5 months and counting

Hello!

The baby came. It was a little chaotic, but he made it safe and sound.

Then the parents came (mine and husband’s.) More chaos, but also a lot of emotional holding/distraction that was very helpful.

Then we bought a house.

Then we sold a house. (2 days! Staging has been added to the list of my back up career choices.)

Its amazing how quickly our brain, once exposed to something different, normalizes it. Already I forget to mention Rayan’s limb difference to people and then am surprised when they are surprised. Most of our friends are quick to normalize things, with one notable exception, a playground mom, who I think was just dumbstruck and didn’t know what to do with her face.

My toddler, a very observant, precocious child, has never once acknowledged his limb difference. She’s accepted him the way he is, and while I know its probably just age/developmental stage related, it warms my heart. She knows to kiss his left arm when I ask her to kiss his “little hand”, so I know she knows. It just doesn’t matter. He’s her “baby brother”, her “whole thing face orca”, a brother to love and play with. She knows now to grab his hands when she leans in for a kiss because he will otherwise grab her hair.

And then there’s him. He is very different from her. Calmer. Always ready with a smile. Playful. Observant. Easy going. Refusing to roll over. (We’re working on it.) He likes to watch his (one) hand. I can’t help thinking that he is already hard-wiring his one-handedness, and wondering if having a prosthetic at an early age would change that wiring. We’ve made the medical rounds- Boston Children’s and Shriner’s and a few other places- most places now don’t recommend any prosthetic interventions at this early age.

We’ve taken him out and about. In public spaces most people just comment on how cute and chubby he is. Kids around 4-5 years of age are the most curious. One asked, “how will he grasp things without his hand?” I told her he would be just fine. She wanted to ask more (and I would have been fine having the discussion) but her mom shushed her. Another asked me, matter of fact, how his hand broke off. I thought that was funny. The young boy had a hard time grasping Rayan was just “born that way”. I was going to follow up with a dinosaur story (epic battle, boy slays dino, dino makes away with boy’s hand), but again, shushed by father. Oh, well.

I’ve met some wonderful limb different families. I’ve also taken to routinely reading stories about all kinds of special needs kids. They reinforce me in many ways. Knowing we are not alone. Knowing that we are blessed in a lot of ways. Knowing that his limb difference may either not define him at all or define him in a positive way. I still worry at times, but it’s a lot less, a lot different from what I had imagined.

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5 weeks and counting

Not much has been going on.

Or maybe, enough has been going on that I don’t worry about the baby’s hand as much as I think I should be.

Which makes me feel impressed with the human brain all over again.

I work. I am cleaning and re-organizing the house from top to bottom. I am still raising my toddler. I am teaching. Attending conferences. Cooking.

Sometimes, there are little flashes of realization.

Opening a recalcitrant packet of peanuts on a flight.

Watching my toddler walk into the house and impatiently unzip and shrug out of her jacket.

Watching her count to 10 (or 13) on her fingers.

How will he do this? Will he look at me (and her, and his father) and realize how different he is?

The limb difference community is full of hope.

“There is nothing my child can’t do.”

“I wouldn’t change a thing about her.”

“She has made me a better person.”

It sounds wonderful, but how much of the “unique” Koolaid can a child really drink?

Children are smart. They are like little computers that don’t have much use for political correctness. They look at others (and themselves) and know immediately what’s different.

Or what’s missing.

Once in a while, amongst the messages of hope and joy, a desperate cry comes through.

“My five year old wants to grow a hand.”

“She told me angrily she doesn’t like her special hand, that she wants two hands like her friends.”

“He hid his hand in all the photos.”

It’s hard for me sometimes to find a silver lining, to think of my baby as “perfect”. He will be flawed, like me, like his father, like his sister. No, not quite like the rest of us. He will be different. He will have to learn to deal with what he is given. He will have rough moments. I just hope and pray that he (and I) will come through those moments with grace.

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The second trimester ends.

It has been an interesting journey so far.

If you recall, dear reader, the first thing I did after we received our diagnosis was to download a book called “Five Fingers Ten Toes” on Amazon and read it overnight. It has a few reviews, all five star, as is common in books about differences. It’s a simple, honest book, written by a mother who raised a limb different child in a time and place where few resources were available. She survived on faith, humor and a strong community. When the kids grew up, she took a creative writing course and wrote the book. It gave me tremendous hope when I needed it.

The founder of the Lucky Fin Project later connected me to the author, who was just as open and sweet on Facebook Messenger, offering support and advice.

I quickly realized the limb difference community is different from most communities I’m used to- people are helpful and positive, and almost aggressively so. They seem to realize what you need even if you are hesitant asking for it.

Molly Stapleman from LFP also connected me with a few mothers in our region who are raising limb different children. Again, these ladies were incredibly proactive in reaching out and offering support and advice.

I read more. I read blogs, mostly. Living One Handed, written by a funny guy/pastor. Born Just Right, written by a very resourceful mother of an almost teen with a limb difference. Stream of Caitlinness, written by a one handed young woman/teacher. When I ran out of blogs about people with limb differences, I branched out. I read blogs written by people with skin conditions that make them stand out, people with dwarfism, people with autism, people who are wheelchair bound. I was particularly impressed by Don’t Hide it Flaunt It, an organization and website run by a NY based lawyer with a genetic limb difference who, as she says, “gave birth to her difference”, i.e. has children with same anomalies as herself.

I read “Double Take”, a brilliant memoir written by Kevin Connolly, a 23 year old champion skier and photographer who was born without both his legs. He didn’t shy away from describing the brutal realities of his life. I hope he writes more.

I spoke with a psychologist who has a limb difference. I met with one of the local mothers. I signed up for and missed a meeting of the Helping Hands Foundation, a group made up of parents raising limb different children. That was the day we had our only heavy snow of the season. Instead of driving to MA, I spent the day reading “When Breath Becomes Air”, a memoir written by a 36 year old neurosurgery resident as he dealt with a diagnosis of terminal lung cancer while finishing his residency. He and his wife decided to have a child after he received his diagnosis. His wife asked him if he really wanted to have a child, given that it would make his death more painful. His response? “Wouldn’t that be wonderful?” His contention, “We agreed that life was not about avoiding suffering, but about meaning.” hit home. So I re-read “Man’s Search for Meaning.”

Someone connected me to a (HUGE) group of physician mothers on Facebook. From there I was directed to two subgroups, one of desi women physicians, from one of whom I procured a fresh yogurt starter when mine went bad. The other was physician mothers’ of special needs children. More connections forged, more insights gained.

At the recommendation of someone in this last group, I am now reading “Far From The Tree”, a beautiful book about raising children who are different. I’m also planning to meet some of the local Helping Hands mothers on a playdate. I went for another ultrasound today, with the same doctor as the first one. He had a medical student with him. Today we laughed and joked, about a materno-fetal medicine fellow who was going to join them but didn’t, about the baby and the fibroids and who shall prevail, about pregnancy induced dementia.

In the meantime I’ve taken to calling the baby Luke. I saw a onesie which had a one handed pirate monkey on it and almost bought it. As my toddler obsesses over fingers and paws and mittens, I wonder what she, an exceptionally perceptive child, will make of her baby brother. For now she is content to occasionally kiss (or kick) my belly and I’m content leaving it that way.

 

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Hello! I’m blogging again..

..and here’s why.

Back in 2013 I stopped blogging- food was no longer all that interesting, and psychiatry was getting harder to write about. Offline life was getting more and more hectic- new job, new house, new child, and so on. I did not think the world needed to hear from me anymore.

Its 2016. I now have a child, a precocious two year old who lights up our life. I have a wonderful job, a wonderful husband and a home I love. We have a second baby on the way, and I have been feeling pretty smug with the way things have worked out.

Until a few weeks ago. I went for my 18 week anatomy ultrasound scan after work. I had been feeling well, with the first trimester fatigue subsiding. My OB had been joking with me, telling me how “boring” my pregnancy was. I used to tell him, “I like boring.”

That was about to change. The ultrasound tech told me she was having trouble seeing the baby’s left hand. Maybe he wasn’t cooperating. She had me pee, and then called in the doc. He was able to get the baby to move, but still could not see the left hand. He started to sweat as he told me the hand was “most likely missing.” He apologized. I heard myself say, “Hey, it’s only the left hand.” He said something about the left hand not knowing what the right did, and then start apologizing again. All I wanted was for him to leave the room so I could start crying.

Back in the car, I called my husband and my sister. Both physicians who deal with ultrasounds, they told me how unreliable ultrasounds were and we would wait for the repeat scan scheduled two days out. We all clung on to that little ray of hope through the tears and the bewilderment.

I did a few things anyway. I went to my birth board, and was quickly referred to the Lucky Fin project, an organization created by the mother of a young girl with a limb difference. I downloaded a book written by the mother of another young man with a limb difference and read it overnight. I read every website I could find about limb differences. By the time of the second scan, I had a fair idea of what we were dealing with. My husband accompanied me this time, and we both saw the missing left hand clearly. The doctor was different this time, a calm woman who told me, “I’ll cry if you will.” So we both did. She then gently told us that termination was an option.

An option? I consider myself fiercely pro-choice, but this wasn’t a choice. We saw a baby on the scan, a yawning, penis flaunting, playing-with-toes baby. A baby without a hand. If I lost my hand today, would I kill myself? And thus the decision was made. Did I revisit that decision in moments of darkness? Yes. But I always reached the same decision, again and again over the next few weeks. The husband never doubted the decision at all. In his line of work, it’s always “life over limb.” His friends said, “But this is your child.” He said, “that’s precisely why it’s even more true.”

What can I say, I married an idealist and a romantic.

So here we are. Six weeks out, and freshly back from a trip to the homeland. We shared the news with close friends and family. Everyone has been supportive, though the topic obviously makes some people uncomfortable. We’ve reached out to physicians in the field, to families, to friends and strangers. The limb difference community has been incredibly supportive. I still occasionally battle with “why my child?” Was I too smug? Did I consider myself too lucky? Did I not drink enough water? Did I squat too much? Why, oh why, did I watch that bloody lunar eclipse?

And then the baby kicks. I see pictures of other adorable kids and successful, happy adults with various kinds of limb deficits. And I know things are going to be okay.

This is why I’m blogging again. Because we’ve started another journey, one I that I believe will be worth sharing.

 

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Of guns

Newtown is half an hour away from here. When the shooting at Sandy Hook happened, I was at work. I could hear the clinicians talking about it in the hallway, and I started to Google for news. The details kept coming in. When it became overwhelming, I got off the internet, because I had patients to see. A lot of them, especially the parents, came in tears. I had to listen to them, stay with them in that moment, and be honest about my inability to offer much more than support.

It kept eating at me, though. The news on the local radio. The way the classic rock channel that I like (owned by a conservative corporation) went from saying “It’s too soon to talk about guns” to calling the President Loser of the Week for wanting to enact gun safety reform. When the opportunity to volunteer in Newtown came, I jumped at it. It gave me a chance to feel like I was doing something, even if most of it was sitting around in a school, chatting with middle aged counselors from nearby towns, more mental health professionals and therapy dogs than people who needed them in the cold evening hours.

I have an alien’s perspective on guns. India is not a hunting society. I grew up vegetarian, in a religion where any form of violence, even a mental “I want to strangle him!” is a sin. A significant part of my childhood was spent “rescuing” pests- ants, cockroaches, wasps- and releasing them outside rather than killing them. I never saw a gun until I was 13.

That’s when it changed. My father, a well-to-do businessman in a small town in a state that is considered The Wild West of India, was kidnapped. This wasn’t unheard of in election times. It was business as usual. They wanted money. The policemen came. There were long meetings that I wasn’t a part of. Policemen with guns sat around our house and the maid took them tea and biscuits. Four days later, my father came back.

The next day, a senior police officer told my father to buy a gun. He smiled at this, but applied for a license just the same. A month or so later, I saw my first double barreled musket up close. I could never imagine my father shooting at someone. Neither could he, and in a few days, the gun disappeared somewhere in my mother’s pantry. We never saw any bullets.

The next time I thought about a gun was when I took this job. One day a week, I was working in a substance abuse residential facility, the patient population mostly made up of felons under court mandated treatment. Some of them were sociopaths. They tried to charm me into giving them a diagnosis that would lead to secure housing. When that didn’t work, they would try aggression. There would be pointed questions, about my car that was parked outside, my family, where I lived. They would talk about violence, about what they might do if they didn’t get the help they needed.

There were days I got scared. There were days I frantically looked up scales that would tell me the likelihood that they would attack me, what I could do to make sure they didn’t. I didn’t find much beyond what I already knew. I thought about buying a gun. Another few minutes of research told me that that was stupid, that I was more likely to be killed by my own gun than to be able to defend myself with it. So I didn’t.

Instead, I turned to my father and his faith. The good old hota swayam jagat parinaam– The World Takes Care of Itself. I will die some day, and I don’t control how/when. I will not be stupid. I will not own weapons that are likely to kill me/my loved ones/or even complete strangers. Children. Innocents. I will volunteer at all the Newtowns where I can. Because I know there will be others. As long as there will be guns.

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Election 2012

I read two articles in the newspapers today, one about Governor Romney’s 2011 tax returns and the other about a welfare mother. (Remaining cognizant of the fact that this is the NYT, a newspaper with a liberal bent.)

It made me think about my role in this society. I am a legal alien. I came to this country as a student and went through specialized psychiatric training. I invested a huge amount of my own money to start the process and was then paid a salary by my training programs, in return for the patient care I provided as a trainee. By general consensus, medical trainees provide a lot more skilled labor than they are paid for. While training as a specialist, I worked 80 hours a week, took overnight calls taking care of extremely sick patients, and made anywhere between 30,000-50,000 dollars a year throughout my 5 year training.

At the end of this training period, my agreement with both US and Indian governments was to return to my country. But like most skilled immigrants, I wanted to stay. The US government allows me to do that if I promise to serve in an under-served area with a health professional shortage, for a minimum of three years. Before hiring me, a health organization has to prove that they advertized for an American citizen to take the job for at least 6 months, and no one did. I took one such job.

I now work for a Federally Qualified Health Center in an inner city area. All my patients are poor, most of them have Medicaid, with a small proportion being on Medicare and private insurances. I also see patients who do not qualify for Medicaid yet can’t afford private insurance- the center puts them on a sliding fee scale, and they are able to see me and their other doctors at about $20/visit. This adds up when you add the cost of paying for medication out of pocket, but thankfully, the 4 dollar drug programs from companies like WalMart allows me to make sure they have the bare bones medications they need.

What does this mean for me? Most days, my practice feels like trying to plug a hole in a dam with my finger. A vast majority of my patients have been too sick to work for years. This includes those with schizophrenia, those with severe bipolar, crippling depression, dementia, traumatic brain injuries, moderate-severe mental retardation.

Some people who come to see me have milder symptoms. Often, they bring in disability papers for me to sign. Sometimes, I have to tell them that, in my opinion, their mental health diagnosis is not enough to keep them from working. A lot of these people drop out of treatment when I tell them that. Some don’t.

Most of my patients live in a continual state of crisis. They don’t have transportation, or housing, or food, or money for their children’s school supplies, money to take their family to doctors who don’t accept Medicaid. I try to see them often, because every month brings a new crisis. “I lost my visiting nurse because the insurance said I no longer qualify.” “I can’t afford physical therapy.””I went to interviews, but no one will hire me because I’m old/have a prison record/have visible tremors/am overqualified.”

I work as hard as I can. The clinicians I work with often double as social workers for these patients, helping them finding crisis housing when they lose their apartment, filling out paperwork for them to be brought to the doctor’s office when their clunker dies, finding vocational opportunities that allow them to find work, even if a few hours a week.

For this work that I do, the government pays me a salary that puts me squarely in the top 10 percentile of the income distribution. This salary is considerably lower than what other specialists make, and considerably lower than what I would make if I were in private practice, or employed by a for profit hospital or university. It is more than enough for what I consider a very comfortable life.

And I’m grateful for this. I’m grateful for the opportunity to remain in this diverse, open country, grateful for the opportunity to do what I do best, grateful that my 30-35% taxes pay for this health center, the roads, the traffic lights, the police, the EMS, urgent care centers, housing shelters, and yes, various forms of government assistance.

Because I come from a country where there is no government assistance. Every day, I’m aware of the fact that most of my patients, had they been in India, would either die, or resort to begging on the street in order to survive. This nation allows them not to do that. And for that, I’m grateful.

*Disclosure- I am neither a Democrat or a Republican. Being on a visa, I cannot vote. Like most Americans, I try to see beyond the smoke screens both parties put out. I don’t completely support either side, but have a clear bias towards one.

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