Manna for the Moment

Luke has been back in school for about a week now.

Experts claim that special needs caretakers often experience PTSD, and I particularly notice this tendency when I don’t have him on my radar for an extended period of time.

Every 30 minutes or so, I ignore the sounds around me – the whir of the washing machine, the chattering of my four year old, the constant buzz of lawnmowers outside – I ignore the background noise and selectively pinpoint my hearing to the basement – listening intently for Luke – listening for either a scream of “ALL DONE!” or, lately “WIGGLES!” which really just means I don’t like what I’m doing or watching so please offer 500 additional options, and then I’ll agree to one of them by telling you – “BYE! BYE!” Or I wander aimlessly to my bedroom where I check the 24/7 surveillance monitor, but there are no screams and the image on the screen is empty.

And every couple of hours I find myself in the basement, lost, having forgotten what I came for, but my body can’t forget the summer routine, and I breathe deeply – quickly checking for any indication that there may be a diaper to change but there isn’t. There are only the remains of Luke’s favorites: his iPad – in need of charging before he arrives home and numerous sippy cups scattered about that need cleaning – the only cups he will drink from.

And like clock work, morning, noon, and night I ask myself “What am I going to feed Luke today, and do we have those ingredients?” Due to sensory issues, I often prepare his meals separately, and due to my desire for him to eat healthy food, I will go the extra mile to hide the zucchini and green beans.

This is the process of PTSD for caretakers – always being on, always having our senses at high alert; always being at the beckon call of another. It is a refining process like no other; a constant laying down of our life and our desires for someone who is unable to care for themselves. It is a holy calling; it is an exhaustive undertaking. It takes patience and self care and sometimes righteous anger and unrelenting faith – faith in meaning beyond ourselves for that’s why we do it, right? Why we rise to the calling and fulfill the mundane and monotonous tasks day in and day out.

And somehow, gloriously – miraculously really – as the sun appears, or maybe it doesn’t some days, we are greeted yet again with the gift of time which will bring fresh grace and new mercies served alongside lots of lukewarm coffee as we hurriedly offer a familiar prayer – “Give us this day, our daily bread” – like fresh manna from Heaven – manna for the moment – and that is enough. It has to be enough.

Just keep livin.

10 OCD Steps For Great Sleep

Hello!

As promised last week, I’m going to share my extensive sleep routine. I have numerous OCD/Obsessive/Type A quirks (that’s what we’ll call them) and have never been a great sleeper until I stumbled upon these options and then slowly added them until I was miraculously sleeping throughout the night.

Ok, here goes.

1.Hug and kiss all of the kids good night at 8:00 p.m. Yes, ALL of our children retreat to their areas of the home at this time. Most (none) go to sleep immediately but instead read, draw, play Legos, watch television (the boys) – you get the point but our point as parents to 8 children is this, mom and dad need two hours of alone time to decompress, regroup, and relax before the circus begins all over again at 6 a.m.

2.Draw the room darkening shades and room darkening curtains.  I need pitch black without a trace of light in my room in order to sleep.

3.Watch Netflix with Ryan in bed until 9:30

4. 9:30 – take 1/2 a Unisome.  I started this when I was pregnant for Mabel and have never stopped.  Honestly, I’m not sure I actually need it anymore but who wants to take that chance?

5. take 1/2 tea magnesium calm in water

6. Make Yogi Sleepy tea and add 1/2 tea Reishi Mushroom.

7. Take CBD Tincture

8. Rub Hemp Balm wherever there’s pain (usually my feet and hip)

9. Drink tea while falling asleep to Friends (Yes, it has to be friends)

10. 10:30 – Fan on, lights out – Ryan’s job because I’m usually already asleep.

 

 

There ya have it! Yes, I’ve tried Valerian and Melatonin.  Both give me weird dreams. Maybe this routine will help someone else in need of a solid night of sleep.

On a different note, I really should have affiliate links for all of these products, but I don’t.  I’m horrible with details, and I don’t have the time to mess with it.  It’s been suggested on a number of occasions that I should pursue a marketing specialist and/or blog manager for monetizing options, SEO, picture layout, etc.  I’m open to this idea; however, the right person would have to be content with primarily working for a percentage of the profits at this point in my career. Maybe a stay at home mom who wants to make a little extra cash? A college kid who knows his stuff?  A retiree? Some thoughts. If you know someone who would be a great fit for a position like this, please send them my way at jessplusthemess@gmail.com.

Just keep livin!

(This post does contain affiliate links that I may receive compensation for).

A Birthday Wish for Luke

It’s Luke’s 15th birthday exactly one month from today. August 12, 2004 he came screaming into this world as he was gently lifted from the gaping hole in my belly. I held my breath & desperately prayed that he would defy every odd and please dear God, let him LIVE and he did! Hallelujah! and he not only lived but he thrived and progressed for almost 15 years! Praise Jesus! And as thankful as we are for his life and progression, the simple fact remains that as Luke ages and gets bigger and stronger and goes through puberty with lots of pent up testosterone flowing through his body, his needs have become quite intense, and it’s difficult to keep him satisfied, entertained, and at times, safe.

Continue reading “A Birthday Wish for Luke”

We Can Do Better In The Bible Belt.

I recently noticed a woman’s angry post on social media regarding a lack of resources for special needs families – particularly in the South – specifically in Tennessee, and I curiously asked, “What states do provide adequate resources for special needs families?” Her response surprised me, “Any liberal state” and then she followed up with a few examples – “Washington, Vermont, California, and New York.”

Interesting. The Bible Belt, the South where we have a church on every corner and every flavor of religion imaginable, Trump country, the land where we strongly admonish mothers to carry an imperfect baby to term because of our beliefs, this pro-life land flowing with pregnancy resource centers, right to life events, and church bake sales is also known to be one of the worst areas in the country for ongoing resources after you give birth to that child in question.

But the liberals – Bernie and Hillary and that whole progressive bunch – they’d rather eliminate the imperfection that they know will cost oodles of tax payer dollars, but if you choose the difficult, ongoing, stressful path of raising a special needs child, this bunch is sure as hell going to help you out. Time for a change Conservatives. Time for a change Bible Belt. Time for a change America.

I am pro life when it comes to the unborn. I’ve proven this with my own flesh and blood, and it isn’t an argument I’m going to entertain with this post; however, I am suggesting that pro-life must extend beyond a mother’s womb. Pro-life should extend to providing tax dollars and fundraisers for the parents who make the difficult decision to choose life for these children. Pro-life should provide ongoing support for the least of these even as they age and especially as their parents age. Pro-life means not placing these families on waiting lists that never seem to end. Pro-life ideally would provide enough support so that we don’t hear another heartbreaking story about a parent who reached their breaking point with a child who could not be calmed and would not be pacified, and we point our judgmental fingers and gasp, “HOW COULD THEY?!” when that panicked caretaker finds a less than ideal solution. Not as a fetus – nope – but choosing to terminate the situation when it’s no longer socially acceptable.

Special needs families need proactive change and soon. How are these changes going to occur? And who should provide the resources? I’m not an expert, but I am a mom raising a child with profound needs, and I have a few thoughts.

1. Special needs caretakers need to stop sugarcoating the journey because no one will help us if we don’t make our needs known. If all we do is talk about how little Timmy is such a miracle or Betsy is a blessing, WHICH THEY ARE, but not share the rest of the story, we are missing an opportunity.  We do our stories a great disservice if we never discuss the difficulties or how we have panic attacks on a regular basis. The experts compare the anxiety of raising a child with special needs to the PTSD often experienced by war vets.  Yes, it can be that stressful.  These kids often have needs that never, ever end and that becomes very disheartening as a parent. Society can’t read our minds. Our cities and towns don’t “just know.” Our friends and family are incapable of understanding if we don’t tell them. There will always be a few who will ridicule us for our truth or our choices, but we need to plow through anyway. Courage my friends, courage. We need to make the realities known, set aside our “bless your hearts” and dive into authentic truths when it comes to special needs.

2. Awareness. Right in alignment with number one. We need to tell our stories. I have a dream of one day being a part of a documentary that will showcase all different ages, walks of life, and cultures immersed in a special needs journey; detailing the joys, trials, happy moments and the difficulties – detailing it all so that the world can no longer claim ignorance. Wouldn’t that be a wonderful resource for everyone? But, in the meantime, tell your story. Stories are what connect us to one another and allow compassion to emerge which will eventually provide resources and support. There can not be change without empathy.

3. Contact your state representatives – even if you don’t have a special needs child! Do it for someone you know. Beseech these political leaders to pass the bills, find the funding, or whatever else they need to do to help these families. Currently, 1 in 59 children has autism and that’s just autism! These numbers seem to increase every year so if you’re not affected by special needs now, you will be soon.

4. Churches – Christ admonished us to care for the least of these, and this includes the weakest members of our society – those who cannot care for themselves – the special needs population. I realize that not every church can afford a special needs ministry, but every church can afford to lend a hand to special needs family in the community. Generally, what a family needs more than anything is a break – just a few hours for a date night or time alone in the bath or a nap. Every church can provide this invaluable resource for at least one family in the community. It doesn’t take any money – just time and patience. If your church does have money in the budget to implement a special needs ministry, do it! This is about the only way a family can comfortably come to church. Or, if an entire ministry isn’t in the budget consider a week of Vacation Bible School in the summer or on a school break.

5. I can’t speak for every special need’s family, but I have spoken to many of them throughout the years and the responding themes I hear are: exhaustion, despair, loneliness, and concern for the future. Most of these feelings can be remedied through a break. Summer care and school holidays are really difficult because most special needs kids thrive with structure, and when you eliminate structure, these kids are often confused. What does this confusion actually look like? For Luke, it involves head banging and screaming. I sometimes compare the scenario to a colicky baby – except Luke is 14, and he probably won’t outgrow these behaviors any day soon. In fact, I worry that as he goes through puberty it will only become worse. Structure is oftentimes a special needs child’s best friend.

6. The future. This is a biggie. I know I don’t want to take care of Luke forever. I will if I have to, but it wouldn’t be my first choice for him or me. I think he deserves better than hanging out with his old mom and dad until his dying day (or ours), but I don’t know what the options are. Most of what I hear involves a waiting list a mile long or a bank account a mile long. I pray this changes and we have viable options before it really becomes an issue in our life.

We can do better for these families. Please consider sharing this post so that as a culture we can make life just a little bit easier for the least of these and their families.

Just keep livin!