Dear Ella-Marie,
Soon the time will come. For the third time in four years, I will walk with you through the corridors of the UMC. Those hallways lead to a place where we would rather not have gone, but will have to be anyway. I already know that we will tell jokes together, laugh and secretly hold hands as well. We will go in, I will give you a hug and kiss, wait with you until you are asleep and will say that we will see each other again soon. I also promise you that I will tell the doctors to choose a nice headband and not to give too many punctures.
But what I'm not going to be able to tell you at that time are things that are so important to me. And that is why, my dearest darling, I am writing to you right now what I want to say.
Your mom and I heard a saying. It read as follows: "If it
doesn't go the way it should, then it should go the way it goes."
And when we heard it the first time, I thought it was well said ...
but then I started to think about it and actually that's not quite
right.
Because you do so much more than "as it goes."
Ever since you were born you have been amazing people. I remember well when there were more than 15 doctors, nurses, gynecologists and midwives standing around the bed because a very small and skinny girl wanted to come out of the womb 6 weeks early. From the second you came out of the belly, you started crying. That was a good sign and the very tense faces suddenly became cheerful. Everyone thought you were a brave girl even then!
Every year you also continued to fight. From one of the smallest and skinniest kids in a daycare center, to being the first and only girl with 3 other boys in the entry class. You probably don't remember any of it, but each time we were heartbroken and scared to leave you behind ... only to be told that night how sweet, brave and good you were doing.
Over the years, guilt has been very regular. The why-you question played through my head so often. What did we do wrong so that you had something on your brain? What steps could and should we have taken to make sure you weren't going to have epilepsy? Even though I know you don't blame us for anything, I still want to say sorry. Sorry that you have to carry this burden. Sorry that you can't have 24 hours of peace in your mind. Sorry for everything. By surrounding you with love and warmth every day, we still try to do everything we can to make sure you are as comfortable as possible.
Time goes incredibly fast. Yesterday I took you in my arms for the first time and was able to look into those bright blue eyes. A quick blink of my eyes and I you have grown a few inches again. But no matter how big you may grow, to me you will always be my little girl. And we are incredibly proud of this little girl. How you get up every day with a smile. How every day, with all the adversities that there are, you always find the courage to be our little Ella-Marie. Sweet, happy, tik-tok dancing, hugging (but no more kissing because that's "dirty") and carrying on with such strength every time. Respect!
I also want to thank you. Actually the parents should form the child, but in all this time I have wanted to notice that you have formed me. When things don't go well, I think of you and how strong you are. That then gives me courage to go on.
Soon you will wake up. The world will look different then.
Physically, you're going to have a harder time. But I hope so hard
that this epilepsy can finally disappear. That you won't have to be
scared every second of every day. That you can grow back, without a
daily setback.
And know, dear love, know that I will ALWAYS be there. No matter
how difficult it will be, no matter how hard it will be. Together
we will continue to build a new future.
Dear Ella-Marie. Thank you. Really thank you for being such a beautiful and sweet girl. And don't change, but continue to grow the way you are doing. I love you forever!
Daddy
Why this text?
We don't say the positive to each other enough. Too often things
are taken for granted. I have full confidence in the surgery, so
this is not a farewell letter. It is, however, something we often
say to Ella-Marie.
If we can give one hint: say "thank you" or "I like you" enough and
sincerely to those around you.
Ella-Marie read this text and at least I received a big hug :-). I hope for you that you may also receive a hug!
Pieter
