Give Me the Sun!
Have you ever wondered how it's possible that you have tried for so long to find a solution for your child's health, but in the end, it turned out to be much easier than you thought?
Weather and sickle cell pain
Over the past 3 years, my little princess and I have often slept in the hospital and spent hours in the emergency room. We have lived in New Jersey since 2019, where the majority of the year consists of cold months. As a mother, I was aware that the cold could potentially impact my child's health, but I had no idea what the reality would be like.
After 3 years of being in and out of the hospital, we decided to have her participate in a clinical trial so that she could be cured of sickle cell disease. I was so desperate to give her a normal life again and look for all the possibilities that existed. At one point, I started to have doubts because the process of the procedure was much more intense than I expected. It took me some time to sort this out with my mother and good friend who has been my daughter's pediatrician for many years.
The vacation that changed our lives
We decided to take a vacation since my daughter hadn't been to school for months because of chronic back pain. I was emotionally exhausted as a mother, and my princess was also exhausted from all the pain and wanted a normal life again.
We went to my native country, Suriname. It is a warm country, with a lovely temperature and no cold days! In Suriname, it is always summer. My daughter lived in Suriname for the first 8 years of her life, where she was very healthy and had little to no problems with her sickle cell. So when we moved to New Jersey, that changed a lot.
I didn't want to go back home
Our holiday in Suriname was meant to recharge for 10 days and then fly back to New Jersey. But after 7 days we noticed that she had no pain, and asked for no painkillers, while she was still on morphine until the day of departure. She did so well in Suriname that I extended my vacation twice, and we ended up staying a month instead of 10 days.
On the plane back to New Jersey, I had such a bad feeling as a mother. I didn't want to go back home. I didn't want to go back to the cold. I wanted to see my princess go back to school normally, make friends, and smile.
My husband, who was waiting expectantly at the airport to pick us up, saw in my eyes that something was not right. He had been living in New Jersey for years and has 3 children from his previous marriage. So, it was not an easy conversation to have. We arrived Thursday morning, and that same evening, we talked about moving to a warmer state. We had all seen how well my daughter did in Suriname, so luckily no explanation was needed.
A new journey to less pain
That Friday I went looking for a realtor. I explained to her that I had to move as soon as possible, but of course, I had some extra requirements such as a good school district, a safe living environment, and proximity to the hospital that specializes in sickle cell disease. Within a week I signed my lease for my new home, where my daughter and I would start a new journey.
After signing my lease 2 weeks later, I got on a plane on my way to Florida; nice and warm, on the way to The Sunshine State, in the house of the mouse! My princess and I started our new warm journey in Orlando thanks to all the support from family, the realtor, and my husband.
It is a blessing to see my daughter living normally again. She goes to school every day normally. She gets on the bus in the morning, comes home in the afternoon, and has fun stories to tell about her new friends every day. We discover our new community together and go to a new place every weekend to keep our exploration fun. My princess is healthy again, she is smiling again, and she is doing the things she used to do.
My husband hopes to find a job in Orlando soon so that he can come to us. But for now, the most important thing is my child's health.
A warmer outlook
Is my daughter still in pain? She does have a little pain crisis sometimes, but she hasn't been to the ER once. We are keeping a close eye on her! She has now started a new medication, so we are giving her the best that she deserves through medication and a warmer place.
I know that you can't always move to another state or country, but what we all can do is figure out what triggers a pain crisis and try to minimize the risk of a trigger.
What are your hot weather triggers? (choose all that apply)