Chapter 9 And from the dismaying bedrock of need there was spawned a fragile dream, a dream of what we as a family could do to help solve some of these problems.

In the early spring, David hitchhiked out to Ohio to see Melissa.  When he returned to school, he typed the following letter to us and his fiancee, Kathy, in New York City who was finishing her training for a B.S. in nursing at Columbia

I filed it under D for David.

Hello All:

You probably know how this trip got started.  I suddenly realized that I had not seen my sister Melissa since she was five days old.

So I hitchhiked all the way to the home.  I went in to see Melissa right away, and I could tell she belonged to our family.  Those big blue eyes and blonde-red hair which had just been combed---a ribbon stuck on top!  And she smelled so good---she was a doll!  I picked her up and held her; and she never cried, although I’m sure she had a hard time getting used to the way her big brother held her.  I fed her a bottle and man, she’s a good eater.  When she finished, she let out a healthy burp!  Then I guess she was tired from my holding her so she hit the sack.  To say the least, I have fallen in love with her. 

When Melissa woke up, she and I went over to see Mike in one of the other rooms.  That little guy has the sweetest smile you have ever seen.  Then I put Melissa on my knees and moved her legs back and forth so as to give her a muscle workout.

Sunday afternoon, I again found myself out at the home and little Melissa was all dressed up in a pair of blue pants with a little checked jumper over that.  She was pretty and pink.  I got some big smiles, and she seemed quite comfortable in my arms.

What effect has this had upon me personally?  Well it engendered within me a love for my sister that had previously existed only in a depersonalized form.  Now I know her and have held her,  and my love wells up within me at my own inadequacies of imparting something that I have to here.  

My biggest problem is that I see her as a normal child and I keep hoping for an outside chance that somewhere along the line someone goofed and she really doesn’t belong there.  It is killing me. Man, I can hardly see the keys for the tears.  I can’t get my mind off the hopelessness of this situation. 

Please do me the biggest favor in the world----write me a letter about this letter.  I’m a bit upset!     

                                                         David

Minutes later, I was at my typewriter, trying to reach out long distance to heal his heartache.

David,

I have just this minute finished reading your letter describing your visit last weekend with Melissa. 

I know how you feel because we, too have experienced these heart-tearing moments.  And there is comfort in holding her warm little body close and whispering into her soft neck the never-to-be-answered question.  Why?  You can turn yourself inside out by longing for things that you cannot have, Dave.

Your biggest stumbling block right now is wishful thinking that maybe---just maybe--- it isn’t true and that your little baby sister is normal.  But, there’s an awfully simple key to this dilemma, and I don’t believe it’s an oversimplification of the problem at all.  It is this: “ Reality must be faced squarely!”

She is not normal and has no hopes of being normal.  God does not set in motion certain laws only to change them arbitrarily.  I think, David, that if you had observed other small babies and had seen their alert expressions and interest, you would more easily recognize Melissa’s condition.  The quicker you accept this, the simpler it is to adjust.

Do you realize how unnecessary heartache has festered in the lives of parents unwilling to look life straight in the eyes?  They poke their heads high into the clouds, whisper sentimentally,  “Maybe it isn’t so”; and they read into every look and action of their precious mongoloid baby,  progress!  “Maybe this will go responsive!”  And they focus their whole lives around this one unsuspecting angel that God has sent them, to the detriment of the normal children God has already given them.  Not to mention their warped attitude toward their life partner.

Life is such a vapor, David.  If this were all there were to living----these seventy or eighty years lived in a smutty old world filled with hatred and violence, trouble and tears,  forget it!  It just isn’t worth the strain.  But, gently, God is molding us to be vessel FIT for His name.  Maybe it had to take a Melissa AND a Martha for us!

We all ache to enjoy her in a normal relationship.  How much extra pleasure she could bring I cannot allow myself to imagine.  My heart would crush to pieces all over again.  Little Melissa will never know!  All the pain is on our side!

Someday her bonds will be loosed, and God will make her whole again.

Much love,

Mom

It was that same spring that I felt compelled to share the reasons why we placed Melissa in a home.  Perhaps I was defensive, but I felt very strongly that there was more than one way to cope with this problem.  And when I finished writing our story, I mailed it off hopefully to Good Housekeeping magazine.

I was nearly hysterical when a note of acceptance arrived with a generous check as well!  The article was published in November of that year under the title, “The Baby Our Love Could Not Cure,”  and soon the readers began to express their views.  The editors were wonderful.  They spared me some of the more scathing rebuttals----for there were many who disagreed violently with my solution-----but forwarded the rest for me to answer personally.  Challenging they were and time-consuming as well.  I soon found myself corresponding with scores of broken hearts all over the United States.

This letter came from a woman in Ohio:

Had it not been for a friend of mine, I would not have known about your article.  When my husband told her our sad news about our mongoloid baby, she rushed up to the hospital to visit me.  I was under sedation but able to talk.  She had the article open and began reading it to me.  As I grabbed the magazine from her and read it for myself.  I wish I could put down on paper what I felt there in the hospital room, but I can’t.  I do know, though, that here was our answer.  God bless you for writing the article, and I’m hoping it will help other couples faced with the same problem.

Here is a letter from a woman from Massachusetts:

Dear Mother of Melissa,

I have just finished reading the article that you wrote and I can’t tell you how much it meant to me.  A month ago our son was born.  We have a four-year-old daughter and had so hoped for a son.  How happy we were!  Two days later we learned that he is a mongoloid.  We have talked endlessly with family and friends and seem to get more and more confused every day.  All of the doctors have advised us to keep him at home for about four years.  Our families and friends think we should place him in a home as soon as possible.  We don’t know what to think.  I want to be able to give myself to my husband and daughter as always and wonder if it would be possible with him at home.  But I also have a tremendous feeling of guilt when I think of  taking him to a home.  I feel a special closeness to you as I think our situations are so similar.  If you ever have time, I would greatly appreciate hearing from you.

And Yet another----

I carried your article in my purse for four months as one would a Bible. I can’t honestly tell you why I did.  Perhaps if such were my fate, it would serve to comfort me or perhaps as a justification for what I might do if faced with the same situation.  I have since had my baby----my fourth son---and I thank God every day that he is a normal healthy child.  But God works His will in mysterious ways; and as it turned out, I save your article only to help someone else.  A friend of mine gave birth a few days ago to a mongoloid baby boy.

And often, it was a matter of groping along slowly with them, for these were tender matters of the heart.  I could not just sit down and bang off any old answer on my typewriter.  

My friend in Massachusetts wrote again that she had found a home ......

but that they will take him only as an infant, as they feel that the adjustment is far easier for both parents and baby at an early stage.  We have made arrangements to take him on December 19.  We feel that at this time our daughter will be excited about Christmas, and perhaps it will be easier for us to explain it to her.  I am still very confused and not at all sure that my conscience will allow me to actually take him.  Any word of encouragement from you would certainly be appreciated.  Am I buying my way out of a problem?  Is this the cross that God gave us to bear, and are we shirking our duty to Him not to bring up His child?  Will Sarah feel insecure if we take her babybrother away?  How I pray that the right answers will come to us.

And I answered her that day:

Certainly in the giving of advice, there is a wide divergence of opinions.  We encountered the same dilemma.  We observed also that many doctors to whom we spoke advised us to keep the baby home for one year,  often for a very practical reason-the lack of adequate physical facilities I think, though, to be utterly frank, professional opinion can be split rather neatly into two camps of thought on opposite sides of the river.  So then, the problems rests squarely on us.  and this is where hearts turn to God, the Giver of all wisdom, for doesn’t He know the way we take?  And doesn’t He truly delight in His children turning to Him for help?

I thoroughly agree that the adjustment is far easier for both parents and baby at an early stage.  If only you could talk with some of the parents, as we have, who have kept their children home for a few years and then decided to place their little ones in a home!  The tearing separation!  The confused little one who has to adjust from being the center of the household to a totally different kind of schedule!  I saw one little girl who had cried almost incessantly for two weeks.  Now she is one of the happiest children there, completely adjusted.  

Your daughter Sarah will adjust far more quickly than you to life without her little brother.  I would almost be a temptation to project your own feelings and think of them as her reactions.  I am confident she will accept your sensible statement that since her brother will never be like other children, it will be better for him to live where they know all about how to take care of him best.  Oh, the folly of my trying to choose words for you.  A mother’s heart and a dad’s heart have a way of knowing how to reach their own.

To answer you query on “ Is this the cross God gave us to bear?” I do not think a cross has any reference to sickness, accident, calamity or any other hardship that comes into our lives.  Many take a perverse pleasure in patiently bearing misfortune, in carrying burden that God never intended.  You will not be shirking your responsibility;  it will still be your money, your thoughtful planning for his welfare, and your great love that will take care of him the best way you know.  If your eyes became weak and you could no longer see, would you say, 

“ This is my cross; I must bear it?”  No, you would buy glasses!  Now, that’s purely feminine logic.  I even think about housework in this light.  It is my job to see that my husband’s shirts are washed and ironed and our house kept neat and tidy.  If I am financially able, do I shirk the thought of outside help to free me so that I may continue to be the actively healthy and happy mother and wife that my family need?

This isn’t “buying your way out of a problem,”  this is mature and sensible evaluation.  Don’t let pure sentiment be a motivation factor.   I often say, this is God’s will for our lives for now.  I do not know about the future----yet!  Maybe there will come a time when Melissa will be able to go to a special school to be trained.  I do not know. 

Many letters told of the discouraging search all over the country for suitable facilities.  Here we could empathize completely.  Had not we too been sickened by the sour diaper smells, the puddled floors, the paint-chipped cribs?

Our snug middle-aged work began to expand, and again we found that the question on our minds was, What can we do for these other children so like our Melissa?

We visited doctors, special schools, and homes for exceptional children and we looked and listened as those who knew told us of the dearth of adequate facilities for retarded children.  Our burden grew heavier as we became more knowledgeable.  

And from the dismaying bedrock of need there was spawned a fragile dream, a dream of what we as a family could do to help solve some of these problems.  Watered by our own natural enthusiasm, spurred on by our imaginations , the dream materialize into a twenty-four-a d-day preoccupation.