11 Observations About Being Fabulously Female

This summer I’ll be celebrating 44 revolutions of around the sun, and as such, I hope I have learned a thing or two about existing in the female form.  We’re a pretty remarkable bunch, I must say,  I am continually amazed by the women around me and my own self.

  1. It’s fabulous to be female…except when you have to pee outside.
  2. You can bleed for a week straight (or longer if you’re going through menopause) and not die.
  3. We have a reputation for being catty, but when it comes down to it, we have each other’s backs.
  4. No matter how thin you are, your body will have dimples and rolls.
  5. Fussing about the dimples and rolls won’t help.  (So just get over yourself.)
  6. Women are more likely to cuss than men.  (Perhaps there’s a reason for this, no?)
  7. Boobs are a blessing and a curse, and often both at once.
  8. Speaking of boobs, they’re lopsided, pretty much universally.  (Or is it just me?  Please tell me it isn’t just me!)
  9. We have less physical strength and speed than men, but more flexibility and better senses.  (I personally think there’s some huge advantages here).
  10. Our bodies change enormously throughout the normal lifespan, with more girls having more obvious changes than boys from puberty through old age.  (Fighting it doesn’t help).
  11. Multitasking, we rock at it!  (Speaking of which, I have been interrupted about 58 times during the writing of this post.)

You might notice, these have nothing to do with pregnancy or childbirth.  The capacity to produce children is remarkable, but women are so much more than our capacity to bear children.  I’m sure I haven’t covered them all, what is your favorite or least favorite thing (or anything in between) about being a woman?

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?  

advocacy · parenting · special needs parenting

Something Has Got To Give

Every once in awhile, when scrolling through Facebook, I see something that drops my heart into my stomach. Today, it was an article about a murder-suicide.  The victim was Grant, a young man with CP who was nonverbal and wheelchair bound. The co-victim was his father. A school principal, and special needs advocate. The theory is that the strain of caregiving caused the father to snap. 

I pass no judgement on him.*

The strain of caregiving is colossal.  Love is not enough when days and weeks of being overextended turn into years and decades.  And even more so, the heartbreak of seeing your child suffer.  When Ben is having a bad day the heartbreak of enduring it with him is immense.  Some days it’s easy to sink into the abyss of wondering how long it will last; to blame yourself for the circumstances, and to succumb to the inescapable feeling of your child’s struggle. 

Especially when help is almost impossible to access. 

Caregiver fatigue or burnout is a serious concern for parents of children with disabilities, yet if you Google the term, you find resources from the AARP, ALS, Alzheimer’s and dementia sites, etc.  In other words, caregivers are identified as caring for the elderly, not for their children. 

Furthermore, articles place the impetus for resolution for caregiver stress square on the head of the caregiver herself.  Yep, not only do parents have few resources for respite and help, but when we’re overextended in caring for our beloved children, we have to rescue our own selves, as if we wouldn’t have done that in the first place if there were reasonably accessible ways to do so. Getting respite for a child with complex medical, developmental or behavioral needs is outrageously complicated, and if you happen to be above a very low income threshold (just above poverty level), there’s zero help whatsoever in getting it.  And as for hiring a “mother’s helper”, I’m pretty sure no mom on the planet wants their precious tween to be hanging out here when Ben smashes a plate, breaks my glasses or damages my wedding ring (all of which have occurred within the past 24 hours).  

Let’s be realistic here!  Parents of complex kiddos, even those who have decent support systems, are barely keeping afloat, and some just plain aren’t. We’re falling between the cracks because there aren’t that many of us and because we’re too damned busy caring for our children to get the help we need. 

The point of all this?  As a full time caregiver, and acquaintance with many others who are in similar shoes, I’m asking you to stand in the gap for us. Call your state and national politicians, and ask them to make access to respite and wraparound services easier for parents of children with serious disabilities.  Or, just sign this petition

We have to do better. For the children and the parents. 

*Please know that I don’t think murder-suicide is ever okay, and I certainly never want to see it happen under any circumstances. I’m simply saying that humans can only endure so much before snapping. 

parenting · special needs parenting · Uncategorized

“Should Have Aborted” (said the troll)

While I don’t want to give any undue attention to a troll, a rotten comment on one of my posts seems like an opportunity to examine the notion that we “should have aborted”. 

Abortion was never an option for me. I don’t suppose that surprises any readers. From the moment I knew I was pregnant I delighted in my children, and spent days fascinated by the magic occurring within me and the outside changes to my body. 

I didn’t suspect that my children would be born with a disability, and naively I just decided that I would love them no matter what, and declined any and all testing. 

When Alex was born and we were told he likely had Down syndrome (the testing takes several days to return, but we had accepted the diagnosis before it was confirmed), we were taken aback. I wondered if my husband would still want to bestow his grandfather’s name upon our son (he did), I wondered if our marriage would survive (it did, and I have since learned that parents who have kids with Down syndrome have a lower rate of divorce than average). There were many more questions and doubts both immediately and over the following years. 

Even though sometimes it’s tricky and tiring, I have never, even for the briefest moment, wondered if we should have aborted. 

If we had aborted we would have missed out on the sweetest boofy baby hair and the best smiles ever. 

If we had aborted, we would have missed out on so much joy, laughter, and fun. 

If we had aborted we might have missed out on a more unconditional love than we have ever witnessed elsewhere. 

If we had aborted we would have missed the best hugs ever. 

If we had aborted we would have missed many milestones which were only sweetened by their late arrival. 

If we had aborted we never would have known that Down syndrome would change us so much that we would want another child who has it. 

In the end, I feel compassion for the person who would troll a parent of a child with a disability by saying they should have aborted. I’m thankful we were able to see Alex as a child, a treasured human being who has so much to offer in this world. 

Last, it’s hard to be offended when your heart is full, so you picked on the wrong mama, you troll, but I did report it because I don’t know who you might troll next, and if it’s someone in a rough patch, I hope to spare them the stress. 

Best wishes troll-man, I hope that some day your grinch heart manages to grow. 

parenting · special needs parenting

To My Husband On Father’s Day

That pair of slippers the kids and I are giving you for Father’s Day doesn’t seem adequate. If I was to give you a worthy gift to honor your parenting it would be something like a caribou hunt in the great white north. Since the hunt is currently out of reach, I hope the slippers suffice; for now anyway. 

When I consider what you do, day in and day out, I don’t know how I could ever honor you enough, but maybe just listing what you do in a day would be a good start.  

  • You get up with Ben during the night because he goes back to bed better for you. 
  • You give Ben his meds because he takes them better for you. 
  • You start Ben’s daily bowel flush because he complies better for you. (Is anyone noticing a trend here?)
  • You catheterize Ben because he prefers you to do it. 
  • You take the boys outside with you while you do odd jobs around the house. 
  • You notice when laundry or other cleaning gets backed up and take the time to do it. 
  • You maintain the house, constantly making improvements and adaptations for the boys. 
  • You make sure I have time to take care of myself and exercise. 
  • You take Hannah on a father/daughter fishing trip every year. 
  • You maintain our vehicles. 
  • You pinch hit for any of the tasks I normally handle including doctor appointments, school dealings, and driving the kids wherever they need to go. 
  • You show me daily how much you love me, and say it too. 
  • Oh, yeah, you work full-time too. 

There’s more, so much more that I actually take for granted because you just do it. People often tell me that they don’t know how I do it. The truth is that it’s a team effort, it’s us managing this complex life, not me. 

Today I want you to know how much I value you. I want to thank you for making sure we’re equally yoked because the weight is lighter for both of us when we share it. 

parenting · special needs parenting

Screens, Summer and Sanity

Screens are the bane of my existence, yet a necessary evil.  I see people giving their kids “80’s summer’s” and turn every shade of green with envy.  It’s not going to happen here.  We do screens here.  I get grief for it.  I feel guilty about it, but we do them.  More than we should.

The iPads started as learning tools.  What a great resource with apps we could use to facilitate skills for our kids.  Yes we do use them that way, but for the most part, they’re the only way I can get anything done, and actually get a few minutes here and there to check out of parenting.

If you’re rolling your eyes at me, please listen.

My boys need constant supervision.  Alex has mild to moderate cognitive impairment, which means he can read, do math, etc., but it doesn’t tell the whole story.  Today he walked out of the house.  I heard the door shut and followed him.  He was leaving for Disney World.  He loves all things Disney, and wanted to go to work at the park as a cast member in one of the parades.  Had I not been on my toes, I’m not sure how far he would have gone.  Less than a month ago he snuck out to walk to school while I was sleeping.  He made it almost a mile down a road with a  55 mph speed limit.  Thankfully I found him in one piece, but let me be clear, I need to watch him like I would a preschooler.  It’s not hard to parent just Alex without the screens.  In fact, when he’s home and Ben is in school we stay pretty busy together.  He loves to do chores and help out in every possible way, as well as going and doing things.

Then there’s Ben.  In a self-contained special education classroom with 4 staff members per 10-12 kids, Ben has to have a staff member within arms reach at all times in order not to get hurt or hurt someone else.  It’s hard to explain to people who don’t know, but he has multiple mental health diagnoses, and has explosive behavior, frequent meltdowns, and needs constant, undivided attention.  Except when he has his iPad.  During those times I can let my guard down ever so slightly.  When he does play with toys, it’s pretty rare for him to play by himself.  Even in school his teacher reported that one of the things she intentionally worked on was to get him to tolerate doing anything without adult interaction.  We frequently comment to each other that the intensity of parenting Ben is like that of a colicky infant who doesn’t nap.  We’re eleven years into this, and have a lifetime stretching ahead of us.

In my defense, every single day I take both boys out and play with them for as long as they will tolerate in the weather.  We play games, go for walks, play in the water, go to parks, whatever we can to get fresh air and free time. Mike does likewise. But in case it isn’t obvious, I can’t send my kids out to play without parental supervision.  Ever.  At all.  We also play with them in the house, legos, cars, games, you name it, we spend a couple of hours every day playing with our children.

So, what do we do?  We let them use screens when we need a break.  It’s a complicated, love/hate relationship, and honestly, I don’t know what else to do.  What would I have done before iPads?  Good question.  I’m not exaggerating when I say that the ability to sit down and write this is 100% dependent on Ben’s iPad.  And to be realistic, Ben’s survival is a modern marvel.  That 80’s summer?  Ben probably wouldn’t have survived leukemia treatment if he had lived in the 80’s, the statistics for survival even 30 years ago are dire.  So we’ll take our summers, screens, living child and all.

We are aware of the pitfalls of screen use, and we do our best to balance.  And honestly, if you take issue with it, I would love to offer you the opportunity to do better!

marriage · special needs parenting

If I Taught Marriage 101, This Would Be My First Lesson 

Twenty-two years. As of June 10, we’ve been married for over half my life. 

I met Mike when I was 15 and he just turned 18. He let me drive his sports car on my learner’s permit that summer, but I was a bit tricky to nail down. Then he went off to college. Upon his return he asked a friend of mine on a date. I wasn’t about to let that happen, and found out that it was a calculated move to reel me in that worked. 

We started dating when I was 16. We became adults together and got married just a few months after he got his first police job. 

We blew it big time in those early years, but somehow, just before Alex was born we both decided to get our act together, just in time to welcome him into our lives. 

Not too long after that we brought our 13 year old niece home and became parents of a teenager. Then we added Ben. 

It’s been a hell of a ride, but at some point I realized that I needed to let him go.  Since then, I make sure Mike gets to take up every reasonable opportunity to go out hunting or fishing with his friends. 

It sounds ridiculous. With everything we have to manage at home, why would I cut my husband loose like that?  

Because when he’s here, he’s really here. 

He does Ben’s flush and catheterizations every day. He gives Ben his meds and gets the boys outside and sends me out for runs.  I never have to nag him for anything.  Seriously. If I want something I say the word and he makes it happen. 

I accidentally stumbled upon the perfect solution:  When my husband has freedom to do all the things he loves he’s content to be domestic.  That, and he treats me like gold.  

Our day in, day out life is demanding and draining. Neither of us could do it for long without opportunities to replenish ourselves. I learned the value of self care when I didn’t do it, and have become a huge proponent of the practice. Indeed, equally important is spouse care. In taking turns getting breaks, we both maintain balanced, healthy lives in which we can be highly effective spouses and parents together. 

If I taught marriage 101, this would be my first lesson:  love in such a way that the person you love feels free.