That’s my secret, I’m always angry.

I think the hardest thing so far has been the anger, swiftly followed by the crippling guilt.

The anger is sporadic, chest tightening and blinding. I find myself begrudging anyone else with a “normal” pregnancy. People who are worrying about sleepless nights and nappy changes. I would give everything and anything in this world to have the same worries as them. People who have had their babies, are home, and the issues they’re facing are which set of grandparents have seen the new arrival more or whether the new bottles fit in the steriliser.

At no point do I wish a chronic illness on their baby, I am genuinely happy for each and every one of those families and their children. They have just as much right to moan about the day to day trials of parenthood. What we are, and will be, experiencing does not and never will, invalidate the experiences of others. Yet my anger sees these people and can’t help but scream “why us”

Why our little boy? Why can’t he come home straight away and meet his family, the people who already love him so much? Why will he have to go through surgeries before he’s even slept in his own bed? Why will his early life be full of hospitals, tests and treatment plans when it should be milestones, adventure and, at most, the odd plaster from falling over? Life is cruel and unfair.


Then the guilt sets in.

I know “mum guilt” is a very real thing and that society likes to blame mums for pretty much anything to do with their child, so at least I was expecting that part. Perhaps naively though, I assumed that it began once baby had arrived in the world.

Was this my fault? Don’t Google things, never Google things. The number of sites that state cheerfully that they “can’t rule out the cause being something the mother does in early pregnancy” is high. I know that’s bollocks. I know it’s not logical. The heart is formed by 28days. Most women don’t even know they’re pregnant before then. The dice had rolled and it was decided before I’d even peed on a stick. I don’t smoke and I don’t even drink, yet I still sometimes spiral into a black hole where I am to blame.

The other guilt is that I don’t really begrudge other parents and families. I genuinely don’t. I hate myself for being jealous of them.

I love seeing how happy they are, how well their babies are growing and changing and seeing my friends take that leap into parenthood. I smile with them when they post their baby’s first steps or word. I’m genuinely sympathetic when they’ve had no sleep and are feeling like they’re struggling. No new parent has it easy. There’s always something to worry about and stress over. Babies love to throw curve-balls at their parents just as they think they’ve cracked it. It’s hard work even for a “normal” family.

I guess the closest thing I can describe this as is grief. We are grieving the life we imagined for the next few years. It’s true that you picture bringing them home and all their firsts as soon as you know they exist. We have spent hours talking about our plans and dreams for him. We’ve discussed everything from who was going to do the night feeds to what car would be the first he’d race with his dad. We knew what and when his first holiday would be, how old he’d be when he first handled a dog at a show (& I’d secretly planned his own little show dog too).

Now those things seem trivial and unimportant. I, personally, am struggling to see through the tunnel to the light at the other end. I know it’s there. I’ve seen the happy endings and read the stories about what other CHD children have gone on to accomplish. Sometimes it’s just hard to see past the roadblocks along the way, especially when so much is unknown.

Our story will be a different one to the people I envy so much. I’m going to feel angry, guilty and terrified. All parents do. Our little boy will change our world forever and I can’t wait to meet him. Some days are just going to be more difficult to see the light in than others.