I recently had the pleasure in presenting this to families, clinicians and pharmaceutical companies at the 4th International CDKL5 Family Conference in Denver. Many people ask me to post and send on, so in the spirit sharing it is below.
Having a child diagnosed with CDKL5 is not something any of us has taken likely. We may have started out feeling Anguish and even Anger – why us? Why me? Why my child? What now? People will tell you, you will learn to Accept the diagnosis in time. But at the very beginning you feel Bitter. You persuade yourself to Believe that it will all be OK. People will tell you are Brave because “they couldn’t do it”. But you do it because you have no Choice. In the Chaos of it all you know there is a little human being that is relying on you.
As time goes on you’ll begin to release CDKL5 is complex, its challenging, and there is no Cure. It’s difficult to navigate with a Diverse set of symptoms which you quickly have to get your head around. You Despair ! You quickly become an expert in CDKL5, and in the DRUGS ! You see all that is going on around you in the world – a world which you used to belong to and you may feel Envy, envy as your child isn’t achieving the milestones you thought they would, or envy that a day trip is no longer something which can happen at a drop of a hat. Until one day your child does something which to many is so insignificant but that to you will feel Elation.
Elation as they may have looked at you for the first time, they maybe have made a sound which sounded like Mamma or Dadda, or they rolled over a little. These moments give you hope and even expectation. As your child gets older there may be times when your relationships aren’t so great, there may be some “fights” with people you love, “fights” to get professionals to listen to you, “fights” to get access to medications.
You may long for the freedom you once had, but this is only fleeting as you know this child before you has changed you as a person. What does the future hold ? No longer are you thinking of weddings, but wondering who is going to look after your child when you are gone – this leads to grief and even heartbreak - for the child you thought you would have and the life you hoped they would have. Now you hope for simple things to make a difference.
But you pick yourself up. You feel humble that this beautiful child who came into your life has changed it beyond measure. The insomnia or broken nights’ sleep become part of daily living and as the years go by you get used to living on little sleep because you have a child that has gone through so much. You struggle with the rest of the world’s ignorance of the condition and the challenges you and your child face. But you are inspired by your child and how they face those challenges.
There is no justice as to why you had to take this journey, but you have learnt a new way of living. You feel joy at simple things and seemingly minor achievements. You will feel more compassion towards others, you will sometimes see kindness from others as they try to understand how you do what you do every minute of every day. You do what you do out of love not because you have to but because this bundle of joy you held in your arms will always give their love to you and depend on you to keep them safe and healthy and be their voice. Life, whether CDKL5 is in it or not is never a bed of roses. That is what makes us all different. We all may be sharing a path on this CDKL5 journey but we are all experiencing it in different ways. Some will feel manic at the very thought of what is around the next bend or corner, there maybe some morbid thoughts and this is entirely normal. None of us are naive enough to think it wasn’t going to be easy once we stumbled, some of us like a baby deer taking their first steps, onto this endless path. You have to try to remain optimistic in spite of everything. It will be “OK”.
OK because we learn to adjust. OK because the panic we once felt is slowly turning to peace. Peace of knowing you have learnt to “deal” with CDKL5, you know its horrible twists and turns, you know what it has robbed you of and you no longer question it. You know you are qualified to advocate for your child, and you know you are qualified to talk to people about what CDKL5 is and how it affects you as a family.
The reality is that you have to stay strong – strong for yourself, for your child, and sometimes for everyone else too.
You learn to say STOP – no more overloading your child with seizure meds which aren’t working. You want to trust professionals to do the same, you want to trust scientists to find a cure or effective treatments for your child. You want to trust in whatever higher being you pray to, to make it OK.
We all understand – we understand the condition, the challenges, the hopes and dreams, but most importantly we understand each other.
In the end we will be victorious. The simple things we have learnt to wish for will come true. We will continue to WORK together to make this happen for each of us.
This X CHROMOSOME is not going to beat you. There is nothing you had done or could have done to prevent CDKL5 coming into your life. YOU have learnt its twists and turns, the fate it has bestowed on you, the changes it has made to you as a person, the Journey it has put you on and the path you have to walk with so many of us here and others.
You learnt or will learn CDKL5 did not just happen to you - it happened to every person in this room : Mums, Dads, brothers, sisters, grandparents, aunts, uncles and the professionals amongst us too. If it hadn’t happened then we would not all be here today. Final words…… learn to live with it as best you can learn.
Re-frame the word so it no longer brings you anger. But brings ZEN to your life. For me my daughter stands for Courageous, Determined, Kind, Loving and she has that 5 trillion times over.
She is not deficient or disordered in any of these things.
CDKL5 does not define your child - so Don’t let CDKL5 own you.
Own your destiny, and take back control of how CDKL5 impact YOU and your family.
Written by Carol-Anne Partridge, Mum to Amber aged 13 living with CDKL5 Deficiency