My son is bald, please don’t stare.

My son has no hair. When we are out he will always wear a hat. This upsets his brother. His brother would love him not to wear a hat. He will not leave the house without one. He was told at a local theme park that he could not go on a ride because he would not remove his hat. He had to walk down two flights of stairs and pass 50 or so people in utter embarrassment because he could not bear for people to see his bald head. He could not go on that last ride, the one he wanted to go on the most.

Up until recently, he even wore a hat in the sea as was his fear and lack of confidence in the public arena. If you came round our house at any time you would find him hat free, laughing and confident because he feels safe at home. He knows that if you come into our home we know you, therefore you will not judge him. Outside in the real world, he knows, even at his tender age of 10, that people will judge him and speculate about how his baldness came to be.
During a recent weekend away, which involved a lot of swimming, he decided to go bald as he thought he would look odd wearing a swimming hat. This would the first time he chose to show his head in the public arena. This was a huge step and took a great deal of guts and confidence. But he did it. And he did it with a real pride and swagger, we were so proud.
What surprised me most was the differing responses. Children tended to look, look away and then look back for a double take and then move on. Some adults stared, relentlessly, unashamedly, oblivious of the fact that my son could see them staring. It is like the rules seem to change with children. I’m sure that these people would not stare so obviously at an adult without hair. There seems to be the notion that children cannot seem them staring or that they do not to have the same feelings as adults. What came next though surprised me. My son and his siblings stared back. They stared and glared until the adult felt so uncomfortable they looked away. Whilst I do not encourage my children to be confrontational, I was so proud of the way they instinctively joined forces to protect and empower. It was a hugely symbolic moment for my son. He did not look down with embarrassment or shame because of the way he looked. He held his head high, proud and confident.
My plea is, if you see a child without hair you can almost guarantee that the loss of hair will have caused suffering in some way for them and their family. They can see you staring and they do have feelings. Your stare will simply add to their pain and suffering. The child has clearly been through a lot already and they probably have a long road ahead of them, as do their family and loved ones. That is all you need to know. If you have a real burning desire to find out more then ask the adult that is with them. I am sure they will much rather protect their children from your inquisitive stare by satisfying your curiosity, than watch you glare relentlessly and intrusively.
The bottom line is, children who are bald probably hate it. It might make them feel different and vulnerable, ugly and angry, sad and lonely. That is how my son felt. He just wants hair like his friends. Please be kind and respectable to children; they deserve it as much as adults.

Childhood Cancer Awareness month #teambrown

On Thursday 1st September 2016, we will be joining others to watch Bournemouth Pier #glowgold to help raise awareness of childhood cancer and this is why:

Because my seven-year old son doesn’t know what to say when people ask him how his brother is.
Because my daughter gets frustrated that she can’t tackle her brother at football even though he tackles her.
Because he has low immunity he has to avoid crowded social events where infection cannot be traced.
Because my husband wakes at night in utter panic and fear about what has been and what the future might hold.
Because my child is not a fussy eater but exposure to the wrong types of food and water could be life threatening.
Because he used to be the fastest sprinter in the school, now he struggles to run at all.
Because his grandparents struggle every day with the helplessness of seeing not only their grandson suffer but their son and daughter hurting beyond words.
Because sometimes children do not want to tell a stranger why they are not in school.
Because when my son answered a questionnaire he said he felt ugly.
Because his friends are scared that the same will happen to him as happened to that person on the TV.
Because, sometimes, people just don’t know what to say to me.
Because asking a child to remove their hat on a theme park ride is one of the most devastating things to happen to them.
Because my son has developed a medical vocabulary beyond his 10 years.
And most of all, because very time I look at my son it breaks my heart to think about what he has been through and how his life has changed irrevocably.

The thing that will go unsaid

As time is moving on, we are beginning to venture again into unknown territory and spontaneous happenings. Since Felix’s diagnosis we have enjoyed the safety of home and familiar surroundings where people know our back story and explanations are unnecessary. We have gone out of our way to ensure that everyone is well-informed and up to date with where we are at so that people feel comfortable and at ease with the situation. As we start to ruffle our wings again and get out into the real world, we are meeting people who do not know our back story or where we are currently at. I am not sure if this is a good or bad thing.

Felix does not want to be known as ‘cancer boy’ this is for sure. He has asked that if we meet new people we do not mention his diagnosis, he doesn’t see any need for it and I get that. At the moment it’s hard because I do not want people speculating as to why he looks as he does. I know I shouldn’t care but I want people to know where he is at to protect him but out of respect to Felix I don’t. So, to the man in the shop who asked why he wasn’t in school or to the barber who questioned why he wasn’t getting his hair cut, I apologise for my rather vague response – he just didn’t want me to say!
This is something I need to get used to. There are our wonderful friends, family and virtual friends who know so much about our last six months and leukaemia. Yet, there will be new encounters and friends who will one day find out but do not need to know in the first instance. This is what Felix wants. As he said right from the beginning, “I may have cancer but I am still me”. His diagnosis will always be part of us but as we reach the less intensive phase of maintenance we need to re-address the prominence that leukaemia has in our daily lives. Yes, it will continue to play a huge part in our life story but not necessarily in our daily encounters and utterances.
It is a truly exciting time for us at the moment. This week signifies Felix’s last IV chemotherapy and the end of the delayed intensification phase. Once his blood counts recover he will start the maintenance phase of chemotherapy which will continue until 2019. It is hoped that this phase will be far less intense and intrusive. Felix will be able to attend school regularly again, I can return to work, we can look to the future. There are some things that we still won’t be able to do like we used to but we are happily making plans to compensate for this.
So, as we embark on our new phase and start venturing into pastures new, we hope that that you will some with us and we can continue to meet new people and make more memories without having to introduce the intruder. I can’t wait!