Darling Ellie

Dearest, darling Ellie,

I know you cannot read this yet but I feel I want to write you so that in the future you will be able to read this letter of love about the courage and efforts displayed on your behalf and to know the love we feel for you. This is a small chronicle of your eventful life.

FIRST THERE WAS JOY!
I met you for the first time at the American Airlines gate in airport. Proud mum, proud grandma and slightly bemused big sister Tovah-wondering about all the fuss caused by this new interloper. Even prouder grandad. I had wondered on the plane how it would be possible to love someone completely new-how could there be room for more love and how does that work? The first sight of your wrinkled face, tiny hands and screwed up eyes answered all the questions. The human heart can expand with love to accommodate and Ellie anyday. You did not do anything spectacular in the ensuing two weeks but each little burp, each little movement was acclaimed as if you had won an Olympic competition.

THEN THERE WAS WORRY
Phone calls-many phone calls across the Atlantic. "Ellie cries for hours."
"Ellie is not doing so well."
The words cannot begin to describe the pain and unspoken worries of your Mum and Dad-made worse by the fatigue induced by long hours of sleeplessness.
Helplessness at this end of the phone but no perception on the impending news.

THEN THERE WAS DESPAIR
A phone call. "Ellie is desperately ill."
"Ellie may not live beyond five years- even if she does, she may never walk."
"Ellie is in the hospital."
While it may not be a manly thing to do, I cried. We all cried. Perhaps, not only for you but for your parents and the frightening future which loomed. We all knew that whatever happened, our love for you would be magnified. Yet there was a feeling of impotence, a need to do something but feeling absolutely powerless to do anything but give our love to you and your grieving parents. We travelled through the night to Paris and caught the first plane to America. Still stunned, still grieving. Empty inside. Angry. "Not our little Ellie." But hoping. You were in the hospital when we arrived, You were SO normal-in fact you were beautiful. We treasure the picture your Mum took of you in the hospital crib. Sad memroies but the tranquil look of peace on your face is a treasured memory. Tests, tests and more tests. Blood sampling. Brain scans, the lot. You have a life-long right to hate people in white coats. Bad news-the doctors confirm a damage in your brain. It is inconceiveable that our pretty Ellie could have something so wrong with her. They prescribed steroids but the side-effects are worrying. We watch you minutely, grasping at straws. "The spasms are reducing." Each of us would have gladly sacrificed ourselves to make you well. But we could not. You and your parents had the battle to fight. Weeks go by, you improve, there is some hope, but all is not well. Your Mum will not accept the situation. G-d bless her. She finds an eminent doctor in Los Angeles who specializes in your syndrome.

THEN THERE WAS HOPE AGAIN
With enormous courage your Mum took you to Los Angeles. What an undertaking. A new, hostile city. A sick baby. Grasping at straws again. "Please make my baby well, please." 13 weeks in Los Angeles. Camping out like gypsies. Trekking around from house to friendly house. Treatment that caused you to blow up like a balloon. Unkind remarks from stupid people about you. Yet, the love for you was magnified. Hoping, daring to hope but deep worry that stayed and ate at our guts. During this period, your Mum went through despair but always had your future in mind. It would have been SO easy to accept the doctors prognosis and give up. She did not and we must thank her for her perserverance always. We arrived in Los Angeles and frankly, my dear, you were not our Ellie. Fat face, thrush, injections. Ellie, mark two was progressing. Grandma spent 6 weeks with you and Mum. Big sister Tovah had arrived too. Poor Dad-13 weeks alone in New Orleans.

THE HOPE CONTINUES
Return to New Orleans. Weeks of hoping that the new medication would work the miracle we prayed for and which you deserved. Visit to France. Staggering around. A beautiful smile. Joy when you did something wrong-pulling up the flowers. Signs that our little Ellie was progressing and trying to emerge from the nightmare. Progress at the autoroute cafe. You held a cookie AND ate it by yourself for the first time. Such small progress-such tremendous progress. We were elated and sad to see you leave. More weeks of phoning and the news gradually deteriorated. The drug was not holding the spasms one hundred percent. Feelings of impotence. We could only offer meaningless encouragment and pray for your future. Then the big gamble, again tremendous courage to undertake an amazing regime, abandon the drugs and put you on a diet.

AGAIN THERE WAS HOPE, BUT FEAR.
Weeks of the new diet. The commitment to controlling-really controlling every morsel you ate. Again, the steadfast dedication. Our Ellie IS going to make it in some way far beyond the original forecasts of the medical profession. We came to New Orleans in February. You were progressing well on the diet. Ellie, mark three had arrived...and how beautiful you are! Finally there was comprehension in your eyes not seen before. You responded to silly things like "How do you do, Ellie?" with a limp but certain hand. This was a miracle and gradually you extended your 'repetoire.' The day you clearly repeated 'B.." constantly in response to our prompting was a day I shall never forget. Each of us had tears in our eyes and a lump in our throats, just too big to allow us to speak. Since then, the news has been good. progress-albeit slow, is there.

AND NOW THERE IS THE FUTURE
Afraid whenever the phone rings. Desperate for good news-"Ellie is doing fine." Wonderful. If, as I pray, you read this in years to come, when memories may have become blurred, you should know that you are our little miracle. BUT a miracle achieved due to the determination of your Mum and Dad not to accept what they were told. For this, I will be eternally grateful.

G-d bless you, my sweet little one. Continue getting well-and let's surprise everyone with your progress

Your loving Grandparents.
France- March, 1994

More of Eliana's Story
Click to learn more about the ketogenic diet
Click to learn more about infantile spasms

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