autism · Down syndrome · family · parenting · special needs parenting

Let’s Talk About Self-Care

It’s a topic I go round and round with; self-care.

I love the idea of self-care, putting my oxygen mask on first makes perfect sense, if it was actually that simple. The problem is that there is nothing about parenting a child with complex developmental, behavioral and medical needs that makes the oxygen mask analogy work the way it’s suggested.

Having worked with oxygen as a paramedic, if the person receiving it exerts themselves, they need more oxygen. The delivery system is cumbersome and the person is tethered to it in order to get the benefits of the blessed gas. That makes for serious limitations. To put on your oxygen mask adds the burden of obtaining and maintaining the equipment necessary to do so.

Today is the first day in months that I haven’t felt like I have more to do than I could possibly accomplish. Sleep was pretty decent last night, I was only up once with Ben, and this is the first week of 2019 when Ben has no appointments and, unless something completely unexpected happens, no snow days. That means I have a whole week to get work done, work that has been waiting since last year to be touched.

I’ve often live in survival mode. Treading water so to speak. Prioritizing self-care feels like lugging around an oxygen tank in order to keep my oxygen mask on. If you have never tried metaphorically wearing your oxygen mask while treading water, I don’t recommend it.

Like when you’re broke and need gas to get to work to get a paycheck and you put in only as much as is absolutely necessary and just pray it gets you through the week.

Or when you need to get groceries and have to wait for the money to hit the bank account so you make do with leftovers and the odd items at the back of the cabinets for days on end.

Most people have been there (if you haven’t, stop right here and steep yourself in some serious gratitude), and parents, especially moms, of kids with complex needs, live there when it comes to meeting our own needs.

I do what I can. I get outside to soak in sunshine, and field the never-ending phone calls from doctors, teachers, insurance, and more on my little outing.

I take short little trips to see family and get away, clearing my schedule and notifying as many people as possible to not contact me. To do so I have to cram in impossible amounts of work before and after and still manage urgent communications, which often have the bonus of being at odd hours if I get to visit another time zone.

Please hear me, I despise complaining. Kvetching feels dirty to me. I strive for resilience and optimism and strength. I bathe in gratitude for what we have on a moment by moment basis. I find joy in the little delights of the day, like when my pileated woodpecker friend visits my suet feeders or the belly laughs over the antics of my kids and pets and even my husband. There is so much that I do to keep keeping my head above water.

I’m not a whiner.

But as I tread water and continue to do everything in my power to keep my nose out of the water, my oxygen tank was kicked off long ago as more of an anchor than anything beneficial.

Having the resources for self-care, much like having the bank account that allows you to fill the gas tank all the way up every time it’s low and load up a shopping cart with goodies as the need arises, is just not something that everyone can just do. Not everyone can find the time, money and energy necessary to take care of herself.

And being told how important it is doesn’t help. I’m not diving to the bottom of the lake to retrieve my oxygen tank, that’s precious energy I can’t afford to expend. Every single fiber of my being is dedicated to staying afloat.

I like to wrap up posts neatly, whenever possible on a lighter note. I’m not comfortable being this vulnerable and blunt. It’s nice to leave my readers with a warm fuzzy for their day. But this is truth. Not just for me, but for so many of us. We’re out here just keeping on. I just want you to take a minute to see us.

adoption · Down syndrome · special needs parenting

The Next Step in Pro-Life

This weekend marks the 45th anniversary of the landmark Roe v. Wade decision which legalized abortion nationally. I am not even going to attempt to discuss the law, rather, I’d like to examine the next step.

What happens after birth?

What happens when children are born with disabilities, and in an instant a parent becomes a caregiver?

What happens when a parent gets addicted to opioids or dies of an overdose?

What happens when parents hurt their children because of human frailty, or neglect, or substance abuse?

What happens when children have enormous medical challenges?

What about services and support for people living with mental illness?

And so much more.

Wouldn’t robust support of families caring for children with exceptional needs be pro-life? Would women be less likely to terminate a pregnancy with a child who has a prenatal diagnosis of disability if they knew that access to everything their child would need to thrive would be available and affordable?

Wouldn’t it be pro-life to fund research and resolution for opioid addition? And while we’re at it, there are record numbers of children in foster care at present, in large part related to opioid addition, being a foster parent is, in my humble opinion, the most stunningly beautiful example of pro-life imaginable.

Do you get what I’m saying here?

There are dozens of ways to embody a full-circle, lifelong pro-life stance without even bringing abortion into the conversation.

But it’s hard.

It’s easy to talk about changing a single law, and to carefully hand select politicians who have a certain box checked on their platform. But if that’s your stance, can you answer what should happen after the children are born?

Adoption.

But wait, is it right to separate a child from their ancestry for life? Biology is enormously important, and while infant adoption is sometimes necessary, far too often it’s a lifelong solution to a short term problem when better solutions for both the child and parents are available.

I don’t claim to have answers, in fact, it’s the questions that overwhelm me.

But as a person who has spent my adult life focused on the children who are already born, the ones with disabilities, the ones whose parents are addicted, the ones who have been orphaned, the ones with mental illness, the ones with so little support. I have come to believe that if everyone who made sure that they voted for the pro-life candidate took a step or two to care for the children once they’re born that it would transform everything. We have the ability and the obligation to fill in those vast gaps for the children who are already born.

cancer

Dear Cancer

Dear Cancer,

It was 8 years ago today that you showed your ugly face to us in that decrepit hospital room. You had been ravaging our child for weeks before we found you out, and when you finally showed your despicable face we shuddered with despair.

We have long known you as a dirty-handed villain, we knew that you picked on babies, and hated the idea of you. Then you picked on our baby, and you went from a nameless, faceless boogeyman to our personal nemesis.

We were told that the only recourse was to go to war, and the battle began forthwith. Our son’s oncologist warned us of the cost, and how close the battle within would come to destroying your host, our child. In our haste to wreck destruction on you, we discounted those words, only to recall them when they so quickly came to fruition.

Yes, you almost stole my child, yes, you ravaged his body, his spirit and our whole family. You robbed him of more than we can itemize and there’s no recovering the loss.

You took him, and us, through shadowed valleys where every good thing was shrouded by your hideous, omnipresent veil. You pilfered our peace, joy, and hope. You took things you have no right to even touch.

Eight long years after you swept into our lives as a thief, we have repaired the gaping holes you left behind with patches lovingly crafted to cover the horrible gaps. We have used great diligence to restore the chaos you created.

Though we have repaired the outside, fortified our foundations and by most appearances we are whole, those scars remain.

Dear Cancer, as we close this letter it is with the resolve that we will not allow you to have any more plunder than what you’ve already taken. You will not reap bitterness, nor resentment; we will permit you not to perpetuate your ruination, you shall not taste the satisfaction of our rancour. Though the terror you wrought often threatens to creep in, we resolve that peace will win and fear will lose.

But we shan’t forget you. In your memory we will pay forward all manner of love, goodness, and Shalom. As a tribute we will share joy, peace and well-being; we will stand in solidarity with the many you continue to pillage.

Dear Cancer, we believe that Love wins, and we won’t allow you to take that from us too.

Sincerely, the fighters

parenting · special needs parenting

My Life Feels Like a Test I Didn’t Study For

A friend posted those words yesterday and I tried them on to find a perfect fit.

Remember those swimming tests you had to do to get the special armband at summer camp, you know, the one that meant you could swim wherever you want?  Those tests terrified me.

I had what could (perhaps slightly dramatically) be called a near drowning as a toddler. It’s one of my earliest memories, being under the water at my aunt and uncle’s in-ground pool on the nation’s bicentennial. I didn’t lose consciousness or anything, and my dad scooped me out relatively unscathed, except for a lifelong fear of deep water that kept me from completing swimming lessons when I was too terrified to jump into the deep end of the pool.

Regardless of my lack of swimming instruction coupled with the ability to sink to the bottom of the pool and remain there with zero effort which has left me a remedial swimmer well into adulthood, my fear of missing out demanded that I not be left in the shallow area of the lake at camp. So, by sheer force of determination, I took (and passed) the swimming tests at summer camp every year.  I always started out convinced I would drown, but somehow managed to keep my chin just above the water line for the full time mandated to get my armband of freedom.

And now that’s how I live life every day.

When we got married and started having kids I had no notion that anything other than 2.3 typical children would be our end result.  I didn’t realize how intimately acquainted with terms like “translocation 21:21” or “ganglion cells” or “bone anchored hearing aid” I would become. Or that it would be a sink or swim style test that I had no preparation for on an almost daily basis.

But here we are, and today I am reminding myself that I haven’t drown yet.

The test is different every day. Often I pass like it’s no biggie. There are times, though, when I need a lifeguard to throw me a floatation device, and there are days when I have to grab the dock and climb out of the water because my nose is barely clearing the surface. But most days I pass the test.  Those days when it’s a near miss, they blow my confidence, but generally leave me intact if not unscathed, though I never quite get past the fear of drowning.

Life feels like a test I didn’t study for, but I’m learning that I pass it almost every time, even if it’s by the skin of my teeth, and even on the days I don’t pass, I survive to try another day. And I think I’m learning to be okay with it.

advocacy · special needs parenting

Is Modern Medicine a Luxury?

Welp, here it goes. I can’t be silent. I reviewed the Senate Healthcare Bill, and it affects my son.  I don’t know if my blogging does a darn thing, but I believe I’m obligated to advocate for my child. As such, doing what I can to ensure that people are aware of the ramifications of this bill and asking those who care to make their voices heard, is the least I can do. 

For the sake of brevity, I will keep this to the two factors which have the greatest impact on my child.  The photos below were taken from an NPR summary of the bill. 


Many people think that Medicaid is a hand out to able bodied people who choose not to work.  However, around 90% of Medicaid dollars go to the elderly, disabled or working people whose income falls below the threshold in their state. Therefore, reduced funding to the program hits heaviest on the most vulnerable populations. As adults, both of my sons will rely on Medicaid for their medical coverage.  It’s not exactly clear what these cuts will mean to them, and perhaps that’s the most worrisome part of this. Alex might be just fine if he stays healthy, but Benjamin’s health needs are lifelong. If he cannot stay on our healthcare plan, and Medicaid is cut, what would the options be?  Nothing here is clear, and for families like ours it’s terrifying. 


This part is even more harrowing. In addition to his developmental and medical needs, Ben has serious mental health needs.   He sees a psychiatrist, uses psychiatric medicine, and needs autism therapy, which is a mental health benefit. Without these in place, his wellbeing is in jeopardy. I cannot overstate the seriousness of this situation. As it is, resources for people with developmental, medical and psychiatric needs are sparse, if funding is cut, it would be nothing short of devastating for Ben and our family. 

But we aren’t the only ones. In fact, we’re pretty fortunate so far. Mike works for the state and has his choice of excellent healthcare plans, of which we have chosen the most thorough and economical coverage. Many are self employed without access to such benefits. For us, the cost of healthcare thus far has been a strain, but one that we can manage. For many, it’s already past management and only set to get worse, highlighted in this Washington Post article. 

Look at smiling 12-year-old Parker from Utah, who needs a feeding tube, an aspirator, a trach and loads of medication to survive. One drug costs $100,000 a year. For a while, his family relied on food that neighbors left on their doorstep because Parker’s medical bills were so high after their health insurance capped out.

I’ve followed Parker’s story for years now, and his family deserves better.  They’re working hard, being resourceful, and just want their son to live! 

Here’s the thing, we have spectacular medical science that’s evolving and growing daily. We are able to save lives that just a few years or decades ago were hopeless. It’s marvelous, simply marvelous. But it’s expensive, as would be expected, too expensive for any but the wealthiest citizens to afford. Do we reserve such marvels for those who can afford to buy it? Is modern medicine a luxury for the few?  Is it a commodity available to only those who have the cash reserves to pay for it?  

How do we decide who gets this care?  Do we deny children whose parents don’t have jobs with a hearty benefit package?  Or do we put caps on it and say we can only spend so many dollars to save a person’s life, and after that just shrug it off?  Or do we leave people with mental illness without access?  This is dangerously close to eugenics. I shudder to think that denying Medicaid coverage for mental illness is a tidy way of saying society shouldn’t be obligated to help them. 

Finally, I want to point out that it’s the “pro-life” party that is endorsing all of this, and I’m calling bullshit.  There is nothing life affirming or life-protecting about any of this.  This is prioritizing finances over people and it’s repugnant. If you suggest that charities or churches should fill in the gaps, please just get off that ridiculous notion. In eleven years of managing complex medical, developmental and psychiatric needs, we have tapped into private resources to a great extent, I’m quite savvy at finding and accessing them, and we have had a church with a congregational care employee who identifies and designates church resources for families in crisis. Between the two, the help has been incredibly helpful for certain things, but only a drop in the bucket compared to the day to day impact of copays, deductibles, time and miles. It’s simply not feasible for private organizations to offset such monumental costs. 

So I ask you, do you really think it’s okay for people to suffer and die when medical care is available, but not affordable?  


cancer · special needs parenting

What is the Problem With Using Scripture Out of Context?

I posted this scripture to Facebook about 6 months into Ben’s treatment for leukemia, 7 years ago today.  I posted it to comfort myself.  Everything in our lives was being devoured by locusts, and I had to find some hope that there would someday be some recompense.  So I looked to scripture, and voila!  It’s in the Bible, God’s word, and I took the coincidence of finding that scripture on a day that it was something I desperately needed to hear, and embraced it.

Without considering context.

Today I looked up the whole passage, then looked up commentary on it.  Chagrined is a good word to use to describe how I’m feeling about now.  This chapter of scripture is written by a prophet.  What do prophets do?  They warn the Israelites when they have strayed from their end of the covenant made with God, and warn them to get back on track, then he reminds them of God’s promises for when they return to him.

This verse has nothing to do with childhood cancer, life after childhood cancer, or any kind of promise God is making to me as an individual who has endured suffering.  

I wish it was about me.  I wish it did work that way.  I loved reading scripture that way.  When scripture is read out of context with individual verses used as reassurances, promises, and warm fuzzies for our own lives, it feels good!

Until it doesn’t.

You see, I clung to verses like that.  I decided that God owed us one, or a few.

Between our family members, we have had more than a few locust eaten years.  Two back surgeries for Mike, neck surgery and GBS for me, and Ben has had only brief periods of his life, months out of his eleven years, in which he has been both physically and mentally well.  We parented our niece whose mother died of a heroin overdose, and lived out her heartbreak on a daily basis.

It’s easy to see why I would want to believe in a God who restores those years, but that’s not the only verse so commonly used that way.

The LORD your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will.  Zephaniah 3:17

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.  Jeremiah 29:11

Both of which are taken out of scriptures that were used to rebuke and remind the Isrealites, not for a mom desperate for a better future for her family.

And there are dozens more.

I put my hope in those promises that were never meant for my circumstances.  The end result was devastating.  I had myself convinced that when Ben finished his leukemia treatment that we would be rewarded for our faithfulness, not only in those years, but so many before, with restoration.  The devastation from the realization that he will be forever impacted by late effects of chemo and the other illnesses, both physical and mental, which make almost every day in his life an enormous challenge has been monumental.

In retrospect, I believe that my own, and many others, well-meaning use of scripture in this fashion is misguided at best, and could easily be considered sacrilege.  It’s an easy button for comfort.

It has to stop!

In my own experience, what would have been far more effective, kind, and beneficial, would be sitting with us in the pain.  Stepping into the gap and sharing the burden.  Instead of quoting scripture out of context, read the scripture, especially those red letters in the gospels, and apply it to your own life and be the gospel in action.

 

cancer · parenting · special needs parenting

How The Gift Of Perspective Can Make You Grateful For The Crud

I’ve subsisted on NyQuil, DayQuil, Pepto and tiny bowls of Cheerios for a few days now. Every time I finish a bowl of said Cheerios I’m blessed with a quick little race…to the bathroom. I’ve never been a sprinter, but necessity can bring out the best in anyone. 

2 of my 3 kids have been on 2 different antibiotics in the past 2 weeks, and my husband is barely hanging on. 

The cold and flu season has been brutal to us this year. 

This is when I appreciate the gift of perspective. I tried to share it in a blog post here, and then on HuffPost, but the HuffPost commenters thought the piece misguided. 

I’m back from a different angle to give it another shot. It’s about perspective. 

From my current point of view, this sucks. I don’t like being sick, and it’s even worse when the whole family is suffering. We’re missing work and school and racking up doctor bills. 

However 

I realize just how normal this is, and I remember the terror of the cold and flu season when Benwas in leukemia treatment. That night we gave ibuprofen and Tylenol alternating to ride out a fever, he would have been unable to take either and would have gone to the emergency room as soon as his temp hit 101.5 axillary, possibly buying a few nights inpatient. I remember being sick while lying on a cold, hard cot in his room with alarms and night vitals and crummy coffee. 

And I know that with his insufficient immune system, and other medical issues it could happen again at any time, even without the rules for a cancer patient sending us there as soon as a fever hits a certain number. 

So here I sit. Flopped out in my chair, feeling like I was drug through a knothole backward, and being thankful to be home. Being thankful the antibiotics work. Being thankful we aren’t where we used to be, and thinking of the many, many people who are still on that path. 

Nope, we don’t have it so bad. We’ll make it through this, just like we’ve made it through many worse days. 

Perspective is a hard earned gift, and one I almost wish I didn’t have. But I do have it, and it makes me thankful for a fairly normal cold and flu season.