When I first pitched this article, things in my life (and the world) were quite different. I had this article on my mind back in January 2020; the Christmas season had just ended, and a new year had begun. The beginning of a new calendar year always feels so fresh and clean to me, and I love the atmosphere as we plan and look ahead. Our six-year-old, adopted daughter had just had strabismus eye surgery in both eyes, a frenectomy of her lower lip (after her gums started pulling away from her teeth, exposing the root due to a piece of tissue holding her gums too tightly to her lip), and she was slated for her second G-tube (feeding tube) wean. Everything was set, everything was taken care of, and from this point, we could move on from our past life of intense medical issues and focus on our journey as an adoptive family. We could finally live free of medical strife.
That was not to be.
Memphis started on a nasal-gastric (NG) feeding tube at 2 months old after she was diagnosed with failure to thrive. Memphis was our foster daughter at the time, and we had no idea if, or when, she would get off her feeding tube, or if she would be able to live with us permanently. By 8 months of age, she had purposely been delayed in the gross motor skills area, since rolling on the floor or jumping in her exersaucer made her gag and throw up with the NG tube snaking its way down through her nostril, through the throat, and to her stomach. The NG tube had to be taped to her cheek with large patches to keep it in place; but, if we didn’t leave enough slack, the tube flared her nostril out, and although we switched the tube out to the opposite nostril often, her cheeks always seemed to have red, irritated patches from all the dermal tape.
As she grew, she started to grab her tube, yank it out, and then howl when we buckled her in her bouncy chair (which put her at just the right angle) to reinsert it. Whether we were drawing back stomach fluid to put on a test strip and ensure the tube was in the correct place (the pH reading would guarantee the tube was still in her stomach and hadn’t moved up too high to a lung) or, later, listening for gut sounds with a pediatric stethoscope (because her meds at that time were messing with her stomach acids, changing the pH), it was nerve-wracking. I knew that a tube incorrectly inserted into a lung instead of a stomach was dangerous.
At 8 months old, Memphis showed no signs of being able to come off her feeding tube, so her doctors decided to surgically insert a more permanent G-tube in her abdomen wall. And, we were still waiting to see if we would be able to adopt her.
Fast forward a couple of years: we were finally able to adopt Memphis, which was a dream come true, and she was about to undergo her first trial tube wean at Children’s Hospital. Since this was 14 hours away from home for us, we were set up in the Ronald McDonald House, which is an incredibly posh set-up considering the situation. It was newly built at the time, and I remember feeling blessed to be able to stay there.
Daily, Memphis would go to the hospital at breakfast and lunch to sit with occupational therapists and feeding specialists to “learn” how to eat. She was given a variety of foods to play with and was encouraged to explore food. Because she didn’t really ever eat based on instinct or hunger, this was all new. The specialists explained to me that children who don’t hunger or suckle on a bottle can be missing the component of regarding food the way most older children do. Memphis needed to learn to be interested in food, put it in her mouth, chew it, and swallow.
The team was fantastic and very encouraging. Sometimes, Memphis would be in nothing but a diaper, happily playing with yogurt on a tray before we would try to coax her to eat it. The staff had warned me that a trial tube wean can seem ruthless. Memphis was weighed daily, and her team was prepared to let her go a considerable amount of time without eating or drinking in order to try to jump-start her system back into instinctively eating. They warned that she may be very fussy, and maybe even lethargic. If it got too bad, they would put her on IV rather than use her tube again. Looking back, I remember being so homesick for my husband and other kids, and so incredibly sad that we had to put Memphis through this.
The trial tube wean when Memphis was 2 was not a roaring success, but it wasn’t an utter failure either. We came home with a child that was eating more orally than she ever had in her life, but it didn’t last. Within a month, Memphis was losing weight again and was put on overnight bolus feeds, a plan that would last the next several years. Mem’s specialist team was concerned.
Memphis had also started having severe headaches, and I felt it was due to dehydration. I had been trying to get her to drink more water orally, but she wasn’t interested. I had resorted to putting water through her tube up to 3 times a day, which felt like a huge setback. We also had to increase the amount of formula we put through her tube because she just wasn’t eating well enough. One afternoon, I was giving her a back rub, and I gasped—her back was covered in a thick forest of fine hair.
Her team was concerned that on top of the headaches, her body was responding by creating these fine hairs—lanugo—because she wasn’t getting enough nutrients. Although her canned formula is a complete diet, humans aren’t meant to live off of a liquid milk formula. Our options were to start giving her injections to meet the vitamin and mineral requirements her body needed to meet…or, attempt another trial tube wean.
One of Memphis’ amazing specialists, after much thought and examination, decided to treat Memphis for an aversion to food—almost like a fear of food. With that, we kicked off her second trial tube wean near the end of January 2020.
A while back, I wrote an article about dealing with medical strife in the life of an adopted, special needs child. I was so excited to write this article about “Moving On”—getting past the medical mess, and back to a more typical life. No more intense hospital visits, no more medical travel, no more trauma for a child who is terrified of hospitals and procedures. For many of us parenting special needs adopted kids, this means getting back to dealing with the basics of parenting a child who has Fetal Alcohol Syndrome, or past trauma, or other challenges that are heaped on top of our already-full plates when you take on additional medical needs. I had mapped out this great, positive article in my head—Memphis had just had that eye surgery and was gaining weight like crazy on her new medication to treat her food aversion.
And then, enter the next glitches.
Not all things work out like we think they will. To be honest, if I had expected anything to go wrong, I would have guessed it to be her trial tube wean. Two things happened that I never would have expected; first, Memphis had persisting issues after her eye surgery.
My friend called me one night and said, “Memphis is complaining that our house is shaking…and she can’t seem to do the stairs.” I was worried. Memphis had complained a few other times that our house was shaking, and I didn’t know what she meant. That night, Tyler drove us through a blizzard to pick her up from her would-be sleepover so we could take her to the emergency room.
That particular night, it turned out to be more than a nine-hour wait at our local emergency walk-in center. The triage nurse, after taking a careful record of Memphis’ medical history, suggested that Memphis was likely reacting or still otherwise healing from her eye surgery. She suggested we go home, try Gravol, and call her specialist. Memphis would go on to see two visiting ophthalmologists who were both quite concerned with her odd, tic-like blinking that involved rolling her eyes upward repeatedly, or cricking her neck with each blink, as well as her intense headaches, covering her right eye, and complaining that the building was shaking. She was referred to another specialist 14 hours away, and we were told her symptoms would not go away until she had another surgery. By this time, Memphis was almost bedridden with headaches, vertigo, and dizziness.
Our appointments were all set, and we were ready to tackle this problem. We had been here before; we would survive again. But then unexpected thing #2 happened: COVID-19 came into our world and wreaked havoc. Flights were canceled. Out of town appointments were canceled. Elective—which does not mean unnecessary, by the way—surgeries were all canceled. Memphis was stuck in bed, debilitated by her symptoms.
Since then, Memphis has been put on a medication to help with her vertigo. She takes Gravol and Tylenol regularly (which I am uncomfortable with, but it is her only way to cope). We are waiting until the Canadian government opens hospitals up to elective surgeries again. Will that be before the pandemic passes, or will it be much after? We have no answers.
I was starting to wonder how I would write this article about moving on, and I felt stuck. But then, it sort of hit me. We are moving on because we have to. Aren’t we all pushed forward by the passage of time each day? We aren’t able to stop the clock from marching onward, even if we wanted to. I thought to move on, for us, would mean being free of the medical system, living life without any need for appointments and surgeries. Memphis has completed 2 ½ months of her trial tube wean and has gained almost eight pounds. Her body is moving forward and progressing. It is a miracle, and we are blessed every day by this! She is still suffering from her eyes, but despite this, we have chosen to move on. We have chosen, as an adoptive family, to take the good, to cling to it, and step into the next stage.
The pandemic may have thrown a wrench in our medical plans, but it hasn’t prevented us from being who we are. Memphis is dreading another surgery and always dreads her bad days of feeling sick in bed. At the same time, I see a child who is leaving the little child realm and entering an older child stage. Despite what is happening around us, she is moving on. She is maturing, and she is changing. Her reaction to her medical status isn’t met with as much fear now—rather, she is more resigned, and I do take that as progress.
Memphis is at an age where she is exploring her feelings about being adopted, and about her journey in life. As a parent, I am overjoyed to stand back and watch her take some ownership over her health and her feelings about what she has been through. It is exciting to talk about her adoption journey on a new level, and what her hopes and dreams are. While moving on hasn’t turned out to be exactly what I thought it would, I also now realize that moving on can’t be helped.
When we feel we have been stuck for so long, we finally start to move. Emotionally and cognitively, we start to shift and take on new perspectives. As adoptive parents, we have to deal with many issues that other parents do not. We may need to deal with desired openness or a dread of openness; we may need to deal with a strong desire to connect with birth parents, or to run from them; we may need to deal with birth parent incarceration or death; we may need to deal with siblings who aren’t living with us, or past connections to foster parents; we may need to deal with big, looming problems, such as medical issues or life-long disabilities.
Maybe we can’t fix everything, maybe we never will. But, moving on cannot be rushed, and it cannot be scheduled. When we can tell that we aren’t as stressed, we can look back and think ‘I survived that!”, we can look to the future without fear, and when we can look ahead bravely without knowing what is coming—that is how I can tell we are moving on.
As adoptive parents, we have already been on a journey. We have traveled a road—the adoption road—that few others will. Our experience is unique, and, to some degree, moving on is a way of life for us. We may have moved on from infertility, fostering, adjusting to a smaller family size, or attempting to have a “typical” family unit. We have survived other unknowns, and currently, we are journeying through a period of history no one predicted. Now, even if life is not perfect and there are still pieces left unmatched in our puzzle, it is time to move on again. In our lives, we are forever moving on.