Lies Exposed! 
December 19, 2016, 9:59 pm
Filed under: Family Life

I never know how to answer people when they say things like…

“You are so brave.”


“I could never adopt a terminally ill child.”

Or THE most awkward and dreaded…

“You are such an angel. You are going straight to heaven!”

It really is not that I don’t appreciate the sentiment. The main problem though is that none of these things are true. Yep, that’s right, big ugly lies, all of those statements, along with every other thought or word that makes me any different than anybody else. I am indeed NOT an angel, I cuss sometimes. I’m cynical and suspicious and grouchy and lazy and judgemental and, and, and, the list goes on.

I am not brave either. Our children were placed in our path because God knew we were too chicken to seek them out. We fell in love with our kids, not their diagnosis or prognosis, just them as children. Just like you did with yours. 

And finally, if you were meant to, you very well could adopt a terminally ill child (or three).  

In order to help illustrate why these statements are inherently false, about bravery and saintly-ness, I will provide an example…. When someone asks how many children I have, two things happen. 

1. I struggle with telling them the actual number, meaning do we include the ones that have died or not? Do I ruin this poor unsuspecting woman’s day?  

2. Either way, when I do, they will be suprised, as am I, that all those kids belong to me. When I name off my kids, all in one breath, especially with ages, I am just as bewildered as the poor soul that asked in the first place. 

You see, I am just as shocked as the unsuspecting woman in Wal-Mart that I have all these kids EVERYWHERE, let alone kids with major, scary and life-limiting diagnosis. At least when I do name them and their ages, I don’t feel so bad about being somewhat (a lot) overwhelmed sometimes (often). When we had to list all of the medical equipment in our house to the electrician, I looked at the list and got a little woozy. When asked about our weekend or evening plans by a typical mom waiting to pick up their child from school, what do I say? I have no idea. Do I casually tell her that Sollie had 7 seizures today, and well, if he does not get better at breathing by himself then my plans include resuscitation? Um, the answer is NO. I reply with a simple statement about just trying to relax (which is also kindof a lie).  

We don’t really relax. We have alarms going off all the time, day and night. These alarms have no snooze button. Many times when multiple kids are having multiple alarms in the dark of night, it is hard to distinguish where they are coming from, so we stumble around checking everybody for everything. A few of our kids have the potential to literally be on the brink of death at any given time, so we re-check, double-check and check again. Gees who knew this OCD part of my personality would be so very useful. 

If left to my own personality traits, I would have never ever chosen this life. I am sort of lazy, I loathe and detest mornings, I love to sleep and I am not very great at finishing things. Somehow though, God took the very worst of myself and gave me children that need me to be a MASTER of the opposite of these things. Through the very ordinary grace of everyday, I get up at night and give that breathing treatment, I get up at a ridiculous time in the morning after 35-ish (it seems) minutes of sleep to get our stable kids to school. I do not smile, but I am even somewhat nice, after coffee. I do not give up on my children. I am always searching for ways to help them live better, if even for a short time. My life requires a work ethic and stick-to-it-iveness that I naturally do not possess. Do not even think for one second that I have honed these skills because I am a grown up adult. I utterly revert completely to my teenage level of sloth and sarcasm if given the chance. 
If you are of a tender heart, skip the next few paragraphs or so because I am going to maybe upset you. However, if you are still stuck on the idea that it takes a saint to live sacrificially, then please read on. I am writing this post to get rid of all that non-sense, and this should take care of it.

I have a couple of “mottos” if you would like to call them that. They are things that I seem to say to myself, or maybe a very select few of my friends when things get really bad. A couple examples are as follows; 

“It can always get worse.” 

It is as close to a positive attitude that I can muster. I am a realist. I am not negative, I just am very real about what could happen, because it has, and does, often.

 And next… prepare yourselves.  

“Hope is one persistent b*tch that just won’t die”. Yep, I say it. Not in front of the kids. It seems to be running and very consistent theme. Even against my better, realist judgement, I continue to hope. The only explanation for that is God himself my friends. As Saint Paul reminds us, grace is most abundant where it is most needed. 

 I am in utter amazement that my life consists of mountains of work, far exceeding that of a typical lifestyle. It is a 24 hour deal. It is cleaning, suctioning, phone calls, appointments, dressing changes, tube feeds, giving meds, meetings, diaper changes, laundry, equipment upkeep, paperwork, paperwork, paperwork, fighting insurance, paying bills, and all the normal kid stuff like reading books and play-doh. 

If it sounds dramatic, you can imagine living it, or not. Most people would never imagine living a life like ours, so they do not. For this reason, thousands of America’s version of orphans and orphanages are increasing at an alarming rate. 

 From the outside, we look crazy, or narcissistic, or seem to have a very odd and well defined martyr complex. We have and are none of those things, well at least not to an unhealthy degree. We are humans. We get tired. We are sad and we worry sometimes. We do not get it all done. 

In order to live a sacrificial life well, it has to be chosen. I do not mean that you cannot “end up” with a sacrificial life through an ill loved one or unseen circumstances, and not live well. At some point though, you have to choose it. If you do not offer it up buttercup, then it will envelop you with anxiety and depression. Our life can, and often does, go from alright to emergency in about 5 split seconds. We did try to go away for a weekend this fall, but Aaron had a crisis, so we had to come home. We also try to go out once a month, but help can be scarce. We tend to exhaust every unsuspecting person that mozies around. Our core helpers are few but hardy, and well, awesome. About half of our extended family is great, and about half does not speak to us. I am not even sure the reason. As we adopted more children, the concept of our lifestyle maybe became so foreign that they just do not know what to say. This life can be isolating and lonely, I’m not going to sugarcoat it. 

 People have to come to us, and most choose not to. We cannot go to many social events. Friends have to call us and maybe keep calling because we get busy. If people do not show up to help as planned, we just go without, which happens all too often. It can be very difficult to not become jaded and angry. And while I can sometimes walk through that valley, it does not last long. And let me tell you, I am very capable of being a very angry nasty person for a very little perceived infraction by someone. 

So the fact that now, when sometimes we are utterly exhausted, and someone does not show, I do not get angry, is yet another miracle of grace. The grace of our life, the blessing of it, can be hard to see for an observer to understand, so I hope this post is changing some of that for you.  

So while we are exposing lies, let’s shine  a little light on some more… 

“God does not give you more than you can handle.”

All the time around here this occurs. I currently have more than I can handle. Sollie is in the PICU, while myself and several kids are pretty sick at home. I have more than I can handle daily, wait, no, hourly sometimes. 

“Everything will be alright, (or work itself out, same thing).”

Now this is just ridiculous. My son dying did not work itself out and our pre-born children dying was not alright. Enough said. 

“You will heal in time.” 

I suppose this one could be true if it meant you could experience joy again. However, if meant that you will return to your former self, no you won’t. You will change. You will grow better or worse. You will never be the same. You will be ruined or you will be bulletproof, but being the same as before, no chance of that. 

“God always has a plan.” 

Well technically this is true. But I don’t think our struggle is part of His plan. I think he has plans and we as humans, with all of our egos, greed and general sin, mess them up and he has to make new plans. God will never cross our free will, darn it. Just a helpful hint though, never say this to someone who is hurting. It makes us angry at you and God so it defeats the purpose. 

Now that some common lies are de-bunked, I can write about the point of all of this truth telling…

Doug, myself, and our children, are living a very terrifying, exhausting, expensive, cuss word-inducing, not alright, but God-planned life. If we can do it, anybody can. I don’t mean you have to go adopt a bunch of kids that drive you nuts. But there is something that you are called to that is terrifying, exhausting, expensive, cuss word-inducing ( I’m working on it ok?), not alright, but God-planned waiting for you.  

You will keep trying to fill up that waiting God-plan with things that make you feel empty, anxious and lost until you just stop and let it catch up to you. Just quit with the busyness already. I remember my life before all these kiddos when we went to social events, I could talk to typical moms, and we didn’t have a hospital bag in every vehicle. I also remember the gut-wrenching worry about things that do not matter and the misery at trying to keep up with a world that would never be caught.  

Now we live with life and death everyday. Yet somehow, with grace as the only explanation, we live well. We have a sure purpose, though not always a sure path, and miraculously that is the only thing that is purely alright. We know hard love, even through dying, stifling fear and mourning, we know what love looks like. Once you know what love looks like, feels like, and lives like, you will never settle for less. We are not brave or angels or special, and IF we go to heaven, it will be because our children have propped the door open and let us sneak in.

We know love because we let it in. Love is always heavily leaning against your door of fear. All you have to do is crack that door open, and love will bust through. We are up for days not out of choice, but because blinding love for our kids does not let us give them any less than the best care. It’s almost passive; just stop moving, stop looking around, stop striving, stop. Stop. Stop. Slow down and twist that doorknob, hang onto Him tight though, cause it’s a wild ride.


3 Comments so far
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Thank you for all that you do for these children. I enjoyed reading everything you wrote and as a fellow believer, I want to encourage you in something. You wrote:

“God always has a plan.”

Well technically this is true. But I don’t think our struggle is part of His plan. I think he has plans and we as humans, with all of our egos, greed and general sin, mess them up and he has to make new plans. God will never cross our free will, darn it. Just a helpful hint though, never say this to someone who is hurting. It makes us angry at you and God so it defeats the purpose.

Yes, God does have a plan and the Bible teaches that He is completely sovereign and nothing happens without His approval and yes, some suffering/struggles, He causes. This is how we grow and how He conforms us more into the likeness of His Son.

Let’s take Jesus as an example, God’s plan from the beginning was for Him to suffer and die. His struggle was real and it was all part of God’s plan. Without it, none of us would be saved.

Paul is another example, the Lord used his suffering and his struggles to spread the Gospel to the world.

So while it often doesn’t make any sense, embrace the struggle and thank God for it.

The Book of Philippians is a great example of Paul’s story…I guess Acts would be too.

I wish you all the best and may the Lord bless your struggle and your gift of loving these kids.

Comment by Judy

Judy, thank you for reading. I would encourage to read my post more carefully. It is about embracing the struggle. And for people who are deeply mourning, asking them to thank God for the struggle is exactly why Christians alienate themselves from non-believers and seem to be narcissistic. It may come later, but not to someone who just felt their child die from beneath their own hands. It was a privilege to be with Isaac when he died, and today, as a more mature Christian I am thankful that i got to be there, but not at the time. So please don’t ever say that God has a plan and to think God for struggle to a deeply wounded heart. I assure you that your words will only cause the wound to deepen.

Comment by growingupgambills

Thank you and I would certainly never say that to anyone other than someone like you who has shared so openly. I don’t want to alienate anyone and I could see how that would be taken wrong. Most people mean well but I agree, we often say the wrong thing. That is why sometimes people just don’t say anything, they don’t know what to say. Thank you so much for sharing. I am sorry about Isaac and I am grateful you were with him and that he was loved so deeply.

Comment by GroupLife

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