Sunday, January 25, 2015

Forty-Five, and What Remains

So, I turn forty-five on the fifth of next month. FORTY-FIVE! How the heck did that happen?!? I very clearly remember being in my twenties. Wasn’t that just last week? I remember thinking, erroneously apparently, that people in their mid-forties must actually know what they are doing. They are grown-ups, after all.
Turns out, I was wrong. Or maybe all the other forty-five-year-olds do know what they’re doing and I’m the anomaly. That would be about right...
(That was just a short tease of my latest post on my new blog, Grace for That. Check out the rest of it and be sure and scroll to the bottom to sign up to receive all future posts in your inbox.)

Sunday, January 4, 2015

What Faith Is Not

Faith is the substance of things hoped for, the evidence of things not seen. Hebrews 11:11.
I memorized it in the second grade at the little Baptist school I attended, but I’ve pondered its meaning countless times in the years since. What is faith? Sometimes, as I listen to my fellow Christians bandy the word about, I want to declare, like Inigo Montoya, “You use that word a lot. I do not think it means what you think it means.”.....
Read the rest at my new blog, Grace for That. Be sure and sign up so you don't miss any new posts, too! 

Monday, December 22, 2014

Hospital Jesus

The radio preacher’s words echoed back to me, “Without Jesus in our Christmas season, we have no reason to celebrate.” I knew he was right and I was ashamed that in my haste to check things off my list, I’d neglected to even think about Jesus of late. As I headed into work, I determined to find Him in my Christmas, beginning that very evening.
Except when I finally got home, I discovered that the abscess behind our little Serb’s ear had doubled since the day before and was clearly not responding to the prescribed oral antibiotics. A quick call to the ENT confirmed my suspicion that an ER visit was in order. So much for Jesus, I thought wryly...
Read more on my new blog, Grace For That.

Monday, December 1, 2014

Change is in the Air

I started blogging here shortly after the birth of Eon as a way of processing my feelings and experiences, as well as connecting with others on a similar journey. I added in my blog at Remnant of Grace as a way to keep my thoughts on faith separate from my musings here on disability. 

But my life is hard to categorize and my brain isn't that linear. It's time to converge my blogging spheres and allow myself the freedom to write whatever my heart feels. 

Please join me in my new space at Grace for That over on Wordpress. I started the new site off with a controversial bang because, frankly, it didn't fit into either of these spaces. 

Thank you so much to my readers here. I have treasured this season of my life and the support you've given me. I do hope you'll follow me there. 

Wednesday, November 19, 2014

Blessing The Special Needs Mom

I was asked to speak at a MOPS group on the topic of "encouraging, supporting, and loving moms of kids with special needs." Of course, I was thrilled to be asked and even more thrilled that they recognized that as a need to begin with. 

I thought I'd post my notes here for anyone who couldn't be there: 

Just like all families, special needs families are a varied group. So many possible diagnoses and then levels of severity within those diagnoses, medical complexities and complications, coping skills for the parents, support systems for the family, etc. It's a tough job to try and speak for all of them. So, I reached out to my Facebook groups and asked other parents what they want you to know, too. 

So why do special needs families need to be encouraged? I wrote this description on my blog recently: 
Families who have a child with special needs are often in crisis. Medical issues can be chronic and exhausting, but often they come on suddenly requiring emergency hospitalizations or testing and sending the household into a tailspin. Even without medical fragility, kids with special needs can have different behavioral issues that leave parents chronically stressed and sometimes with little hope. 
I wrote about the ramping up of behaviors of our little guy in a recent post here and the effects on my psyche and our family. I left out a lot of detail and failed to describe adequately the complete drain on my coping skills, our resources, and the overall toll it took on our family. We are on the right track now and seeking better supports which have infused us with new hope, but I would be a fool to think that we will be crisis-free in the future. 
Parents of kids with special needs are also lacking in restful sleep. Some kids have sleep disorders and require very little sleep (ours does), some need middle of the night meds or feedings, and sometimes the intense worry and anxiety of protecting and caring for our children can keep us awake. 
My point is, often times, we parents are shredded. We are at the end of our proverbial ropes and hanging on by a thread.
What we want you to know:

  • Know that we're just like you - We're not special and we're not supermom. Contrary to the popular adage we hear a lot, God does not give special children to special parents. That's just crap. What we're doing is what all good moms do - caring for our kids and meeting their needs. Don't tell us, "I could never do what you do." Of course you could! And you would, if your child needed you to do it. I think it's supposed to sound encouraging, but when I hear that, it makes me cringe and think of all the things I'm not doing that you probably think I am. No mom thinks she's got it all together, and if you do, just get on Pinterest for five minutes. You'll get over it. We're just like you and we all feel like there's more we should be doing.
  • Get to know our kids. We think our kids are amazing! While life may be tougher than average, we wouldn't trade our children for anything. We are not disappointed in them. When they meet a milestone they've been working on for months, we celebrate like they've scored the winning touchdown in the championship game. If you want to bless us, get to know our kids. Learn some signs if they use ASL or figure out their communication board if that's what they use. If they use a wheelchair, ask us if they can sit in a regular chair and how they transfer. Learn about their feeding needs, etc. In spite of their special needs, they are children first. They each have unique personalities and things that make them laugh and when you get to know them, their disabilities will begin to disappear. 
  • Reach out to us. This life can be isolating and we're lonely. Our kids' needs often limit our involvement. We may not be able to attend the mom's night out because we don't have reliable childcare. The morning Bible study may offer childcare, but not necessarily for our children. Even the group playdate in the park is not a social time for us as our child may need constant supervision due to being behaviorally inappropriate, or unable to physically manage the equipment. Please, continue to invite us even when we say no more than yes. It means a lot to know we're remembered. Forgive us when we get wrapped up in something to do with our child and are not as available or interested in your life as we want to be. We don't want to have a one-sided friendship and we're sorry if we make you feel that way. Don't give up on us when we fall off the radar. 
  • Give us grace when we're not very gracious. Often, the most difficult part of this journey is everyone else. This life is one of constant advocacy. Our children face discrimination from the school system to the insurance companies to looks from other parents to comments on blogs. We have to fight for the rights of our children in almost every arena, sometimes for their very right to exist. Because of this, we often have a chip on our shoulder. Please give us an extra measure of grace. We've learned that the best defense is a good offense and It's hard to shut off "mama bear". We forget that there are safe places and safe people. 
  • Be our support when our child is hospitalized. When our child falls ill and goes to the hospital, our world collapses. Gift cards to local eateries are so helpful to keep us from eating expensive and awful cafeteria food. (Moms aren't provided a tray unless they are breastfeeding.) Bringing healthy snacks when you visit is wonderful, too. Often, we don't feel comfortable leaving our child and having a stash of protein bars and fruit is helpful. And do visit, even when you don't know what to say. Just sitting with us helps break up the monotony and reminds us that there is an outside world. Organizing meals and childcare for the family at home is huge, as well. 
  • Offer babysitting/respite. So many of us don't have anyone reliable to watch our child. Marriages in special needs families are often strained. Allowing us a date night would strengthen the whole family.
  • Offer to take the siblings to fun events/extras. Siblings sometimes miss out on those and we feel guilty about that. While we prefer the whole family be together, sometimes it's just not feasible to take the child with special needs to certain events. It stinks for all of us when that means their siblings miss it, too. 
  • Please don't use the R-word. Ever. When you say, "I'm such a retard!" or "This phone is so retarded!" it cuts deep. We know you didn't mean it "like that", but nothing you can say is going to make it okay with us. It is offensive and hurtful to an entire people group and their families. Please, choose a different word. 
  • Become aware of how your church handles special needs. Advocate if necessary. We love it when someone comes alongside and advocates for us. People with disabilities and their families are among the least churched group in America. I know of many, many families who used to faithfully attend, but have been wounded and made to feel unwelcome because of insensitivity toward (and, in some cases, outright rejection of) their child with special needs. I mentioned earlier that we are often shredded and feel isolated. We need to be there. Please make sure your church is making a place for us. 
I don't have the answer for every family. My biggest piece of advice? Ask your friend how you can bless her. Tell her you don't know much about special needs. Would x,y,z be helpful? I know she'll be touched. She may never take you up on your offer, but she won't forget it, either. 



Sunday, November 2, 2014

Be the One

We did not attend church today as several of our crew are fighting the upper respiratory infection I brought home from work and we decided not to spread it around. 

A few of my friends posted videos of Facebook in commemoration of Orphan Sunday. They were my undoing. My heart filleted and laid bare. Salt rubbed in the wound that is always there, but sometimes below the surface of an apathetic life and my first world concerns. This is the day, one time a year, that the church notices, that we take a closer look and we see them. 

video

The numbers are overwhelming but we need to remember that each of those children has a name, a personality, a uniqueness...a purpose. 

It only takes one to make a difference in the life of an orphan. 

Then I watched this video and I wept. 

video

Did you see that? Did you see how these boys light up when shown just a little bit of kindness? Did you see them melt into the volunteer when she holds them? Did you see the bruises and the sores? Can you imagine what their lives are like when there are no witnesses?

It seems like so little that these volunteers come once a week to ease their suffering. But these children have nothing and for those with nothing, that little is EVERYTHING! 

I weep because I see my Bogdan in them. Their lives were what he faced. Instead, he is learning to speak and the joy of voicing his wants. After careful study of his brother and I, he is learning to relax into my snuggles and to seek them out. He is learning colors, and sorting, and sequencing. His personality is coming out more everyday. 

He has a future.  

And, like most orphans, they don't. But, unlike most orphans in the same situation, they have Friday. And Friday, those volunteers will come back and bring the light and the love and the music with them. And the next Friday, and the next. 

Because those volunteers know the power of one. 

It may seem like too little to sponsor an orphan, or contribute to a children's home, or volunteer with Big Brother's or Sister's, or be a Safe Family.

But it's not. 

Be the one to make a difference for one. 




Sunday, October 26, 2014

That

We were talking about adoption. She admitted that she's not open to special needs. "Not everyone can do that," she said.

I didn't hear the rest of the conversation, so puzzled was I by that last statement. 

Do what, exactly? What is it she thinks I do? 

Meet my kids needs? Love them? Sacrifice my time, energy, and self to make sure they're cared for? That's just good parenting and it's what all good parents do, regardless of the needs of their kids. 

What superhuman qualities does she think I possess that she doesn't?

The statement bothered me. It bothers me, still, and I can't quite put my finger on why. 

I feel like we're putting children into categories and those with special needs are a subspecies. In adoption, you get to choose. There are boxes to be checked. You get to decide what's acceptable. It's a measurement held up against a child to see if they pass the test to be in your family. 

Those with special needs are found wanting, time and time again. They are left languishing, usually dying, in institutions. They are left waiting in group homes, statistically more likely to be abused than not. They are shuffled from foster home to foster home until a permanent institutional placement is found. They are left behind. 

Why?

Because, while they have no facts to back it up and no first hand knowledge of what that actually entails, potential adoptive parents believe "not everyone can do that." It's too big. It's too scary. They don't want a subspecies. They just want a normal child. They don't see the child with special needs as a child, at all. 

Sadly, it's not just relegated to adoption. As prenatal testing becomes more sophisticated and widely used, the unborn must now audition to be a member of the family, as well. Score too high on the chromosome test or too low in grey matter, and you fail. Not only do you not get a family, your sentence is death and you don't even get a chance to prove your worth. 

We live in a society in which easy has become idolized. That which costs something, which taxes us in any way without great perceived reward, is to be avoided. Including children. 

Let me let you in on a little secret. Parenting children with special needs is rewarding. Personally, I don't think it's any more or any less rewarding than parenting typical kids. It's just different. Sometimes, it's amazing and filled with joy. Your child reaches a milestone they've been working on for months and you feel like your heart will burst within you. 

And sometimes, it sucks.  Kids are messy and demanding and exhausting. Kids with special needs are sometimes those things on steroids. 

But, once you say yes to a child, you love him to the moon and you wouldn't trade him for the world, even with the messy and demanding and exhausting, because he's yours. And he is worth that. And, actually, you find that isn't nearly as big or as scary as it once was. In fact, that kind of fades into the background and turns into something you now know simply as life.

And life is good.