Dear mom glaring at me in the ride line at the themepark:

Hi. You don’t know me and I don’t know you, but you are glaring at me and my children right now and seeing as we’re all confined to an itty-bitty tiny space in the ride line, I think I should say a few words to you (on my blog at least).

First of all, I can see that you are irked because we are in the ‘disability line’ of the ride that your angel has been standing in for the last 40 minutes. I get it. You’re tired. Your kid is tired. It’s hot. My kids look totally normal, so why do we get to cut to the front of the line?

The fact that my ‘special kid’ looks normal is a tribute to this disability line. Believe me, you would not want to be standing near us if we had to wait 45 minutes to ride this one minute ride! My daughter (one of my three with disabilities) has a genetic disorder very similar to autism and at three years old cannot stand in line. It may look like she is just a bratty kid throwing a fit when we attempt to do something like stand in a line, but in fact it is a sensory meltdown you would be guaranteed to observe. That meltdown would take us about one hour to get through. If we got through it at all.

Probably, she would go into meltdown mode and not be able to shake it because this theme park has so much sensory stimulation.

That is why we are in the disability line.

For her, at least.

So, why do her siblings get to tag along? Why can’t they stand in the regular line like all the other kids?

My six year old (typical) daughter summed it up perfectly. She calls their disability card the “Special Card” because, as she says, “We’re special and get to jump to the front of the line because of Ana and Grace!”

These siblings spend every day of their life doing damage control for their disabled sisters, fielding question and question about their sisters, standing in humiliation while their sisters meltdown or destroy something out in public, and are ostracized by other children at public playgrounds or museums or events because their sisters are different. They DESERVE a day to be special. Not just a day to be special but a day to enjoy an amusement park with sisters who are NOT melting down, destroying property, or otherwise causing a big scene.

So that, glaring lady, is precisely why we are over in the short line and your children are over in the long line. From the hot and humid place you are standing, it may not be fair even with my explanation, but consider this as my closing thought. You get to leave this park tonight with your typical kid and go back to your life with a typical kid where you never consider what your child can destroy when you walk in a store or someone’s house, where you don’t have to do your own safety-check of playgrounds and parks to make sure your kid won’t die in a very creative fashion, where you don’t go to ten therapy appointments a week and at least one official or unofficial school meeting a week, where you don’t have to search far and wide to find a qualified sitter to watch your children so you and your husband can go out to dinner once a year.

In fact, you probably never think about the things that dominate my life. Savor that. When you see my children rather than glare at me for being in the disability line, thank God for having kids that don’t qualify.

Harder than Hard…

This is not my post. I am posting a link to the original here. However, Heidi Weimer put into words what I have felt too many times to count. I have a few friends who are really struggling with their kids, currently, and their struggles reminded me of this post. I hope it inspires you, encourages you, or just lets you know you are not alone. Enjoy!

She was all hooked up. Ready for the Pitocin to start dripping. She winced at the thought of induced labor. And then, in a pathetic attempt to assuage her concerns, he let those words roll off his tongue, “All labor is the same. Labor is labor.” I wanted to kick my friend’s obstetrician. Where it counts. Right then and there in the matchbox-sized labor and delivery room. To teach him a thing or two about pain. Because having had giganto babies au naturel (sans Pitocin), I knew he was full of crap, and his patronizing attempt at comfort did nothing to acknowledge the real pain and ridiculously hard work my friend was about to endure as she brought forth her new baby boy right before my very eyes. And because there was nothing I could do to remove her from the pain, I was there for solidarity. To be with her in it and through it. Because that’s all she needed and that’s all I could offer.

The truth is, life is hard. And there is pain. And none of us is exempt from having experienced it or living through it again in the future. But no, Dr. Stupid Dumbhead, M.D., all labor is not justlabor, all pain is not the same, and all things hard are not comparable. Sure, a papercut from opening your mail too fast hurts like h-e-double-hockeysticks and you will want to cry it out like a Babywise baby and if that’s the worst pain you ever felt in your insulated life you might think you know real pain, but I’ll take a hundred papercuts sliced slowly across the end of every single one of my fingertips before I ever pass another kidney stone or have the bones in my face chiseled by a surgeon.

And if you’re a dear fellow sojourner who understands pain and hard times and suffering beyond the “life is hard” cliché, I know you get this. You get the feeling of wanting to pull a Mike Tyson on the next person who pats you on the shoulder and tells you, “Life is hard, but God is good.” Because really? No sheetola. Life is hard. Welcome to Planet Freaking Earth. And yes, God is good. (Amen and amen.) But sometimes you JUST WANT A BREAK FROM HARD. And no cliché, no platitude, no pat on the back, no sweet somethings from someone who cares will give you that respite for which you desperately long. Because when it comes down to it, you are in these circumstances beyond your control and wishes, and only the sovereignty of our God can take you through it and (hopefully, Dear Jesus, HOPEFULLY) bring you out of it before you meet your Savior face to face.

If this kind of living surviving day after day after downright hard day resonates with you, solidarity—not solutions—is my sole aim today. Because it doesn’t matter what your can’t-take-it-anymore pain looks like on the outside; you know what it feels like. You’re lonely. Tired. Drained. Ready for a new day. A new season. A whole new year. A break. And you realize it may never come on this side of eternity. And that realization makes it all the hell of a lot harder.

You’re a grandmother in your 70s and you’re raising your grandkids after their dad vacated and their mom chose drugs over them, so instead of road-tripping the U.S. of A. with your Lifelong Sweetheart in your paid-for R.V., you are dealing with the throes of teenage rebellion and forking out hundreds and hundreds for counseling. You don’t get to do what other seniors are doing, and you need some respite. And every day is beyond hard. 
 
You’re a mom with a special needs child and though you love him with every bit of every atom in every single cell in your entire being and can’t imagine your life without him, you’re absolutely beyond wiped out, because it’s just so damn hard to tend to him every single second of every single day to no end and none of your friends understands. And every day is beyond hard.
 
You are fifty years old and have your own family to raise, but you spend every minute of every day tending to your live-in, elderly, ailing father who can’t remember who you are and, though you love him with all of your middle-aged heart, you are exhausted and drained and have nothing left to give. And every day is beyond hard.
 
You adopted an older child who lived a nightmarish life of trauma and heartache before they were yours and they are unleashing it on you like a relentless tsunami and you wake up every single day wishing that you didn’t have to face another day of hell but knowing that you have no choice and you walk on shattered eggshells all day long because it’s just not worth another three-hour rage fest over the most minor of things and you cry alone in bed every morning because you fear what the day will bring. And every day is beyond hard.
 
Your child suffers from the lifelong, permanent effects of FASD because their birth mom couldn’t put the bottle down and so you sit night after night after night at your child’s side at the kitchen table just wanting them to sound out one freaking word from their homework and they can’t even sit still long enough to make it through the first sound and they’re only in the second grade and you can’t imagine every night for the next ten years JUST LIKE THIS and you just want a break from the difficult. And though some accuse you of having a pity party, you don’t feel sorry for yourself at all because this is your life after all and you embrace it but it’s just so freaking hard to live it. And every day is beyond hard.
 
Your house is in foreclosure and your husband is working three jobs just to put food on the table but ends aren’t being met anyway and the bills keep coming and the collectors keep calling and you can’t afford to do what any of your friends are doing and you bend over backwards to find ways to take care of your family’s basic needs but it’s not making a dent and it’s scary and lonely and taking an emotional and mental toll on you and your marriage and your kids but this is just your way of life and though God keeps giving you the manna you hunger for the ribeye that you see everyone else feasting on and the smallest financial inconveniences send you over the cliff because nothing is easy or simple when you don’t have money. And every day is beyond hard.
 
Your husband unexpectedly passed away one year ago and with him went all of the oxygen in your lungs and in your home and you are drowning in your own grief but you have to act strong enough to help your kids not get overtaken by their own painful loss and you keep thinking it will get better or at least easier and it hasn’t and you keep putting one foot in front of the other but it doesn’t change reality. And though (most of) your friends try to be supportive very few of them truly understand and some might even judge. They want you to pull yourself up out of the trench of hard times and join their festivities of the normal. But you can’t. Because your life is different. And every day is beyond hard.
 
Your child is sick so often you don’t even keep track anymore and you spend day after day and week after week in and out of the hospital and while you have the support of friends and family and money is no issue it’s just so difficult to keep it up but you don’t have a choice because it’s your kid and you would die for them but you can barely breathe yourself most days. And your head is barely above the surface of the raging sea and the salty taste never leaves your mouth and you gag with every breath. And it’s all you can do to tread water and not go under…at least not for too long that you can’t come back up. And every day is beyond hard.

Hard beyond hard beyond hard. Suffocatingly hard. Perpetual hyperventilation. And what makes it feel impossibly harder is that you can absolutely remember a time of life when it wasn’t this way. When faith wasn’t a fight and joy did not elude you and every day wasn’t a struggle.

And so you do what all humans do with our finite brains and fragile hearts to reconcile what doesn’t make sense in our stories. We divide our lives into seasons, chapters, segments of time—no matter how short or long. We remember those poignant moments that define each phase. We speak in metaphor of “walking in the wilderness” and “waiting for the Promised Land.” And we know exactly how many days and weeks and months and years our wilderness has lasted. And it’s been a long time even if it hasn’t been. And we yearn for struggles to cease and the blessings to abound. We scream when the Heavens seem silent and beg for God to rain down. We thank Him for the manna yet want to leave the desert after all. We cry out. Because it’s hard. Hard beyond hard. And we long for a respite. A season—no, a day even—that isn’t downright hard. That doesn’t greet us with pain and hardship and suffering and loneliness. And there are no solutions or Dave Ramsey Steps to Peace because this is your life for as long as you can foresee it and if there were a way out of it you would have long ago found it. And all you desire from others is solidarity or at least a semblance of it.

You are grateful beyond all thankfulness for the micro mercies and force yourself to focus on them daily—The meal spontaneously dropped off by a friend who was thinking about you—The check you got in the mail to help cover Christmas presents for your kids—The car someone loaned you so you could get to an appointment on time—The lady who gives your kids free haircuts—The nurse who was extra friendly to your child and got you into your appointment right away—The Facebook post on your wall to encourage you. But you long for the Macro Mercy of El Roi—The God Who Sees—whom you beg to step in and with authority scream ENOUGH! and usher you into your own Promised Land right here on Earth.

And truly you “rejoice in your sufferings” and all that it produces like character and hope and endurance. You “consider it pure joy” because your trials have grown your faith like nothing else could. And you know without doubt—though it’s tested daily—that the “glory that will be revealed in us” one day will ultimately make it all worthwhile. And you even feel and believe that “when you pass through the waters,” He is with you. You have followed God long enough and hard enough to know that “He has plans to prosper you and not to harm you” and will give you (eventually) that hope and that future. And friends close and strangers afar laud you for your unwavering faith and unshakeable strength and while you truthfully appreciate their affirmation you just want your present reality to give you a break from having to have that kind of faith and strength at all.

So, Dear Reader, if every day of your present life is hard beyond hard and you weep without words in your thoughts because you are living this present darkness right now, lift up your head and reach out your hand because I stand here with you as a fellow sojourner in the Wilderness of Suffering. And I will stand with you in your pain and you with me in mine and together we will offer one another

Mercy

Love

Grace

Comfort

Compassion

Prayer

SOLIDARITY

Because when every day of your present life is hard beyond hard beyond hard, solidarity is enough to help you make it—through another hard day…

so we can remind each other that our Savior who died for us and knows our sufferings is linking arms with us. And that Jesus loves me. This I know. Especially in the hard beyond hard. 

Who shall separate us from the love of Christ?

Shall trouble or hardship or persecution or famine or nakedness or danger or sword?

…No, in all these things we are more than conquerors through him who loved us.

For I am convinced that neither death nor life,

neither angels nor demons,

neither the present nor the future,

nor any powers,

neither height nor depth,

nor anything else in all creation,

will be able to separate us from the love of God that is in Christ Jesus our Lord.

-Romans 8:35-38

“I don’t know how you do it”

Ana's baptim

Ana’s baptism

The phrase I hear most often from people is also the phrase that annoys me the most: “I don’t know how you do it.” I’m not sure if that is a compliment, a sincere statement, or a judgment.  No matter what it is I usually just laugh and say something like, “I just do,” or other such nonsense. If someone catches me on a particularly bad day I might say to them, “What is my other option?” That one always stops them dead in their tracks. But I sincerely mean it. Seriously, what else can I do with my daughter?

I suppose I could put her on a plane headed back to Russia like that one family did. Or, I could treat her like a dog and keep her medicated and caged. I could believe some of the experts who claim she is severely mentally challenged and can’t control or understand her behavior. Then I could just slap a helmet on her head and leave her to her self-injuring without worry.

But I’m not going to do any of those. Ana is my daughter and no longer Russia’s problem. She is a human being who is struggling with one of the worst, most disabling conditions put upon a person through no fault of her own (RAD) – not an animal. She is not broken or less of a child. Her cognitive skills are normal which is half the problem; she completely understands what is going on around her. She is simply a little girl, lost in her own body and this very scary world, and I’m going to die trying to be her anchor.

I’d like to think that anyone finding themselves in this situation would do the same things as I have, and I used to say that to people in response to the Annoying Phrase. But I have found that not to be true, unfortunately. Too many parents quit on their kids when things get tough.  Of all my strengths, I value my tenacity the most. Quitter, I’ll never be!

Lastly, or firstly, I wouldn’t be able to do any of this without my faith in God. I know a lot of special needs parents get annoyed with well-meaning friends and family who tell them that God only gives us what we can handle, but I don’t. I know that is true – absolutely true! Ana is proof that God used all my strengths, weaknesses and past experiences to make me the best parent for her. Yes, God gave me a gianormous job to do, but I feel honored that he has so much faith in my ability to do it (with his help, of course). Without my faith that God sees the big picture and it’s not my job to understand where I fit in it, I would have given up a long time ago.  It’s the same faith that allows me to praise Him and find joy even on the hardest of days with Ana.

So, even though I don’t give this long answer to people when they tell me they don’t know how I do it, I think it, and after I get passed the urge to slap them, I use the moment as an affirmation that I am serving God, good day in and bad day out, helping Ana overcome her debilitating first 20 months.