The doctor on Saturday (7th) told us that he believed Asa has Down’s Syndrome (DS). There were minimal tears in that little sitting room on Saturday. It was rather factual. The doctor, I’ll never forget. Doctor Mally. He was lovely (apart from referring to Asa as ‘she’!). If we are honest, we were hoping he had it wrong. We signed consent forms for the chromosome test to be conducted. We prayed for great miracles, that God would intervene and heal our son of this condition. This disability. This unknown fear of the future. This baby of ours.
Saturday night I lay awake in the hospital; alone, sobbing, feeling like my heart was being crushed under the weight of everything we were facing. The fear of the unknown was paralysing. All I wanted was to be home with Emelia, Jon and our son, minus the DS. My mobile phone signal was rubbish on the maternity ward and never before had I never felt so alone and fearful. Yet I knew God was with me… One of those times when I had felt abandoned, but choosing to trust God as best as I could, among all the pain of my heart, faith hanging by a thread…
Yesterday Asa was officially diagnosed with Down’s Syndrome. There it is. The start of our new journey. It wasn’t a big shock as we already knew it for ourselves. When Asa is sleeping we can’t notice the features of DS that the doctor’s can, but when his eyes are open he does have the typical upwards slanting eyes that characteristic of DS. He also has a larger than average gap between his first two toes, called a sandal gap. He has two palm creases – apparently a lot of babies with DS only have one crease. So only trained medical staff would have spotted this. (I will go in to the actual diagnosis another time).
At the moment, I feel I am lurching from day to day in a bit of a haze. It’s foggy ahead. It’s dark. It’s scary. At times it’s ok. It’s busy with the to-ing and fro-ing of hospital visits, text messages, Facebook and tweets. People are calling to offer congratulations and asking how Asa is doing. But I feel I am running on auto pilot. I am grateful for Jon and Emelia and the ‘normality’ of having a toddler at home – for the need to continue with daily life. I think everything would be easier to deal with if Asa were home with us. But alas, he is still fighting an infection in the Neonatal Unit in UHW.
Yesterday, we were given a booklet for new parents of a baby with DS. It is useful, and upsetting, and empowering, and frightening, and comforting, and about every other emotion I can think of!!! One of the most useful pages contained one mother’s interpretation of the experience of having a child with Down’s syndrome, called ‘Welcome to Holland’. You may have read it before, or it may be new to you. Let me share it with you here:
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 guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may 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 in 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 guide books. 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… And Holland has tulips. Holland even has 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.”
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.
By Emily Perl Kingsley
Later that day….
On the whole I think Jon and I are coping ok now. Yes there have been many tears, many fears, many questions, many doubts. Every now and then I allow fear to grip my heart and I feel utterly terrified of the future with raising a child with Down’s syndrome – and the uncertainty that this brings. Part of this is ignorance of the condition – we have very limited experience of Down’s.
We know it’s going to be a hard journey at times; but we also know we will many good times together as a family. We’ll still have trips to the park, to the beach, we’ll kick a ball around, we’ll laugh together and curl up on the settee together. We have a God who is in control and is with us every step of the way, and of course a really supportive church.
Author’s note: There’s a line I wrote above that says ‘On the whole I think Jon and I are coping ok now’… How wrong and naive I was. It is now October and I still have very difficult days in coming to terms with Asa having DS. I have not found it to be a linear line of acceptance, but one that is mountainous – a journey that is so up and down that it simply has to be taken daily. What I should have written above was that we were coping better than the first two days when I was in hospital and constantly crying. I thought that once I had accepted it that I would no longer feel sadness. I was wrong. But I am still right in how I am feeling. No one can tell me how I should be feeling. Jon copes differently to me and is less of a worrier. I, on the other hand, get easily upset. Neither of us is wrong – just different. And I love him for that.