On a typical day, mornings include waking up, getting out of bed, drinking coffee, taking a bath and starting your daily routine. The kids are getting ready for school, and Mom and Dad are getting prepared to go to work. It was always instilled in me that breakfast is the most important thing of the day for every individual, so I take great care in preparing a nutritious breakfast. Then, at the end of the educational year, the children are at home, which becomes a complete disaster. The routine and the rules are broken; no more getting up early, no breakfast at the scheduled time, no time to bathe, toys and clothes are all over and the beds are not made. I disagreed a lot about the disorder, and my children told me, “Mom, we’re on vacation.”
Yes, it was true, they enjoyed their school holidays, and there was no reason to get up early, and breaking with the routine was allowed. But I worked more because it was almost impossible to keep the house clean and everything in order. My husband is very pampering with the children. There is pizza in the afternoon and those milkshakes that could not be missed because “they were on vacation after all.” They, too, enjoyed more hours playing games, watching television, and even going to bed later more nights than usual. It was the summer of 1995, and it was not common to have Netflix, cable, or internet at home but video games began, although we did not allow them to spend a lot of time playing. You had to improvise games at home and ways to pass the time. They used the sheets, blankets, and cushions to build houses, and there they could enjoy delicious fast food, ice cream, and fried foods because, “we were on vacation after all.”
It was also fun to play with the hose in the yard, and if possible, even play with mud, making cupcakes or tiny houses. Some days in the afternoon, friends would come by and play soccer, hide and seek, ride a bicycle, skateboard or rollerblade. Since my children have hemophilia, they knew they had to take factor to prevent bleeding, and it was part of their learning and a way to take care of themselves, so they did not have to go to the emergency room. I am very grateful that some of their friends also cared not to get hurt and protected them a bit. They knew that they had a medical condition that sometimes did not allow them to go out to play, and they had to rest for a few days.
Time passes, and we are presented with the opportunity to attend for the first time a summer camp designed for children with blood disorders. We had no idea how it would benefit them until they had the experience. At camp they learned many things through activities and talks. They learned to infuse themselves with the factor (which was the most relevant), being more independent, and (oooh miracle!), they also managed to be organized by taking care of their clothes, not leaving wet towels lying about and enjoying many activities that we usually did not do at home. While at the camp they could swim, canoe, climb a wall, climb and jump on the zip line, ride a horse, develop their creativity with crafts and make new friends. It was such an impact on them that they wanted to return every summer. We still have photos and memories of those camps.
One afternoon, under the intense sun, we went to the airport to greet the children as they returned from a summer camp. It was five days of being away from home, without mom and dad. We were in total silence at home. No kids running, no shouting, no singing and no denying what they did not do and what they did. We missed them. It had us thinking about what would happen when they grew up and left home to live their dreams. Upon greeting them, we hugged them with great joy and enthusiastically listened to everything they told us about their experience in the camp. We arrived back home and immediately they began to unpack their backpacks, putting everything with them in order. I watched them act so differently from when they left, and I wondered: where are those restless and disorderly children that I stopped seeing a few days ago? My children had grown and matured in a short time. They looked more confident, more decisive, more orderly and even more obedient. Wow, I loved it!
At home, things did not change much, but I did see them differently. It did change my children’s lives, learning to be independent and more confident, not allowing hemophilia to beat them, and learning to live without feeling that they depended on hemophilia to achieve all their goals. When they returned home, they told me: now we will have a breakfast with love! It was a surprise for me to hear that phrase because I realized that cooking with care and love for my family did make a difference and that they noticed it every day. A breakfast with love means preparing nutritious food with rich colors, smell and flavor and that you like it at first glance and when you eat it. I told them a story about fruits, the energy they would get if they ate everything and that they had to take advantage of everything to grow strong and beautiful. And I’ll tell you that I did it!
Now they are adults, and they no longer live with us, since they have already started their own flight, but there is still the memory in them of those delicious breakfasts. I think the breakfasts contributed towards my children being successful and safe people who love what they do. My daughter is a nutritionist, and my son is a chef. I love you, children, and I love everything you are and how you are. They will always be my most tremendous pride!
Ana and Leonel live with their son Luis, who has hemophilia B.
Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.