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.

lovedbaby.jpgA baby gone too soon.
A beloved family member diagnosed with cancer.
A dear woman battles emotional and physical abuse at the hands of her husband.
Children beg for food in third world countries.
Ten year old girls lose their innocence and their humanity as they are sold as sex slaves.

It hurts like hell.
It stings
It all falls so painfully short of what we feel this life should be
It aches like betrayal on a massive scale
A world wide scale
And we, humanity, are the victims left in the wake.
A big joke played on all of us
by a bunch of pranksters residing in the Heavenlies.

And we numb the pain with drugs
With wine
With anger
And sleep
Or hurtful silences
Or busyness
Or denial
We numb our cells to the best of our ability
To avoid feeling
To avoid the reality
To avoid the ache
But when the numbing wears off
It still hurts
And we rage against our Creator
Our cells scream
We groan from the never lands
We weep for the lost tomorrows
And forgotten yesterdays
And the vacant presents
And there are still no answers
The Creator is silent.

The baby remains absent
And grandma starts chemotherapy
And the “C” word enters our children’s vocabulary once again
Along with the “D” word in regards to their unknown sibling

And our eyes spill in response to their tears
And children still starve
And that woman still aches for a loving spouse
And girls are raped again and again
And that is the reality of what we call life.
And that is why our hearts ache for something purer
And bigger
And more beautiful
We ache for more
We need more
We yearn for a hereafter
Where all the pain is gone
And every tear is wiped from our eyes
Our hearts scream for some sort of redemption
Something that makes it bearable again
All of creation grapples with the injustice we’ve been served
And we shake our fists in righteous indignation towards the pain we have endured in our fallen nature.
Our souls search through the fragility of our humanity for something deeper.

The “Whys?!” we scream
Why is a Godly woman ravaged by an insidious disease?
Why a baby, an innocent child who has harmed not one, taken so early?
Why!?!?
We scream to the Heavens
To anyone who will turn a listening ear towards our anguish

These were some of the words I wrote in response to losing my beloved baby in December of 2013 http://jessplusthemess.com/index.php/my-blog-old/entry/love-and-loss-and-bethlehem .  I felt so incredibly alone, lost, scared, fearful and full of despair and so I hid.  I hid behind words.  I hid in my house.  I hid behind a fake smile plastered across my face that told the world I was just fine.  But I wasn’t fine.  I thought I was being punished for some reason.  I could not understand why God couldn’t grant me the desire for a healthy baby – especially after all I had been through – especially after obeying what he had called me to in blending my family with another family and raising 7 beautiful children.  I deserved this baby!

In hindsight, God used the next 9 months of waiting to become pregnant again as an opportunity to birth something beautiful in my marriage and heart as Ryan and I gained a deeper intimacy through the pain and revelations that preceded the conception of our 8th child who would be our beautiful daughter Annabelle Ryan.  God is good. All the time, but man, sometimes it hurts like crazy to walk in obedience to his plan.

I was honored to be a part of the launch team for Sarah Philpott’s book Loved Baby.  In all honestly, I have never read a book on losing a baby that impacted me quite like this one did.  She is honest. She is vulnerable, and she is realistic in explaining step by step, what to expect, how to process all of the feelings, and how to slowly release the pain and agony to your Heavenly Father as you allow him to help carry your burden; as you choose joy over fear when you are blessed with another child, and it is a choice to be made – wishing “we could be filled to the brim with delight about the new life blooming in my womb. But the little thing called memory prevents us from pure elation,” and her wise counsel, “When fear seeps into our soul, let’s combat it with joy.”

This book will be such a blessing to your life and to anyone you may know who has walked through this difficult terrain, AND…. I have a copy to give away! Comment here (sorry, I know it’s a bit like Fort Knox to be allowed to comment on the blog – you can thank the trolls for that) or comment on Facebook or Instagram about why you would like to win a copy. I’ll draw a winner Sunday evening.

Just keep livin!

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I walked into the ultrasound room and felt the complete absence of warmth. No beauty relieved the coldness, no picture of a mother holding a child or a sunset over the water. Nothing to remind those who nervously waited of the potential for joy within the world.

A large, heavyset woman poked with her stubby fingers at my thin, slightly rounded body. As the silence continued to descend, the air thick­ened with unspoken thoughts. I looked at this doctor, the expert I had been sent to, repeatedly trying to catch her eye, to shake her unmovable countenance. I wanted to see a glimpse of understanding in her cold stare, but she refused to make eye contact. She refused to make me an indi­vidual. She refused to feel anything for me. And I began to despise her.

The pokes with her finger turned to prodding with the ultrasound wand as she silently walked about the room with an air of intellectual superiority, contemplating the defective nature of what lay within me. I found myself suffocating beneath her smugness and the uncomfort­able silence, thinking about her large belly looming over me. I focused on her obesity to avoid thinking about the imperfection held within my womb, about the diagnoses around the corner.

I lay on the metal table, completely still, as she spoke in hushed tones with the nurse. The gravity of the situation began to set in. Hot, confused tears started to flow uncontrollably.

The doctor glanced at me and asked, “Where’s your husband? He should be here for this news.”

I explained, blubbering through tears, that we hadn’t realized the severity of the situation, and he had remained home with our other son.

The doctor stretched out her plump arm and began drawing repetitive circles on the whiteboard, a demonstration of how she viewed my baby’s predicament. I sat there feeling like a child who was failing miserably at a particular subject in school, but the subject I was failing was that of being pregnant. My teacher drew a large head representing the accumulated fluid and then continued to draw circles around that head, signifying continued growth as the fluid increased month by month. I half-expected her to draw a big BOOM with scribbles and chaos as the head ultimately exploded.

She didn’t. She simply said, “If I were you, I would take care of it and try again. You are a healthy young girl, and you won’t have any problems getting pregnant. In fact, you will be doing this baby a favor, because these kinds of fetuses have a way of spontaneously aborting themselves. They are not supposed to make it. It’s just nature’s way.”

Most people have experienced difficulties in their lives at one time or another. The excerpt above is taken from my recently released memoir Sunlight Burning at Midnight and details one of the most heartbreaking periods of my life as I heard a terminal diagnosis in regards to my unborn child.

You may have traveled down a similar road or perhaps a different path such as the death of a spouse or a child, for others it may be a divorce, job loss, a wayward child, or a debilitating disease, but one thing is for certain, no one is immune to pain or suffering this side of eternity, and oftentimes suffering brings the undesired side effect such as health issues or depression.

I’ve had my share of depression during tragic situations and have even experienced panic attacks.  To this day, if anyone in my family, Ryan, one of the kids, or myself, is dealing with an illness that doesn’t heal quickly, my anxiety levels rise rapidly.  Through the years I’ve been able to pinpoint more accurately when depression or a panic attack is about to hit, and through that recognition I’ve been able to formulate a few coping mechanisms that work well for me – the biggest one being able to focus on thankfulness and joy – which I often find I’m able to do if I immerse myself in uplifting music and surround myself with positive people who don’t drag me even further into the abyss. 

I was recently given the book Hope Prevails by Dr. Michelle Bengtson. Her book explores the connection between depression and tragedy and offers insights on how to rise above the feelings if you find yourself struggling. I appreciated the personal touch that Bengtson offered as she candidly discusses her experiences with tragedy and the accompanying depression she found herself fighting because of the trials.  Interestingly enough, she is a trained neuropsychologist, and if anyone should have had all the answers for dealing with depression, it should be her, but what she discovered was that she didn’t. She had to rely on God’s grace and worship music which she found to be beneficial in her personal battle with depression.  I would agree as I have also discovered that the right music has the ability to strip away many harsh realities and instead place the listener in the midst of the Almighty God who is able to trade our mourning for joy. 

It can be difficult to feel God’s presence in the midst of intense pain, and oftentimes we don’t even recognize the good or the lessons learned until we are well past the season of tragedy. Thirteen years past Luke’s birth I see so clearly God’s hand all over his life and also how his story has been magnificently used to bring glory to God and to touch other’s lives. I also see clearly how God wove tragedies from two broken families, mine and Ryan’s, to knit together a beautiful blended family that so clearly illustrates the big family of God, his choosing each one of us, adopting us into the flock, redeeming and loving us and calling us sons and daughters.  Today, I’m thankful for the pain because it brought a redeeming beauty with it.  Bengston offers the same hope to the reader, “Honestly, I wouldn’t voluntarily choose to endure such pain, nor would I wish it on anyone.  But now that I’m on the other side, I can see how even in the midst of such pain God was there.  And truly, he used even pain for my good.  For that I’m thankful.” (35).

As the King of Old reminds us, “There is a time for everything and a season for every activity under Heaven. A time to be born and a time to die. A time to plant and a time to uproot. A time to kill and a time to heal. A time to tear down and a time to build. A time to weep and a time to laugh.  A time to mourn and a time to dance.” Ecclesiastics 3 1-4.

I am now dancing.  Thank you Jesus.

Now the exciting part!  I have a copy of Hope Prevails to give away to one of my readers!  So here’s the deal.

1.       Like Jessplusthemess on Facebook.

2.       Follow Jessplusthemess on Instagram.

3.       Comment either here or on one of my social media sites about your go to method for combating depressive thoughts and feelings. 

I’ll draw a winner next Tuesday, July 4th! 

Just keep livin!

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Hard times are, well, hard.  Watching someone live through a difficult circumstance, whether it be a death in the family, a dismal diagnosis, a job loss, or a myriad of other possibilities, is often heartbreaking and at times awkward.  Awkward in that we so badly want to help in some way or say the right words that will offer comfort, but we discover that we have no idea what to say or how to say it, and we certainly don’t want to say the wrong thing and have it bring more hurt into an already delicate situation.

 

 

I’ve had a little experience with difficult times in the past as have many of you, and there are some loose do’s and don’ts that I’m going to share in this post.  Anyone who is the midst of a treacherous journey this side of eternity will attest that there certainly isn’t a score board for appropriateness, but there are ways of saying or doing something that are more effective and life giving than other ways. This post is meant to help – not hurt or condemn so take it for what it’s worth. 

Words  

First, you don’t have to say anything – really.  You can even say, “I have no idea what to say” or “There are no words.” We’re good with that.  There’s no shame in either of these heartfelt expressions. Honestly, we have no idea what to say either.  It’s bad.  We all know that. We often feel like we’re living completely naked in front of the world through our deep pain – which is all too obvious.   It is what it is. We’re grappling with the words just like you are.  Hugs are good. Real, tight, sincere, break your neck type of hugs.  

“I’ll be praying for you.”  I’ve struggled with this one – not always but sometimes.  In 2010, in the midst of complete chaos with a husband diagnosed with brain cancer and four young children, and I was just trying to not drown or completely lose my mind or end up in the looney bin, and I’d hear “I’ll be praying for you,” randomly thrown into the midst of the madness, almost flippantly.  These words often felt like they were said to relieve an awkwardness on behalf of the speaker who had no idea what to say. Maybe these people sincerely went home and prayed, but it often seemed forced, guilt induced, and more for the benefit of the one speaking than for my benefit. However, if these words were attached to a tangible way of helping – they spoke Jesus much clearer (and louder) into my situation.  

Someone called me once, a person I had never had a conversation with before, out of the blue, to tell me that God told them to call and pray with me.  My husband was in hospice, I had an eleven month old baby, a three year old, a handicapped five year old and a seven year old.  My life was in complete shambles, and this person kept me on the phone praying for over an hour – through the baby’s cries, Mabel’s babbling, Luke’s screams, and my hisses for them all to settle down. I have no idea what was said except that it was loud, sounded spirit filled, and totally for his or her benefit – not mine. Moral of the story, there is a time and a place.  Really evaluate the situation, and if your deeds would speak a louder Jesus than a long, elaborate prayer, go with deeds or pray in private. Those prayers are just as effective.

Along those same lines, some of us are not necessarily comfortable with people running up to us in Walmart, boldly laying hands on top of our heads, and loudly praying for the whole store to witness. I would caution not to ever do this, and instead, realize that most people will find this situation highly uncomfortable. Not to mention, if these people are shopping at all during a difficult season of life, it’s probably a treat, and undoubtedly their time is limited before they need to return to their current reality. 

“All things happen for a reason”, or “God doesn’t give us more than we can bear.” Not appropriate to say in the midst of a difficult situation.   We are told that in this world we will have trouble – not only told that, but it’s a promise to believers.  We do not live for this world, but we are called to obedience in whatever he may ask of us, we are to obediently walk through it in faithfulness, and God may give us more than we think we can bear, but we are promised that he will bear it with us. 

Cards with words are nice.  Cards with words and money are helpful.  I realize not everyone can give but families are strapped during difficult times – especially when the primary breadwinner is involved.  I still have every card given to me during Jason’s illness and my pregnancy with Luke.  In those chaotic moments, the words meant very little, but now, as I go back and reread them, they are precious memories of how much we were cared for and loved during those years of hardship.  

“How can I help you?” You might get an answer or you might get “We don’t need anything, but thank you.”  This is a lie.  Press the issue a bit and offer tangible suggestions.  I would usually start with the “We don’t need help….” then as suggestions were thrown out, I would jump on one or two of them.   

Deeds 

We ate TONS of casseroles.  Initially the casseroles were great, and then we were on month 7, 8, 9, and we got to the point where tatter tot casserole lost its appeal pretty quickly.  One specific meal has always stood out in my mind.  I couldn’t even tell you who brought it but is was chicken fajitas with all the trimmings.  She probably had 10 containers, beautifully filled with homemade salsa, sour cream, chopped tomatoes, lettuce, cheese, warm tortillas, and chicken.  I’m sure it was a ton of work, but it was so appreciated!  

Here are some other unique ways that we were helped during out time of need. 

Gift certificate to order pizza

Gift certificate to order Schwans meals.

A neighborhood church came over to do a yard clean up/fix my house/problems day.

The neighborhood guys took turns mowing my lawn

Someone brought my minivan into the shop for a full detail

A group of ladies cleaned my house every week and bought me a new vacuum cleaner.

Another group of ladies picked up my laundry on a weekly basis.

People who were noticeably nervous about Lucas would take him for a complete day to the park, the zoo, wherever –  just to give me a break.

A church congregation bought my kids Christmas one year, the tree was overflowing with gifts for four children who had just lost their dad.

My aunt purchased stepping stone kits for each of the kids so that they could make handprints with their dad before he passed away.

A dear friend sat with Jason for hours while he dictated letters for me and the kids to receive after his passing.

Numerous people brought Jason to and from work and also to his doctor’s appointments.

A church stopped by with a van load of groceries.

Someone offered to take Caleb clothes shopping for the new school year.

Someone bought all of my children new shoes.

A woman came over and volunteered her time to give us all haircuts.

A woman weeded and picked the produce out of my garden.

This same woman preserved the produce from the garden so that it wouldn’t go to waste.

Someone sent an anonymous gift certificate for a spa day (for me)

Another person bought me a massage.

A friend brought over a bottle of wine and offered to just sit with me, no strings attached.

A friend’s dad built a gate to our family room so that Lucas would be confined and I would be able to get some things done around the house without constantly monitoring him.

Our neighborhood built a fence around my yard so that my kids would be kept safe from oncoming traffic and again, for my peace of mind. 

I had wonderful angels surrounding and lifting me up during a very difficult time, and I’m sure there were a million other ways people found to help that I’m not remembering.   I hope this list doesn’t condemn but is instead helpful.  Whatever you do, do something is the best advice I can offer.  

Just keep livin!