A Letter to my Son

Dear Hugo

When we were at the hospital in those dark and difficult days after your diagnosis, the doctors talked to us about the barrage of drugs you would need to take.  They tried to prepare us for what was ahead, for the side effects you may potentially experience.  The list was long and scary and I worried that somewhere in the process of trying to heal you we would lose all the little bits of you that make you who you are.  That our happy, loving, easy going, sensitive child might disappear before our eyes, replaced with a child I no longer knew.

Before you were born your big brother had entered our lives.  He made me a mummy and showed me I could love in a way I had never experienced before.  Then you came along and you completed us, you completed me.  You needed me in a way that no one else had ever done, but what you don’t realise, little Hugo, is that I needed you just as much, if not more.  Losing you in the worst sense is not an option, but neither is losing you in any lesser sense.  Our family has balance, it simply won’t work without you, I wouldn’t work without you, just the way you are.

But with all you were about to go through how could I expect that you wouldn’t change, that this journey wouldn’t change all of us.

What I wasn’t expecting was for our shy child to grow in confidence.  For you to remain happy and to deal with everything thrown at you with a bravery and understanding far beyond your years.

You are sill very much my sweet, sensitive, loving little boy.  Cuddles are still in regular demand, but so are requests to visit playrooms.  After weeks of not walking you are making up for lost time and I love to see you enthusiastically toddling along our high street.  You have charmed nurses with your infectious smile and new found cheeky side.  Your relationship with your big brother is flourishing, you adore him and have been missing him greatly since his return to school.

In the days immediately following your diagnosis you could barely keep your eyes open.  Now I spend my evenings chasing you around your bedroom trying to get your pyjamas on, the sound of your laughter filling our home and our hearts.  You make us smile every day with your cute toddler chatter and crazy dancing.  You show forgiveness to the nurses that have to hurt you and give love, great big love and affection, not just to us, but to those you used to be shy of too.  You are a beautiful little person, inside and out.  This journey hasn’t dimmed your spark, not at all.  You are still a bright shining light, impossible to resist.

When you were born you shot out with a speed that took my breath away, your hand above your head in a superman like pose.  I should have realised then that you were tougher than you looked, that you had the strength to be a little hero.  You continue to take my breath away, every single day.

I don’t know where this newfound confidence has come from.  Is it because you are at home more?  Or because you come into contact with so many more people due to your illness?  Is it something that would have come to you anyway, now you are getting older?  We will never know and it really doesn’t matter.  What matters is you are still here, every little bit of you.  This journey is changing you, but not in the way I had feared.

I hesitate to say that there have been any positives to you becoming ill and if I could change it or take your place, I would do so in a heartbeat.  But it has given me the opportunity to watch you grow.  To look into your eyes and see you, really see you.  To sit by your hospital bed and watch you sleep, to hold you in my arms when you need me, to push the rest of the world to one side and focus solely on you and your needs.  I love spending time with you and it has been a privilege to watch as your confidence grows, to see your loving and caring nature emerge further.  I feel like we are a team, fighting this battle together and in doing so we are creating an amazing bond, even more precious than anything we had before.  You are being braver than you should ever have to be and I am so sorry that you need to be, but you are showing yourself to be one amazing little boy.

We have a long way to go and I don’t know what the rest of this journey will bring, but this gives me hope that we won’t lose you.  That you have the strength to fight this and come out the other side more confident, brighter and even more wonderful than you were before.  That our family won’t be broken, but stronger than ever.  I love you and I am prouder of you than I can possibly say.  I am honoured to be by your side fighting your fight with you.  Keep going my beautiful boy, keep doing what you are doing.  I promise to be right there with you every step of the way, forever.

Mummy x