The Three F's of Coping with Sickle Cell - Family

When I talk with people about the things I endure, the question I'm frequently asked is, "how do you cope with it all?" For one thing, I couldn't do it without my family. I feel SO blessed to be a Monk; and I don't mean the bald headed kind who wear robes all the time; though my oldest brother is bald now.

Everybody's family unit is organized differently. Many live in a single parent home; some have half siblings; others have step-parents and siblings; some live with relatives or foster parents; and others have people of non-relation whom they call family. There are many people who feel that blood relation is the only kind of family that matters. Being adopted, I know that's bull. In my mind, time together and love is  what makes a family.

I've never had a desire to seek out my biological parents. I've always known who my mom and dad were. They are: the only parents I've ever known; they are the people who have loved me all my life; they are the people who agonized with me through every pain crisis and all 116 hospitalizations.

I have so many memories as a youth of being in the hospital. Too often, I saw other children who seldom had anybody visit or stay with them in the hospital; sometimes for days at time. I felt bad for them. There I had either my mom, dad, or some other family member visit me every day; but next to me there was a child who did not have that. It broke my heart.

My point in writing about this is...Sickle Cell is a difficult challenge to live with. For any parents or family member reading this post, your child needs your support. No matter the age, a hospital bed is a lonely place to be. Sickle Cell itself can be a lonely disease. Family and friends must rally around the patient.

For any teen reading this post, allow your family to be there for you. It's not uncommon for many teenagers with Sickle Cell to wonder if they should tell certain family members, who may not know, that they have Sickle Cell. As I've said in previous posts, you need your family's support. Be open with your family. Trust them and rely upon them.

For any reader whose life circumstance is such that family is in short supply, remember what I said; blood relation doesn't necessarily make a family. Lean on the love others have to give you. Whether your "family" is a neighbor, a minister, a teacher, or trusted friend, allow them to be there for you. And to those ministers, teachers, and neighbors, please, please understand how great a challenge living with Sickle Cell is for your loved one, and offer as much support as you have to give. It will make all the difference in their life.