Reflections from the Cusp

By Lori, trinityx3@AOL.COM
December 1999

Sitting here tonight I feel the need to write this.. Perhaps it is the Doomsayers I hear on the radio and TV today, perhaps it is the rain I feel falling upon me today.. Maybe I just want people to know who I am.. I hear the Chicken Littles running thru my head.. and I don't know whether to run and hide because the sky will fall.. or be like the grasshopper..  And then I think.. what if they are right? Even if they are.. we have many things today to be thankful for..

Our world moves at such a high rate of speed now.. we not only have cordless phones, we have cordless phones with hands free headsets.. so we are free to keep moving and do stuff.. we have a computer which puts the world at our hands and communication with thousands of "Our kind".. ones who will share our grief, our ups, our children's birthdays, the ones who will sit there and type us thru yet another surgery or seizure.. and people think we are the unlucky ones, the ones that should be honored, we who others think are the "special ones"..

Well, perhaps they are right.. in a twisted mirror face glass.. we are the lucky ones.  For the most part, our children have forced us to look beyond the "hurry up world, we are being left behind" fever..  We slow down, we savor our childrens smiles.. we take without question what they have to give us.. we feel the pain.. we know we are alive..

A hundred years ago, most of our children would not have lived, some would not have even drawn their first breath.. if they did, they would have been taken from us, and put in places we do not even want to think of.. at the very least, we would have been expected to hide them away in the home. A stray virus or a bad cold could have taken them from us..granted it can still happen , and a chance is better then none.

Yes the best things I think of our time is we have the knowledge and ability to keep our children with us if we choose too.. and that ability is better then none.

50 years ago, there was little or no education for our children, now we get the right, as trying as it may be sometimes to educate to the best of their ability. It is still better then none.

We fight for the right to see good Doctors, but we are able to fight and at the very least we have one. People in some parts of our world to this day do not even have one. Call your favorite Dr., or send a card.. Thank him for all the things he has done to help..  One is still better then none.

I made a hard choice this year, to put a feeding tube in Michael. It was something I swore I would never do.. I would not give up the fight. As I watched him as I fought to keep his weight up, to keep him healthy.  I had to ask myself who's fight this was.  It was no longer Michaels. It had become my fight.  And I was losing.  So I made the choice.  But having the choice was better then none.

So I look at my children.. two with disabilities, and I see beauty, I see rainbows, I see eternal hope in their eyes.

I look at my oldest son and I see the compassion he has for others, and the way he already knows of the unfairness of our world. I see the knowledge he gathered while helping me nurse my Mother thru cancer, helping me with Michael and Daniel. I see him explaining again for the fourth time today what day it is to my Father.  Sometimes old men die with little boy faces, and we both see that a little more everyday. And I see it will make him a better man one day.

I see the pain of a hundred years in my Husbands face. The pain of trying everyday to see what is right, what is wrong. The anger that was not there years past. I see his love for us all.

And in the shadows I see me.. I am still me.. a confused medically challenged woman.. searching and listening for the newest clues.. fighting for my children.. even though I have a hap-hazard way of doing things with them.. by some grace I have not screwed it up too badly.. and I had no knowledge in the beginning to start with.. and Oh Lord help me, the chance to try was better then none.

And to this I say to the Doomsayers..
Its been a long drive down a dark highway...  But I will keep driving.. and I am so glad for the chance.

Lori and the zoo

Response by Judi


Yes, a long dark roadway- but inevitably a set of headlights come from seemingly no where.  You are not alone, not really.  As for the doomsayers ~ they have seen the face that may not reveal it's feelings, but they haven't heard the heart that beats a little faster when we are near.  They have seen the face that does reveal the years in it's wrinkles and lines but once again they haven't heard the heartbeat that makes us want to keep this person near.

On Thanksgiving day I nearly died of anaphylactic shock. I couldn't move or respond but I could hear and feel.  I could feel my daughters head upon my chest, I could hear her telling the rest of the family that I had a heartbeat. A heartbeat is all we need to not be alone.

Have a holiday that makes you feel at peace with the world.

Judi (Bekah's Mom-mom), 

Commentary:  The original writing and response were submitted to the Our-Kids E-mail list in December of 1999

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