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Gratitude on Christmas

Dear lovely, beautiful upholders, boosters, supporters, advocates, and pillars of strength in my life, I truly hope this message is not a bother to you during your holiday festivities, but instead, adds to the celebrations of all you have accomplished in 2020. This is to remind you once again that you are amazing and giving, you have been successful, you have changed lives……our lives. I keep hearing what an awful year 2020 has been. Time Magazine, and the world cannot wait for 2021. And I totally get it- Covid, racism, the economy, too many hurricanes to count, and some pretty hostile politics. Yet still, for me, for my family, 2020 was one of the most intense, engaging, life-changing, extraordinary, incredible, family-getting-even-closer and friends-showing-their-true-and-oh-so-beautiful colors years of my life. I know it does not appear like that from the outside. I have received so many kind messages reminding me that 2020 is almost over- HALLELUJAH! And I AM so excited for 2021 and all the new year has to offer. But 2020 was a life-defining year, a year that I do not think I would have asked for, but one that I am so grateful to have lived….. to have come through (hopefully) a more enlightened soul. People really are so good. YOU, reading this, YOU are so good. You have given and continue to give us, more love and support than I ever thought possible. My son Michael (and don’t get me wrong, he has always been a sweet kid), seeing him go through THIS, he has transformed into such a truly strong and spiritual fighter. A leader and an inspiration. My older son Steven, always a great student and athlete, but the last 6 months, he has also become the foundation, keeping our house together, his friends motivated and updated, and always with a smile. My daughter Jennifer has evolved into an independent beauty, going to school, dancing, and is the carpool mama, responsibly driving her friends to and from dance EVERY day. I have heard that sometimes difficult moments can bring out the worst, but wow, this year, I have seen the BEST in people. I would not change 2020. Of course, this must be followed by a Michael update :) We had been home for about 3 weeks…... There was a detour in the road, he was readmitted to the hospital for a few days back in early December….. And even these past few weeks, we spent most weekdays in the infusion unit of the hospital for blood tests and intravenous medications… but sleeping at home, doing the simple things, like eating dinner every night with my three kiddos, has been kind of miraculous. There were moments during our (more than) 5-week stay at the BMT that I could hardly even imagine feeling like a “normal” family and simply sit down, talk about nothing in particular, and eat dinner. That felt so far out of reach. Yet, those few days before Christmas, we almost got there! Not quite normal, but together. Talking. Laughing. Sometimes crying, but mostly, so grateful, as trite and cliche as that sounds. The steroids seemed to be kicking in and Michael’s first bout with GVHD appeared to be improving. He was finding more energy just in time for the Christmas tree lights to be shining brightly, as beautifully wrapped gifts with big ribbons and funny name tags were materializing under the boughs, and even though the tree was artificial (sadly, no live plants allowed near this BMT kid), the holiday spirit was feeling very real! We were able to make our traditional home-made Polish perogies (yes- from scratch!) on December 23rd, to be eaten Christmas Eve, but unfortunately, late Wednesday afternoon, not quite a catastrophe, more like a slow blow to the stomach, as Michael ended up in bed with too much abdominal pain to sit up or even talk. Thursday, December 24th was still lovely, my children just kind of being with each other, going with the flow, supporting Michael, watching Tik Toks, listening to Christmas music (that their mother LOVES!), and trying to guess what was in each wrapped package using those universal kid techniques including shaking, squeezing, weighing, measuring, and peaking under the scotch tape when no one is looking. I had been in constant contact with Michael’s BMT doctor those painful 24 hours, and alas, on Christmas day, he reluctantly reeled us in, sending us to the ER, to be readmitted to the Hospital’s BMT unit. Michael’s symptoms alluded to a virus, bacteria, or GI GVHD, Gastrointestinal Graft Versus Host Disease probably stage 3. When we were leaving home, heading out the door to the ER, we optimistically packed only enough for an overnight stay. We had hopes that he would be admitted for a day or two to fill him up with fluids and IV medications, then be sent on our merry way home for the rest of the holidays. However, it is already Day 3 back in our room at the BMT unit, and after a zillion and one tests, there is no evidence of any viruses or bacteria, which sounds good, right? It did to me. But, by process of elimination, everything is pointing straight to the GI GVHD, which is a little more complicated… a little longer in the hospital… a little more recovery time… and of course, more medication. He is not allowed to eat ANY food (nope, nothing) for a week or possibly two, IV nutrition only….. a lot harder when perogies tasted soooooo good just a few days ago! Nonetheless, we cannot forget this is just a setback, not a failure. Another hill to climb, but not insurmountable. A reminder that he is still fragile, still healing, still fighting a raging battle inside that our limited eyes cannot see, even if the outside was just beginning to look a little more like my Michael. Yes, certainly skinnier, totally bald, no more surfer tan, but the eyes were getting that Michael shine. I am looking at him now, as he sits on his hospital bed, building legos to distract himself from the upcoming colonoscopy and biopsies tomorrow, and all that goes through my mind is how I want that shine, that sparkle, that twinkle, to stick around. I know it will. This is simply a slight delay in our ever-changing plan and fluctuating time-line. Reinforcing our mantra that we must go one day at a time. Hour by hour. Minute by minute. Appreciate every golden moment. And, I think, appreciate the hardships, too. I am sounding so corny, but maybe the holidays bring out the sentimental dreamer! Who am I kidding? If you know me, ha- I am ALWAYS a dreamer! I do not have regrets about 2020. As I said, it has been a gift- the gift of growth that only happens with great pain or true challenge, or both. So, I wish for you all the knowledge that we love you. You are awesome. We needed you and you were there. Tears rolling down my cheeks as I write. 2020 was a year of the most unselfish love and support imaginable. We may be in the hospital to end the year, but we are better and stronger with more faith than ever…. Forever indebted to you all, who made 2020 beautiful. As always, thank you is not enough, but thank you… Thank you… Thank you…


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