The wanted one

October 6, 2009 by nohandsbutours Maia 10 Comments


Possibly the most unexpected revelation in the course of our special-needs adoption came when the three of us, my husband, our daughter and I, waltzed in to our first cleft clinic at the hospital we had chosen for our daughter’s surgeries, eager and full of anticipation. At the time, we had been home for just five months and our daughter had been through only the first of two major surgeries to begin repairing her clefts. During the clinic, her first surgery would be evaluated by five or six different specialists, and a plan laid out for her future surgeries, speech therapy, and dental work.
QQ during her first two months at home.

When we met QQ, she was 11 months old with a very broad unilateral cleft lip and palate. Rather atypically, she had not had her lip surgery done while still in China, so her entire cleft was still wide open. When she smiled, which she did frequently, the gap was nearly an inch wide. Once home, our chosen surgeon felt the timing was optimal to close her palate as soon as possible, and so we had her first surgery done just two months after coming home. That first surgery included a complete closure of the hard and soft palate (very successful, with no fistulas or tears post-surgery) and a partial closure, or “tacking” of the lip. Our surgeon chose not to close the lip entirely on that first visit in order to let the muscles relax into their new position, thus hopefully allowing for a more successful closure on the second visit. Our surgeon felt this was the best method based on the rather extreme width of our daughter’s cleft and the fact that it had remained unrepaired for almost a year. Her second surgery, and the full closure of the lip, would happen in the early spring, some six months later.

QQ after her first surgery, lip still only partially closed.

When we walked into that first cleft clinic, it was with a giddy sense of anticipation. We were almost goofy with the joy of our new family and the plans we were making for the future. The first surgery had been difficult for all of us – a long, sleepless night in the hospital, and three solid weeks of medication and sleep deprivation to follow. In spite of that, the whole adoption journey had been such a wild, spinning, joyful adventure that even something as grim as planning for future surgeries made our cheeks ache with spontaneous smiles. It isn’t that we didn’t take the process seriously – oh, we did! Like avid freshman on the first day of college, we were eager to take copious notes, do thorough research, pay attention to every detail, and carry out the doctors’ orders like the good students we so genuinely hoped to be.

So it was a bit of a shock to us to walk into a conference room and find ourselves in the thrall of a distinctly funereal atmosphere. Immediately, we tried to adjust our faces and sober our attitudes to fit the general mood. Something was definitely amiss, but, in the haze of our post-adoption bliss, we were hard-pressed to put our fingers on what it was.

As the discussion portion of the clinic began and progressed, we quickly came to realize that this portion, prior to the surgical consultations, was something like a supervised therapy session. Hospital employees were scattered among the families at the long conference table, opening up topics and venues of discussion. For comfort, a banquet table was set with sandwiches and juice bottles. Grievances were aired, and families were encouraged to share their struggles and fears.

In the thick of that forum, my husband and I found ourselves at a loss for words. As other families talked of their turbulent therapy sessions and post-surgery snafus, their grief over their child’s condition, and the long process of coming to terms with it, we found we had nothing to add. We would have been well-prepared to share the vast and myriad pleasures of our early months with our new daughter, our amazement at our good fortune and the rampant joy that she had brought into our lives. But our contributions seemed irreverent in the face of the angst that we saw in the grim, exhausted faces of the parents around us. For these families, giving birth to a child who would need years of surgeries and therapies was profoundly traumatic. For us, having chosen this child and her condition, it was the greatest gift of a lifetime. What a contrast! What a revelation.

We were, on this particular occasion, the only adoptive family in the group. All of the other children attending the clinic were biological, and many of the parents had been unprepared and even unaware during the pregnancy that their child was afflicted with a medical condition. Some of them spoke of the easy time they had had with their first “healthy” children, and what a shock it had been to find that their youngest was to be born with medical issues. Some of them spoke of the initial shock and subsequent lengthy grieving process they went through when they were informed of their child’s condition.

This was the first time it had ever occurred to me what a vastly different experience it is to deliberately adopt a child with a medical need, as opposed to giving birth to such a child. I had never considered the variance in perspective, and it took me by surprise.

To be honest, my husband and I made the decision to adopt a special needs child without a great deal of struggle or deliberation. Though we began our adoption journey in the “traditional” program, we switched into the special needs program just days after our dossier was logged in to the Chinese system. We had not initially researched or even been aware of the special needs program, and it had never occurred to us that children with medical needs would be separated into a different category. Once we learned of the medical needs program, we made the switch within a matter of days. It seemed right. It seemed logical. If children with medical needs were going to have a more difficult time finding families, and if we were prepared to do so, there was no question in our mind that we should choose one of these.

We had good medical insurance, a terrific support system, medical professionals in the extended family, and a stable home life. We knew that, even if we were to adopt through the traditional program, we would run the risk of our child having undiagnosed medical or developmental issues. We also knew that, had we chosen to give birth to a child, we would have run a similar risk. I myself, healthy and vigorous and athletic as I have always been, was diagnosed with cancer at the age of 29. No one could have predicted it. It
was a rough year of surgery and chemotherapy and several months of recovery, but I survived it. It was not the end of my world…far from it. So to adopt a child with a preexisting medical condition, one we had researched and were prepared for, seemed to us a very sane and logical route.

When we saw our daughter’s photograph for the first time, we felt incredibly fortunate. Yes, her cleft was wide and might present some surgical challenges, but she was otherwise healthy and vigorous, and the grin on her face in those first photos foretold her joyful and open nature. When we made it through the process, the paperwork, the wait, the red tape, and actually found ourselves in China with this amazing child placed in our arms, we felt like we had won the lottery.

I really had never stopped to think what it would feel like to give birth to a child with such a condition, with no preparation, without having chosen that route, done the research, understood the consequences.

I do understand that not everyone who adopts a child (with or without medical needs) has as easy a transition as we have had. I do know that we are fortunate in many, many ways. We bonded, the three of us, without a ripple. Our child is a happy soul, confident, social and loving. She walks lightly on the earth and sees the best in life. Not every adoption goes so smoothly for all involved. But I do see our daughter’s condition as a great gift – the one thing without which she might never have entered our lives. Why her birth parents were forced to give her up we will most likely never know. It may have been a cultural stigma that made it difficult for them to raise a child born with a cleft. It may have been the medical system in China, and their inability to afford the surgeries and therapies involved. No matter what the reason, I can’t help feeling incredibly, profoundly, miraculously fortunate that this particular child calls us her parents.

Our daughter will, at a conservative estimate, need a dozen surgeries (both major and minor) before the age of 20. She has currently been in speech and eating therapy for more than six months, and will most likely need therapy for months and even years to come. But far less than being a burden to bear for us, her condition is the one element that made it possible for her to be our daughter, and for that I will be forever, infinitely, and joyfully grateful.

- Maia



10 Responses to “The wanted one”

  1. Shirlee McCoy says:

    What a lovely post! Your focus on the positive is inspirational.

  2. Stefanie says:

    Is it possible to have goosebumps ON your goosebumps? I loved every word of this, I felt like I was in that room with all those somber faces and broken hearts.
    What an incredible perspective you have, it is so obvious that you are totally and completely in love and truly thankful to have your sweet QQ, every inch of her :)
    Loved reading every word, Maia!!

  3. Eileen says:

    There IS such a different feeling when a family has had the chance to prepare for a special need as opposed to being caught off guard. I'm on a Yahoo group for parents of children with Hep B and we frequently get posts by parents who didn't know about their child's condition before adoption. They got the news after the first blood draw and they're shocked and often do go through a period of mourning. It's understandable, and I think that's the beauty of a support group or of a well-written, insightful article like yours–people can look at others who've parented children with that special need and say, "Oh, Maybe I CAN handle that!"

    Thank you for sharing.

  4. Wife of the Pres. says:

    Very well written. Amazing!!! And I totally get what you're saying … and have had similar experiences though not in a room full of grief-stricken parents. Wow. What perspective you are able to share here and so humbly.

    I need to get back to my rough draft and work on it. :)

  5. Cindy says:

    Fantastic!!! I love this post!!!

  6. The Wanderers' Daughter says:

    Eileen – it's interesting, because after our second surgery we discovered that our daughter had potentially been exposed to Hep C by a nurse at the hospital who turned out to be stealing drugs and replacing clean needles with dirty ones. The anger, shock and mourning that I went through during the time we waited to find out her test results was indescribable. Of course, had we made the decision to adopt a Hep + child, our emotions would have been vastly different. When her results came back, she turned out not to have been exposed, and our hearts were light again – but yes, it's an interesting study in perspective. Makes one think, which is always a good thing.

  7. Kris says:

    as always, my dear friend maia, you leave me with tears streaming down my face while smiling.

    xoxo to QQ and you and that husband of yours. now start writing that book :O)

  8. The Gang's Momma says:

    Wonderful post. I have occasionally come across folks who have questioned our decision to CHOOSE a child with special needs. It was so hard to convey to them that I wasn't choosing a need. I was choosing to bring home my daughter. And really in the end, it was no choice on our part. God was in the details and He hand-picked her for our family. Along the way, with the varying degrees of news and long-term prognoses, we've also had similar conversations with folks about choosing it vs. giving birth unexpectedly to it. Your discussion here has helped me understand those parents' grief and shock as well as my own feelings of elation and belonging that I couldn't put into words when I was in those situations. Thank you.

  9. Yoli says:

    Beautifully said Maia and the pictures that accompany your post are just lovely.

  10. Amie@WildOlive says:

    WOW!!Maia,you know, I have never thought about it from that perspective. WOW! How differently parents who birth these children might view circumstances from those of us who feel God has chosen us for eachother, and who also consider it an immeasurable blessing to have been chosen to parent these "SN" kiddos. Thanks so much for sharing!

    :)
    Amie

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