My Dear Parents of Typical child
Disclaimer : Content of this letter is not coming out of jealousy looking at you or your children. I am very happy, looking at every Child for I see an impression of GOD in them. I hate comparison of one kid with another for I have been thought everyone is unique, but in this expression, I have done some comparison, primarily to drive home a point and tell how my world is different from yours
Loving you so much. Congratulations on being a parent of a typical child.
In my journey of learning about different medical conditions, I have learnt, 1 in 68 kids are diagnosed Autism. 1 in every 10 kids is diagnosed with Anxiety disorder . 1 in 100 kids that have Obsessive Compulsive Disorder. 1 in every 700-1000 kids born with some sort of Chromosome disorders. More rarely, 1 in 50,000 to 100,000 kids are diagnosed with Russell Silver Syndrome that Adhruth, my son is diagnosed with. I don’t know anything about your Child, boy or girl, tall or short, what grade they get at School, what games they play, other extra curricular activities or for that matter any other behaviors in them you think needs correction, but if I were you, without thinking anything else, instantly I will go down on my knees and say “Thank you my Lord” and feel grateful for your Child is not the 1 kid in these categories.
As a Parent, we both are in the same table. The difference though is we are on the opposite sides of the same table. You are accompanied by 67 other parents on your side, who are in similar situation like you. On my side of the table, I am the only one. Being in similar situations helps you have conversations with other parents, discussing about your Child’s growth, school, games, diet, extra curricular activities like swimming, hockey, football, baseball etc. I am only thinking about one thing – my child’s health and nothing else. With this difference, I don’t know how to relate with you and you don’t know how to talk with me.
After seeing a lot of typical parents, here is how my life is different from yours.
While it takes a couple of mins to get your kid ready for an activity at School or a game, I can never step of the house without a bag for food, formula, feeding tube accessories, snacks, diaper, chewy tubes, hearing aid, battery and most important – a Stroller. All this is required even if we are out just for a couple of hours. Activity and games are replaced with Therapies in our case.
If we drive for a vacation over long weekend, we have 25 kg baggage filled with trays of formula, electronic cooker to cook our Son’s favorite food (which by the way in only 4-5 items). Oh also, Yes, we cook even on vacation in hotel rooms and our fun in the vacation only starts by Noon after we feed and get him ready. We need to take a break every 45 mins to an hour when we drive so that he is not frustrated being tied in the car seat all the way.
If we are flying to a place to spend a week outside home – oh, the list is huge now including shipping a week’s worth of formula to the Hotel so that we don’t have to carry that in the flight. If you have a 50 lbs bag as a check-in, we have 3 of those for a week’s trip with 2 being feeding tube supplies, special things that kid likes, accessories and back up tube etc. You wonder why we always travel heavy. That is the only way, we are able to travel and have fun.
You complain when you have to leave early from work, rarely for a day to take your sick kid for a doctor appointment. In my case, not a week goes past without at least a couple of therapies and doctor appointment. We are longing for a week without any doctor and therapy visits to feel healthy and that is not happening.
Not a week passes by, without resolving billing issue with insurance, hospitals, therapies, scheduling new appointments, follow-up for a new assessment that we think is going to make it better for our kid, checking if we have moved up on the wait list for additional weekly therapy sessions. Rather than having family members and friends as Speed dials or favorites, we have Hospitals, Therapy center, Insurance companies. They are our everyday essentials.
You invite me for a live stage performance of favorite super star and upset when I am unable to join that. I want to come to that and enjoy and have fun just like everyone else, but I also know it is not possible to keep my kid silent and not disturb the proceeding there. So, I decline that and happy watching performances on TV.
You are terribly upset your kid is not growing like your sister’s kid of the same age and is made to sit on the second row for his height. In my case, I am feeling happy and proud looking at my 7 year old when someone asks me if he is 4 years looking at his height and weight, because last year they asked if he was 2. That to me, is our measurement of his growth.
You complain how frequently you have to buy new Shoes and clothes for your kids as they outgrow them. On the other hand, I feel terrible to buy the same shoe size for over 18 months and still shopping for 4T for a 7 year kid.
As you are busy complaining to me about how kid is not eating more than 3 dosa (crepes) and it takes a whole 15 minutes, I laugh because in our case, eating one is a battle won, not to mention the fact that each of the meal goes on for anything from 30 to 45 minutes. Adding on top of that, he needs to be fed and cannot self feed himself.
You are telling me your 5 year old is only able to tell 12 rhymes along with capital of all states in the Country, where as neighbor’s kid can tell capitals of 50 countries in the World. I certainly feel happy and proud for your kids, but then I think about my 7 year old, unable to even call me Appa, I am only staring at a blank future and happiness doesn’t last long.
As an adult, many of us are afraid of injections and shots, but for the last 3 years, every night, I had to give a growth hormone shot to my kid. This is not going to stop anytime soon. As a father, that is certainly not the time of the day, I look forward for, but what keeps me going is the smile and game my kid plays when doing that. At the end, it is still a shot and the kid is getting used to that pricking pain every day in front of my eyes. As a parent, I cry everyday looking at the smile in his face.
The most cruelest thing I go through as a parent is, when my kid cries all of a sudden. I don’t know if he is crying because of hunger, pain, uneasiness due to a wet or dirty diaper, wanting to go out of the house to play or a walk, need something to chew or bite on, or plain simply the fact that if he is frustrated that I am not understanding him. There is no way for him to tell me that. I also want to cry at the same time because as a parent I feel helpless in those moments.
I am not a negative guy, in fact in all of these scenarios I am super positive and have enormous faith that it will all get better for Adhruth. I can keep running with the energy derived from my Faith in HIM, but I want to save my energy for running with my kid and not answer the typical questions like “I have been calling you but you don’t answer”, “Why are you making a big fuss about this”, “I have called you 10 times, but you call me back only 4 times”, “He will be all fine”, “Go to that temple and do this pooja and he will be normal”, “You should try this food and not that”. The only answer I have for all this is “I will leave Adhruth for a day with you and switch off my phone and see if you still have these questions or suggestions for me after that”. That being said, Adhruth is the boy I want in my life. He is the sweetest and one who is revealing a lot about myself to me.
As I go through these, all I expect from you is a hug and tell me its not my fault and I am doing great, offer your shoulder for me lean on for a support when I am tired after long runs, a mind to contemplate and know my life is different than yours, a kind heart to empathize what I go through, ears to listen to when I go on a rant after a bad day without any interruptions or questions and a face with a beautiful smile. With that additional support, I can go on forever…
Your “want to be a friend” from the other side of the Table.