Happy Birthday Isaac!

Dear Isaac,

It’s been a huge year little boy. You spent your first few weeks in a sling, coming with me to doctors appointments. Your great-grandmother had cancer and we were part of her support team. She was in hospital when you were five months old. We sat there, waiting to speak to the doctor when you began to scream. And scream and scream. You got to spend a night in hospital that night. We still don’t know why you screamed, although I have suspicions.

Nan died a few days after your hospital admission. You were in the room with us when it happened, fast asleep in your pram. I’m grateful for that, that you were sleeping.

You had a seizure when you were 6 months old. We spent yet another day in Emergency with you, only to be sent home. Luckily you haven’t had another one. The six months since then have been a whirlwind of doctors appointments, geneticists, tests and more tests. You’ve been diagnosed with Ehlers Danlos Syndrome and been poked and prodded and shown to students.

You’re my happy boy, always smiling. You’re a bit grumpy this morning, but that is what you get when  you spend most of the night awake. You’re still smiling, you just want to be doing it from the safety of my arms.

You still don’t sleep through the night, or sleep much at all actually. I’m going to blame genetics for that, your sister didn’t sleep either and neither did I. Or your grandfather for that matter. It could be the Ehlers Danlos; actually it’s highly likely it is, but we’ll never know as you can’t tell me.

You crawl so fast, especially when you think you’re missing out on something fun, or food. You like nothing better than launching yourself at your sister, only to have her scream ‘Isaac is going to GET ME!’. You giggle and I have to rescue her, as you try to pull her hair, or squash her flat. She’s not very rough and tumble and yet, you are.You don’t walk yet, although we’ve had moments when you’ve forgotten to hold onto anything and stood by yourself for a few moments. I’m not worried about the lack of walking, not at all. With your bendy bits, walking is too hard for you right now. You will do it when your legs and body are ready and that is fine.

Isaac, we’ve got an interesting road ahead of us as you get older. I’m not looking forward to seeing how the EDS manifests in you and your sister. I spend a lot of time hoping that you’ll only ever have a mild hypermobility, but then, I’ve seen your skin tear and I may be kidding myself.

When it comes to food you are SO there. Any and all food, you don’t care, so long as you can feed it to yourself. You’re gluten free like your sister, as gluten causes you terrible eczema. You’re off to have (genetic) blood tests for coeliacs tomorrow and I suspect that is going to be great fun, pinning you down for a needle.

Your favourite things are wheels and buttons, although I suspect boobs come in very close. We’re slowly weaning, cutting out feeds left right and centre. I wouldn’t be so adamant that we needed to wean if you didn’t keep biting me. Biting is not pleasant. Laughing when I tell you no, even less so.

You’re getting so big and I’m not entirely sure where the time has gone. It passed in a haze of appointments and grief and busyness. It’s been a hard year this year and it’s still hard. You’re always ready with a snuggle and a hug though and for that I am grateful.

Happy Birthday baby boy. You’re my handsome boy, my beautiful happy child. I love you more than life itself and I would do anything for you, even when you do bite my nipple and stay awake all night.