A young mother discovers that the hospital has become a second home, gives birth to a younger sister who will save her older brother, and in the midst of all this — she, a settler from Kefar Tapu’ach, turns into the best friend of a mother from Gaza.
Being the mother of a sick child is not simple.
In our case, the struggle began with his birth. It was a birth that took us by surprise, a Caesarian section, and the baby was flown off to the preemie ward. We just stood there. Bewildered. Too frightened to unlock the gates to our emotions and allow ourselves to feel. They said that there’s something wrong in the blood tests. What? How bad? What will it mean for the future? Our future? This tiny, new person’s future? We didn’t ask. We were too scared. Too much in shock. Then they released us, “But we should go urgently to a pediatric hematologist,” they said. There were injections, blood infusions, and tests, lots and lots of tests. The hospital became his second home. The doctors and nurses, secretaries and lab workers, all became friends, family, and when necessary, consolers.
And then came the diagnosis. There are advantages to diagnoses. When there is a diagnosis, there can be a prognosis. There are (or are not…) ways to treat the problem. But with the diagnosis also comes a rock, a huge boulder, sometimes also black, that sits itself on your heart. That’s it. You, officially, with a seal, are the mother of a…. Your journey- the one you prayed all along would disappear in the mist like a nightmare at dawn – has only just begun.
At night, you wonder if it is all your fault. Could you have prevented your sick genes from reaching him? And “What did he do, such a tiny little boy, that he has to go through this?”
For the first time, our eyes turn outward. There are hands out there. Hands extended, ready to support you lest you fall. Many. People and organizations that are the epitome of all the good in the world. Foremost among them is Ezer Mizion’s wonderful staff and volunteers, with their warm, broad heart. Before we even realized that we were running on empty, not having eaten a decent meal in days, beautifully packaged meals began to arrive in the hospital and were delivered by volunteers that really cared. A team of professionals to help us cope emotionally, medical experts to help us get through the maze of medicalese and refer us to top people when we didn’t even know which field of specialists we needed, a mini-vacation at a retreat…Ezer Mizion provided it all. A lot of support, presence at every step of the way, a source from which to draw the strength to survive.
You try, you really try to tell yourself that you are strong, that you can handle it, that it is possible. But again and again you are broken.
Broken by the denseness of teachers, who lodge complaints about a “child at risk”. Perhaps the family situation should be investigated, they piously suggest, when they see the symptoms of his illness that cause hemorrhaging and appear as black-and-blue marks. Abuse, they whisper in the teachers’ room.
Broken by the lines in the printouts of his blood work, where the deviations from the norm screech out to you in bright red. Broken by another rise in temperature, requiring a run to the hospital. From another sleepless night, from another cry of a child that they are pricking, probing, injecting – again!
You are broken by the bureaucracy. And broken by a dream that you had an eternity ago. A dream of being a mother-just a normal mother. You are desperate for normalcy, for a child with a sore throat, not with a disease that nobody even heard of.
The doctors on the ward, and afterwards, the geneticists too, send us for a new kind of treatment – PGD – pre-implantation genetic diagnosis. When he is two years old, you go alone, day after day, for fertility treatments, like in the book you recently read. Except now it’s not the lady in the pages of the book. Now it’s you.
You pray for another child, a healthy child, bright-eyed, smiley, and mischievous. And also, a donor for his older brother. You and your husband already went through all the doubts together — an entire year of debating, is it the right thing to do or not? But your desire mixed into the decision: You want another child, you want his brother alive. When the desire clicks in, the decision is clear.
And in the delivery room, when the blessed cord blood is collected in a sterile bag, you discover your new little girl, a sweet beloved soul, a girl attached to her Mama, imbuing your parenthood with a new tranquility.
Yehudah Elchanan is five years old, and his platelet count is at a new low. The hematologist says that we have to start thinking, getting ready for… We did not yet digest his words. We did not yet understand, did not yet internalize. He was just five years old. He was just starting on his journey, wasn’t he? There would be other stops along the way. Multiplication tables. Book reports. Camp. Marriage…or was this the end of the line? There was Ezer Mizion. Reaching out. Practical support. Psychological support. Love. Compassion.
We moved to the Oncology Ward, on the top floor of the hospital, the closest to Heaven. Was the location chosen so that it would be a shorter trip…?
Again, getting acquainted with a new staff. Again, crying in front of people, and this time, unfamiliar ones. Again bureaucracy. Only Ezer Mizion remained the same. Steady. Ever-present. Advising. Holding our hand.
The day came to release the preserved cord blood, to figure out if and when to draw more, when to go in and according to which protocol. In the operating room, they put in a “Hickman,” a tap for his tiny arteries. And then we go into the ward.
In this “other planet,” which is the Bone Marrow Transplant Division, I, an “almost settler” become the best friend of a father from Gaza. Our rooms are adjacent, the children of both of us are suffering. He had two others who died of blood disease years ago, and he is trying to save this one.. We both understand this language, the language of the parent in pain.
My hair covering fits right in with the other mother’s flowing hair and yashmaks. To all of us comes the smiling doctor with the big kippah and white beard. In this “other planet,” settlers and Palestinians fight together, worry together, care together.
These are long days, the days in the transplant ward and the oncology ward. They are tough. They shatter you into a million pieces. The worry chokes your heart but you are surrounded by help, support and love. Ezer Mizion never leaves our side.
Two years have passed since then. Two years of new struggles with other forms of the illness. Two years during which I tell myself, and us, as a family: We fought and we prevailed. From now on, may we know only good.
For further info: www.ezermizion.org
Yael Ron is 30 years old, married to Itai and mother of two cuties, Yehudah Elchanan and Ruth Techiya. In the past, she studied computers, and today, she is a student of Chinese medicine (What, you stick people with a needle?”) and a shiatsu practitioner (“Cool! Uh, remind me, what is shiatsu?”) and feels at home at the Schneider Hospital. She grew up in Bat Yam and lives in Kefar Tapu’ach in the Shomron, where she tries her hand at gardening, meanwhile, without much success. At times, feels like traveling far away by herself, but remembers that five minutes later, she will miss everyone madly, so she stays here.
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