Earlier this week, I stumbled across a bag in the laundry room. It was full of toys, coloring books/crayons and books for Caitriona. We used the bag during trips to the hospital for outpatient days when we lived at the RMH and the hotel. Seeing the toys brought me to tears because the only place she had ever played with those toys was during difficult moments. It is amazing how quickly I can tear up. But it has made me realize how far we have come. From two outpatient appointments each week, to just two a month!
I still have a bag packed in case of an emergency. I take a small truckload with me to CA each time we have an appt. I am always afraid that something might cause us to have to stay. Naomi is aware of that, too, and she and I always hug and celebrate when we have decent counts and are able to return home. It gives us a reason to celebrate every day….. Even the difficult ones.
We are finding that being “normal” is not easy. The emotions of the past few months are oozing out of different people every day. Being forgiving, gentle, understanding, compassionate, and allowing everyone to express frustrations and anger is important and necessary…… And time-consuming.
One morning this week, while snuggling together, Niamh was telling me a story that made my jaw drop and a lump form in my throat. It was about a little boy who had a sick sister. The girl got sick by touching things and putting her fingers in her mouth. She was so sick that her mom took her away where she would get medicine that would make her lose her hair, and then die. The boy was scared about his sister dying and thought that since his mom was taking her sister that his mom might also lose her hair and die.
This little story, presented to me by Niamh who was pretending to read to me was so heartbreaking. It shows the depth of her pain and the effect of Naomi’s illness, and my separation from her.
When I think of Naomi’s illness in terms of duration, I sometimes think that we had it “good” because Naomi had her transplant within 4 months of being diagnosed and we did not have years of her being transfusion dependent, or waiting for a donor.
But, I do believe that all things work together for good, and God knew exactly how much our family could take. With 6 young children, we did not have the patience to wait years, or even a year. Naomi’s being sick for 6 months was still 1/8 of Niamh’s life. 1/4 of Caitriona’s life. To a child, that is an eternity…. Likely some of Niamh’s first memories will be when Naomi was sick. What a sad series of events to have been living through when coming to the age of awareness.
This past week, I resumed my work out of the house. It was a bit earlier than I thought I would return, but the timing was right for the business and it has been good for me for to be involved in the move and upcoming grand opening. The timing for me personally was not great because this was also the first week that Aaron was in the office for five straight days. A few nights, I left as soon as he arrived, but we made it work! It has enabled Caitriona to say goodbye and experience me coming back. She has handled the transition very well and is starting to understand that when I leave, I will come back. We have had talks about it, and she can prepare for it. Then, she loves when I come home at night.
I had a rough time leaving the first day and felt very guilty for having a normal life. I felt like maybe it was too soon; shouldn’t I stay home longer?; do I really belong going back, or should I just stay home with the kids permanently? But I have a gift, and a love for what I do, and a piece of me is missing without it. So, tomorrow, I will gladly attend the Grand Opening of the new Well Rounded Momma Wellness and Maternity Center. I look forward to attending births as a doula and student midwife, again. I cannot wait to have prenatal appointments next week!