Sunday, March 21, 2010

The ABC's of ABS

Butter and a photo book being sent to Sonalika

Devi with the package in route to the post office.

Siblings, sisters, baby’s are all open topics of conversation lately. Aimlessly wandering through our thoughts, all three of us have stumbled upon interesting scenarios to consider. Mom is thinking we need more car seats, has Treya taken her first steps? and secretly hoping to shop for a few new cute things. Dad is thinking about more insurance, yay for two soccer princesses, and how will we split that financial pie four ways. Devi is consumed with questions; can I hold her, can we sleep in the same room, can I teach her to brush her teeth? (As far as we know, she doesn’t have any teeth yet so Dev may have to wait on that last one) Indeed all of us are lost in thought, and spend most of our dinner conversations discussing a wee one who has no idea we exist, but whose picture joins us nightly at her spot at our table.

In all of these dreams of our future is another very real concern. When Treya arrives home, she will be in need of surgery on one hand, one foot, and possibly other limbs to improve their functionality. She has Amniotic Band Syndrome and in her case was born with club feet with shortened digits on her hands and feet, some of which are webbed. ABS occurs when there is a partial rupture of the amniotic sac. Fibrous bands of the ruptured amnion float in the amniotic fluid and can encircle and trap some part of the fetus. Later, as the fetus grows but the bands do not, the bands become constricting. This constriction reduces blood circulation, hence causing congenital abnormalities.

We have considered how to approach these physical differences we have with Treya, to best help bolster a healthy attitude and self esteem regarding her hands and feet. The conclusion is that the physical appearance of her limbs does not define her, but rather is simply part of who she is. Profoundly, it is this rare constricting of cells in the womb that has made our union as a family possible.

No doubt, when Pat, Devi and I are in public now, we attract stares, get comments, and are openly approached by the curious. For the most part, we welcome the opportunity to dispel rumors about adoption, providing the wonderful truth to how rewarding building a family this way can be, while also answering the sometimes ridiculous questions of why we look so different. We observe the puzzled as they try to piece together the past relationships we must have had to produce such a beautiful brown child, when clearly Pat and I are lily white. Comically, the result has lead us to feel positively connected in our community and recognized where ever we go. Therefore we will continue to openly embrace these new differences we face in Treya as just one more remarkable wonder that make our completed family unique.

Devi, through the wisdom and sweet innocence of her three year old mind, was instrumental in helping us to realize all of this. With the concept of a baby sister reaching the level of understanding, we decided it was time to tell her about how ABS had effected Treya. I wanted to make sure I was ready with what to say, and how to say it, and be prepared for the questions. Lordy! the girl can ask questions sometimes!

Through the power of the internet I joined an ABS forum. The members are adults born with ABS as well as parents of children who born with it and it is also a source of support to mother’s who have suffered miscarriages and lost children due to ABS. They were a wealth of information describing their experiences sharing this news with siblings. Casual and factual was the best advice given.

Seizing the opportunity, one day as Devi and I were discussing what about us is the same and what is different, I turned the conversation to include her soon-to-be sister. Devi, who will have dark hair like you? Who will have dark eyes like you? Naturally, she took the bait and answered that Treya, her baby sister would have those likenesses. With Devi on my lap, I splayed her fingers on her open hands into my hands, more than double the size of hers, and told her that Treya does not have hands like you. I went on to describe that she does not have as many fingernails to paint as you and right now, does not have the same amount of fingers that you have. While explaining this I grouped three of Devi's fingers together on her left hand to physically show what Treys'a hand is like. I did the same to describe Treya's feet. Devi was quiet and diligently listened. She even held her own three fingers together as if reviewing what we had talked about. She was quite for a long time and finally said what mattered to her most...."Mommy, are her fingers brown like mine?" And that was that.

Since that day, we have casually brought up Devi and Treya's differences with her a few times and we are at the point where Devi can tell you unprompted about what about them is the same and what is different. It appears that the bonding process that came immediately with Pat and I to both our children, is indeed deep rooting itself in Devi too. Recently, Devi has, with assistance, started sending her own emails. Naturally, her number one request these days is to send an email to her sister!

Sending one of her first emails to Oma.

Lastly, a bit of behind the scenes news. Our dossier was originally sent to Hyberabad, as we thought that was where our child was. After a month of waiting, our dossier has yet to be sent from Hyderabad to Pune. This is of huge concern, as we can not move forward into the court process without it. Our agency is scrambling for us and it is the reason we would never attempt an adoption on our own. They are responsible for our sanity and a few more gray hairs, having faced similar road blocks before. Problems such as this plague would-be adoptive families and are such an intangible problem for most to comprehend, when all we are talking about is taking a folder of papers, putting them into an envelope, adding postage, and mailing it to an office 2 hours away by train. Yet, simple as it sounds, we are helpless to call, write or control the situation in anyway. We trust that this will resolve itself with our agencies expertise.

Learning to ride the trike all by herself.


Emily said...

I learn so much from you each time I read one of your blogs! I really like the way you've opened dialogue with Devi, allowing her space and time to take in the differences and similarities between she and her sister. And I know it is so very hard to sit waiting, waiting for that dossier to make it to Pune so that you can move forward. Just know that you made it through the waiting for Devi, even when it seemed eternal. Very soon, the process will be in full swing, and you will be one step closer to your beautiful Treya!
Emily :)

Peter and Nancy said...

How did I miss your last post?! So happy that you've received another photo of your dear Treya --those soulful, melty brown eyes are really something!

Thank you for sharing about ABS. We checked quite a few boxes for special needs this time around, and you just gave me an informal education about future possibilities.

Devi's understanding of Treya's differences is so sweet and simple. You did a good job explaining things, and Devi's warm heart will do the rest.
Hugs to all,