Comparison is the thief of joy.

One of the biggest struggles I've had with Layla is comparison. Many people, including our doctor suggested that we try going to a local mom group. Um... nope. The idea of sitting around, chatting with other moms and having them ask me why my daughter isn't doing certain things, or not asking at all, and me just sitting there watching their kids hold their neck up, sit, stand, crawl, walk, jump, climb, fall, talk, grab, hug, eat... does not sound at all appealing to me. It's hard enough being around friends and family with kids, seeing their photos and videos on Facebook and not comparing those to our beautiful daughter. Just yesterday I was online and saw a picture of a friend's baby in the jolly jumper at 4 months old with a big old grin on his face. Normally I would just think about how adorable he was but at this particular moment I just burst into tears with the thought that my daughter will never do that. Watching babies in a Jolly Jumper has got to be one of my favourite things to watch. Their eyes get really big with each jump, the excited noises they make every time they jump off the floor.. At this point at least we know that there is actually a reason that Layla is not doing these things.
In March my brother got married in Mexico! I was really looking forward to this two week trip, not only for the wedding but also to just see a bunch of my family because I've only had limited visits this year as we moved across the country (one week after Layla was born.. crazy right!?) for Aaron's schooling. At this point Layla was just 6 months old and no tests or diagnosis' had been given. I planned for months ahead of time that my goal was to have her able to sit up before we went, and really wanted her to be taking a bottle or eating solids so that I would have some opportunities to leave her with others while I lay poolside.. or whatever (i'm so selfish, I know). I worked on these things daily with no improvement. It was really disappointing. But off to Mexico the two of us went. In casual conversation I brought up that I was worried about Layla but most people shrugged it off... What did I expect though? Someone to say "Yeah, I think somethings wrong with your daughter, you should get her checked out." haha And at 6 months I don't think it's unheard of for children to not sit up. There were two other babies at the wedding a bit younger than Layla. Honestly, they seemed like a lot less work than my darling.. they sat up, were entertained by toys, were pretty good with others holding them. While my daughter, most people don't have the patience for.. she takes a special type of rocking. She likes to feel like she's basically sprawled out with limbs completely relaxed and not really being held.. but still rocked back and forth. And don't even think about sitting down! Even in this position she might let out a couple cranky, sassy cries but if you have the position and rock right she'll give you a big smile pretty quick. That's where the patience comes in. Love her.
Our physio therapist has given us a list of exercises for us to work on. The hard thing for me is that she hates them. When my husband is gone at school for the day I have a rotation of things to do for Layla. In the morning I try and start off the day with a couple of her exercises because I know she'll get upset but when she's had enough, I can just breastfeed her and all will be well. After that feeding, I try and get an exercise video done for myself. This rarely get completed. I'll have her laying on the ground for the first 5-10 minutes which is GREAT and then she'll start crying, so I move her to the swing for a couple minutes, then she'll start crying, so I move her to the couch for a couple minutes then she'll start screaming, so i'll pick her up and rock her and then she'll calm down within a minute. I'll try this cycle a couple times and then just give up.. rocking her it is. Throughout the day I do similar things if I need to quickly make a cup of tea, or scarf down a piece of fruit. She loves her change table.. I think just because she gets really happy when you take her clothes off.. we're praying she grows out of this habit. Basically i'm holding her 75% of the day and the rest is either feeding, trying her exercises, trying to get her to take the bottle or solids (both end with crying) or going for a walk. Needless to say, I get nothing done for the house or myself. The point of that ramble was that even without the exercises she spends a lot of the day upset.. so I keep thinking that if my time with her is limited then I'd rather spend it keeping her happy.. does makes sense? But I keep trying them, maybe not as much as I should be...
It's quite interesting doing my research on children with SMA. I am really intrigued by their stories, how they found out, the process, the appointments etc. I know that our story is and will be unique but it kind of lets me know what to expect. Though Layla has most  of the symptoms one thing that doesn't quite line up for me is that I feel like I keep reading that babies with SMA tend to be more lethargic and quiet as babies and they are really content just laying and watching the world. I don't think that's Layla. She does like to be left alone laying out often, but she will want to know you're right beside her. But she most definitely knows how to use her voice.. she yells like a dinosaur and she cries really intensely to the point where you think she's hyperventilating. She can go from 0 to 100 in a matter of seconds which sometimes makes me think she's just laughing away inside thinking "I got you fooled, I got my way. You picked me up". Love her.