Day 7. Today would be described as a happy calm sort of day for me. I somehow finished nearly half of my weeks work in one day… hooray for baby finally being back on his happy-go-lucky -self schedule and I invented a ‘turtle’ cookie that I still need to perfect the filling on, but overall… a very easy and simple day. I have decided to stay only working from home until the summer.. so in my down time the last couple of afternoons somehow I end up baking things.. there is something about putting a bunch of ingredients together and kind of hoping for the best that has this therapeutic effect on me and the house smells amazing as well 🙂
As any of my typical days go.. something always pops up and today was no exception. 3:30 rolled around and there was a call from Children’s Hospital.. first thought was that it was a reminder call, but then I remembered we didn’t have anything scheduled from now until August…. so I answered. It was the nurse about the sleep study my daughter did a few weekends ago… she immediately started telling me that we are dealing with sleep apnea and that my daughter needs to come in for a follow up appointment with the Dr. to talk about surgery… the problem here is that 8 days ago the doctor had already called and explained the slight apnea, but did not recommend surgery at this time because of her low muscle tone.. it’s more risky to do the surgery than not..and luckily her oxygen levels were always in a safe zone, needless to say.. the nurse had no idea the doctor called (twice actually) and is now planning on calling me back once they actually get to talk to one another. Don’t you think it would have been easier to do that in the first place? Surprisingly, this isn’t stressing me out. Call it a mother’s instinct or whatever.. but when she needs surgery, I’ll be the first one to know.. but it never hurts to get a professional opinion to back up my mother’s intuition.
My little girl is like my best friend. We do almost everything together. I am her protector and she is just as much mine. Despite her inability to communicate using words.. we find many MANY other ways to communicate. Whether it’s with our hands and sign language, pointing, using her communication device or attempting to sound out words or singing a song.. we can somehow always tell what the other is thinking.. it’s a level I don’t think most parents get to with their kids.. you’re constantly not just thinking for yourself.. you’re thinking for two people.. and one of those people happens to be an almost 7 year old 1st grader… everything we do, every situation we are in, any new person we meet.. I immediately try to read Emma’s eyes and body language to help her feel comfortable or to get a point across. Some days it can be pretty tiring.. but I do it so much, and every day, that I’m just kind of use to it by now..
We recently found out that Emma has a gene mutation called DDX3X.. there are only 206 known cases and the majority are girls. This is not something passed down from a parent, it just happens in the ‘filter’ system when a baby is being conceived.. low tone, speech issues, seizures, aggression, early development, vision problems, sensory issues, safety awareness.. all of these things are associated with this and all of these things are my Emma.. honestly, some days are hard.. very hard when out of no where a strong arm clocks you on the side of the head when you aren’t looking because she’s frustrated and can’t tell you why.. and some days I cry… but most days, I am thankful. I am thankful for my wonderful little girl who despite her struggles still recognizes when someone is having a bad day and will just hug you out of no where.. or will put music on and make me have a dance party before school at 6am because she loves to put smiles on people’s faces or likes to show me that she knows how to cook better than I do.. all of these things wouldn’t be Emma if it weren’t for this ‘disability’ she has… there are days I wonder if I’ll ever get to hear her say ‘I love you, mama’ and there are days when I know I don’t need to hear the words because I can already feel them.
So.. in the end.. it’s simple. Love is love. Silence is golden and then sometimes it isn’t…