It can be difficult to understand the complexities of raising a special needs child if this calling is not part of your daily reality. I get it. I never gave these children nor their caretakers a second thought before I had a handicapped child. It’s hard to empathize with a situation without experience.

 

My goal in writing – in books, on the blog, and on social media – is to tell stories that portray all of the aspects of raising a special needs child – the demanding, the taxing, the beautiful, and the joy.

 

There is undoubtedly a blessing. These kids are closer to Heaven than we will ever be with their innocence and child-like faith. They teach us invaluable lessons about the nature of our heavenly father’s love and care for his children. They model joy, perseverance, and faith in quantities us “normal” folk can only dream about BUT –

 

Raising a special needs child is a massively exhausting undertaking as well.

 

A few weeks ago a friend’s 8 year old daughter unexpectedly passed away. This little girl was never supposed to survive; however, these kids often have a way of proving the experts wrong. I recently asked her mama if the new ease of life was haunting because when you live in special needs world, there are rarely moments of ease. It’s like being in a combat zone. You’re always mentally anticipating your child’s next basic needs – hunger, pain, angst, smell, what, where, when, why – all the time. These kids often don’t grow up and become independent so there is no end in sight which can feel overwhelming.

 

One of my greatest goals with The Lucas Project – a non-profit organization to assist special needs families in rural Tennessee – is to educate people on why they should care – even if it’s not a part of their daily reality.

 

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Matthew 25:40

 

These children are the least of the least of the least of these. They often have the mental and emotional capacity of an infant. They are usually physically unable to care for themselves without continual assistance, and without the loving intervention of caretakers, these children could not survive.

 

I would admonish you to care about these kids and their families because you don’t have to care, and that’s a blessing.

 

Special needs may not be a part of your daily reality, but it is a reality for 6.7 million children (nces.ed.gov) and often includes:

 

Bathing a grown child

Feeding – either by utensil or tube feeding – often restrained in a special chair.

Diapering a thirteen year old

Wondering at times if one day you’ll be diapering a thirty year old.

Restraining a teenager who has become aggressive due to puberty.

Entering the local ER in the middle of the night to play a guessing game for the next 24 hours as you try to determine the cause of angst in your non-verbal child.

Declining an invitation for a fun event because there is no one to watch your child, and he or she would cause disruptions and outbursts.

Attempting to distract a child who is frustrated and banging his head against his crib.

Sleeping with a baby monitor beside your head for 18 + years

Getting up multiple times in the middle of the night to administer meds, tubes or breathing equipment or to make sure your child is still alive.

Spending the majority of your free time in a doctor or therapist’s office.

Not being alone with your spouse in years because there is no one you trust to care for your child in your absence.

Suffering extreme pain and popping Advil like it’s candy because your child has grown too large for you to comfortably handle, and the strain is taking a toll on your aging body.

 

You should care about caretakers who experience stress, anxiety, exhaustion, and depression on a regular basis but don’t have the funds nor the time to address the problem, and in rural environments, lacking in professionals to even help address the problem!

 

You should care if you live where resources are plentiful because there are people who live in rural communities where resources are sorely lacking.

 

You should care if your children are healthy because there are parents who manage a child’s chronic illness every day of their lives.

 

You should care because we are all a part of this grand body known as humanity, and we have a moral obligation to care for one another, especially the least of these, like our lives depend upon it – because they do.

 

Please consider a donation to The Lucas Project so that we can all begin caring or check out TheLucasProject.org to learn more.

 

Just keep livin.

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!!

“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 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 survive, and if miraculously he did, he would probably die in my arms. Luke and I have been fighting ever since.

Luke is now fourteen years old, a complete miracle who continues to shock and amaze even the most skeptical of experts. His brain continues to develop. He continues to progress. His eye sight is better than anyone would have ever predicted. 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 fourteen year old in diapers. Full time diapers. He can speak a handful of words to get his point across such as more, all done, juice, and eat. He walks, with assistance, but not for long distances. He becomes extremely agitated with any new experience such as people, environments, foods, or videos to name a handful 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 but 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.

theskittlemonster
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 we all breathed a huge sigh of relief. That’s our reality with Luke for about two 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 difficult. 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 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 four 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.

Just Keep Livin!!