenatal appointment in 2004; the appointment where I was told my unborn child would never live.  I think about the moment he was aggressively lifted out of my body and  how I immediately heard his scream, and how I then wept tears of joy and tears of fear over the unknown that still awaited our lives.   I think about the anxious thoughts running through my mind 50 billion miles a minute on that day, August 12, 2004 –

 “Is he okay?!”, “Will he survive?!”  “He’s so beautiful, I want to hold him forever lest he take his last breath…”

 And choking back tears through a fake brave smile as he was immediately whisked away to neo – natal care, Jason and I nervously looking on, unable to do anything for our newborn son in those moments.  I think about the struggles we had while raising him, the fears, the sleepless nights, the angst of his lukisms, and the accomplishments that arrived much slower for him than for other children but monumental they were when they finally did make their arrival. I think about the future for Luke – the next 12 years – and some of those same fears begin to enter my heart.  Will he be ok?  Who will take care of him?  What does continued growth (and puberty!) look like for him?  God, can we handle this?  Can Ryan and I do this with him? Really God, do you still have him and me and my family in the palm of your hand or have you moved on to some other family who needs your care more than we do these days? 

And I’m reminded, as I have been numerous (NUMEROUS) times in days of old –

“Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?” Matthew 6:26

And so I lift my head.  I look to the birds and the bees and the beautiful butterflies fluttering around my yard – not a care in the world.  So much more faith than mine it seems.  I remember – days of past, hard times, times I thought I would crumble against the weight of the world, crumble against the strain of what I was called to walk through, but I didn’t.  He was faithful.  He will continue to be faithful in whatever comes my way this side of Heaven.  

Today, Luke’s day, I choose to focus on the miracle of him and the impact his life has had on mine and on thousands of others, the impact his story, our story, will have on those who need hope, those walking through dark nights, those who need something miraculous like sunlight burning at midnight.   I choose to focus on the honor that was bestowed upon my humble life which allowed me the privilege of walking through hardships in order to one day breathe hope, through my words, through my story,  into another’s dark night.  I choose to push my instinctual fears aside and focus on life, his life, the beauty of Lucas and all that he has been and ever will be.   

And so to honor Luke’s birthday, it seems only appropriate to release the trailer for my book, my baby, twelve years in the making –  Sunlight Burning at Midnight, and along with the trailer release, I am offering a pre-order special because, of course, IT’S LUKE’S BIRTHDAY!

The official launch date for the book will be in November, but for every pre-order I receive before this date, I am offering a personalized, autographed copy.  As you can see, (hopefully) there is a nice, little box beside this blog post with fail proof instructions.  Each book order ($13.99 +S/H) will be placed through pay pal and mailed as soon as hard copies are available (which will be before the official launch – the latest I’ve heard is the first week of October).  So, not only do you get a personalized, autographed copy (believe me, the personalization factor will be a rarity in the future with my life), but you will also be one of the first human beings with a book in hand. 

As always, thank you to all – my publisher, my friends, my family, my husband, my kids, THANK YOU, thank you, thank you, thank you from the bottom of my heart for bearing with me, for lifting my head, and my heart, and my weary body years ago, for believing in this story and the message it conveys, and for supporting me through it all.  To God be the Glory!

Just keep livin!!

I didn’t figure my first post back from having a baby would be about this topic. I assumed it would be something about the baby or how our family has changed or is coping, but a horrifying scandal quickly rattled social media over the past 24 hours. A video (disclaimer, it is brutal) caught my attention yesterday with the title, “Planned Parenthood Uses Partial Birth Abortions to Sell Baby Parts, and as I watched my blood boiled and my heart ached. 

 

I realized this is a post that must take precedence above any other because this is for all the Annabelle’s who will never see the light of day and for all the Luke’s who will be decimated by sundown.  These words are for all of the unwanted and forgotten souls who will never see the sun this side of Eternity.  This is for all babies – born or unborn.  

This scandal is personal because I was repeatedly admonished in 2004 to abort my second child Lucas because he wasn’t “perfect” in the estimation of the medical professionals. For more of his story see Miracle Boy, Lucas, or Worst Travel Companion Ever…. This is also an issue I don’t easily stay silent on especially since having Luke has enriched my life and opened my eyes in so many ways to the beauty of life, the reality of what healing means, and the unconditional love the Father bestows upon each and every one of us.  I have no idea how we have become a nation of people who not only kill our babies but then we also turn around and sell their limbs and appendages as products. I look at my sweet baby girl Annabelle, five weeks old, and cannot fathom how I could have legally killed her only a few weeks ago –how her limbs could have been ripped from her body and her heart or lungs gutted and sold to the highest bidder.   

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In the midst of the Planned Parenthood video going viral yesterday, I despairingly said to a friend “What do we do? What can we do?”  Not even as Christians but as human beings?  Americans? Living in the land of the free, the home of the brave?  The exception, of course, if you’re an unborn baby then you’re not so free. Or a mother facing an unplanned pregnancy or a father threatening to break up with a woman unless she aborts her baby – then, not so brave.  As a culture, if we have a shred of morality left in our souls, how do we right the wrong of millions of babies being killed?  How do we reverse such a sickening mindset which says it’s okay to rip our children apart and sell their body parts?  Where do we even begin?

We begin by finally opening our mouths and calling out the truth for what it really is – it is wrong.  We have a hard time calling anything wrong in our day and age, but it is wrong to rip babies apart and slaughter them in such a way as to preserve certain body parts to be able to sell as a product.  

IT IS WRONG.  

We begin with brave men and women telling their stories.  

Stories of regret, stories of shame, stories of rising above the shame, stories of hope and stories of pain.  

All these stories must be told and circulated so that the shame lessens, the healing begins, and the voices rise to a loud cacophony that screams hope to the masses, hope for a different way, and hope for life.  Mothers who have chosen to go against the advice of the medical professions and carry these “defective” children to term and then commit to raising these children also need to tell our stories.  We have a different story, but it is still a story of pain, of heartache; hope, redemption, and joy in the midst of a difficult situation.  Our stories can change the culture.  Not acts of violence or social media rants but our honest, individual experiences woven together will begin to make a difference in our society and in the world at large.  These stories must be told and retold for they will change lives. These brave words will, one by one, save lives.

All I have to offer these unborn babies is my story.  I started this post with a gruesome video, and I will end with a hopeful one. A video which tells a tale of how any abortion story could end differently – a video of beauty rising from the ashes.
Tell your story.  Or listen to someone who has a story to tell.    

Just keep livin!!

“Why didn’t you bring Luke?”

As a family with a special needs child, we often hear this question from well-meaning folks, and there’s not a simple answer just like Luke is not a simple child. Luke is my severely handicapped son, and I love him dearly. I have fought for him to have the best he can possibly have in his circumstances. I have gone above and beyond to make sure that he is comfortable and stable in life because the truth of Luke’s world is that he does not live with mild handicaps – he lives with major handicaps – handicaps most regularly functioning people will never understand: physical, mental, and emotional limitations along with lacking in gross motor skills.  Even I, his mother, don’t fully understand at times; however, I allow for the fact that I don’t understand as I seek to make his world one full of stability and love. At a routine twenty week appointment while pregnant with him I was told that his brain was so full of cerebral spinal fluid that I should consider abortion because it was highly unlikely he would make it to birth, and if miraculously he did, he would probably die in my arms. Luke and I have been fighting ever since.

Luke is now ten years old, a complete miracle who continues to shock and amaze even the most skeptical of experts. His brain continues to enlarge and develop. He continues to progress. His eye sight is better than anyone ever would have predicted it would be. He has begun to say a few words; however, even with his continued progress and accomplishments, Luke is still and will always be a much more difficult child to care for than my other children are. He is a twelve year old in diapers. Full time diapers. He can speak a handful of words to get his point across such as “more” “all done” and “juice” and eat. He walks, with assistance, but not for long distances. He becomes extremely agitated with anything new such as new people, new environments, new foods, or new videos to name a few which make exposure to anything new a tiring and exasperating experience for his immediate family. When I say he becomes agitated, I mean specifically he screams “ALL DONE!” until the new is replaced with something old and familiar which is why taking Luke anywhere is an overwhelming task for all involved.

We do attempt to integrate him into limited family activities not so much for him, but for our peace of mind as his parents and for all the others who ask the question, “Why didn’t you bring Luke?” We (his family and society) need to feel like we are including him when the reality is he would be much happier and more content in his familiar environment at home, walking outside, eating lunch in his reliable chair, and retreating to his den of safety, his room, to watch one of his beloved videos. Recently we included him in a two hour family Easter egg hunt at church. We packed his bag, diapers, wipes, sippy cups full of apple juice (the only beverage he will drink), a change of clothes, and his wheelchair, along with our six other children. We loaded him into the van which was confusing and disorienting for him because he associates the van with going to school, and then we proceeded to hear “ALL DONE!” screamed at the top of his lungs for the half hour drive to the church. When we arrived he was content as long as one of the parents (not his siblings) was walking him along the track that encircled the field where the hunt was occurring (so, no he wasn’t participating nor was that parent participating) or eating skittles which he happily discovered when one of his siblings offered to share a package with him. A package turned into about 20 packages within an hour as the “MORES!” grew louder and more persistent. We left with a green/blue/red (he spit out the orange ones) juiced monster, skittle juice in his hair, clothes, face – every visible body part, on our hands. Good thing we had wipes in the bag. 

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Luke, the Skittle Monster

In order to keep him pacified on the car ride home we frantically stopped at McDonalds to pick up food and then fed him, slowly, bite by bite lest we hear the dreaded “ALL DONE!” or worse yet, ear piercing screams for the thirty minute car ride. Once home, we hosed him down, again, with multiple wash cloths, scrubbed the entire bench seat in the van (which still has remnants of ketchup and mustard forever etched into the fabric) brought him to his room, closed his bed, and popped in a video which he was entirely too happy to see. Then all breathed a huge sigh of relief. That’s our reality with Luke for about 2 hours. Imagine an actual family vacation with him, in our travel trailer, or worse yet, a hotel room.

My late husband and I tried the hotel room once, and it was enough of a disaster for us to vow never to make that mistake again. We took two year old Luke and his older brother Caleb on an overnight trip to Frankenmuth, Michigan, the Christmas city, full of joy and happiness and for our family, full of incessant screaming from a little boy who was not at all in the holiday spirit. Luke was so distraught at the change of environment that he repeatedly screamed throughout the day and night, banging his head against the pack and play, bloodying his face, until we finally gave in and gave up, packed the family’s belongings at 1:00 am and drove the two hours home because he would not stop disrupting the entire hotel. 

I appreciate people’s intentions but what I want to say is this: if you do not have a special needs child you cannot understand. We, the parents don’t even fully understand at times! Most of us are doing the absolute best for these children, and it is hard. Our patience runs thin. Our mental stamina wears down. We beseech the heavens for answers and finally succumb to the knowledge that God is God and we are not and for some reason we were given the sacred responsibility to raise these special kids beyond our understanding or comprehension. We love these children from the depths of our souls, but you stranger (or friend or teacher or family member) need to understand that as their parents, we understand things about them from the depths of their souls that most cannot, nor will not, ever understand. I know Luke associates me with Veggie Tales. His own mother. When he sees me he breaks out into singing a Veggie Tale song. This stems all the way back to when he was one years old. He also associates me with the song Amazing Grace which I sung to him every day while he was in my womb and then again as I rocked him for two weeks in neo natal after he was born. Luke associates me with the crocheted blankies I’ve made him throughout the years and with counting each and every step that we walk up as we exit his room to the kitchen. Luke doesn’t enjoy it when people love on him, hug him, kiss him, or cuddle him, never has, never will. You can, if you need that for you, but it annoys him. He doesn’t feel loved through those actions. Luke experiences love through chocolate cake, or brownies, or singing songs, or doing goofy paddy cake with his feet. I know this about him; I’m his mother. I know Luke hates new and to attempt to bring him somewhere, on a family vacation, is not loving for Luke, it is actually borderline abusive to not only him but to his entire family. We can’t explain to him why his entire schedule has just been uprooted in an instant, and he can’t explain to us why he’s so upset so instead he screams and screams, the only form of communication he knows for his angst. We owe ourselves as parents the comfort of getting away occasionally without the added stress of a child who doesn’t even want to be there. We owe that to our other children, and most importantly, we owe it to Luke. That’s why any resources which are available to help families such as ours or others are so greatly appreciated and pursued, especially in times of much needed respite. That’s why we need more resources such as day camps, respite care centers, equipment, and especially trained people to help with these children. 

Ryan and I often discuss what the future holds for Luke. We’re honestly not sure. My motherly instincts want to protect him forever, here in my home, where no one can take advantage of him or harm him. My wifely instincts are also really excited for the day when all the kids will be out of the house, and my husband and I can enjoy each other’s company traveling the world. I don’t know what Luke’s future looks like, but I have about six years to get some sort of loose plan in place for him. My ultimate desire looks something like a faith based retreat type of living quarters within twenty minutes of my home – not a very probable or viable option anytime in the near future. I don’t necessarily want to be a full time caretaker for my twenty year old son, but I’m not sure I’ll be comfortable placing him in a state run facility either. I also envision him attending a learning facility by day (physical, occupational, and speech therapies) and coming home at night with an aid to help us and him. His future, especially where we live now in rural Tennessee, concerns me because I’m not sure what my options are. Families with special needs children just want the best for their children. We want them to be safe, have fun, and to be comfortable, and we need more options, especially in rural environments, to make these hopes and dreams a reality not only for these special children but also for the families that have been entrusted to care for them.

I also wrote this as a guest post for the blog www.livingloud.org. Check it out. Great story, great people, fantastic mission.

Just Keep Livin!!