I commit myself to thee.
After the adoption of our youngest child and her immediate hospitalization from end-stage heart failure, I began to receive emails and messages via social media from some of the dozens of families who had reviewed her file. One of the families wrote something that shook my soul and has remained with me for the past four and a half years.
“If we had chosen to pursue her adoption and had found her in the condition you did when we arrived in China, we would have had to leave her there since we have no experience dealing with anything like this.”
I was stunned. I read those words as I sat next to my daughter’s bed in the CICU. She was on the ventilator and on ECMO life support. She was characterized as “the sickest 10% of the sickest 10%” of children that the hospital, one of the most experienced and highest volume heart failure/transplant centers in the U.S., had treated. My husband and I, just like that other family, had no experience being in that situation. Neither of us had a Ph.D. in parenting a dying child. We did not have medals in courage. We had not earned degrees in being separated as a family for months. We were no different from them.
“Had to.” What powerful words. I have reflected over and over on her selection of those particular words, how they served and fed into her narrative, and how utterly untrue I believe them to be.
There is always a choice. It may be excruciating. It may be laden with guilt. But to tell ourselves that we have none is just a way to exonerate ourselves from the responsibility of commitment that will follow if we choose to parent the child whose fate we, quite literally, hold in our hands. This is not to say that not choosing to pursue a particular special need is inherently wrong or immoral. But let us all own our choices, and not hide behind the facade of powerlessness.
We say, “can’t”, when really it is, “won’t”.
We say, “we are not equipped to”, when really it is, “we don’t want to equip ourselves to.”
Now before anyone jumps down my throat, let me be very clear that I absolutely do not feel that families should pursue medical needs in children that are beyond what they want to take on. They should not choose a child out of guilt, and they should not choose a child out of a romanticized vision of adoption.
But I chose to write “want to take on” versus “can take on” for a reason. I firmly believe that we must all learn as a community and as individuals to be brutally honest with ourselves, and to not tell ourselves that we are incapable of taking the hard road. If we don’t want to trek down it, that’s one thing. But own it. Accept it. And be sure to figure it out before committing to a child.
And I will go so far as to say, we should figure it out before reviewing files and holding children’s files up as we look desperately for reassurances that the child’s road will not stray from the one we wish to travel down, especially in the cases of agencies who only permit one family at a time to review files.
The difference between “don’t want to” and “can’t” may seem subtle, but it’s the subtleties that can make a huge difference in how we perceive our own capabilities.
If, as an adult, I tell myself that I can’t parent a child with an intellectual disability and the child I have just adopted turns out to be diagnosed with one, “I can’t” may become the convenient way out that I am looking for, as “can’t” removes the responsibility from ourselves. It takes our power away. It offers us absolution.
But if I entered into the adoption process telling myself that I didn’t want to parent a child with such a disability and then am faced with that diagnosis, I very well might just straighten myself up and tell myself that not wanting to take on this need is not a justifiable reason for breaking the commitment I have made. I may grieve. I may feel anger. But I may very well find the strength and resolve that I never knew I had.
It was there all along, of course, but it’s easier to find it hiding behind “I don’t want to” than from behind “I can’t”.
We also need to cease attempting to separate a child’s written file from the possibilities that are inherent in their diagnosed medical need. For instance, if a family is considering the adoption of a child with complex congenital heart disease, they need to truly listen to experienced families and physicians and understand that the worst case scenarios may very well present themselves. No matter how reassuring the file looks, no matter how many updates are requested, no matter how many more tests are performed, it cannot be guaranteed that the child will not be sick.
This has been said time and time again by agency personnel and seasoned adoptive parents, and yet there are still families that submit LOI for children with the hope that those very real possibilities do not come to fruition, only to choose to disrupt when they do. Time and time again I speak with families who wish to adopt very complex children, but who simultaneously want assurances that the child’s road won’t be, well, complex.
When I was Rini’s advocate prior to deciding to adopt her, I heard the same declaration from countless families who had happened upon her photo on an agency photo-listing… a photo of a vibrant and lovely child: “We feel drawn to her. We believe God has chosen her to be our daughter.” And yet, those same families fell silent and backed away when told by cardiologists that her road would be difficult, that she was very sick, that a child like her might need transplant or not be a candidate for even that. There is no shame in that. If they did not wish to parent such a child, so be it. But did God only mean for her to be their daughter if the road was smooth? Or were they confusing God’s will with their own desires?
Years ago, I was participating in an agency webinar. The time was around 2007-2008, when the non-special needs process was continuing to slow to a standstill while the special needs program was gaining momentum. A prospective adoptive father was participating, and as the agency personnel were explaining to the families that there really was no need for families to sign on to adopt healthy, as-young-as-possible female infants anymore, but that there were many other children who desperately needed families, he said, “So it sounds like there’s no need for my wife and I to adopt from China then. We only want to adopt where there is a need. That’s God’s will for us.”
The agency person said, “There is a need. There are so many children who need homes. But the profile of those children is no longer healthy, infant females.”
He then stated, “Well, we really feel we are supposed to adopt where we are needed. So it looks like we should look at other countries. Can you tell us where there is a need for adoptive families?”
I was bewildered and frustrated. This exchange went around a couple more times. He simply did not want to admit that what he and his wife wanted was a healthy, infant child. Rather than state that, he kept trying to convince himself that there was no need for adoptive parents for Chinese children anymore, period.
I have thought of that conversation so many times over the years. Why wouldn’t he come out and say, “We aren’t looking to adopt a child with medical needs. We don’t want to adopt from simply anywhere where we are needed. We are looking to adopt only from where families are needed for healthy infants.”
There is nothing wrong with desiring that. So what would admitting that have opened up for them? What was so threatening about it?
What is the motivation to adopt?
A woman wanted to know if there were still lots of “heart warriors” available for adoption. She explained it was put on her and her husband’s hearts to parent a child with heart disease. However, there was a catch. They were only interested in females, under the age of two, whose heart disease had already self-healed. They were not open to any catheter-based interventions or open-heart surgeries. They both despised hospitals and were not open to spending any time in them.
So in a nutshell, they wanted a young, female “heart warrior” who was basically void of heart disease. Why heart disease? And specifically, why did she choose the term “heart warrior” to describe a child who for all intents and purposes, wouldn’t be fighting heart disease if she indeed fit the health profile that the couple desired? What did that term represent to her? What would it give her?
From where I sat, it was a dangerous desire. Yes, we all have the right to choose what we wish, but having an expectation of control is dangerous. Narrowly defining what we are open to within a need that has a very wide range of possible outcomes can be a recipe for disaster for a vulnerable child.
I liken it, albeit in a very simplified way, to a woman stating on a dating website that while she’s open to men who have a genetic predisposition to early hair loss, she only desires to see the profiles of men who haven’t lost their hair. That is fine, but where it becomes problematic is if she leaves him at the altar if he suddenly begins to go bald before the wedding, or she chooses to file for divorce if the hair loss begins after married life has begun. What would motivate her to be open to a spouse with a need, or the myriad needs that may present with the main one, if she wasn’t truly committed to living with what it could bring into her life?
Could it be that there are families who feel that adoption will somehow give them membership to some type of club? Do they feel that they are checking off a box on a list of good deeds? Do they feel they need to “give back” for the life they are currently enjoying? Could they be hoping to receive attention or accolades for “saving” a child, but intend to adopt a child whose “saving” will not be challenging, gut wrenching, inconvenient, or heartbreaking? Like the family hoping to adopt a “heart warrior” without heart disease, do they want to enlist in the army but only without the possibility of ever having to go to war?
What is the motivation to adopt, and to adopt a specific type of child? What would be the motivation to pursue a complex, cyanotic “heart warrior”, but then withdraw LOI months later when an update states that the child has significant delays, or for a family to choose not to proceed with the adoption once in China after it is learned that the child with complex heart disease is actually sick with heart disease?
What would be the motivation to pursue a child whose medical need is well known to be connected to various syndromes, including those with potential developmental/neurological implications, only to disrupt the adoption a couple of months after homecoming when it’s found that the child indeed has a syndrome that may have the cited implications?
Understanding our own motivations for adopting are crucial if the rising tide of disruptions is to change. I don’t have the answers, but I think the questions warrant consideration in the face of how many disruptions take place within the world of adoptions from China. I’m talking about the disruptions of adoptions in cases where children present with medical conditions, developmental/neurological issues, syndromes, et al that are within the scope of possibility within a particular diagnosis, however remote. And this includes the behaviors and delays that are to be expected in any child who comes from trauma, has experienced disrupted attachments, has lived in an institution, or has suffered the loss of a loving foster family. In a nutshell, all children in the world of adoption.
Every single one of my five adopted children have medical or other needs that we either were not expecting at all, or were within the realm of possibility when considering their main diagnosis. All of them have been affected to one degree or another by their tough starts in life.
I have sat in TAG meetings at my eldest child’s high school, listening to parents obsessing over SAT/ACT scores and university acceptances, and I have also sat in IEP meetings at the elementary school talking about my developmentally delayed son and my intellectually disabled daughter who approaches every challenge in her life with the brightest of smiles and a can-do attitude that brings tears to the eyes of her instructors. I have watched one of my children compete in state gymnastics championships, and I have watched another compete in the Special Olympics. I have listened to cardiologists deliver the best possible news, and I have listened as they outlined our choices for end-of-life hospice care for our child. I have children who will most likely live independent lives someday, and others who will probably bless us for the remainder of our lives with their presence in our home. I have children who have an expectation of a normal life span, and others who do not.
In response to a post on a disruption that occurred in relatively recently, I wrote,
“There’s a deeper issue here, I think. It’s not just about educating ourselves regarding what possible diagnosis may accompany a particular medical need. It’s about defining what love truly is, and what commitment truly is. These children are not a package that arrived from Amazon that turned out to not be what you expected, so you process a return and send them along. These are human beings, and we as the adults need to look long and hard at ourselves and decide whether we’ve got the guts, the willingness to sacrifice, the emotional and physical fortitude, and the belief is something greater than the fairytale life we envisioned, to move forward in adoption and parenting.”
Several years ago, I was heartbroken when a family who had pursued a cardiac child’s adoption for so many months left her in China in critical condition. It struck me deeply, as the child was in similar condition to my youngest daughter… emaciated, unable to eat, and in heart failure. We had been given the opportunity to back out while we were in China. We refused. Then China made the decision for us by blocking her adoption. We fought. We were terrified beyond belief. We were thrust into a world that was foreign to us.
We are so grateful that we were. I know how much God loves me by the trials he sent and how they have sculpted me and my family.
After that disruption, I posted the following on my Facebook page.
“In sickness and in health, for better or for worse, ‘til death do us part. I commit myself to thee.
I commit myself to thee.
Whether in marriage or adoption, there is commitment.
We did not expect to find Rini in the condition we did in China.
We were told we shouldn’t adopt her. When that didn’t sway us, we were told we couldn’t adopt her.
We were afraid. Terrified. But that type of fear is not of God. And we believe that, “Courage is not the absence of fear. It is action in the face of it.”
A CHD was disrupted in China. There will be those who will view this post as my being unsupportive of the family that disrupted, lacking in empathy for people who find themselves in the terrible situation of meeting a child whose condition was far different than they expected. Nothing could be farther from the truth. Anybody who knows me would probably tell you that I am an extremely big-hearted person, full of compassion for others. I have a tremendous amount of empathy for the family. But I am also the mother of a child who was in the ICU and dying on the day we met her. We were given every opportunity to bow out gracefully, without blame, without judgment.
I commit myself to thee.
Fear is a very powerful force. I do not know the details of why the family made the decision they did. I heard through a mutual acquaintance that the adoptive father “…didn’t think he could deal with her being so sick.” And I do feel deeply for them. That decision was not easy, I am sure. But there is a child on the end of that decision.
My heart has been broken all day… it is broken for the feelings that the family will need to work through; for the horrible hold that fear has on people and its ability to control their actions; for the missed opportunity to witness the incredible evolutionary power of love and commitment and medical care; and for the lost opportunity to grow from pain, sacrifice, monetary debt, anxiety, depression, inconvenience, and the loss of the lifestyle that the family once had.
My family has experienced all of the above over the past two years. None of us is the same person we were before. Our hearts were pierced and torn and we have been piecing them back together. Now, they are bigger and stronger than they were before.
But mostly, my heart has been broken for the child.
My hope for the adoption community and for all of the children is that people will consider all possible outcomes long before they ever get on that plane to China.
There are always those who say, “Don’t judge! You never know the decision you will make when confronted with a child who is far sicker than you expected.”
I do know. I was that person.
I commit myself to thee.
People then say, “Everyone is different. We all have different strengths and weaknesses.” In fact, I have said that. But when push comes to shove, it comes down to commitment.
I commit myself to thee.”
Because if you are open to a child with complex congenital heart disease when she’s like this…
Then you are also open to her when she’s like this…
And if you choose to adopt her…
Then you are also choosing her…
…because we shouldn’t commit to an idealization of a child. We should commit to the reality of a child, even if that reality is a remote possibility.
Even if it is petrifying and feels almost paralyzing if it comes to fruition.
Even if it’s not what we were “open to”.
Because once we have committed, it should be too late for walking away. We’re in the trenches. We have the choice to truly and actively love.
What will your choice be?