4 years ago this week, Naomi was diagnosed and a whole new way of life would begin our family. Watching blood counts, sanitizing and washing with antibacterial soap constantly, being afraid of what could harm her because of her weak immune system. We had a new calendar of sorts introduced to our family – before AA, after AA, before transplant, after transplant. It all still seems so surreal. Like it is a story I am seeing happen, but it isn’t because I definitely feel the pain of all we have experienced. It is so difficult to watch someone go through this, to lose dreams, struggle in the things we normally take for granted. I am learning to take NOTHING for granted and count the small but significant blessings along the way.
Last night, Naomi pulled out the 1000 vintage candy puzzle we did in Wisconsin. She begged me to do it with her. So I got a cup of tea and joined her. It was therapeutic- and yes, we finished the whole 1000 piece puzzle in one setting! – but Niamh joined us. Somehow we got on the topic of dr appts and Naomi suggested sarcastically Niamh “go to her appt for her.” Niamh perked up and said she would love to go with Naomi. I told her that since this week is Pentamidine it would be good for Niamh to join Naomi and play a game at that time. Niamh was so excited she ran to tell her Dad that Mom said she could go along this week. I then whispered to Naomi, “Niamh ADORES and you. She WOULD go to your appt FOR you if she could.” Naomi nodded and I think she realized for a second how much Niamh loves her. They are both so special.
One thought on “+203”
I know that feeling so very well…the day everything changed. And you’re right, surreal at times, for sure. What I wouldn’t give to take away Rosa’s suffering. Only faith prepares you for the reality of your child and a life threatening illness. It warms my mother’s heart to hear Naomi continues to do well. It is my wish and my prayer, for all the children currently fighting, that I continue to hear more and more happy endings.