Start Spreading The News

The diagnosis was made on the Wednesday before the Easter weekend. I spent the rest of that day in something of a daze. I know what I did, but my memories of it are a bit foggy. One thing I didn't do was tell many people

This was a conscious decision by me and my husband. We didn't want people to know, and to have to deal with the inevitable questions, until we had got our heads around it ourselves. Our immediate family knew, and I told my best friend, L, by text the same morning, but that's it. I'll be honest, I didn't want to talk about it. I didn't want to explain, to be asked questions I didn't know the answers to, or to deal with the sideways tilt of the head. I knew that everyone would mean well and be supportive, but I didn't want to have to deal with that support.

I spent the next 24 hour waiting for the referral phone call, jumping whenever my phone beeped. The phone did not leave my hand all day and all night. I remember sleeping with it on loud, in case they had nocturnal staff at the women's hospital. When sleep eventually came it was deep and exhausted. But I still woke up if an email came through, and snatched my phone up to look.

When the phone call did come, I was in the middle of a National Trust field. L had invited me out to walk with her husband and 2 girls. The two girls would keep my son entertained, and I could walk. I like walking. It sorts my head out. Topics for discussion was anything and everything, including the cleft and what we knew which was essentially nothing. I'm a big believer in not googling anything medical, and L agreed having had her own share of medical issues over the years. The phone call came and the appointment was scheduled for the following Tuesday due to the long weekend.

5 whole days.

What the hell was I going to do for 5 days.

That said, after a morning with L and her family, I felt close to normal. I went home and did things. Couldn't tell you what but i do remember feeling like I had accomplished something. I felt like I was okay with this, that I could deal with the world and lie my way till Tuesday until I had more information and could start telling everyone.

I was wrong.

That evening, Maunday Thursday, marks the start of Holy Weekend. I sing in a church choir, so was due to sing with my friends in a quiet service that evening. I thought I would be fine, and that I could do it. That I could talk and laugh with friends and say "oh fine," as they asked how I was and how the baby was doing, I thought that if i kept telling myself I was fine, I would be.

I lasted two minutes.

Walking into that room my head filled with white noise, and my stomach dropped. I had to get out. I had to leave before anyone saw me. I hid at the back of Church wondering what the hell I was going to do and then I left. I tried to keep calm as I drove home. The white noise still filled my head and I felt sick. I was in no fit state to drive really, but I needed to get as far away from the white noise as i could.

Once home I collapsed onto my bed and sobbed, and sobbed, and sobbed. It must have been nearly two hours. My husband and I just lay there, me sobbing, him just being phenomenal and telling me it would all be alright. My mum came home and hugged me and we all just sat there, me a wreck, everyone else incredibly strong.

We talked about our fears, and my fear specifically of having to tell people. To have to go over everything repeatedly to everyone. To have to explain, to be asked questions I didn't know the answers to, and to deal with the sideways tilt of the head.

We came up with a plan.

We emailed and telephoned a handful of family and friends and asked them to pass on the news to other people. I was worried at the time that this was a cop out, and that it was unfair to pass our bad news to others to pass on. In retrospect it was the best thing that we could have done, neither husband or I were in the right frame of mind to repeatedly go over what we knew and didn't know, and our friends and family were wonderful to do that for us.

Over the next few days, the news filtered out and the support we got was unbelievable.

Meanwhile, I was not sleeping and vomiting frequently. My nerves had gone.