Merry Christmas and Happy New Year! May your year be healthy and full of cheer!
It was an interesting few weeks for us as the children one-by-one succumbed to the flu, and Aaron, too. Half of us ended up with the flu and the other half a nasty upper respiratory cold. Some were most unlucky and went from one illness to the other suffering from both.
We had looked forward to this week for months. Aaron took vacation for us to just stay home and we planned for a special week of lots of time, games and food, but food was the last thing from our minds for a lot of the week. Naomi became sick the Thursday before Christmas and it lingered throughout the following week, on and off. Her stomach is still recovering but, according to labs and dr reports yesterday, she is doing quite well. Her platelets are 500, ANC 9000 and hemoglobin 11.6. So yeah, her marrow is working very well. Her IgG levels were normal too at 822. We have been giving her nightly hydration IVs to keep her from being dehydrated as her appetite for food and drink has been slow to return. She has also required a dose of zofran almost daily over this week.
The weekend before Christmas we were able to do our holiday baking. The treats lasted longer this year than they have in previous years.
Sinéad, being the youngest, had the honor of putting the star on the tree. As the older kids turn into young adults, I love seeing them carrying on our family rituals with the younger children.
Niamh, Cait and Sinéad play restaurant all day long. I am full most of the time because of them talking about food constantly!
Lauryn is learning to play the guitar pretty quickly. It has been a good way for her to relax and she enjoys playing with and for the younger girls.
This is Sinéad passing 2018 to us. The year starts out way better than last year. 2017 was likely the worst year of our lives. Aaron and I will be happy to never see the likes of it again. It started with Naomi having falling blood counts and requiring transfusions and ended with her having the worst illnesses since transplant.
2018 has the hope of recovery – not just for Naomi, but the whole family, who has endured a year of trying circumstances. It was clear to me though, over the holiday week, while we were all not feeling well, how much stronger, more compassionate and united we have become this year. Each of us relies more on the rest, but also has a well of compassion and support for each other. Our family has definitely grown closer this past year and that is the good we can take from 2017.
We are so thankful to all the Aplastic Anemia organizations for information, guidance and support during the second transplant process. It was a nightmare we truly hoped to never need to endure but the guidance we received led to Naomi’s second transplant, literally and financially.
We appreciate the doctors, nurses, social workers, Ronald McDonald House staff in Wisconsin who sheltered, cared for Naomi though her time there, and helped get her back home.
Her home infusion nurses, insurance case workers and doctor here in Las Vegas have all made my life so much easier. I am so happy to have their support each week.
We are also thankful for all of you who have consistently prayed for her and followed her good days and bad days. I truly believe it is a miracle of God that she is with us today and your prayers made that happen. Over the year, I have heard about novenas, family rosaries dedicated in her honor and patron Saints called on for her protection, Masses said in her honor, and many, many positive thoughts and well wishes – all of which gave us encouragement along the way. Thank you.
Being the author of this blog, you will have to bare with me for a minute while I say a few things personally necessary. My life changed this year. Who I am, what matters most, and which relationships I value. Aaron continued to work and be home with most of the children and we learned how difficult it is to be a single parent. We definitely look forward to being home together each night. But for me, being the one with Naomi and leaving my life to go with her for treatment was like a huge pause button for me to start over when I returned. I have had a lot of reflecting to do in order to heal and move past last year. Watching my child literally fight for her life, and being separated from my other children and husband for months changed me immensely. If you knew me prior to Jan 2017, you may not know me now. My mama heart has been shattered and put back together so many times this year. The experiences I had with Naomi set off a ripple effect throughout my life. It is obvious to me in many small ways, but also in larger ways, like that I started a private midwifery practice and left the group I worked with and with this, I ended relationships that were not serving me well. I am a huge believer in strong families and will put nothing ahead of my family. It has changed how I parent and how I treat others, too. The experiences Naomi and I had in Wisconsin changed us both eternally.
Last night, on Day 301, after a very positive doctor appointment earlier in the day, Naomi was very huggable, lovable, and playful. Her and I napped on the sofa in the afternoon, made dinner together and then started a 2000 piece puzzle of a candy shop. It was such a symbolic event to start a new puzzle together. I am so thankful that she is doing so well and cannot wait to see what 2018 has for our family.