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

February 9 – I was right (I hate when I’m right)

I need to read this book

I got a call last night from Ana’s dad that she took her cast off. Apparently, her step-mom was working really hard to not get upset when Ana did her normal, awful things. So, Ana upped the ante. She had climbed into Drew’s bed (not allowed at dad’s house) and step-mom, rather than yelling at her, said, “Go ahead, Ana. I don’t care. If you want to be in Drew’s bed, do it,” and walked away. Next thing she knew, Ana threw her cast at her.

Score one for Ana. THAT definitely got a reaction!

As usual, this is causing discontent between me and my husband. His philosophy with Ana’s dad is when they have her, anything she does is their problem, not ours. I can’t do that. She is still my daughter and I am still the expert on her. So, I called her surgeon and arranged for dad and Ana to go to his local hospital and get a temporary cast put on until she comes home today. My husband says I did too much. But, seriously, what was I supposed to do? Ana’s dad didn’t think it was a big deal at all and even asked if she really needed the cast.

So, today is damage control including a trip to the ER to get another cast put on.

And, as usual, my husband and I are at a stalemate. I truly envy (even though I know envy is a sin and am working on that) couples who have ‘normal’ kids and never even have to deal with these types of issues. How lovely life must be for them.

January 20 – Yet another ER visit

I’ve been sort of numb for the past couple of days with Ana gone. She is doing ‘okay’ in the hospital but they still don’t have any type of plan for her which is frustrating me because she’s not there on vacation.

Yesterday evening I received a call saying they thought her arm was bleeding through her cast and wanted to know what they should do. Of course I advised them to call her surgeon. An hour later I got a call saying she was en route to the emergency room. I met them there.

Many hours later….they needed to open her cast to look around and see where the bleeding was coming from then fix it.

I asked for her to be given at least a valium.

Many hours later…this hospital (with the hand specialists) has a policy against giving sedatives to pediatric patients.

I promptly told the surgeons they were not going to work on her unless she was given something to help her stay calm.

Many hours later…we were transferred to a children’s hospital where she could receive sedation. I was totally floored that the hand surgeon came to the children’s hospital to do the procedure. Doctors, as a general rule, do not follow patients. Thank you, God!

So, at midnight she was sedated and they began their explorations. Come to find out the pin the surgeon placed in her wrist popped through her skin (it’s okay to cringe just thinking about this). There is nothing anyone can do but keep the arm super padded.

Unfortunately, she had a bad reaction to the sedative and vomited for the next two hours.

I got home this morning as my husband was waking up to get ready for work.

Rather than always focus on the negative I try to actively inventory all the good things that happen in situations like these as I go. Here is my list:

1) While in the waiting room Ana got up from her seat to come sit beside me and laid her head on my lap.
2) Ana was able to tell me AND show me that she was scared rather than just be angry.
3) She cried when she was scared instead of getting angry.
4) She communicated with the doctors and other medical staff.
5) There were no melt downs.

For now, I will take this as a victory in overcoming RAD.

January 10 – When Ana gets mad

The realization of Ana's Anger (that is the fancy artwork name)

The realization of Ana’s Anger (that is the fancy artwork name)

It didn’t take long for Ana to get over the anesthesia and the reality of having a giant cast on her one good arm to set in. Since she has two default emotions – happy and angry – it took about two seconds more for Ana to get really mad about the arm.

What exactly is she mad about? Many things. First of all, her arm hurts. Understandable. Second, she has to wear a cast. Annoying and understandable. Thirdly, she cannot stem. Not such a bad thing. Fourthly, she has lost her independence. Not such a good thing. Fifthly through Ninety-Ninthly are a bunch of irrational and illogical things that she is tying into this surgery to blame for being angry, like not eating at Olive Garden, and her sister’s favorite TV show annoying her.

Our days and nights are going something like this: Ana takes pain meds. Ana chills out and/or falls asleep. Pain meds wear off. Ana gets mad and her cast becomes a weapon and she is just plain mean. Ana takes pain meds….(repeat ad nauseam). The picture above is not the latest piece of contemporary photography but rather one of many new dent/holes in our wall from where she punched with her cast-club.  For those lovely additions to our decor she earned her arm being wrapped to her body with ace bandage.

Only five weeks and four days to go till the cast comes off. God help us all!

January 7 – Surgery

Ana 1 day post surgery

Ana 1 day post surgery

Today was Ana’s surgery. The doctor straightened her wrist. Part of her genetic condition is that she was born with both hands turned in (like club foot). She had two surgeries when she was two and now they are repeating those surgeries because the bones in her arm are growing at different rates causing the hand to turn back in.

Surgery is hard for an adult. Surgery is really hard for a kid. Surgery is really REALLY hard for a kid with RAD who has spent way too much time in hospitals in her short life.

The day began well. Yesterday was her pre-op appointment so we were prepared mentally for the surgery. This morning she woke up, no problem, went to the hospital, no problem and even sat in the waiting room with no problems.

When they took us back to pre-op the anxiety levels sky-rocketed. She hates IVs, primarily because they have to be in her ankle or foot which hurts more. I had promised her she would be asleep before they put the IV in, but it took a lot of convincing on my part to get the medical team on board with that plan.

Finally, it was time to go. They gave her sleepy juice, a.k.a. Versed, and nitrous gas to get her out before taking her back. Ahhh….success.

The surgery went fine. The anesthesiologist accused me of being too calm (“You are the calmest parent back here. Why?”). The surgeon was quick which is the hope when going to one of the best hand surgeons in the country.

Things began going south after surgery. First, they waited till Ana woke up to come and get me. Bad idea, guys. That got her in fight or flight mode and we all know which way Ana goes. Add her being hooked up to an IV, oxygen and her arm in a cast and fight took over. She was being held down when I got back to her. That’s when I took over.

Kids notoriously act awful after anesthesia and Ana is no exception. It’s best to picture a fifty pound angry drunk. And I don’t mean your garden variety angry drunk either. I mean the TV show COPS worthy, kicking out the cruiser back window, cursing up a storm, spitting, ten second teaser clip angry drunk.

They wheeled us back to recovering and the nursing staff was not prepared for all that Ana had to offer. To help with pain management they gave her a nerve blocker at the end of surgery that made her arm numb for a couple of hours. That’s a great plan for pain, but awful when Ana is angry. Her cast made a great club.

She started out by kicking her nurse in the face. Then she hit me in the face with the cast. Then she bit her own finger as hard as possible (I really was afraid she broke the finger but they checked and she didn’t – thank you nerve blocker) which led to the junior doctors overreacting and casting her hand. Ana stems by flicking her fingers in front of her eyes and the new cast improvements now make that impossible.

I asked for a sedative so I could get Ana home and was told that hand doctors don’t do sedatives. I was told to call her psychiatrist. While wrestling/restraining Ana I waited on hold for Ana’s psychiatrist and then had to explain the situation to every single person I spoke to at the psychiatrist’s office while Ana was screaming her head off.

By this point her sweet recovery nurse was crying.

When I finally got a call back from her psychiatrist it was bad news. Her pscyh did not have script privileges at the hospital Ana was at. She said the surgeon should write the script. I explained they said they weren’t psychiatrists and didn’t write psych scripts. Her response was a tirade about how a doctor is a doctor and should take care of their patients regardless of their particular specialty. Noble rant, but useless. I said thank you and went back to restraining Ana.

Finally, I got her to calm down enough to wrap her casted arm to her body so she couldn’t use it as a weapon. I had to call my husband to come get her since I didn’t feel safe taking her home in the car with the baby (who was with us and being perfect, I might add).

Their parting advice was to have psych meds lined up before her next surgery which is in six weeks. I felt like banging my head against the wall or wringing their necks.