I’ll Stand Tall Until I Cannot Stand At All

Living with a disability becomes a lifelong lesson in not taking the little things for granted…

It’s easy this day and age to loose sight of the things that really matter.  We get wrapped up in the little things, but we take those little things for granted.  I think for myself at least it is time that I take time and look at the things that really matter, and appreciate the little gifts in life, because in many ways they are the greatest gifts we can be given.

Living with a disability becomes a lifelong lesson in not taking the little things for granted,  I know that the things I may be able to do today, I may not be able to do tomorrow, so as one of my favorite quotes says:

“I am only one, but still I am one. I can not do everything but still I can do something.” Edward Everest Hale in a Speech he gave about his Cousin Helen Keller.

I do not take the things for granted, but neither do I allow myself to dwell in the valley of self pity.  I have to much life to live so that really is not an option for me.  I have kids who need me, and friends who are my strength when I am weak, and I try to be there’s as well.  Yesterday I found myself talking briefly with my friend with MD, she is not one to really talk about herself and what she is going through, but with me, because we both struggle she does open up some and yesterday she admitted that the pain had gotten worse, not that it slows her down, she was still doing what she does, and she still prayed with me over Amber, and my own battle with pain, but both of us are of the school of that if we don’t lose it we are going to use it, and I truly believe it is our faith, and the wonderful support system we have that has allowed us to come this far.

I think having pets has been another advantage in my life my dogs and cats are great company, and Mychael is a great protector.  He has a sweet temperament for the most part, but if he feels he is in danger he will definitely do something about it.  Abby is such a joy too, my friend Fran got her for me a short time after Nonna died, and that helped me through the process of grief.

My niece Amber shows me all the time the importance of appreciating the little things.  I love the fact that I have such a great niece, who can take the time to enjoy the little thing.  I love the sound of her laughter when she plays with my Moms Puppy Marissa!  Or when she gets one of Teddy’s toys and starts playing with Him.

Copyright Michelle R Kidwell

May.25.2009

I Move by Faith

The Lord has called me by faith to do what I do, and often even when I do not feel like it, I find myself pushing myself out of bed, and dragging myself to Sunday Morning service so I can be one of four adults who help out with the children, and we need that many believe me when we are thinking of the kids who are ADHD, those with learning disabiltieis and who need medications such as mood stabalizers, (which is a whole other blog in itself, because I feel at times that is just a cop out, not in part of the parents but the doctors who are so easy to prescribe.  I admit some truly do need these things, but I think we need to really way options before we go that route but as I said that’s another blog all together)

The book of Hebrews; Chapter eleven to be exact speaks of doing things by faith, and it is my faith that gives me the energy to work with these kids.  I love the energy of these children but sometimes chasing children around with five pounds of braces on your legs is not fun.

Hebrews 11

By Faith

 1Now faith is being sure of what we hope for and certain of what we do not see. 2This is what the ancients were commended for.

 3By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible. 4By faith Abel offered God a better sacrifice than Cain did. By faith he was commended as a righteous man, when God spoke well of his offerings. And by faith he still speaks, even though he is dead.

 5By faith Enoch was taken from this life, so that he did not experience death; he could not be found, because God had taken him away. For before he was taken, he was commended as one who pleased God. 6And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.

 7By faith Noah, when warned about things not yet seen, in holy fear built an ark to save his family. By his faith he condemned the world and became heir of the righteousness that comes by faith.

 8By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going. 9By faith he made his home in the promised land like a stranger in a foreign country; he lived in tents, as did Isaac and Jacob, who were heirs with him of the same promise. 10For he was looking forward to the city with foundations, whose architect and builder is God.

 11By faith Abraham, even though he was past age—and Sarah herself was barren—was enabled to become a father because he[a]considered him faithful who had made the promise. 12And so from this one man, and he as good as dead, came descendants as numerous as the stars in the sky and as countless as the sand on the seashore.

 13All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. And they admitted that they were aliens and strangers on earth. 14People who say such things show that they are looking for a country of their own. 15If they had been thinking of the country they had left, they would have had opportunity to return. 16Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.

 17By faith Abraham, when God tested him, offered Isaac as a sacrifice. He who had received the promises was about to sacrifice his one and only son, 18even though God had said to him, “It is through Isaac that your offspring[b] will be reckoned.”[c] 19Abraham reasoned that God could raise the dead, and figuratively speaking, he did receive Isaac back from death.

 20By faith Isaac blessed Jacob and Esau in regard to their future.

 21By faith Jacob, when he was dying, blessed each of Joseph’s sons, and worshiped as he leaned on the top of his staff.

 22By faith Joseph, when his end was near, spoke about the exodus of the Israelites from Egypt and gave instructions about his bones.

 23By faith Moses’ parents hid him for three months after he was born, because they saw he was no ordinary child, and they were not afraid of the king’s edict.

 24By faith Moses, when he had grown up, refused to be known as the son of Pharaoh’s daughter. 25He chose to be mistreated along with the people of God rather than to enjoy the pleasures of sin for a short time. 26He regarded disgrace for the sake of Christ as of greater value than the treasures of Egypt, because he was looking ahead to his reward. 27By faith he left Egypt, not fearing the king’s anger; he persevered because he saw him who is invisible. 28By faith he kept the Passover and the sprinkling of blood, so that the destroyer of the firstborn would not touch the firstborn of Israel.

 29By faith the people passed through the Red Sea[d] as on dry land; but when the Egyptians tried to do so, they were drowned.

 30By faith the walls of Jericho fell, after the people had marched around them for seven days.

 31By faith the prostitute Rahab, because she welcomed the spies, was not killed with those who were disobedient.[e]

 32And what more shall I say? I do not have time to tell about Gideon, Barak, Samson, Jephthah, David, Samuel and the prophets, 33who through faith conquered kingdoms, administered justice, and gained what was promised; who shut the mouths of lions, 34quenched the fury of the flames, and escaped the edge of the sword; whose weakness was turned to strength; and who became powerful in battle and routed foreign armies. 35Women received back their dead, raised to life again. Others were tortured and refused to be released, so that they might gain a better resurrection. 36Some faced jeers and flogging, while still others were chained and put in prison. 37They were stoned[f]; they were sawed in two; they were put to death by the sword. They went about in sheepskins and goatskins, destitute, persecuted and mistreated— 38the world was not worthy of them. They wandered in deserts and mountains, and in caves and holes in the ground.

 39These were all commended for their faith, yet none of them received what had been promised. 40God had planned something better for us so that only together with us would they be made perfect.

Many of these children have grown close to me, perhaps it is because I have taken the time to reach out to them, to show them that the Lord loves them, that no matter what they are going through the creator of the universe cares.

Copyright Michelle R Kidwell

July.26.09

Small Strides: A Mission of Understanding

Cystic Fibrosis and Cerebral Palsy are the same thing, CF affects the lungs, CP is brought on by a traumatic brain injury either envitro or shortly after birth

I have often been asked why I write the way I do, why I write about boys and girls, men and women with disabilities.  Some wonder why I write more about girls and than boys, and that answer is simple I write more about disabled women, than I do about disabled men, because I have a first hand understanding of the limitations, the life of a disabled woman, because I am one.  I do try to get into character when I am writing about a man, but the truth is I think I will always write more about disabled women, because that is just me.

I write the way I do to dispel myths to get into the heart of the character, and that is what the Lord called me to do.  I want to dispel the myths of what it is and what it is not to be a person with a disability, a person who may use a wheelchair, who may suffer anything from the depression disorders, or simply to be a person who suffers from a Chronic illness and is trying to be understand.  A large majority of what I write is fiction, but the feelings, the emotions are as real as my own tears.

Most of my characters are not going to have a wand waved at them and get magically cured, but because I am a Christian myself, I find that when I write with the Lord’s hand guiding me, I am able to help my characters get through the difficulties they may face.

I have had people who called me stupid for believing the way I believe, and I have been targeted for some of the subject matters I write about, but that has not stopped me, nor will it.  The Lord gave me the gift of words when I first picked up the pen and found the magic within and I am not going to compromise my gift for anyone or anything.

I was talking earlier today to a friend who happens to have a disability, I have several and many are worse off than I, but this particular friend and I were voicing our frustrations about those who do not even try to understand about those with disabilities, those with conditions that are very real, and really change lives.  This particular friend sufferes from a condition that is seen, but far to often not understood like me she suffers from a NMD, and has to deal with its ramifcations though sadly her conditions is more progressed than mine.  We talked awhile about many different aspects of our conditions and how good it felt to be able to vent to someone who understood,  I want to convey somethings here before I close this entry out:

If someone is depressed they are not going to snap out of it, but that is no excuse for you to be a jerk to them, or them to you.

Just because someone uses a wheelchair does not mean they want to be talked down to, there’s a good chance there is as smart as you, or smarter.

Yelling at a deaf person is not going to let them hear you, and talking to them like they are idiots will accomplish nothing.

Just because someone is blind does not mean they sit in inner darkness, perhaps they are the most enlightened of us, because they are not making visual judgements.

No one likes to be called crippled its akin to racial slurs, so just think before you speak.

Just because someone lost a limb does not mean they are any less of a person, and if its a soldier we should thank them, not treat them like crap.

Not everyone with Autism sits in a constant state of aloneness, there is a large spectrum of Autism and we can not box each person into a single category.

Not everyone with Spina Biffida is going to die in childhood, and many will face a long normal life with the proper care.

Muscular Dystrophy is not one disability, but it encompasses over forty two conditions from ALS, to Beckers

Cystic Fibrosis and Cerebral Palsy are the same thing, CF affects the lungs, CP is brought on by a traumatic brain injury either envitro or shortly after birth

Dyslexia does not make a person stupid, it just makes it more difficult to read or write, and causes the reversal of words, Dyscalucla is the reversal of numbers:

Don’t judge anyone by leg braces, neck braces or scooters, wheelchairs, Prosthetics  they no more define us, than your car is your definition.

Just because someone doesn’t “Look” Sick doesn’t mean they are faking it.

Copyright Michelle R Kidwell

7/24/2009

It’s More than A Pollyanna Complex: It’s Overcoming

I was asked to write a blog about living with a chronic condition, by Lisa Copen who runs a group called Invisible Illness and a group called the Sunshine room, so here it goes.

Living with a condition like a Neuromusuclar disorder along with the conditions that are not so difficult can be challenging, and on the good days when I do not require a cane, or my scooter, and they see my handicap placard, they come in and look as if I am faking it, little do they know that walking any distance, especially on any parking lot is unstable for me, it does not take much for me to go from having a good day to landing hard on the ground.

I have been battling this condition for a long time, my whole life really, because long before I was tested for a NMD I had hip displacia, along with dyslexia and dyscalucla which are not related to the Neuromusuclar disorder, but I have learned that a postive attitude and enjoying life are as important to my health as the medications I take, and even more important is the fact that I have faith in the Lord.  Without faith I do not know where I would be.

I began taking Yoga, though I am missing today, because I ended up getting my brothers cold, but the yoga is adapted to each persons limitations and needs, and both my doctor and her nurse attend so that definitely relieves any fears about being hurt.  In fact it is my doctor that suggested it, because I wanted a way to deal with the pain and not having to medicate any more than I already am.

My condtion also has left me with a weakened bladder, so I take several pills a day for that alone, one to prevent the UTI’s that often accompany those who deal with conditions of the bladder, and one to relieve the pain and spasms!  I only recently found a doctor who did not treat me like I was just making it up, that it was all in my head.  Even the Neuromusuclar specialist I saw several times, treated me in a condenscending way, so I refused to go back to that particular doctor.  Dr Hope, the doctor I like alot is getting me into a specialist at Stanford so I can get a better idea of what exactly is going on because Neuromusucular disorder is a very broad term, because in the Neuromusuclar family there are over forty two different conditions with varying levels from mild to the most severe.  Mine falls somewhere in the moderate range, and it is progressive, thankfully not the extent of Duchene’s or ALS though.

I decided early on when I began working with children and when dealing with my nieces and nephews I wanted them to understand, that there are going to be some days when I can’t be as active as I like, and it has nothing to do with them.  Even when working with the children at church I know when it is time to sit down, and I let them touch the braces, and Amber has driven the Motorized chair around the room.  Amber is old enough to understand so I let her, at twelve I want her to understand that we are all made different.  Amber herself suffers from Ear and heart trouble and a very mild case of Cerebral Palsy.

I’ve been asked a hundred times over if I had some kind of Pollyanna complex, but the truth is like everyone else with any sort of sickness I get tired.  I also know that I can not sit around feeling sorry for myself, and I was and am determined to beat the odds.  In many ways I am, I can still walk, I have Asthma, but my heart is good, which is a big worry for anyone with a NMD, and I have written several books four of which are published.  I find that when I am active, I am giving myself the strength and stamina I need.

Copyright Michelle R Kidwell

July.22.09

Are We Quick to Make Snap Judgements

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I may live with a disability, but the disability in no way defines my life, I have my limitations yes, but I do what I can, and on the bad days I thank the Lord for the good ones.  I am rich in the ways that matter and in my world leg braces and scooters dont matter, it is the Lord that puts the love in my heart, and the family I am surrounded with, some blood relatives some not.

Living with a disaibilty is not always about making compromises or concessions it is about learning to do things in a different way.  That does not necessarly make us different, it just allows us to live in an able bodied world.

We can not more box ppl with disabilities in one category than we can anyone else, so what is true for one person may not be true for another.  Even people with the same disabilities have different attitudes and do things differently from one another.  We can not assume that all children with Spina Biffida will require Catheters and shunts into adulthood.

I have a neuromusuclar disorder but saying that is not really pinpointing anything down, anymore than saying that I am of Euroepan decent, because Europe consists of a large part of this world, and saying my ancestors came from Europe is not like saying my ancestors came from Verona and Wales.

When you are disabled you are often subject to snap judgements, they see a wheelchair and treat you as if you are a child, they see you using sign language and scream in your ear as if that is going to help, but I decided long ago to make my words make a difference.  I wanted to create stories for both children and adults that showed just how much a person can overcome, In A Sisters Justice and the books in that series that follow I create Marishka Tanya Alexei a Parapalegic cop who shows the world what she can overcome, and in Four Words to Freedom a young adult novel which is not published yet, I create a young adult who despite having non verbal Cerebral Palsy, shows her Mother that she is not in anyway retarded as her Mom treats her for the first fifteen or sixteen years of her life.  There are other stories, and in With A Little help which was published in 2005/2006 my friends Karen, and Karla and myself tackle the issues of being a disabled Christian.

I also find that working with children gives me a chance to show them that ppl with disabilities are not all that different, I do not shy away from there questions or forbid them from touching my braces. or when Amber has sleeps over using my scooter because I know the best way to let them understand something is to let them experience it.

Copyright Michelle R Kidwell

7/2009

I’ll Stand Tall Until I Can Not Stand at All

It’s easy this day and age to loose sight of the things that really matter.  We get wrapped up in the little things, but we take those little things for granted.  I think for myself at least it is time that I take time and look at the things that really matter, and appreciate the little gifts in life, because in many ways they are the greatest gifts we can be given.

Living with a disability becomes a lifelong lesson in not taking the little things for granted,  I know that the things I may be able to do today, I may not be able to do tomorrow, so as one of my favorite quotes says:

“I am only one, but still I am one. I can not do everything but still I can do something.” Edward Everest Hale in a Speech he gave about his Cousin Helen Keller.

I do not take the things for granted, but neither do I allow myself to dwell in the valley of self pity.  I have to much life to live so that really is not an option for me.  I have kids who need me, and friends who are my strength when I am weak, and I try to be there’s as well.  Yesterday I found myself talking briefly with my friend with MD, she is not one to really talk about herself and what she is going through, but with me, because we both struggle she does open up some and yesterday she admitted that the pain had gotten worse, not that it slows her down, she was still doing what she does, and she still prayed with me over Amber, and my own battle with pain, but both of us are of the school of that if we don’t lose it we are going to use it, and I truly believe it is our faith, and the wonderful support system we have that has allowed us to come this far.

My niece Amber shows me all the time the importance of appreciating the little things.  I love the fact that I have such a great niece, who can take the time to enjoy the little thing.  I love the sound of her laughter when she plays with my Moms Puppy Marissa!  Or when she gets one of Teddy’s toys and starts playing with Him.f that if we don’t lose it we are going to use it, and I truly believe it is our faith, and the wonderful support system we have that has allowed us to come this far.

Copyright Michelle R Kidwell

2009