We need everyone’s love, support and acceptance because the struggle to deal with SCD belongs to the whole family not just the warrior. And siblings can feel at times that the parent’s main and only concern is with the warrior and not them but they have to find a way to make sure child feels as special as the SCD warrior. A plan needs to be in place to ensure the other children in the family feel a sense of importance too.
When a family has several children, like mines, it can be a challenge to make sure all kids feel special and loved and at the same time teach them it’s important to have compassion for people. My family consists of all girls ages 18, 13, 8 and 5 years old. Instead of concentrating on the guilt of being away in the hospital with my little warrior, I counter act those feelings with thinking of positive ways to still make them feel special, loved and just as important as the warrior. I call them often when I am away at hospital stays. I ask them things I would ask them when I’m home like how was your day; is their homework complete, what’s for dinner, and what interesting happened today at school. I tell them how much I miss them and check to see what’s going on at the house I should know about. I try my best to get them to visit my warrior at the hospital too and let them know their sister misses them as well. I keep them in the loop of what’s going on as far as who will be caring for them and what day we anticipate coming home.
Spending a lot of time with your children individually and as a family when everyone is healthy is one of the keys. My girls and I have family night every Friday at home by playing games, baking cookies and watching movies. We play a game called restaurant where we invite people over and the kids take the food orders of everyone and then cook. The kids enjoy it a lot. When I’m in the hospital and a family member/friend cares for them, I still encourage them to play games together and or watch movies and make popcorn. I encourage them to be happy and normal as possible although the circumstances are not always that normal.
The girls and I also spend time praying as a family and talking about how grateful we are when we have a good week without the baby warrior being sick. I stress the importance of us working as a family to keep the house clean, eat healthy and love each beyond ourselves. It’s important that we understand that we must strive to understand each other and treat each other like we ourselves want to be treated.
All in all, we have yet to have a problem with one child think they are less important than my SCD warrior. All the girls are compassionate about their sister’s illness and show it by hugging her or comforting her in any necessary. However, this is only because I make an effort every day to appreciate them and tell them I love them constantly. And if and when someone feels slighted in any way, I will make my best effort to resolve it.
thanx for this article. you are such an encourager. my 1st born, now 2 years old is a SS warrior. this was discovered at 10 months old. i went through the first year very depressed but i am learning to cope. however i am afraid to have anymore kids coz i dont know that i will manage. how would you advise me?
@Namara. Pray for clarity about your decision. God will answer lead you into the right direction! Be blessed.
Thank you both for your great comments Tasha & Namara! Namara, my warrior also has SS and it has definitely been a challenge. And although I am no longer married, I would not personally consider having a child with a known carrier of the Sickle Cell Trait. Doctors say it is a 50/50 chance you could or could not have a child with SC but I would not take that chance! However, that decision I decided for myself. I cannot advise you on your situation bc I don’t know it. But I promise to encourage on our shared journey with each article I write. Thank you for your comment & know you are stronger than you think!
Thanks so much for this article. Very inspiring indeed. I also have two Z-babies just like you!!!! Yay :). My second daughter is an amazing and super beautiful SC warrior. We are praying for a permanent cure. I am expecting our 3rd child very soon and praying he does not have SC. God bless you for your tenacity and love – it shows in your articles. I will be praying for your little Z-baby warrior.
Don’t worry, God will see you through by his mighty wonders (Amen)