So our little Tara made a trip to the OR today. Relatively speaking, the reason for her trip was mild. She is being diagnosed for Celiac. An autoimmune disorder which leads to the body rejecting gluten, and with that interfering with the absorption of essential nutrients in the food. The layman definition of Celiac – is that Tara needs to go on a gluten free diet. She needs to refrain from eating wheat, barley and rye, and it’s various forms like – roti, poori, semolina, cakes, croissants, several types of candy, french fries, and all the cool, but not so good for you things that kids eat in their growing up years.
That’s why I said, relatively speaking, the reason for her trip to the OR was mild.
(The slight twist to the tale is that Tara likely gets this disease from me since I am genetically pre-disposed to Celiac. As much as I want her to be NOT like me in any respect, I am unable to keep the genetic influence off her.)
Regardless, we are beyond the phase of why and how. For a child as energetic, and lively as Tara, it was impossible for this disease to bring to surface the usual symptoms. Our leading indicator was a consistently low hemoglobin. I won’t go into the harrowing tale of pediatrician to hematologist to GI to nutritionists, that we undertook. It was quite a journey. But the good news is that this journey that lasted five months, is now coming to an end. An endoscopy is the last of the diagnostic tests that are conducted before a celiac patient is stamped to pursue a healthier diet for life.
I share that in this forum, because social media is often blamed for projecting a glorified version of one’s life. I share my sorrows and joys equally in this forum. I’d rather share that my child will have special needs when she meets you next time. And I don’t want her to feel like an outlier.
In retrospect, today I experienced love, fear and faith. All stretched to their extremes.
To see Tara’s bed wheeled to the OR was a tough sight. To see her back in the recovery room, in pain from the IV pricks on her hand was also rough. To watch the board of the waiting room and see the status of her procedure change from – In room, to End Case, to In Recovery, to Can see family now, was all very hard. There was a lot of fear experienced in these moments. Of course I was inconsolable when they took her to the OR, but I recovered in the waiting room. More so for others who were also there. I don’t know what their kids were going through. My Tara was only going to be undergoing an endoscopy.
I also became very close to knowing – faith. I have faith in my actions, but other than that, what else do I have faith in? I am not religious per se. I am broken because I don’t trust easily. But Dr. K and her reassuring gestures, brought me close to experiencing faith from close. Her eye contact with me, knowing that my mind is somewhere else. Her ability to draw me to the moment, knowing that I am melting with Tara’s tears. I put my faith in her and her expertise. I don’t know better than her in this case. And so I trusted her with my most precious Tara. And she took good care of her, as a doctor, and as a human. She also took good care of me. [Also I realized I could have never ever been a doctor myself. I just don’t have what it takes.]
And of course I experienced mounds of love. You cannot ask Tara to lie down, and follow instructions. She needs to know why. She kept asking annoying questions to the nurses every time they asked her to do something. I knew why she was doing it. She did not want to close her eyes. She wanted to stay active and in the moment, not trusting what the nurses would do if she closed her eyes. So she applied her mind even more aggressively than she normally would. Every time she asked her silly but valid questions, I felt a gush of love for my child who was fighting fear in a way only she knew she could.
Finally she gave in, as I ran my fingers through her hair, she slowed down, and laid back and resigned to the effects of the medicine given to calm her down. But boy did she put up a good fight! I am so proud of her. And I hope she keeps this spirit as she grows up.
Later when Tara and I were waiting for Agam to bring the car to the door, she insisted on going over and watching the waterfall and the pond. Since she was still drowsy, I held her in my arms. I walked over to show her the pond, but she was not satisfied. She needed to run to it, and check it out for herself.
When Agam and I were thanking the nurse, and getting her stuff in the car, we put Tara down for a brief second. And she made a dash to the pond. Her tenacity brought tears to my eyes. We panicked, but she was fine. The joy on her face, the shine in her drowsy eyes, are all known to me. It’s her strong will. It’s the strength of following through in her actions. It’s her spirit. Her curiosity. I love that strong will. It will give me nightmares when she is a teenager. But I’d take that over anything else.
Sigh! Recovery at home was not easy. She found it hard to swallow initially, but over time that also became better.
The transition from the Tara we brought home after the procedure to the one dancing around and singing at the top of her voice with Agam during bath time – was a journey in itself. It reminded me that there will be days like this. When it will be hard to breathe, and eyes will be blurred for several hours, and no words will come out of my mouth. It reminded me that this is also the joy of parenthood. Experiencing these heavy emotions that can be best summarized as love. Feeling so much love rush through me in the last 24 hours has raised me to a different level of awareness. All thanks to my little Tara.
As for Celiac, well things could be worse. And it helps that two out of the three members in the family will be going GF in a week from now. Time to find a new way to cook, and nourish my Tara.
In the meanwhile, if you meet Tara, don’t ask her how she is feeling? There is nothing wrong with her, and don’t give her anything to eat, unless you have asked me 🙂