There is no way I could have ever been prepared for the medical journey I have been on with my daughter. If anyone had ever told me that the things we have lived were in our cards, I would have never believed them. It seemed so far fletched...like something that happens to “other” people. Looking back, it still often seems surreal except for the fact that our lives have been immeasurably changed. I want to be that brave person who says in hindsight, “Our lives changed and we are so much better as a result,” but I cannot go there completely... yet. I tell this story both to inspire and as a cautionary tale.
I adopted my daughter at age 6, going on 7 with a limb difference and knew, even before I understood the full extent of her disability, that she would need a surgery or maybe two. Once home, I began the process of a ascertaining what her needs were including consulting with local and distant experts. I took comfort in the fact that while there were various options, it sounded as though we had time and I would be able to confidently involve my daughter in decision making around her future. There was one, non-negotiable procedure that needed to happen before she was eight years old. It was something that would make all of the difference to her future development and pain management. I scheduled this procedure and even happily made life adjustments including stepping out of my role as a middle school principal to be ready for her recovery.
Making Medical Decisions
All was going to plan until a few weeks before the surgery, when we met with the surgeon and he dropped a bombshell on me. Suddenly, what I thought would be a large maintenance procedure had the potential to be THE surgery - the one that would define how she would walk for the rest of her life. It hadn’t been an option to consider yet before and frankly, I was glad. The decision about this was one I wanted to wait on as it would be major and impact her (and me as well) in many ways. I had truly hoped to have more time as the next step was something I was not ready to embark on yet.
How do you face a difficult decision when the surgeon is saying that I could save my daughter another surgery and long recovery? How do you respond when the surgeon says that “clearly my daughter wanted it.” In fairness, when asked she did, but her thinking had much more to do with what she was able to keep in the near term vs. any long term outcomes and it was coming from a 7 year old. I was blindsided and felt that I needed to make a decision. In the end, I decided to go with the full procedure. I reasoned with myself that the discomfort was mine and I was selfish to make my daughter endure more surgeries than necessary. I told myself to believe in the experts and allow them to do what they thought was best.
It was the last time I will ever not follow my gut instinct.
Learning and Advocating
And that is the crux of this writing. I won’t go into explicit detail but the basics are that things went wrong. My daughter underwent many months of hospitalization, multiple surgeries and procedures, some several states away from our home. When we talk about threat of harm, we often can hear, “life or limb threatening.” In our case, it was limb, but her life was also in danger at various points. From the moment things started to go wrong shortly after her first surgery, I was suddenly in a fight I never wanted and that in several ways, continues today. What I can take away and share at this point are things that I feel any family, hopefully not facing such dire circumstances, can use in dealing with medical issues with their children.
First...learn everything you can and them some. You will become the expert on your child’s condition. Ideally, it should be the doctors and nurses but in the end, it will be you because you are the connecting thread. Even with the best of care, you are the one who is there and experiencing everything. The medical professionals come and go, especially in a hospital setting and even with many precautions in place, things can be lost in translation. If, heaven forbid, you are in a situation where perhaps the medical professionals are not living up to their code of ethics, you will be the one sounding the alarm. I have seen a very dark side to medicine, medical care, doctor's egos and liability. In the end, there are few who will or even can accept responsibility for the care of your child so again...it falls to us as the parents to be as educated on on top of things as humanly possible.
Advocate for your child and yourselves. In our case, just a year into adoption, I was being told I would need to be doing things that would absolutely break our bond, create much more trauma by my own hand and that were doable in other ways. Find people who understand your situation as an adoptive parent and who will support you with trauma informed, connected practices. I still ended up with a child who endured horrendous trauma but instead of me having a major hand in it, she was able to see me fight for her and be by her side vs. being part of the pain.
That brings me to the next piece. Be there. I know this is very hard, however, it is also essential to be sure you can be the best advocate for your child. By saying, “being there” I mean physically and emotionally as well. In a physical sense, while my child was hospitalized, I needed to be there almost 100% of the time. I am a sole single parent so I really was the only one who could fill that role. In the first two months of hospitalization while we were still in state, I went to my house twice for some supplies and left once to visit my very ill grandmother. Those trips took a few hours each. I got some other, slightly shorter breaks when I had very trusted friends or family come to grab some food or air BUT… each time away took a toll. She was often very upset and it took a lot of time to get “us” back on track. I also always seemed to miss something happening. A new issue or a specialist visit. I may have missed an important piece and then be scrambling to get information. I always felt the implication that while I was out, I was not truly caring for my child. A note on the door from a social worker or nurse seemed to chastise me for taking a tiny bit of time away.
Of course, the flip side of the coin is self care and I needed those times so “being there” can also be done by other trusted family members and friends. I wish I had asked them to video or audio tape conversations with anyone who came into the room while I was not in there so that it would have been easier to put the pieces back together. Once living out of state, I again lived in the hospital with my daughter. That was another challenge as I did not have the same network of trusted friends and family although, it was utterly amazing how I ended up with people who had previously been strangers stepped up to help and who quickly became lifelines for us. Finding ways to take care of self while being there was immensely challenging and I found myself needing and accepting help in ways I never imagined I could. The lesson here is...when you need help, accept it.
The other form of “being there” is trying as much as possible to connect with your child while in the medical crisis. It is SO hard when living in cramped quarters for days and weeks and months on end. I wanted to climb out of my skin some days and was just feeling done. I don’t know exactly how I dug so deep, but I really worked at being there emotionally. Once she was asleep was my time to let down. Binging on TV series, convos with friends and yes, I did have some special type of fruit juice smuggled in at times as well. Whatever it takes for you to be able to be present for them, do it. Over a year later, my daughter now can identify on some level just how scary that was or her and how upsetting it was in those rare moments I was not there. She gets that I worked hard to be able to be there and knows it was far from easy. The toll on me has been lasting, but I think that the price paid would have been much higher had I not been able to remain as present both physically and emotionally.
Every story is different and every story is so difficult when it comes to medical issues and our kids. Every crisis we go through with our children is excruciating. In the end though, we DO know best. Follow your instincts, listen to your gut and be there as much as possible in every way. It is the hardest fight, but one so worth going all in.