Goodbyes
Every good journey starts with a proper leave-taking.
And so, we’ve had to say a lot of goodbyes. We will be traveling nearly the ENTIRE length AND width of the United States as we make our way to Seattle, WA from Columbia, SC by car - and half of that adventure will be traversed with our two kitties, Okami and Lily!
Okami (black) and Lily in 2020. (Luckily, we don’t have to say goodbye to them just yet!)
Over the past 14 days, we’ve said goodbyes to friends via solo playdates, last-minute sleepovers, small gatherings, coffee dates, and quick drop-by’s for a hug. With our friends, we have tended to avoid naming anything as our last visit - we find a reason to say we’ll see each other again, such as to drop off houseplants, hand off perishables, or perform some other comforting, mundane task.
Certain goodbyes, however, are unavoidably large. Over the past week, we’ve said three monumental goodbyes, and this post honors and celebrates those relationships:
First, we bid “zài jiàn” to in-person school.
Last week, Adahlia attended her last day of in-person classroom instruction. (Adahlia’s elementary is Mandarin-immerison — 再见 (zài jiàn) means “good-bye” in Mandarin!)
Like many kids, Adahlia has had to navigate classmate misunderstandings, bullying, and teasing at school. Even so, she absolutely loves her school. She loves her teachers, has a GREAT friend group of both boys and girls, and excels in all of her classes. It was hard for her to say goodbye and accept the necessary transition to “Medical Homebound” education. But her school is being amazingly supportive. Through the Homebound program, she’ll be able to keep up with her class remotely, check in with her teachers weekly, and finish out the school year strong!
As is our style, we added a healthy dash of fun and service to our farewell to make it more bearable. I was able to join her for lunch and recess, bring a “farewell” treat to her classmates and friends, and speak to her homeroom about Diamond Blackfan Anemia (DBA) and Bone Marrow Transplant (BMT). Together, Adahlia and I dispelled rumors, talked about what red blood cells do in the body, and shared why this procedure is a good choice for her. We shared her website and resolve to help other kids find the inner strength to stay true to themselves and to their dreams, no matter what their challenge. We also handed out Adahlia’s support bracelets (and school-specific panda bracelets!) to everyone who wanted one.
As we drove away, Adahlia saw a special message from her school. Typically, the outdoor digital sign announces birthday greetings. But on her last day, we saw her photo (with her soccer ball and school mascot Ming Ming) and the words: “GOOD LUCK, ADAHLIA!” proclaimed to everyone who drove by. Adahlia was SO excited to see the sign… and I am SO grateful to the administrators and faculty for all their love and support!
Next, we bid “adieu” to our beautiful hens.
For an animal-loving kiddo like Adahlia, one of the most difficult aspects of a procedure like a bone marrow transplant is the fact that she must be parted from her pets for many months. While we will bring our cats as close to Seattle as we can (so that we can be reunited with them as soon as possible post-procedure), Adahlia will not be able to touch her hens for at least a year. To reduce everyone’s stress, we knew we needed to find a safe, temporary home here in South Carolina for our beloved, backyard chickens.
Luckily, we are friends with an AMAZING family who jumped at the opportunity to take care of Adahlia’s three egg-laying hens: Goldie, Henrietta, and Tiny Hermione (who isn’t so tiny anymore!) Working together, we quickly dismantled and loaded the predator-proof coop, run, and supply shed into a 6’x12’ trailer. A few hours later, everything was reassembled in the backyard of the hens’ new (temporary) home.
Something that is helpful for all kiddos (but becomes especially vital with invasive medical procedures) is to provide as much agency as possible. Having a degree of power or ability to impact the events of our lives is absolutely essential to mental-emotional health.
For me, one of the highlights of this past week was when I realized that Adahlia has internalized this important “self-care” concept. She surprised us all by announcing that she had made an instructional PowerPoint slideshow on how to care for her chickens “for a short time only.” We adults sat down with slide printouts, pens, and coffees in hand, dutifully taking notes, as she gave us her presentation.
Check out her impressively thorough “how-to” as a video below! (We apologize that there isn’t any sound - we are still figuring out how to do all of this, but given our upcoming year of social isolation, we anticipate getting quite good at it! In future videos, Adahlia plans to actually record herself giving the presentation.)
Finally, we bid “farewell” to our local Hem/Onc unit
As any parent of a medically-compromised child will tell you: needing to get care at an unknown hospital (due to relocation, travel, et cetera) creates a lot of anxiety.
Complicated blood disorders like DBA require a great deal of attention to minute details. The blood must be matched exactly right. The right labs must be ordered so that nothing is missed prior to transfusion or medication administration. Different hospitals have different types of needles and medical supplies, different nurses have different routines and preferences, and doctors follow different protocols while having varying expertise.
Fortunately or otherwise, Adahlia and I have relocated across five different state lines since her birth and discovery of DBA, so I have plenty of experience with how to manage this particular flavor of anxiety. We are ready to transition her care to Seattle, and when it is safe to do so, we will be ready to transition her care back to her home hospital.
Even so, it is always sad to say goodbye to nurses and staff whom we have come to trust, who know our needs, quirks, and what will set this “mama tiger” roaring, and whom I rely upon to keep Adahlia alive and with us.
The EXCELLENT news is that one of our favorite nurses of all time actually relocated to Seattle Children’s Hospital Hem/Onc unit last Fall! We cannot wait to see her again. And even though (as a blood disorder patient) there is no end to treatment - we don’t have a finish line nor get to look forward to ringing the “victory bell” that hangs on the wall to celebrate a kiddo’s last infusion… we did so anyway! Goodbye, Prisma Health!!
The next few days are crunch time.
And we are gearing up to meet the challenge.
But I must admit: I’ve had to push our departure day back by more than a couple days.
If you find yourself embarking on a cross-country journey of unknown duration for an intensive medical procedure for your child, I highly recommend planning some cushion.
Things will go wrong. Items will break and get misplaced. Over the past month, there were times it felt like both our house and household were conspiring against our departure. Our dryer broke - twice. Our cat injured her leg. Adahlia accidently swallowed a nickel (I wish I was making that up) and our to-do list to make our house guest-ready (we will be renting it out while we are gone) seemed to only grow longer.
Meanwhile, you’ll be acutely aware that you want to be maximizing your time together. You’ll want to savor all the things you love doing together one last time. But all those things take time, and when you factor them together with the needs of everyday life that still need done (such as preparing meals, ensuring bedtime routine happens, medication preparation, et cetera), you might just find that you don’t have much time left.
Depending on how far and long you’ll be gone, if you’ll have family in your house or will open it up to strangers, how many living creatures depend on you, how moving parts and how much assistance you will have, you may end up pushing out your departure date, too. Planning plenty of cushion into your trip will allow for mishaps to occur without adding unsafe amounts of stress. Of course, eating up your cushion or travel time with packing and cleaning means you will eat into your planned relaxation and special pre-transplant time together… so it all needs to be weighed and balanced out.
Know that packing for this type of experience is like no other trip. There will be inconvenient, unavoidable, paralyzing, and draining waves of denial, grief, and fear. But with support and self-care, there will also be periods of empowering hope and energizing determination. If there is anything you can do to make it less stressful on yourself (such as, oh, maybe not renting out your home, so that you can simply leave and return to it waiting for you, instead of boxes and more work waiting for you…) well, I strongly encourage you to choose it. If you can at all swing it, choose the least stressful, least taxing, least “work intensive” option. You have enough on your plate.
Whatever your challenges, if you are still on this page, I’m willing to bet:
You are a fairly smart, loving, conscientious, and courageous person.
Like me, your life has uniquely prepared and led you to this point.
You can do this.
And you are doing this.
Because you were made for this.
And since we’re all doing this together, we’ll be here to show you how it can be done, more or less gracefully, and with a whole lot of real.
