Hi, My name is Ben, Hope’s father and husband to Heidi, the main blog writer. As I sit here at 10pm sipping on a coffee, its my turn to show you a tiny glimpse from the fathers point of view from the journey so far. Raw. Honest. Painful. Joyful.

Over the next four months, I want to touch on the themes of:

Acceptance and grieving

Strength, weakness and the push

Society and it’s views

Creating a new path and the future

All these themes interweave together, impossible to separate, however, come on the journey as I try our best to explore the oxymoronic theme of Acceptance and Mourning.

Acceptance is a funny thing, no-one tells you it’s trait that you need, until you need it through the pregnancy, and as I now know, well into the future. Accepting something means you agree to, and come to terms with something that is completely out of your control.

Do I acknowledge that my daughter has Down Syndrome? Absolutely

Do I accept, or have I ever accepted, that she has Down Syndrome? No. It breaks my heart, but no. I don’t accept it. Read until the end and hopefully you understand why.

When Heidi and I found out the news of the possible Down Syndrome, I was crushed by the fact that our little girl wasn’t healthy, wasn’t “normal (I hate that term) and possibly wouldn’t survive the pregnancy. I was grief stricken for days, which turned into weeks, which turned into months, but I felt silly, no one has died, so why was I grieving so badly? From the moment I opened my eyes to the moment the last thought left my head in the evening, I was grieving about “what could be”.

This was a message that I sent my dear friend, and confidant:

The issue was, we had the information too soon, we knew something was wrong months and months before the due date. Two Scenarios I want you think about, both have positives and negatives:

Scenario 1: You are told that there is a complication, you are now mentally prepared for it, but you are months away from holding your dear baby in your arms?

Scenario 2: You are told there is a disability with your newborn baby, you look down, gaze into their eyes as you fall deeper and deeper in love with them. However, this isn’t what you planned for the last 40 weeks, you need to prepare for some major challenges ahead.

Having all the information is not necessarily a good thing. I personally would have preferred Scenario 2. I would be upset, but that love I felt for Hope the first time I saw her, would have made the information that much easier to hear.

The only way I can easily describe the way I felt, was like the world had lost all its colour and had turned into a dull black and white landscape.

In the delivery room, through the tears, I heard a cry, the softest cry I have ever heard. But that’s all it took, that’s all it took for my world to be blasted full of colour once again! Through the tears gushing down my face, a smile appeared, for the first time in months, I took the deepest breath and the grief was gone. I want to go into further detail about the delivery room experience, but I will post it at the later date.

Off the nurses, doctors and I rushed to the NICU, both twins wrapped in a plastic bag , like the one that you would cook your roast chicken in, and got introduced to our home for the next 10 weeks.

As they were working on Hope, I saw the palm of her hand. A deep crease ran across the middle, a sign of Down syndrome. “We need to take some bloods to test for down syndrome, you will know within 24 hours” the nurse said. There was no need, I closed my eyes, I thanked the Lord that I had a daughter and smiled. I had acknowledged that Hope has Down syndrome.

Acceptance – I don’t accept that Hope has down syndrome. The moment I do, I put her in a separate bubble, a separate category to her brother. The moment I accept it may be the moment I stop fighting as hard for her as I have been. It would be so much easier to accept that she will be delayed, physically and possibly mentally, but no. That is not good enough for me. I will not accept that.

I will fight for her with every second of every day, like I have been for the last 62,636,627 seconds since she was born. (True amount of seconds at the time of writing this blog)

Hope, I will make you work hard everyday! I will cry with you when you cry, while you are screaming out in pain because your muscles are so sore from your Physio exercises. I will say the same thing to you a million times a day for you to say the simplest of sounds. I will meet with specialist over 5 times a week to ensure you are on the right path. I do it because I love you!

Hope is Strong, Hope is loved.

Hope has down syndrome, I acknowledge that, but I will not accept she is any different to any other child.

Lets change the way we think! Instead of “a Down syndrome child” change it to “a child with Down Syndrome”. Let’s put the child first, not the disability.

I’m going to leave you with a poem, titled “Welcome to Holland”

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s David. The gondolas in Venice. You may even learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes on and says, “Welcome to Holland.”

“Holland?” you say. “What do you mean Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, tulips, even Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Source: E.P Kingsley

Hope, You are my Holland! xox