I have a confession to make. I know… Another one.
OK, here it is: I check the stats page of my blog. A lot.
Not for the reasons you might think, though. Obviously it’s nice to see that people have read what you’ve written. But this is a small blog. I hover around the edges of the Tots100 500 ranking and that’s more than fine with me. Because I blog primarily to work things through in my sometimes messed up noddle and to connect with others. If I connect meaningfully with 3 readers rather than making casual acquaintances of 3000, that’s all I care about.
So why my stats page obsession?
It’s about how people find me and this blog. The search terms people use to find Premmeditations, and which appear in my WordPress stats page, range from the neutrally descriptive (“premmeditations”+”blog”) to the oddly inquisitive (“who is Mrboosmum” is a recurring one, which I don’t think even the all-seeing Google knows the answer to, or why anyone would really care, for that matter). Occasionally a mildly disturbing search string rears its ugly head and I feel glad the kids’ pics and names aren’t on the blog.
Then there are the rest. These floor me on a fairly regular basis. Many are from parents or relatives of children born prematurely. Often they consist of a gestation and a problem. They go like this:
“NEC in premature baby”
Others are less specific but just as heartbreaking to read:
“son born 27 weeks”+”will he live”
“granddaughter born 29 weeks”+”will they be normal”
Others concern disability:
“does prematurity mean my child will be disabled?”
“cerebral palsy”+”can you lead normal life?”
“PVL is outcome always bad?”
“child has brain damage feel so alone”
And many, because not many bloggers write about this rare form of epilepsy, I guess, are about infantile spasms:
“IS”+”will child ever walk?”
“normal life after infantile spasms”
“IS will life always be this hard?”
Each one of these search strings stops me dead in my tracks. I’m not a crier by nature, but tears do well up often. My heart races for a moment and then cracks just a little bit more.
You see, I was that person. The very first thing I typed on my Iphone into Google the night Boo was born was: “baby born 29 weeks survival rate”. The clinical nature of the language doesn’t disguise how bloody terrified I was. How I felt as if I was being eaten away by fear and love.
And then Boo got sick. And I googled brain bleeds and PVL for months. Every good news story gave me hope. All the more difficult stories filled me with dread. The ones I thought most likely to match Boo’s destiny changed on an almost hourly basis.
And then I calmed down a bit, and relaxed (a bit) into caring for Boo and his sister when infantile spasms struck and it started again.
I was and am the people who find my blog. I know something of what they are going through. I share their pain and fear every time I read their searches and remember each desperate plea for information I typed (still do sometimes) into the internet as if it would give me the certainty no medical expert can.
And I wish I could give these people the answers they so desperately need, just as I wish I had answers to my own questions about Boo’s future.
But I don’t. All I have is our story. One example of how things can be. No one else’s story will be the same as ours.
I wish I had more to offer. I wish I could track each and every one of the people who find the blog down and give them a virtual or real world hug. I wish I could listen to them and let them express all their anxieties. I wish, most of all, I could tell them that their story will have a happy ending.
I don’t know that, of course. But this life has taught me some things that I hope might help and that I want to share with anyone who found this blog in the wee small hours because they wanted information or to feel less alone.
1. You are stronger than you think. Life may be hard at times, but you can and will get through things. This doesn’t mean it won’t be a struggle sometimes and it doesn’t mean you should try to get through these things without help. Take all the help and support you can. It doesn’t make you weak. It makes you responsible.
2. Knowledge is good and knowledge is power. But medical knowledge is often relative. Just because PVL has resulted in quadriplegic cerebral palsy for Boo doesn’t mean it will for your child. Allow yourself to find out as much as you need to feel informed. But try not to let yourself be overwhelmed. No one can tell you with certainty what’s ahead of you all. That is scary, but also offers hope.
3. No one can tell you how to react to any of the stuff life throws at you. Everyone reacts differently (even, perhaps especially, parents of the same child). Allow yourself to feel what you feel without guilt about having those feelings.
4. But know this. Things get easier. There are things in our life that I thought I could never get my head around. But I did. That doesn’t mean I’m always happy about them, but they became part of the fabric of my life almost without realising it.
5. You will be happy again. Tough times make good times, and even OK and fairly mundane and ordinary times, taste better than you could ever have known before. I will never be grateful that Boo was born prematurely and will live with cerebral palsy and epilepsy for the rest of his life. But I know that I have a new appreciation for life that I wouldn’t have had without him. And I have lots of fun and we all laugh a lot.
6. There are lots of us in this community (parents of premature babies, parents of disabled children) and many of us like and need to talk and know how important it is to have people to listen to and really hear you. Seek these people out in forums, Facebook groups, twitter or via blogs. They will make your life a whole lot better. I know, because they have done that for me.
I’d like to thank Emily Jerrome who tweets over at @mrsekj for suggesting I write a post along these lines during a chat on Twitter last week.