Wade was (still is, although there is some stubbornness creeping in) a dream baby. My idea of having a newborn in the house was, scream, scream, poo, scream, finally asleep, shh, shh, creep around, don’t wake the….dammit, scream, more poo, dried spew in your hair and maybe a smile every now and then.
Wade hardly ever cried. He settled quickly into the feed, play sleep routine. When he fell asleep, nothing really woke him. He usually slept for an hour on the dot and woke up smiling. In fact he smiled most of the time and only pooed once a week for the first 5 months of his life. I think this is actually due to the low muscle tone meaning that everything took longer to work its way through but I was counting it as a win. Other mothers would groan as I complained about how he was getting a bit grumpy as poo day was coming up, when they had just cleaned the third poo for the day off the walls, the floor, the car seat, change table or whatever else was nearby.
And he was this cute too….
Being the luckiest new mother alive with my dream baby, did not stop me from panicking and fretting about every little potential problem that could be wrong with him and racing off to the paediatrician with my ENORMOUS CONCERN OF THE WEEK. He thinks I’m mad. He looks at me and sees how lucky I have been with Wade, who has no health issues, is developing nicely and wonders why I am hassling him to check this and that all the time. For me though, it seemed that there were countless things in this world that could hurt him and there was only me and Mick to stop them, and if I wasn’t paying attention every second of the day…..if I waited too long to get it checked…if I turned my back for a second….then…then…!!
When Wade was 8 weeks old, he started making this weird sound. I’d lay him on his back to play or change his nappy and he would make this high pitched short intake of breath, choking like sound. The first time he did it, he stopped breathing and turned bright red. I picked him up and threw him over my shoulder hitting him on the back and he came right. This happened 3 times in 2 days and I rang the nurse on call to find out what to do. She recommended I go to the Emergency department at the hospital. We raced down there and got him looked at. They kept us in overnight for observation because he was so young. Of course, Wade was as happy as a clam and didn’t make the sound, the whole time we were there.
This story is a veerrrryyy long story about waiting for a paediatrician, waiting for a bed, waiting for transport to another hospital, waiting for another paediatrician…..but I will trim it down to make my point. The upshot of it all was that I was told he had reflux. I was convinced that it had to be much more than that because he stopped breathing and I thought he was choking. When the paed told me that reflux is painful and babies can hold their breath for up to 20 seconds I wasn’t entirely convinced even though it seemed to explain what had happened. Wade went on to make this sound quite a bit for many weeks, most unnervingly in the car seat while I was driving on the freeway which would result in me pulling over and yanking him out of the seat to make sure he was ok. Every time I went to see our paed, I would badger him about this. He kept saying, he will grow out of it, you can try this and that but it probably won’t make any difference. He was calm about it, I was psychotic. He was right though, Wade did grow out of it and he still makes that sound but now I know it means he is frightened or shocked. Trying to walk the balance of trusting maternal instincts and not actually knowing what is wrong medically, if anything, was very difficult.
During the first couple of months, I was an absolute stress-head. Some would argue that that little part of me will never really be cured but I do feel a little more relaxed these days. Early on however, I was overwhelmed by the enormous life and death responsibility that comes with having a tiny person relying on you for every single thing. This was definitely compounded by the fact that he had Down syndrome.I had researched the physical features, potential health issues, developmental delays, and intellectual disabilities that could come with DS. I had read about the government services available, the organisations I could contact, the things I could do to improve his brain function, development or physical strength. On top of that were all the other things that just had to be done like cooking, cleaning, shopping for food, feeding the baby, cleaning the baby, clothing the baby, cleaning the clothes of the baby……aaaaahhhhh!
It just seemed an impossibly large amount of things to fit into a 24 hour period that was primarily composed of a 3 hourly rotation of feed, play, sleep.
Therefore, there was this constant feeling that I hadn’t done enough with him. How could I? The list of things I should do for him was endless. The fact that he was my first meant that I had nothing to compare him to. When he was taking a long time to reach a milestone, I didn’t know if this was because of DS or because we hadn’t done enough with him to get him there. Maybe all babies are like this? Mother guilt on steroids.
14 months down the track and I have calmed a little. This probably has more to do with the fact that we no longer have to feed, play, bloody sleep but also I have realised that you just do what you can. Eventually things just get done, whether it’s organising Early Intervention Services or defrosting food for dinner. It might not all happen on the one day, but it gets done. I am ok now if I have a day where Wade plays with a piece of newspaper happily for an hour while I do nothing. I don’t feel the overwhelming feeling that an hour of potential development is lost forever! I constantly have to remind myself that even though he needs extra help and attention in his development, sometimes when I’m not trying to get him into a four-point crawling position, or teaching him sign for “dog”, he actually figures things out for himself. He gets motivated to go exploring under the couch or feels the texture of the rippled glass on the doors in the lounge room. I have to remember that when I don’t try to micro-manage every aspect of his development, he has space to be himself, whatever that ends up being.