I have told you a lot about my little Bella but I have not said much about my first child, Sebas. My son is one of the kindest boys I know. He is sweet and funny. However, what amazes me the most about him, has been the amount of support he has given Bella in her worst moments. He has been there for her in so many ways that sometimes my husband and I forget that he is just a kid.
We realized several months after Bella’s diagnosis that our little boy was also affected. He was not as happy as usual; he was feeling left out and hurt because we, as a family, had stopped doing things that a boy his age should be experiencing. We did not play outside anymore, go to the beach, or participate in any sport that implied outdoor activities. Even though we have always tried not to say things like, “we cannot do this because of your sister,” he is not a baby anymore; he acknowledges that Bella’s skin prevents us from doing a lot of activities.
We were lucky to have family and friends around who were there for him. However, we, as his parents, were not there as much. So, when we started to see and feel all his changes, we decided we had to direct more attention to him. It was then that we decided Sebas should start seeing Bella’s psychologist, as well.
Some of the things that have worked for us are:
- We always try to involve Sebas in our bath routine. He usually showers first, then he goes in the bathtub with Bella. This is a good way for them to share a moment together, but also a distraction for her when she is tired of the 20min bath.
- He is my little helper with Bella when I am driving, and I cannot be by her side to stop or prevent her from scratching. He usually distracts her with games or songs that they play on my phone. There are times when it works, and sometimes it does not. But he tries really hard and feels like a superhero.
- We do not push Sebas to eat what Bella has to eat. But we try to make similar snacks for them. For example, when we make strawberries with cream, regular cream for him and coconut whip for her.
- We also involve him in the preparation of special cupcakes or sweet treats for Bella, he is our little chef. He helps me with the baking, and he is also the official taster. Sometimes he likes the treats, sometimes he does not, but he always has fun.
- We also believe it is really important that each parent has one-on-one time with each of our children.
We have seen a lot of progress so far, he knows we love him and that we care for him. He also knows that his sister has some restrictions, but it does not mean that we love her more. We are just a special family, and we have to accept and be empathetic with each other. We live our life in a very special way!