When I came to pick you up from school, you rushed over to your teacher. You told her that your little sister Bommel had come to pick you up and you were glowing with pride as you stood beside me & her. To anyone that passed us in the schoolyard, you said beaming: “This is my sister!” That moment made me realise that you deserve to be put in the spotlight. So, this is my letter to you…
When we told you that I had a baby in my belly, you were over the moon about it. You went to see the midwife with me, and you got to push the buttons on the device that let us hear the baby’s heartbeat. One day you saw my bellybutton sticking out, and you concluded that the baby would come out of that very spot. A very logical conclusion, of course…!
Once Bommel was born you gained a title. When anyone asked you what your name was, you replied with: “Fiene Tomassen. Big Sister.” Capital S! And you took your new title very seriously. You wanted to help with everything and asked us all sorts of questions. I remember, you accepted Bommel immediately, even though it must have been a bit odd that you weren’t the only kid in our house anymore. But that’s the way it goes for all older brothers and sisters, it takes some getting used to.
So, when Bommel suddenly was in hospital instead of at home, you found that very strange. And rightfully so. The first time we took you to visit your little sister, you were so happy to see her. You didn’t even seem to notice all the wires and medical devices, you only had eyes for Bommel. Of course I cannot look inside your head, but I can imagine that this all had a huge impact on you. You weren’t our only child anymore and on top of that all our attention went to that newborn sister of yours. That, I think, was the moment your life truly changed.
It is very moving to see how proud you are of your little sister. You want to show her to the world. Whenever we go someplace you ask if Bommel can come with us. You already feel that she belongs with you and with us. It’s a package deal! Sometimes you ask me: “Mommy, when I was little I had an NG Tube and a monitor as well, right?” These things are so normal to you, that you think that all babies have them. When you had a playdate with one of your friends, she saw Bommel’s feeding tube and the wires for the monitor, and she asked you what those things were. As a true ‘mini mom’ you explained everything to her. When the enteral feeding pump is done, you jump off of your chair and turn it off, and then you notify me very seriously: “Mom, I turned the feeding pump off already. Bommel has been fed.” My sweetheart!
What I want to say to you…
Little darling, there is so much I want to say to you. I want you to know that I am sorry. I want you to know that I would have spared you all this if I could have, and that I wish things were different.
I am so sorry Daddy and I are chronically overtired, that we are short-tempered, that we lack the time to play with you right now and that you alway have to wait for your turn. I am sorry that we often tell you to be quiet, to be careful, to not do something, that you have to go and play like a good girl and that you have to be nice. But… you are a very good girl and you are nice…
So that is why, above all else, I am telling you that I love you with all my heart, that I am so very proud of you and that I will always be there for you. I am not forgetting you. I am not overlooking you. You matter. You matter to me and to your father, more than I can show you some of the time.
A life lesson
Unfortunately we are in the situation that we are in. This is how it is. And in and of itself that is a life lesson. Life doesn’t always go the way you expect it to go, or hope. But when those moments arise, only one thing matters: how you deal with them. That is what makes all the difference. I pray that you know and feel that both Daddy and I do our very best to be there for your sister AND for you. Even though finding a new balance in our special needs family presents a bit of a challenge, we are getting there!
Sometimes I worry about you and fear that you will need loads and loads of therapy, because maybe you felt you always came second since the age of 4. Totally unintentional on our part of course, but still… However, I keep hoping that if we stay aware of the situation we’re in and if we let you feel that we are still there for you, that we love you, that you are as important to us as your little sister is and that we do SEE you, hopefully we can keep ‘the damage’ to a minimum. You’re such a great kid! You are our kid and I am indescribably proud of you!
Like Big Nutbrown Hare says to Little Nutbrown Hare In ‘Guess how much I love you’: I love you right up to the moon - and back!