4 Months Later

Over the last 4 months things have been hard. Very hard and I think people just don't understand how hard this is. People concentrate on my ileostomy and to be perfectly honest, I couldn't care less about it. When I first found out about it, I didn't care because at the time I had my babies to look forward to. I don't see why it should change now.

I went to Ibiza in September for a week. Perhaps I didn't appear upset enough because I keep hearing about how well I did. Is that because of dealing with the ileostomy or the death of my children? I don't know and can only assume that it means both. I cried every day of the week in Ibiza, I did before and I still do now. Just because people don't see me cry, it doesn't mean i've got over it. I never will. I cannot say how many people asked me if I had fun when we returned. I know people don't realise that saying things like that hurt, but it does.

Yes the ileostomy was hard to deal with. It was difficult walking round in a swimming costume with my bag underneath. The bag is waterproof and is fine when swimming but it is difficult to tell how full it is because the costume is tight over the top. Drinking alcohol makes everything more watery meaning that it needs to be emptied more often.

I generally change my ileostomy bag every other day but have to change my mucous fistula dressing every day and sometimes more often depending on the output. Colostomists get to know when their bowel works each day meaning that they can pick and choose when they change their bags. They only tend to open their bowels a couple of times a day. The ileostomy however, is active 24/7. If there is no food left in the intestines, then after a while I tend to get acid come out. The acid eventually eats through the bag and once on the skin, it immediately burns it. The best time for me to change the bag is first thing in the morning before breakfast. Of course sometimes it doesn't work out that way. If the bag leaks or splits, I have to change it straight away. It is easy to catch a sharp edge of the nail on the plastic without knowing. It's a nightmare, especially if you have just eaten.

Jodi has been amazing. I speak to her most days and we go out or just drink tea and talk. I don't think there has been a day when we haven't talked about Lola and Lukas. The good thing is, she knows she doesn't fully understand what Craig and I are going through but she never says the wrong thing. Jodi comes to the cemetery sometimes and we take Charlie with us to see his friends. Every time I say that to Jodi, in my head or while I am at the cemetery, I can't help bursting into tears. Charlie should have 2 friends that he can grow up and play with.

The hardest thing in the world is seeing babies, pregnant women and prams. It's like someone has punched through your chest and pulled out your heart. It's the only way I can describe it and on top of what i'm already feeling, it doesn't help. There are people out there who think i'm being silly and I want to scream and shout at them for thinking that but I can't because they just don't understand.

Craig and I have started to go to support meetings. SANDS (Stillbirth and Neonatal Death Charity) meet on the last Tuesday of every month and so far we have been to 2 meetings. Our third is tomorrow - early because people need the support before Christmas. We also helped out with the final preparations of the new baby garden at Kingsdown Crematorium. It's a place where we can go to think about our babies and we have placed pebbles in their memory. The support meetings are hard and everyone has a different journey to tell. All heartbreaking. I would love to take people to the meetings with us. It's really the only place where someone else would get a slight understanding of what we are going through. We talk about how people react towards us and what has happened and also about the things that people say.

I went to my office on Friday for the first time since everything happened. I've been scared to go in, not because I don't want to see anyone, I did. It's just hard thinking about what people will say to me and I was worried about getting upset. I was however, told on Saturday that i've cut people out of my life and isolated everyone. Really? No that's not true. You know who your friends are when things like this happen. I have spoken to a couple of girls from work and seen a couple so why has this been said? I have no idea. To be honest, it's probably best not to think about it. I've seen the people I really want to see and speak to and that is that and if people want to see me, they can make an effort. It just shows that people really have no idea.

Everyone from SANDS is amazing and I feel comfortable being around them. You know that someone won't say something innapropriate to you and if they do, it's just because they are dealing with things in a different way and you then feel comfortable explaining the differences.

I received a letter from the hospital today. It was informing me that my bowel reversal operation is going to be on 16th January 2012. I'm happy that I have a date but I just keep thinking about wanting a baby. I feel that I need a baby, it certainly will not replace Lola and Lukas but it's the feeling of wanting to be a Mum so badly. We have to wait around 6 months after the operation before we can even think about it again. It seems like such a long time. I could of course have my reversal operation after i've had a baby but in reality I know it's best to get me on track first.

The surgeon will open me back up using the same scar and then cut around each stoma. They will then be pushed back through and once the ends are found, they will be stapled back together. People keep telling me that once i've had my reversal I can make plans and get on with the next chapter of my life. This is one of the worst things people can say. I know we have to get on with our lives and in our own way, we are but don't tell us to move on. We will never forget Lola and Lukas and I hope others don't either.

Last week I met with some of the Mummies from SANDS. One of the things we spoke about was when New Year comes, we are worried that friends and family will forget our babies because they want to put the last year behind. I think that people who don't know how to deal with what has happened, think that moving on is the best thing because they cannot deal with their own feelings. I might be wrong but it kind of makes sense.

Christmas this year will be so hard. Craig and I originally decided that we wouldn't really do anything this year. We are going for Christmas lunch at a pub with Ash and Jodi and their families. I'm hoping that because it is something we wouldn't normally do, it will help with us getting through the day. Things should have been so different for us.