a letter to my daughter

I decided to write this after reading and commenting on a post about guilt in our Swanuk members group. 

As a parent of a child with severe and complex needs you often feel devastating guilt regarding their siblings and the time and attention you can give them. 

I also hope this can perhaps explain things, balance her memories and add good ones to the bad ones she may have.

I hope my daughter will read this when she is older and know how loved she is.
I hope as a teenager she can read this after screaming "i hate you" and know how special she is and how we have always tried to do the right thing. 

Dear daughter,

I thought about writing to you while stood at your school gates. I thought about how proud I am of you and how special you are. I hope you read this in the future and know how much we love you both.

You were very excited to get a baby brother. "babybuttons" as you named him whilst still in my tum. You were expecting a baby you could cuddle, you were not expecting a baby in a incubator who you could barely touch. You wanted him home. So did we. In those first weeks we were told terrible things about your brother, and wanted to be by his side. Grandparents rushed about collecting you from nursery, you rarely had tea at home, you missed us. We tried to make sure someone was there to read you a story and put you to bed at night. You charmed the nurses in SCBU, sang songs to your brother, and kept us smiling. Never think we love Nate more, he just needs us more at times. You made comments to family members that "mammy cries a lot" which broke my heart, I wish you hadn't seen that.

Your brother came home briefly before a long hospital stay. You found this very difficult, as did we all. Your dad and I took turns staying with your brother so someone was always home with you. When your brother did come home again it was with an awful lot of equipment. We didn't care, we were all together again.

Your brother was often extremely poorly, I hope you don't realise how poorly. We often felt torn, and wanted to be in two places at once. We abandoned his bedside so we wouldn't miss your first nativity. You once slept through an ambulance and 2 paramedics in heavy boots stomping upstairs when your brother stopped breathing. Every appointment we have with your brother's respiratory dr and paediatrician inevitably turns to you, they think you are fabulous, funny and clever, as do we.

You get excited when your brother does new things and are endlessly hopeful about what he will do in the future. I see the wistful look in your eyes when friends are chased by their brothers and sisters. It pains me to shatter your dreams. You want him to walk and talk but these things won't happen. We havent talked about how long your brother will be with us. I hope that when you read this he still is. I hope I made the right decision not mentioning the unmentionable. The doctors have started to talk more long term about your brother. So who knows....

I want you to know that we have tried many things to help our family have quality time together. We have had help from the rainbow trust, you were very fond of the lady who looked after your brother while we played or went to the park. You are torn about the time your brother spends in the hospice- you love spending time there with him, but you miss him when he's there and you are home. You ran the mini GNR and raised a lot of money for the hospice. You love that we go to the cinema and play games, but you struggle to sleep without the sounds of his concentrator and ventilator. All you want is a happy medium. Your brother at home, but him needing less time and attention.

You have adapted to all of his equipment; a dab hand with an enteral syringe or hyperfix. You talk to friends about things he uses. Without realising it you are normalising disability and raising awareness.

What I hope is that you remember how much you love your brother and how much he loves you. His face lights up when he hears your voice. You are his favourite person. You won't get up on a morning without snuggles in bed with him.

I won't lie. Things have been incredibly difficult for us all. You though have had to deal with the greatest change. Not meerly gaining a sibling, but losing a bit of your parents. We have always tried to do what is best. Even writing this I can see that. I hope you do too.

Your brother has changed things. He is shaping who we are as people. You are kind and patient and tolerant of others ( most of the time). I am often tired, harassed and busy. But this is getting better. We enjoy time we spend together much more now and I look at you and see a happy girlie.

We are resilient but mostly we are just very very silly.

Love you baby x