Gathering

The past couple of months there has been a lack of peace in my home, and I often thought, this mothering gig really isn’t my thing anymore. 4 teenagers, one with profound special needs, a pre teen, a 10 year old, a 9 year old, and a four year old who has no lack of confidence. It was a lot. Between health and job and hormonal issues which led to emotional issues and arguing and backtalk and snarkiness and bad attitudes and the older kids teaching the younger kids things they had no business knowing; the whole thing was a big honkin cup that overfloweth… or perhaps, it was more like a kitchen sink or the bathtub spilling over & it was causing significant damage. And we – the parents – should have immediately steered the ship back on course, but instead we bickered & bitched & complained as we held on for dear life to the raft boat the kids threw us when they made us walk the plank.

This sudden change in the family dynamic was attributed to a few circumstances: one, everyone was getting older and hormonal and becoming more opinionated & two, our move to an urban community where the kids had opportunities for activities, sleepovers, and jobs and the focus slowly shifted from the family unit – a strong unit we had in rural America where we relied heavily on each other because it was all we had – to individualized focus “You take care of you, and I’ll take care of me” & as long as the older crew took ownership of themselves: jobs, food, school, homework, play – we didn’t question much. We reasoned it was simply a stressful time in our life and “this too shall pass” and then…

Then, a few weeks ago, I said to my husband “I really miss family dinners.” You see, with the introduction of jobs and late nights and neighborhood kids to play with and everyone fending for themselves, and in turn each individual grabbing a bite to eat here and there, dinner time as a family had become almost obsolete – the rare exception in our family since our conception in 2011. For 8 years, we have religiously sat down at the dinner table and enjoyed a meal together – religiously until the move this past December. When Ryan and I married, we knew this tradition would provide a foundation to our success as a blended family – the art of gathering around a table for a home cooked meal and offering a blessing for not only the food we were about to eat but also for his faithfulness through our lives. We knew that the table would provide the foundation for community and connectedness in our newly blended home and the absence of the table would only leave a void and disconnect.

We recently reincorporated family dinner night. It looks a little different than it did in rural America, and we eat later – around 6 now because of play time with the neighborhood kids. We’ve made it a requirement for any child who is home that evening, and my oh my, what a difference we’ve seen already. Attitudes have changed and lightened as we laugh around the table partaking in fresh pasta and warm bread. I like my kids again & I think they might like me too as the focus has shifted, and we get to know each other on a heart level – on a real level- rather than just co-existing.

There is so much chatter in the world today about how lonely we all are, how depressed and isolated and longing for community, and this is not only true for ourselves as adults, but it’s desperately true for our kids. Our homes need to be safe places of respect & connections and what better way to foster these desperately needed essentials than around a table? What better way to encourage conversations? And what better way to show love than to invest our time, our most precious commodity, in them? Give it a try. You won’t regret it ❤

Just keep livin.

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!

The Cloud is Moving – Courage in the Midst of Change.

It oftentimes takes courage to say that something isn’t working anymore, and truthfully, it hasn’t worked for some time for us.

A little over five years ago our family left Michigan for a dream that included a simple life in rural Tennessee. This is how Ryan and I operate – we hear “GO!”, and we go. We married quickly, Ryan moved to Michigan within months of proposing, and we moved to Tennessee after seeing our current house once. We are decisive, informed, and not prone to obsessing much about how our decisions will be perceived by others outside of our immediate family. To reference a Biblical metaphor, we move with the cloud. Continue reading “The Cloud is Moving – Courage in the Midst of Change.”