RSS

Tag Archives: Special Needs

If it walks like a duck . . . 

 

duckwaddle2June or July or somewhere around there—the first person went where angels fear to tread and recommended that I find a new perspective regarding my circumstances. It was a subtle message, but I grasped it right off. At the time I remember thinking, “Am I behaving in such a way that others feel the need to give me the positive thinking message?” The mere suggestion made me doubt myself.

Frankly, I thought I was doing pretty well considering I’d just buried two children and had been learning to care for my disabled daughter in new and challenging ways.

David, Gracen and I laughed a lot the first year. We developed a sarcastic and dark sense of humor and released our grief through laughter more than tears. But apparently, I did not appear joyful, which I’m guessing, outwardly looks like happiness. I wasn’t wearing the Christian mask of perfection. It didn’t take long for me to learn that it’s not okay to be real in the expression of my emotions and struggles. It’s not okay for others to be uncomfortable because of my sorrow. It’s not okay to grieve after a certain point in time.

The funny thing is, everyone has a different idea of when that point in time officially starts. At least one person determined that six or seven months was adequate. Most people generously grant you a year. After that, well, you’re not really grieving—you’re just throwing the biggest pity party known to man.

These days, if I can get out of the house, I am no longer walking in the grief-cloud. I can follow a conversation (better)—maybe even remember details important to others. I can laugh and smile and my life’s circumstances are no longer in the forefront of my mind.

No, they’ve moved to the back of my mind.

Always present.

Always lingering and lurking and awaiting a trigger so that they can move back to the forefront once again.

I can’t explain how it happened but at some point being a disciple of Christ was not a role I played here or there; it became ingrained in my very being. The same thing happened when I became a mother. Doing motherly things wasn’t always in the forefront of my mind, but being a mother became a part of me I was constantly cognizant of.

Furthermore, the role of a special needs mother became a larger and larger part of my identity as ARSACS progressed in Gracen and Katie’s bodies. Every activity had to be filtered through how it would, could, or could not be accomplished. From homework to PE, sleepovers and simple accessibility considerations.

Everything!

The point came where Gracen needed all her everyday clothing in the top two rows of her dresser because she could no longer bend over to remove things from the lower drawers without losing her balance. So when I say everything, I’m not exaggerating a whole lot. I guess watching tv itself hasn’t changed, but getting seated on the sofa to watch tv has.

Christianity, motherhood, special needs parenting all became a part of my identity. The same thing has taken place since the deaths of three of my four children. Bereaved parent has joined the ranks of my personal identity.

Maybe you don’t see me that way but if someone asked who I was, how would you describe me to another? By outside identifiers; my height, weight and hair color—then you add in the other things commonly known about me or any other individual.

ladysnakecharmerIn Christian circles, you wouldn’t identify me by my faith unless there was something very unique about it. “She’s the woman that worships with snakes.” I guarantee you, if anyone in my church family included snakes as part of their normal worship activities everyone would know who that individual was, if not by name or sight, then by reputation.

astonmartincarWe all have a reputation. Some good, some bad, most a mix of both. The lady who drives the Aston Martin would certainly be known in most communities. And we all have things that make up our identity. Very few disabled people don’t recognize their disability as part of their identity, but it’s a defining characteristic of that person. Just like being an athlete or scholar, doctor, or maid becomes not only how others identify them but how they identify themselves.

Bereaved parent is a role that’s identified me for almost a quarter of a century now. But three years ago it became a much bigger part of who I am. Being a special needs mom has been part of my identity for twenty years, but in the last five and particularly the last three it’s become a much bigger part of my identity.

If you were describing me to a group of people in my church, I doubt others would begin with the fact that I’m married to David, that I’m a stay at home mom. Most people would skip right over the physical descriptors and start right in with, “She’s the woman with the daughter in a wheelchair”, or “She’s the woman whose two daughters died in that car accident. You know—the one that happened the day after Christmas.” And any church member whose been there more than three years would likely know exactly who I am. People want me to move past my grief yet it’s the very thing they use to describe me to others.

We are what we do or what happens to us as much as we are our appearance. If you describe someone among a group of Christians as being unsaved, it’s likely that you might be able to identify that person by their outward appearance, the things they say and how they behave and treat others. If not, the Christians among you are probably not the best representatives of Christ.

bbirdoneoftheseThe point I’m trying to make is that you should expect behavior that correlates with the descriptors you use to define someone. The unsaved among the saved may be dressed less modestly. Their speech may be liberally sprinkled with expletives. You might see them drinking to intoxication, or find them bragging about things they’ve said or done that are not common among believers. oneofthesebbirdUnless you are dealing with an abnormally moral individual there should be recognizable differences between the lost and the saved. You expect them to fit the Sesame Street standard—you know—one of these things is not like the other. That’s the Sesame Street Standard.

So please, if you are going to identify me as a special needs mother or a bereaved parent, please expect me to look and act like one. It shouldn’t always be outwardly evident in my appearance and in many ways (after the first few years) it may not be as behaviorally evident, but I will always be a special needs mom. I will always be a bereaved parent. In many ways, I’m unique because of those aspects of my identity. But when I hear the move on message; I hear that somehow I’m not supposed to look or act like the individual you’ve identified me to be. There will always be some evidence of my identity. 

Always.

I may cry at unexpected moments, flee a meeting, avoid a wedding, miss church but I may also be the individual in the group who always notices the elderly adult that needs help with a door or carrying a drink. I may be more aware of the child left behind or flat out ostracized. I may be the woman known for validating the feelings of others. The one who can hear the good, bad and ugly and still see the heart beneath. I may visit people in the hospital that I don’t know. I may encourage the broken, answer faith questions for the doubter or burst out in anger at the mistreatment of another.

Expect me to be who I am, please! And if I surprise you, woohoo, that says a lot about my progress in healing. But if I don’t; judgment, criticism, accusations of self-pity, gossip, disguised as prayer requests or not, are not welcome. I’m not justifying sinful actions, just the normal emotions and temptations we all face.

babyduckwaddle2I am who I am.

I am who God created me to be.

I am who He knew I’d be.

He’s no more disappointed in me than He is in you.

Hear me as I whisper words of another’s hard-earned wisdom . . .

Let it be!

Waddle, waddle…

 
8 Comments

Posted by on January 12, 2017 in Faith, Grief, Muscular Dystrophy

 

Tags: , , , ,

An inside look at Muscular Dystrophy. . .

10420294_1036478713048456_6301817531282454318_n

I too see and appreciate the tender mercies yet have not made peace with what might lie ahead as we live with ARSACS, a different form of Muscular Dystrophy than Mitchell’s family endured.

I am not simply grieving what has been lost already, but what is yet to come. Maybe, this video will help others to understand why I am so resistant to moving forward. I’m still coming to terms with the fact that everyday following December 26, 2013, has been and will be the best of times for our family, in spite of what physical skill may be surrendered to ARSACS on any given day.

Please, take a minute and watch this short video by clicking on the link below highlighted in red.

WHEN THE LIGHTS GO OUT, AS THEY SURELY WILL

So, I try to live in the present. Sometimes life demands that I look further down the road, and sometimes I’m unable to prevent my mind from floating forward to the new eventualities, but I desperately try to control my thoughts, to avoid “kicking at the pricks” as Christ informed Paul he was doing on the road to Damascus.

10176056_866110320085297_2882709226621647193_n

Please try to understand that my hope lies in eternal things and avoid trying to help me have hope for things of this world. I’m not trying to be negative, I’m just grieving what’s been lost while simultaneously grieving what’s yet to come.  It’s known as Anticipatory Grief.

I know there are not a lot of people who have walked in my shoes and have no idea what it’s like to live in a continuous grief cycle and therefore, don’t have any concept of how I think. I know that experience is the most effective way to develop empathy but before you try to remind me of my blessings please imagine living with my everyday reality.

1908247_836591986370464_1217962212_nI didn’t lose a son and two daughters and begin picking up the pieces to move into a hopeful future. I live with the knowledge that I will always be picking up broken pieces and there is no way to repair the pieces that have been falling since MD entered our lives.

Happiness may be fleeting and driven by circumstances, but joy and happiness are not equivalent. Joy is the light of the Holy Spirit’s indwelling. Unless we are consciously trying to hide it, joy seeps to the surface. It’s intangible – a silent, more subtle and substantial quality than happiness which flaunts it’s presence in spontaneous and short-lived smiles, laughter and excitement. Joy lingers, in fact it resides, within even the most wounded heart because it is the fruit of the Spirit.

1959377_862709323758730_2781967411220218258_n

Do not jump to the conclusion that families who cope with special needs, life-threatening or progressive disease live without joy and are unaware of their blessings. You might be surprised to hear them voice their deep gratitude over the smallest of accomplishments and simplest of kindnesses.

Living with great needs has a way of opening your eyes to the smallest of blessings, but it doesn’t anesthetize the painful realities of life. It’s like a downpour abating just long enough to load your daughter into the car and her wheelchair into the trunk. You are grateful, thrilled even, that you aren’t soaking wet even knowing you will still have to place the daughter of your heart back into that wheelchair when you arrive at your destination. You also know the rain might not abate when you arrive and you may still end up soaking wet. In spite of that you are still thankful that you stayed dry for the time being.

10255840_868325463197116_8875675070898379913_n

I want others to understand that none of this is easy, there are no simple answers, and I will not always be able to tie up my messy life and emotions with a Biblical bow that makes everyone, myself included, feel better.

If you haven’t already; watch the video, read Mitchell’s father’s Facebook posts. You will find a godly man who, two plus years later continues to deal with sorrow. He’s also aware there will be more darkness to navigate down the road. He ties things up with a Biblical bow better than I do; so you will appreciate his lessons and feel comfortable hearing them too. He has much of worth to share.

11330028_1121438231219170_1171381216622681065_n

 

 
 

Tags: , , , , , , , , , , , , ,

 
%d bloggers like this: