I Will Not Forget You

The following post is a letter to my children which I have included with my will and other end-of-life information.


Elderly manLong after Alzheimer’s disease ravaged my grandfather’s confidence, his humor and his past, it finally drained his body of breath and life. Once he died, his wife began the same, slow descent, and I went to her, hoping to comfort her with Christ while she still knew me. However, in human terms, it was already too late; a sweet, vacant smile was her only response to love or logic. So I left her with a Bible, which has now come back to me, unmarked and unruffled, and she left me with a new struggle of my own. Can God’s word sustain those who are beyond words? Does His Spirit indwell those whose spirits are vanishing? Because I became a Christian as an adult, the specter of returning to childhood, of forgetting the best news I ever heard, weighs heavy on my mind. There are a thousand losses in that possible future.

 

Yet, if I should experience the slow, sad leave-taking which is Alzheimer’s, I would not wish anyone to grieve over-much for my sake. Whatever else it may be, the disease is surely a metaphor.  It leaves behind what cannot be taken forward. As perception, kindness, the fruits of faith, a loving heart and the twinkle of an eye fade from our sight, they cannot be lost. Those are the elements of a child of God which will never be lost but will be infinitely improved. Just out of sight, those pieces wait for the final exhalation of the last remnant of a soul which has been yearning toward God all along. We will all leave behind a dry husk of flesh and sin, a seed “sown in dishonor.” It is no necessary thing for us. A thousand years from now, will it matter if I shed my skin more slowly than you shed yours?

 

Psalm 139 speaks eloquently of the omnipresence of God not only in the world, but in all the days of our lives which are ordained and written in His book. Are some of the pages blank?  If they are, it must be those pages that I have wasted on myself, taken hold of and shared with no one, refusing the difficult prose of God. Those are the meaningless pages, the ones that will burn in the fire of salvation. The pages which God alone has written with His own finger, like those days in my mother’s womb, those nights of mysterious slumber, those years which may be lost in confusion or delirium, must not be waste. The script on those pages is gibberish and foolishness to the wisdom of this world, but waits like mirror-writing to be revealed in the perfect light of grace. He who is familiar with my going out and my lying down will write on all the pages just as He wishes until that glorious morning when I arise to His call and behold the glory of His face. (Ps 17:15)

 

I do not wish to forget my children or my parents or my husband. I do not wish to drop my sword while still on the field of battle. But I will be yielded to His will and used to His purpose. And even if I forget God, He will not forget me. Having forgotten that there is hope or life or a beautiful God, I will still wake one day to the most breathtaking of all surprises: to hope and to life and to my beautiful God.

 


Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!  See, I have engraved you on the palms of my hands. Isa 49:15-16

When a Child Has Special Needs

Miranda already had three young children when her son, Bobby, was born with Down Syndrome. Miranda would tell you that Bobby was a welcome addition to the family, that everyone loves him and that her life is richer because she has a child with special needs. What she might not tell you – what she might not say even to herself – is that the extra demands Bobby puts on the resources of the whole family have brought them to tears and conflict on more than one occasion. Miranda’s husband travels a lot and though this was a sacrifice before Bobby came along, now it is a strain.  Miranda’s second child has always been extremely shy, but she’s recently developed the weird habit of wandering off with motherly strangers. Miranda herself is overwhelmed and wonders if she might be depressed.

 

Studies show that when one child in a family has special needs, the whole family is under more stress than other families around them. There is no way to avoid this because of the extra time, responsibility and worry that come with any new situation. It is best to recognize the challenges and meet them head on. For a family to be at its strongest, happiest and best, it’s important to pay attention to how well it’s working and where the edges might be fraying. Parents lead this effort by taking care of themselves and making family care a priority. Our new handout on this topic will give you some practical suggestions. Use it to take stock of your family’s health (even if you don’t have a child with special needs) now and regularly in the future. Parents and older children could discuss these ideas at a family meeting. I’m including the handout below (which you can download directly), and it will also be available on our Resources page.

 

Download the PDF file .

 

Make it your goal to love for the long haul, to work together as a family, to rest well and to encourage others to do the same. It’s not selfish to make sure you have a strong foundation – it’s a necessary blessing.

 

I’d love it if you would share your ideas and experiences in the “Comments” section.

Super Crip: Able to Leap Tall Buildings in a Single Bound

Super crip is a term used in the disabled community for heroic, exceptional people with disabilities in the public eye. For example, several amputees have strutted their mechanical stuff on Dancing with the Stars recently. One national media outlet described the inspirational spectacle this way: “Double-amputee Amy Purdy … hasn’t let her disability slow her down.” Because I am also an amputee, friends and acquaintances have mentioned the show, suggesting I watch it. I know they find the courage and persistence of the showcased super crips inspirational for their own lives and hope that I will, too. However, there is a hidden message in there which was actually spoken aloud to me recently: “If they can dance at a world-class level with prosthetics, why don’t you walk better?” It was a TSA agent, swabbing my artificial leg for explosives, who took the opportunity to describe an incredible dance performance to me this past month. She followed up by asking if I was a very recent amputee, and when I told her I lost my leg to cancer about 30 years ago she articulated the question others have unwittingly implied. If amputees can be runway models, Olympic athletes and dance stars, then why have I let MY disability “slow me down?”  Why do I limp, walk stiffly and occasionally fall?

Surely, most people don’t actually think about this angle when they recommend the programs they have enjoyed. I think there is a generic quality to their appreciation – if a person with an acute disability can accomplish such a feat, then other people can accomplish their own dreams through hard work and an optimistic attitude. It’s my own internal voices which compare me to the outliers, but I still don’t really enjoy the experience. It feels a little like asking an overweight person if they watch Biggest Loser.

So, I want to take this opportunity to explain what I cannot say in the moment. Every amputation is different. Every amputee is different. In fact, every disability of any kind is different. I lost my leg near the hip joint, and all the soft tissue was removed from the stump and replaced with tissue from another part of my body. That means I have little leverage to lift and move my prosthesis, and I don’t have the musculature to do it well, either. In addition, I have only recently succeeded in using a suction socket because I have so little surface area to which it can be attached. That means my prosthesis must be simple and light or it will pop right off! No heavy bionics for me, and even if I had a terrifically expensive carbon fiber athletic foot, I wouldn’t be able to manipulate it.

But I am SO grateful! My prosthetic leg is a good friend. Not as comfortable or flexible as the one God made, yet an incredible blessing which has allowed me to live a full life in so many ways. Before my prosthetist found some new material (thank you, NASA) and creatively structured my latest leg, I had to wear a belt around my waist to keep it on, and I suffered numerous abrasions and infections over the years. But I am pain-free most of the time now, and I never think (anymore) about the things I can’t do. I enjoy the ones I can.

How would I like you to respond to this post? Well, if you have a personal experience of disability or the super crip phenomenon, I’d love to hear your thoughts. My intention is not to heap guilt on anyone about things said to me in the past, but simply to raise public consciousness about the continuum of ability of which we are all a part. Share your Dancing with the Stars story with the teenager who doesn’t think they can make the soccer team or the employee who is falling short of their sales quota. But consider your audience when you think about sharing it with disabled acquaintances. If you know me well, I’d love for you to ask me what I think about the show you enjoyed. If you don’t know me well, if, for example, you work for the TSA, then maybe stick to the weather.