Sickle Cell Facts

ABOUT SICKLE CELL AND MY CALL TO SUPPORT WARRIOR MUMS : MY SICKLE CELL DIAGNOSIS STOLE MY JOY. It shouldn't steal yours.

Every now and then, I receive messages from people all over the world. Many are comments of gratefulness for sharing my own sickle cell story or people sharing their own stories. But lately there has been a rush of notes from people who are in distress. Mother's especially.

From parents of newly diagnosed children with sickle cell , to spouses that feel like they are losing the person that they love, their words glow on my screen, saturated with hopelessness and fear as they drip onto my chatbox. At first I was slightly concerned on how to respond. Could I hear their suffering and then say something magical that would erase their distress that they were experiencing? I couldn’t. Nor could I say, “So why didn't you check your genotypes”. But what I could do was to be vulnerable with them.

Just a little over eight years ago, i got diagnosed with sickle cell and my life was forever changed. Today, I am regularly asked for advice from parents of children newly diagnosed with sickle cell. In the last two or three weeks, The number of mums who have reached out have increased. So, I write this not just as a post I can refer mothers who reach out to me to, but as one that any parent or caregiver or has a child battling any disorder similar to sickle cell can relate with.

Sickle Cell diagnosis can be so intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when I was diagnosed because in my case, I was diagnosed when I knew my left from my right..... I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with sickle cell.

DO NOT LET THE SICKLE CELL DIAGNOSIS INTIMIDATE YOU. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, educators, or the price tag that comes with sickle cell intimidate you. One day you will look back on this and wish you could reassure yourself because you’ve got this.

DO NOT LET THE SICKLE CELL DIAGNOSIS CAUSE YOU TO FEEL SORRY FOR YOURSElf. Do count your blessings. In reality there are things so much worse than sickle diagnosis. Look around you. There are people dealing with truly tragic situations. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.

DO NOT LET THE SICKLE CELL DIAGNOSIS CAUSE YOU TO FORGET. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher second.

DO NOT ALLOW THE SICKLE CELL DIAGNOSIS LEAVE YOU FEELING SELF-CONSCIOUS OR PARANOID. Do understand there is no guilt to be had or blame to be placed. It's normal to feel guilty or wished you had take a genotype test or that you repeated the ones you took. There will possibly be rude questions and awkward silences. There will probably be people who think you must be really unwise to have a child with sickle cell despite your level of education. You could also meet people who think you aren't taking care of your child with sickle cell because the child looks so thin. Do not let people who are uneducated about sickle cell cause you to feel humiliated. Know this: It does get easier with time.

DO NOT ALLOW THE SICKLE CELL DIAGNOSIS ISOLATE YOU. Do reach out for help. It is true that some people unfamiliar with sickle cell might stop coming around after the diagnosis. They do not understand the complications,, the crisis, the necessity for routine drugs and check ups, and the jargon we speak. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. Online groups can be helpful. There are a lot of support groups for sickle cell. Reach out. We help each other.

DO NOT ALLOW THE SICKLE CELL DIAGNOSIS ROB YOUR OTHER CHILDREN. Do explain sickle cell to your children and what it means to your family. A child with sickle cell would most likely need more care than his siblings. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the activities your child with sickle cell. There may be many things your other children want or need that your child with scd cannot participate in. Sometimes your other children will have to have your undivided attention too. Your world cannot ALWAYS revolve around the child with sickle cell

DO NOT ALLOW THE DIAGNOSIS STEAL YOUR JOY. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Having a child with SCD will not suck all the fun out of life. Fun activities can help you tremendously. The fact is, sickle cell or not, kids are fun and kids say and do really funny things. Enjoy those things. Don’t let sickle cell silence the laughter in your home.

DO NOT ALLOW THE DIAGNOSIS SQUASH YOUR HOPE. Do be willing to dream a little differently. Before the diagnosis you were possibly envisioning the child's education, kind of job, a wedding, and grandchildren. Don’t stop dreaming dreams for your child. If due to sickle cell, dates and plans do not align, modify your expectations. But stay motivated to help your child become the best that he can be.

DON’T LET THE SICKLE CELL DIAGNOSIS CAUSE YOU TO DOUBT YOUR FAITH. Do take advantage of the things sickle cell can teach you. God does not “hit” families with sickle cell because they’ve been “bad.” God still wrought Miracles. HOLD UNTO YOUR FAITH AND DO THE NEEDFUL

DO NOT LET THE DIAGNOSIS PULL YOU INTO FRIVOLOUS DEBATES. Do use your time and energy wisely. You have got important things to do.
Focus your attention, time and energy on your children and their needs. Don’t get caught up in the community debates that lead to nowhere. Whether or not you choose to use the word “sickler” or warrior is no one’s business but your own. Your right to disclose your child’s diagnosis to everyone in your community or keep it in house is also your own. Your time is much too valuable.

Finally, you must knw that I can imagine what you are feeling. I have been there. Sickle Cell is like a thief in many ways. It has been known to rob children of their childhoods. It can sometimes steal the joy and hope from parents. SICKLE CELL has drained a lot of bank accounts and has ruined marriages. But it does not have to be that way. NEVER ALLOW A SICKLE CELL diagnosis do those things to you.

Your Child is First Human
Treat that Child as you would treat every human.