New Year letter

Dear Samuel

Today is the first day of 2015. Today is the first day of a whole year we will spend without you here with us. We miss you so much. The hole you left is very big and very deep. You were just too special, too important to lose and we are still struggling to adjust to our new life without you.

We went to visit your resting place again this morning. Your forever bed. Do you hear us when we talk to you? I know I talk to you a lot anyway, but it feels easier when we go there. It feels like you are there with us. But this morning felt harder than usual. I think not having you with us for Christmas had only just hit us and our hearts were heavy. We need you to give us strength Samuel. Strength to adjust, strength to cope with missing you but to also be the best parents we can be to your little brother.

But you know, those people you gave us, those people you brought into our lives and those whose we already knew but have become closer to us thanks to you, they’ve been wonderful. They talk about you, they miss you with us and they are here holding our hands. But I worry about your Dad. He’s been upset by people who he thought would be here for him but have disappeared. He is also going back to work next week which will be good for him, but will be tough too. He needs you to watch over him. He needs you to send him love and strength. He needs your hands wrapped around his heart.

As we start this new year, I feel rather lost. You were my world for four years. Everything revolved around you. And now you are gone. What do I do? Yes, of course I have little Toby to keep me on my toes, but the hole you have left is enormous. I will probably have to get a job at some point as money will start to get tricky, but at the moment I can’t quite bear the idea of strangers looking after your little brother, so will have to give that some more thought. Hold my hand please Samuel and help me find my new path. I loved being your mum, your carer, your nurse, your PA. It was the best job in the world.

I hope you liked your special celebration and saw just how important you were and always will be. You were always such a special little boy. Even though you couldn’t walk, talk and do things that others could, you really did touch the hearts of so many people. And sometimes I think you were the wisest one amongst us. All that mattered to you was love and cuddles.

When you left us, I think we felt that all we wanted was to be with you. But we have Toby. And I think you played a part in making sure that we had him before you went. He has saved our hearts. He has given us reason and purpose. He is also a wonderful little boy. We can’t wait to tell him more about you as he grows us and help him to understand just want an amazing boy his big brother was and will always be. Please always watch over him and guide him to being the best person he can be. He turns one tomorrow. Can’t believe he will be a whole year old. Today we got him measured for his first proper shoes. He’s walking so much now. If you were still here I bet he’d always be toddling over to you to touch you and lean against you (and stroke your lips!).

Your Dad and I still have our blue glass hearts in our pockets. You have one in your hand too, so you will always have our hearts with you and yours will always be with us. Wherever we are, wherever you are.

Oh Samuel I miss you. I miss your cuddles. I miss the touch of your soft skin. Your squidgy soft hands. Your cute delicate feet. Your beautiful eyes and those incredibly long and dark eyelashes. I miss your soft tummy. Your cute little knees. Your soft, golden hair. Your amazingly cute little nose. I miss that freckle on your bottom. I miss that crease on your thumb. I miss the way you did those big over the top yawns. I miss how you stretched and we said you were doing your Superman stretch. I miss the way you purred when you were cuddled. I miss the sound of you snoring. I miss looking after you. I miss how you fidgeted when I would try to cut your nails. I miss putting your lipsalve on (or your ‘lipstick’ as your Auntie Lou would say). I miss giving you your medicines and putting you on your feed pump. I miss changing your pad and making sure you are fresh and clean. I miss watching your overnight girls fuss over you and pamper you. I miss showering you (although I know you didn’t really like it). I miss getting your bags ready for school. I miss taking photos and videos of you. I miss telling your overnight carers what kind of day you’ve had. I miss reading in your school diary to see what you’ve been up to. I miss having your Julia’s House carers here. I miss holding your hand. I miss talking to the chemist about your prescription. I miss nagging the doctors. I miss making sure we have enough of your pads. I miss washing and ironing your clothes. I miss your P Pod. I miss lying with you on the sofa. I miss watching your carers cuddle you and telling me that that’s their favourite part of their shift. I miss going out with you in your buggy and feeling proud that you are our boy. I miss seeing you with your brother. I miss watching him come up to you and touch you and stroke your lips. I miss getting into your bed with you. I miss making phonecalls and saying, ‘It’s Zoe here, Samuel Monk’s mum’. I miss putting you in your buggy and tucking your dinosaur blanket in around you. I miss giving out your date of birth. I miss seeing you in your Dad’s arms. I miss watching him talk to you about football and be so proud to call you his son. I miss seeing the joy in his face when he would look at you. I miss the van. I miss choosing your clothes and trying to find coordinating socks! I miss talking to the dietician about your weight. I miss texting Auntie Carol and asking her for advice about you. I miss watching the pleasure people took in having a good Samuel cuddle. I miss people telling me how wonderful you are. I miss worrying about you. You see I don’t have to worry about you anymore…

I miss you Samuel. So very much. And I will always love you with every single part of my being.

Mummy x