This is something I've thought about writing for a while.
Since having William, and particularly in recent years, we have become terrible people to be friends with! It's something I feel very conscious of, something I worry about and something I want to take the time to explain.
We have so many lovely friends, old and new, and most of them we hardly see. In fact, unless you happen to be at our church on a Sunday, are my mother-in-law or are employed by me, chances are we've not seen you for some time.
Things first got a bit tricky when William arrived. He was a delicate, unpredictable little chap, we were nervous to take him far from home for too long. He was in hospital a lot, he got ill a lot and we cancelled plans a lot.
Then William started throwing up A LOT. And we couldn't move him during or after a feed. We couldn't leave the house without several changes of clothes and piles of towels. So we avoided going places to help him keep his food in so he wouldn't lose weight and to avoid the stares.
Then we realised William was deafblind and taking him to a busy soft play/pub was not going to be his idea of fun. In fact it was going to often be really overwhelming and tiring for him.
Then William started to struggle with his breathing when sitting up for long periods and we started avoiding more long journeys.
Then we started to realise that our life had become so centered around William and his care and his needs that we didn't have a lot else to talk about. Our experiences of parenting were nothing like anyone else's and finding common ground became harder.
Then in an attempt to improve and prolong his life we started feeding him real food that we needed to make. We needed to measure out every calorie, 3 times a day we needed to feed him 307 calories, 31g of carbohydrates, 11g of fat and 7g of protein. And any free time we had got taken up blending food.
Then William got a bit bigger and a bit poorlier and his care routine took up more and more of the day. We got a lot more equipment which needed to go everywhere with us and it started looking like we were going for a mini break any time we simply left the house. Packing for a weekend away became a major stress filled operation and church weekends away, camping trips and even fun days out became insanely hard/impossible. And it made us tired and worn out. So we had no energy left to do anything and no time to do it anyway.
Then William got even bigger and it started to get impossible to take him to most people's houses. There's a doorstep or two, and a narrow hallway, with shoes lining the way through. There's furniture in the way and nowhere to safely lie him down. There's no where to change him easily and our backs are hurting and we just want to be at home where it's easier. We don't want to tell we can't come to your house because it might sound like we're saying your house is too small with too much furniture, but it's not. It's just not used to having a wheelchair user in it.
Then William's seizures got worse. They became more violent and he would make horrible painful noises. He would choke on his own saliva and need quick suctioning to clear his airway. He started startling at so many noises that we couldn't even empty the dishwasher/open the lift door/talk to him/brush his teeth/cough without sending him into a seizure. And we wanted to protect him from more seizures.
And in another year or two, it's impossible for us to lift William out of his chair and we can't go anywhere because there's no hoist. His chair is bigger and it actually wont fit through the doorway.
And it made us really sad. Sad that we can't be good friends to so many people we love. That we can't pop over for the day. That we can't come and stay for the weekend. That we can't join you for a fun day out at the theme park. That we haven't seen you for a year, or two. Or three.
So thank you to all our friends who have been patient with us, who have invited us to birthday parties, who have been understanding when we've had to say no, who've changed plans to visit us in hospital. Thank you to our old friends who've been there from the start and not given up on us. Thank you to our new friends, who've come aboard even though they know what they're signing up for!
