Tuesday was a day of sleeping. On Monday night, I turned off my alarm and decided that I would sleep as long as I needed and we would do meds as soon as we woke on our own. I woke up, looked at the clock and saw that it was only 8:30am and returned to bed immediately. I was shocked to wake again at 12;20pm! Naomi was still asleep beside me, until I jumped out of bed and said, “oh shoot, you need meds!”
Months of sleep deprivation have caught up with us, and finally with Aaron having all the other children, I am taking full advantage of sleeping-in. Obviously, being awake at 2am, I am still not going to bed in a timely manner though… it is for good reason.
Naomi and I were excited to see Day +70 arrive and so we napped this evening. After sleeping until after noon, and then napping after dinner, here we are ushering in Day +70 together over ice cream and a movie.
We decided to watch The Secret Garden tonight. I found so much healing and symbolism by watching this movie with her. I could relate to the maid who “kept” the little boy sick and had to laugh when the nurse said that his flushed skin and legs and his increased heart rate were a sign he was ill from the fresh air. I also gasped when all the people stood around him with masks on, afraid they would make him ill. I just might hand out masks for anyone who visits our home for years to come, especially if you sneeze or cough – so be warned. 😉
Naomi and I found such symbolism though, too. As the flowers in the garden began to bloom, it occurred to me that Naomi’s illness coincided perfectly with the seasons. She fell ill in September 2013, as fall began. Her condition deteriorated with the continuation of fall and the start of winter. As winter began, and the year turned to 2014, we prepared for transplant. Through much of the winter, her blood counts were fluctuating and the future was uncertain. Now, as spring begins, her recovery is happening simultaneously. At one point while watching the movie, Naomi said, “it is springtime and I am blossoming like a flower!”
Blossoming, indeed. Some flowers have thorns, as does Naomi’s favorite flower, the rose. To help my rose bloom, this gardener has had to wear her share of gloves and beware of the thorns. The biggest thorn these days is procrastination at doing what needs done. I have to admit that spending so much time with Naomi over the past six months has made me realize a lot about myself by seeing how much like me she really is! Our similarities are likely why we go head-to-head at some point most days. I would like to think that we have both learned much about ourselves during these months. I also find it interesting that I considered the name “Rose” as Naomi’s middle name which would have honored my Great-Grandmother…. then, she named her baby doll that and chose it as her favorite flower. It is funny how life works sometimes. Rose would have fit her as a middle name pretty well, I think.
As we head into what we hope will be our last weeks here, I still have a list of started posts that I WILL work on finishing…. ahhh, there is that procrastination, again. Oh well, for now, I am really enjoying time alone with Naomi. We created a drinking game of our own tonight while playing soccer in the room. Whenever I scored a goal, she had to take a drink. We also played some computer games and even won twice on one of the most difficult cooperative games we have called Forbidden Island.
Last night, I finished knitting a scarf that took me way longer than any scarf should take a person to knit. Today, I fully intended to do a swatch to begin a sweater for myself, but playing with Naomi made the day fly by. With the weather being cool and cloudy lately, we have not ventured anywhere. I think we are due for a trip somewhere tomorrow (today!), maybe.
We are so thankful for the support and encouragement of everyone over these past 70 days, and even before that. As I look back tonight over how far Naomi has come, I cannot help but see hundreds of you behind the scenes holding us in prayer, devoting family rosary hours and Masses to her, having entire congregations remembering her constantly, the special offerings and gifts of many, the packages that came in the mail, letters, cards, emails, comments on the blog…. each of you have had a part in this that has carried us through the most difficult days.
As difficult as this has been for us, I force myself to look beyond our circumstances at the many I know of with Aplastic Anemia who are struggling so much more than Naomi. Ashley is preparing for transplant. Shelby has moved to New York to participate in a clinical trial. Shelby’s sting was made a little lighter by a visit from Taylor Swift this weekend, but her journey started before us and continues still. There are many without donors, dependent on transfusions, or attempting ATG for a second, third, etc time. Some, still, who are not eligible for a transplant and part of clinical trials at Johns Hopkins or other places. The journey for everyone diagnosed with Aplastic Anemia is different. Naomi is so young and I have hope that she will go on to live a full life that is not too altered by this experience. As her and I talk through some of what she is thinking and feeling though, she has mentioned that she remembers how much she loved gymnastics, but this feels like all she has ever known because it has gone on for so long. My prayer for her is to be able to be a child again. I want a return of innocence for her. She was robbed of the carefree days of childhood for too long. I just want to walk into the dr’s office and say “it is time to go home and remove the catheter and LIVE again!” I know though that the challenge will be to find this new life for us all.
A year ago, I had no idea what a new world I would be a part of today. I never imagined a child of mine would be in need of a transplant. I would be lying to myself if I ever really thought that life will ever be the same again. Having been thrust into this world, I cannot help but become an ambassador for the many who need donors. Please consider becoming a blood and bone marrow donor, if you are eligible.