I was sitting in the waiting room of our Dr.’s office, waiting for the nurse to call us back. Gittel and I were there for her 14 month well visit. I watched as she ran up and down in the small waiting room, excited that 2 other little girls were there for her to play with. They were a little shy, but, unfazed, Gittel ran up to them with a big smile and initiated a playful exchange with them. After a while Gittel came running back to me, as is normal for typical kids to do, almost to reassure herself that mommy is still there and keeping a watchful eye on her. Content after a few snuggles and a quick sip of her sippy cup, she headed back to play with the girls once again, this time stopping for a moment to say hi to some other people who had since entered the waiting room and to light up the faces of a few senior citizens who had just sat down. This went on for almost an hour until we were finally called back.
When the nurse informed us that it was our turn, I called Gittel, who stopped what she was doing and immediately came back over to mommy. I picked her up and carried her back, as she was a little nervous, and seemed to sense a little suspiciously, that something was “up”. She responded to my reassuring hugs and loving whispers. She watched the nurse carefully as she measured her height and weight and as I answered the usual questions. When the nurse left the room, we continued to play as we waited for the Dr. to arrive. We sang a couple of her favorite songs, she explored the office a bit and we walked up and down the hallway while we waited some more. Pretty soon it was our turn to be seen.
There was a gentle knock on the door and the Dr. walked in. At 14 months, most of the questions were about her development and her overall health, which thank G-d, seemed to be right on track. There was also the basic autism screening questionnaire, which, ever since our Sruly’s autism diagnosis , I viewed as both a relief, and to some degree, a mild annoyance. A relief, being that from the moment that our children are born, I am carefully scrutinizing every aspect of their development. I am always relieved when I see that, thank G-D, everything is developing as it should. A slight annoyance, since, as the parent of a child with sever autism, for goodness sake, I could write the questionnaire, and it would be a lot more detailed then the one that they have!…. Not to mention the fact, that for the most part, I seem to know more about autism than they do. Just ask me point blank if I think she is “at risk” or possibly “on the spectrum”. What they should be asking the parent is; may the child possibly be at risk for a vaccine injury based on their past health history? How has the child, or other family member responded to vaccines in the past (fever, lethargy, seizures etc.)? How many rounds of antibiotics has the child received since birth? Does the child have an egg, dairy or other food related allergy? Does the child exhibit symptoms of, or is known to have a mitochondrial disorder? Are there common genetic concerns such as MTHFR, etc., etc…
In the case of our daughter Gittel, she had received two rounds of antibiotics the year prior, due to a bout of strep. Re-establishing proper gut health after extensive antibiotic use is crucial. Pumping such a small child with the entire schedule of suggested vaccines, all while their tiny bodies do their best to re-balance themselves, is much like playing Russian Roulette. She was otherwise, thank G-d, a healthy baby. She nursed beautifully (full time!), no acid reflux, no skin issues, no thrush etc… It turns out, that even with all of these questions it is still almost impossible to predict what the outcome of a vaccine may be.
However, I waited patiently and answered all of the questions in turn.
Dr: “Is she making eye contact?”
Dr: “Does she respond to you when you come into the room?”
Dr: “Does she respond when you call her name?”
Dr: “Does she seem interested in other kids? Does she play with them?”
Dr. “Does she use her hands or fingers in an inappropriate way?”
I love this question. What they are trying to ask is, does the child exhibit any self-stimulatory behavior?
After a few more questions, and an otherwise uneventful visit, the Dr. said that the nurse would be in shortly to administer the scheduled vaccines. He wished us a good day and walked out. Soon the nurse entered and asked us if we were also interested in the chicken pox vaccine in addition to her MMR. Thank G-d I said no. I am honestly not sure what went through my mind at that moment and why I said “no” so quickly. It had not even crossed my mind prior to the visit. (I only learned later on that you are never give two live virus vaccines at once – kind of paradox though, being that the MMR itself contains three [attenuated] live virus vaccines….). The nurse didn’t seem to mind that we turned down the chicken pox vaccine and proceeded to prepare Gittel for the MMR. Gittel cried briefly as I held her close, reassuring her with soft words while hugging her. The visit was over. When we arrived home, Gittel seemed understandably a little worn out, but still full of smiles and warm snuggles. That evening however, she developed a fever.
By the next morning, even after a number of alternating rounds of Tylenol/Motrin, the fever persisted. What was more worrisome to me than anything else, was the fact that she had completely stopped looking at me and just sat on the floor emotionless. She displayed considerable discomfort, despite the pain killers which I had given her to bring down the fever. She wouldn’t respond to my many attempts to engage her. It almost seemed as though her inner world had completely consumed her. Alarmed, I mentioned this to my husband, hoping that somehow he could make this stop. Or at the very least pull out his crystal ball and tell me that she would indeed go back to being herself soon. He calmly responded that she was probably just feeling “under the weather” and would soon perk up.
By day two the fever persisted. I watched with a sinking heart as she failed, most notably, to respond to her name. She just sat there. She looked sad and forlorn and didn’t seem to be “here” with us. She seemed as though she didn’t recognize her surroundings or where she was. Oh, how I wanted to know what she was thinking. What was going on in that delicate little brain of hers. Was she scared? What was she feeling? What was hurting? What did she want me to do to help make her feel better? Still no eye contact. I got down, face to face with her, cooed, laughed, played our usual funny games, but to no avail. She continuously turned her head to avoid me. She didn’t respond to our games of “chase”, or the thrill of Mommy coming to tickle her. She wouldn’t even smile. And those eyes, those lost eyes… She still cried when she was hungry, and gently snuggled during those intimate moments of nursing I treasured so dearly. Somehow, instinctively, I knew that I needed help to flush her system. I began with the most natural and soothing thing I knew – stopping all solid foods and going back to strictly nursing around the clock. She was all too happy to comply.
Day three, the fever was still there. I was almost pleading with my husband to see what I was seeing. I was hoping I was wrong. I was scared, very scared. I was scared that I was right. My husband still tried to reassure me that she was not herself, only because she was still under the weather from the effects of the shot. She had not only stopped eye contact, she actively avoided it! No smiles. She stopped responding to her name. She didn’t respond to our usual fun and games. She didn’t even stop to watch her siblings, let alone interact with them. She seemed to be hardly managing or coping with what life had just thrown at her. With what life had just thrown at us all.
After 3 days, her fever subsided. For the next couple of weeks I kept trying to interact with her, to engage with her, to make eye contact, smiles, something! But there was nothing. She moseyed around the house in her own little world. She was busy. Very busy. Almost alarmingly busy. Before all of this, she used to knock down the occasional book from the bookshelf, as do most busy toddlers, and when caught in the act by either my husband or myself, she would giggle and scream in sheer delight. Knowing that we were coming closer to get her and tickle her away from her little game. It was her way of both exploring and of successfully capturing our attention. Now, however, she seemed like she was on a very serious mission to wipe out the entire bookshelf over and over again. She was completely expressionless. She stopped responding to our playful drama when coming to get her. It was during one of these episodes, about 3 weeks after she received her shot, that my husband finally realized that I wasn’t just being overly worried. There was indeed something alarming here….. and all too familiar…..
Once my husband realized the magnitude of what I was seeing, it was then, that everything suddenly seemed official. Until then I was hanging on to the small thread of hope that perhaps I really was just worrying too much. It was then that the tears began to fall. The next few months were full of prayer, specialists, supplements, therapies and more prayer. We took her to specialist who confirmed the presence of inflammation in her brain. I was so shaken by what had happened, that I was afraid to take her back to her original Dr. I assumed that he would simply dismiss our case entirely upon hearing that it was vaccine related.
I was beside myself. I couldn’t believe this was happening to a second child. How could I have been so stupid 12 years ago in letting the doctors convince me that vaccines were still unquestionably safe. That the pros very much so outweighed the cons. That all of this would have happened “regardless”. I once again found myself in tears before G-d. “Please,” I begged, “Don’t let this happen to another child.” I don’t think I have ever before asked my Grandmothers who had passed away, to help me beseech G-d for His supernal mercy. To ask Him to help us in this time of need. I began praying and asking my Grandmothers and a dear, special and holy Great Aunt, to please daven for her as well.
Many months went by, and thank G-d she ever so often began to smile again. During this time we continued with her rigorous supplement regimen, therapy, nursing, praying and more praying. One night, after a couple of more months had gone by, I tearfully began to daven. I am not sure if this was the right thing to do, but I asked G-d that if this was truly the decree, if this is what was meant to be, if He could please, please lessen the severity and make it mild. Please not so sever.
Little by little she began to make some fleeting yet noticeable eye contact. She preferred not to, however when we came “face to face” she wouldn’t actively turn her head to avoid us. She still wouldn’t react if we were coming to play chase with her from across the room, but if we made it into her personal space, she ever so slowly began to respond with smiles and giggles. She also seemed to once again, enjoy being in the company of her siblings.
At nearly a year later, she had come along way. She was still unable to communicate even her most basic needs, but she has begun to “label”. She did not respond to her name or even turn when you called her. She would however get excited with interactive games like chase, dancing and peek-a-boo. Thank G-d she still had the most beautiful smile and infectious little giggle. She used to sit down and get comfortable with a stack of books by her side. Looking through each one slowly, with intent and purpose, while turning the pages slowly and enjoying every picture. She would occasionally pick up a book and go through it quickly. It was difficult however, to tell how much she understood. She seemed to enjoy watching the pages turn more so than anything else. She enjoyed sitting and playing next to other children, including her siblings, however she had stopped initiating play, as well as any other form of communication. And her eyes. There used to be a sparkle in those beautiful eyes. Those wise, playful yet knowing eyes. She had lost that twinkle, that spark of life. Although part of me was still hopeful, I remained cautious. And of course, there was still a part of me which didn’t want to think too much about any of it at all.
We still watch her very carefully. The specialists which we went to said, that at this young age, children can respond well to appropriate supplements and therapies. “The body,” they told us, “is a self righting ship.”
I eventually gathered up the courage to return to the original Dr. who’s office administered the vaccine. When he finished hearing our story and reading the medical and laboratory reports, he responded that in all of his many years of practice, he has never seen a reaction to a vaccine quite like this. While I found this hard to believe, he did, however, agree that it most definitely looked like a vaccine injury. He agreed that the symptoms she exhibited in the days following her vaccine seemed to indicate possible encephalitis. He was kind enough to encourage us to file suite against the federal government’s vaccine injury court (which up until that point we never knew existed). He mentioned that any documentation relating to our daughter’s condition, which we may need moving forward, he would gladly provide us with. Just as our visit was ending he said something which both scared me and consequently left me very skeptical of the medical establishments motives, in general. He looked at us and said, “I think we should hold off on vaccines for the next three months.” I looked at him, completely dumbfounded, almost not believing what we were hearing. After all of this, and this was still his view? I realized then and there that it wasn’t worth our time or emotional energy to argue. We promptly ended the visit and walked out.
I know everything that goes on in this world is all part of G-d’s master plan, but sometimes I wish I could just ask G-d what exactly does He want from me? What do I need to fix? What do I need to do to improve? I do thank G-d every day for giving us life, for keeping us together, for blessing us with all of the beautiful gifts and Brachot He has bestowed upon us. For blessing us with the thoughtful tests that He has so carefully chosen for us. I pray that all of us be blessed with immense light, love, simcha (joy), brachot (blessings), good mazal, nachas, wisdom, long life and the strength to carry on. May we all merit to greet Moshiach, together with all of Klal Yisroel, speedily in our days.
We are ready, Hashem.
We are oh, so ready.
Originally written, Dec 2015
Photography by my oldest. ❤