Sunday, March 2, 2014

Our Special Needs Journey:Part 10 - Mere Existence

{I've been wrestling with whether to publish this or not - waffling back and forth between oversharing/giving the wrong idea that I am seeking attention/help/sympathy (which opens me up to criticism - ugh) and being real/raw/open/honest about my struggles. I wrote this earlier in the week and am grateful to say my sanity is slowing returning; it was a MUCH better day. Everything is better with enough sleep and chocolate.  

I've concluded that to fully reflect how immensely God is at work in my life I have to reveal the depths of my low moments - so that when I am on the other side I can see how far I have come.  I am confident God has plans to prosper me (and my family) and I trust in His purposes in my pains. Acknowledging how great my depression is now will show how powerfully God can work (and I know He WILL).}

Some days simply existing requires more effort than I am able to put forth.  Today is one of those days (and yesterday, and most likely tomorrow as well). The daunting tasks of getting the kids up, dressed, fed, pills taken, into the car, etc. AND then later off to bed are so absolutely mind-blowingly exhausting I struggle to find any time in between each session.  There should be WAY more hours between wake-up and bed time, and even more between bed-time and waking up!

God, give me the strength to will my body to move: my legs to walk, my eyes to stay open... (There are not enough energy drinks on the planet, am I right?) Please grant me the ability to be exceptionally patient with my children and model for them healthy ways to handle frustration, stress, disappointments, and difficulties.  I'm going to validate bursting into tears by saying that sometime that IS a coping skill.  Some days call for crying, and that is OKAY. Right?! (To read about the days that inspired the need to write this, click here.)

Before you accuse me of thriving off drama - don't. I am merely living the life given to me to the best of my ability and by God's grace.  I am blessed to have the opportunity to rely on God daily. If things were simple I might get a bit independent and prideful, erroneously thinking I can live each day on my own, without leaning on God. So don't mistake my human need to communicate - to vent- as complaining. Or do. Maybe I am complaining. I'm losing the ability to care anymore...

I simply need to pause. To think, breathe, and to talk.  I am a talker, an open book, and oh, how I love to write about it all. It helps. This, right here, is my coping mechanism.  My way of handling stress (which is healthier than so many other options).  In the process, I'd like to connect with others who understand, or possibly even bless another person, someday down the road, who is on this journey too. They can see me once I'm on the other side of it all, and know that God is always in control. It is in our brokenness that His light shines through. Truthfully, this is what helps me GET to the other side.

I'm going to say something here that is likely going to win me some major haters.  My job as a mom is probably harder than yours. Wait, hear me out here, and let me also say - I admire you! You're doing a great job (well, at least the moms I know).  You deserve a massage, bubble bath, chocolate, AND new shoes for all you take on. Your struggles are very real and you are justified in feeling exhausted/frustrated/annoyed/overjoyed/etc.

Parenting a special needs child is HARD WORK.  Parenting multiple special needs children is really, really hard work.  That is not to say parenting in general is not a darn tough job. It totally is. Being a working parent, stay at home parent, a SAHM with a hubby who travels, a parent to young kids, a parent to teenagers, a foster parent, a rich parent, a poor parent, a parent of one child or ten children, and most especially being a single parent all come with their own sets of challenges. As is desiring to be a parent but unable to have children. And any other situation I haven't listed. (Oh, and my single mom friend with a preteen special needs child deserves MAD PROPS.)

Parenting should not be a contest (especially not a "poor me" one!), it is a tough enough job without comparing ourselves, we most certainly need to be supporting each other, and we should try not to focus on the "downs" of it too much. So stay with me a little longer.

I tell myself my family needs require more effort to manage than the average family.  I mean, I'll never really know because I am only able to live my own life, of course.  But I assume. I assume because I MUST. I feel like a failure MOST days. Every meltdown, tantrum, struggle, parenting fail. Every time I'm late or a child is given another negative medical diagnosis.  If it takes me such great effort to simply exist, such extreme mental, physical, and spiritual energy to do what I must each day, and such exceptional reliance on the Lord to get me through it all then my job MUST be harder, right?  If not, what is wrong with me that I am so absolutely overwhelmed?!

So you see, it is about ME, not you. I tell myself that my challenges are big and my joys and triumphs are even bigger.  This is how I will myself to make it through each day. It is how I justify crying myself to sleep many nights.

Do I really have a tougher job than you? Perhaps on some days, but certainly not on all days. We all have seasons. Are there worse things to experience than what our family does? Absolutely. Are we blessed beyond compare and more than we deserve? You bet! Am I praying for those I know going through difficult circumstances? Yes, daily. Will I listen to you empathetically when you need a friend? Most definitely - I'd love to! In fact, I'd appreciate being confided in.

I have a great support system of really wonderful people who care about my family. That doesn't keep me from feeling lonely many days.  I don't fit in the box. Whatever conversation you are having - about home decorating or your kid's sports practices or standardized testing- I cannot relate. I may never be able to.  That is not my world, no matter how desperately I want to be "normal" on some days.  I mean, I may experience these things, but they are not what fills my time and thoughts.

My concerns are whether my children will have the mental/social/intellectual ability to attend college, maintain a good job, interact appropriately as an adult, sustain friendships, date, marry, have children, live independently, and essentially function in society. I need to manage an overwhelming volume of doctor and therapy appointments. I'm concerned with treating health problems and overcoming barriers to learning and caring for themselves.  Oh, and money, but I doubt I'm alone in that.

The parenting tactics that work for typical children are generally not appropriate for mine. If I'm being honest here, I'm jealous of you.  I am so envious of your toilet training troubles with your toddler.  My five year old has never pooped in the toilet, leaving me to clean up a lot of icky underwear messes, and my nine year old still soaks through her Underjam every night. I wash sheets daily. My mommy-guilt is on overdrive.

Parents of special needs children are not special people. We're absolutely ordinary people given children that have different struggles/priorities/needs than the majority of other children. (Okay, I cannot speak for everyone - but this is true of myself.)  I'm lonely because so very few people in my life can actually relate to what my days are like and commiserate and empathize and encourage and advise. My assumption is people dread my phone calls because they come with all the drama I am unleashing on them.

The amount of energy and patience required each day is exceptional.  Dean refuses to leave the house, so I take it a step at a time, "Do you want to wear boots or tennis shoes? Great, now the blue coat or the brown one?" This continues in each task: "Do you want to walk, skip, or hop to the car?" "Should mommy buckle you up or Julia?"

When there is a meltdown approaching I take a deep breath and smile.  "Taylor, you did an amazing job cleaning off your desk but I really need your help putting your toys away!" Enthusiasm, cheer, big hugs, praise and cheering her on - if I nag her and threaten to take away those toys she will shut down.  Expect an epic tantrum, involving the most theatrical whining & sobbing (and the Oscar goes to...) complete with falling to the floor, kicking me, biting, perhaps some hitting and spitting. Bringing her back from that is pretty much impossible. Have I had to take away her toys to follow through on pre-established consequences? Of course, but it is preferable to avoid that result altogether because my ability-to-be-a-good-mom "bucket" is almost empty today.

By the end of the day I've got no patience left (God gives me just enough to survive each day). So don't be offended if I don't agree that taking care of a couple of dogs is "just as hard as having kids" or if "spending the day trying to get a rental car is the most tiring and busiest day ever." I lack the emotional ability to care about being tactful, polite, or politically correct.

If I happen to insult you - please accept my apology.  I will probably do it again and again, because I am selfish - I am human. If you believe YOU have the hardest life ever, I believe you. I validate you. I care about you. But I don't have the emotional ability to support you right now. Don't take it personal.

Here's my point: if you know a parent of a special needs kid, would you please reach out to them and offer whatever support you can? For me, a willing ear means the whole world to me. Venting/crying/sharing triumph in little victories (Julia is wearing socks today!!!) is the difference between sanity - and the ability to merely exist - and insanity (giving up and crawling back in bed).

The past 7 months or so have been especially burdensome and overwhelming. I had known Dean had autism for some time now, but had not emotionally prepared myself to learn to what extent he would need help, or for all the additional medical needs of the kids (such as his seizures, Julia's growth issues, the increasing severity of Taylor's asthma, the plethora of food allergies we are discovering Bruce has, and all of their tummy troubles).

Add to this losing our home & having our bank account drained, Dan developing arthritis due to his manual labor job & 80 hour work weeks, my chronic pain from IBS and endometriosis, a house in chaos from 9 months of a very difficult pregnancy, homeschooling 3 autistic children, and my multiple volunteer commitments (which I love, I'm just stating they take time). Oh, and I keep getting fatter and fatter with zero ability to care for myself or even sleep.

While I have the ability to realize my multitude of undeserved blessings, I am also in a state of overwhelm and deep depression.  (Yes, I DO know I'm blessed, having depression does not negate the good in my life or imply that I am unaware of those good things.) I believe there is a misconception that Christians should not have depression - that all we need do is read our Bibles, pray, and count our blessings.  I do all these things but find I cannot function without medication. There is no shame in that. Saying that out loud, to the entire internet world, is freeing. I feel peace is admitting that I get out of bed each day by God's grace alone. Let's break the silence and change the stigma.

To those of you who know me as a generally cheerful, happy person (albeit appearing a bit stressed out, frazzled, and frumpy) - that's not an act. I'm not covering up my depression or trying to hide it. I am able to see the joy in my life enough to delight in it! I have no desire to be sad all the time, so I turn it off wherever possible.  To those who know me as overwhelmed and tearful - you are so special to me I trusted you with my vulnerability. Thank You.

So, thank you - for noticing me, letting me cry a bit on your shoulder (via this blog), praying for us, and humoring me by pretending you actually read this entire post and allowing me to be selfish on the days I need it (which are a lot of days lately).