Hindsight is 20/20 right?
There are so many things I wish I could tell this woman in the weeks after Eva was born.
I don’t know if I would have listened, but I would have liked to have tried. Some of these are things people did in fact say to me, but I didn’t believe them. I felt like some of the things people said felt ridiculously optimistic. Optimism to the point of naivety and foolishness. It felt like believing them was fooling myself. I was delivered one piece of bad news after another and it felt like when they gave me the worst case scenario there was no reason to believe it wouldn’t come true. It felt like pinning my hopes on anything else was another way to have my hopes dashed, and I had done too much of that already.
Every child is different. Every child with special needs is different. Every child with CHARGE Syndrome is different. So there is no way of knowing. But I still wish I could have slapped myself around a little and offered up a few words of advice.
1. The doctors won’t always be right.
In fact, often, they will be wrong. Sometimes they’ll be wrong in bad ways, like when they told you Eva might be able to see with an operation only to discover upon closer inspection under anaesthetic that operating would do nothing to help her. But often, they will be wrong in ways that prove to be good. Because Eva will prove them wrong. They will give you the worst case scenario. They are estimating, guessing and pointing at a future they know no better than you do. While optimism might feel impossible and wrong right now, don’t give in to despair at all their words. They have to paint the worst case for you to keep your expectations low, but Eva is her own person. She will prove them wrong in the most delightful ways.
Doctors are just people. They are not gods. They do their best, but they cannot predict everything or get everything right.
2. Your love for this girl will grow so large you won’t care what she can and cannot do.
I know you have hit a wall. I know you feel you cannot do this. You are staring into an unknown future by yourself with Eva and you are scared. You already love this girl, that’s why so many tears have been shed. But what you don’t know is that you will grow to love her so much that her issues and disabilities won’t matter. You will get to a point, quite soon in fact, where you will see that worst case scenario and while you wish you could make it easier for Eva, you will not be afraid of it. You will love her no matter what. There will be no conditions, it will be unconditional. The worst case scenario will not feel like the end of the world. She is your daughter. It will be hard, sure. You will be tired, definitely. You will feel torn in multiple directions, but under all that you won’t really care, because you’ll have Eva. Sure you’ll always want things to be easier for her. Better for her. But you will love everything about her. So much so that the issues she faces will fade away. You are picturing feeling burdened and trapped and as if parenting her is a life sentence, but you won’t feel that way. I know you won’t believe me, but give her a chance and you will see she makes you so much happier than you could have thought. Your life will be different than you imagined, but in a lot of ways it will be better.
3. Your relationship with Eva’s dad is about to end.
Don’t fight it. You both need to make the decision that is right for yourselves. Try to clear your head, and put Eva first.
4. You can take a break.
You shouldn’t feel bad for that. It’s what you needed to do to be with Eva. But don’t wait too long. Eva’s time with you is not going to be long and you may look back and sorely miss the weeks you spent without her in your arms.
5. Trust yourself.
You are confused right now but in your heart of hearts you know what you want. Go with it. It will be hard, but you can do it. You don’t have to be that special Mum you think you do. Eva will turn you into that person.
6. You are imagining yourself alone. You will not be alone.
You will be surrounded and supported by so many people, both close to home and further abroad. You will feel loved by many and while it is you in the waiting room with Eva, you will feel buoyed by the support of many hands. Your family. Your friends. Eva’s Dad. Eva’s dad’s family. They will all step up and be an important part of Eva’s life. You will not be doing this all by yourself.
7. Eva will amaze you.
This is one heck of a girl. On a daily basis she will show you her spirit, grit and determination. She will smile for you and laugh and show off her strength. She will never stop surprising and delighting you. She will wait for you and love you no matter what. But even if she never smiled, or pushed up on her hands, or rolled, you will still love her just as much.
8. Eva will change you for the better.
I know you will be thinking, no, I’m fine the way I am. No, I don’t want to be changed. You will be picturing some saintly woman who is not you. You will be imagining the mothers of special kids who don’t complain. Who get on with it. Who sacrifice their lives for their children every day. You don’t need to be that woman. Who you are is fine. You can do this. Eva needs you, not a saint. Eva will change you, but you’ll still be you. You’ll just be seeing things and people differently. You’ll appreciate life more. You’ll be able to see more clearly. You’ll be you but with better glasses.
9. Make Eva happy.
She’s not going to be here long so let her stand when she wants to stand. It won’t be great for her hips, but she loves it. You’ll feel happy you let her stand and bounce and kick when she’s gone.
10. Fight for her.
There will be times when you disagree with the experts. Go with your gut and fight for her. It doesn’t matter if you have to talk through tears or sob your way through an argument, if you think something should be done differently, speak up. You will never regret each time you do.
I know you won’t listen to me, but I wish I could shake some sense into you. You’ll get there eventually. You’ll figure it out by yourself.
But it sure does hurt to look back and wish I could have figured it out sooner. Wish I could have sped things up so I wasted less time. Cried less tears while Eva was still alive.
I can’t change the past and I know I wouldn’t be the person I am if I hadn’t gone through that. I might not have come to the decision I did if I hadn’t done the things I did.
Hindsight is 20/20 and sometimes the clarity is painful.