Fall Weather

I cannot believe Alyssa will be 1 year old in a month. It absolutely blows my mind. This past year has been such a life changing year. It's been a hard year but it's also been a rewarding year. Sometimes I find it hard to remember myself before Alyssa. What was it like to be a parent without a child with special needs? What was it like to be blissfully ignorant of the simple achievements and milestones these amazing babies hit with such little effort? What was it like to not second guess well intending people? What were pre-Alyssa relationships with others like? I feel like that parent time in our life was so short lived. A quick two years. It's something I will remember less and less of the older I get. Every little thing she does is celebrated. It's noticed when her body moves in a way it didn't the day before. It's noticed when she figures out a toy she didn't the day before and it's TALKED about. It's CELEBRATED. I feel guilty we didn't raise Aubrie like this. We didn't notice. We just assumed it would happen..and it did. It was easy... I wonder how it would be to have another child. To see how quickly things come to them and how easy it is for them to move their body and not exhaust themselves. It hurts my heart to realize how HARD she works at every little thing she does. How hard she tries. The Little Engine That Could we say. I read it to her every day. I've been emotional with her birthday looming. I've been in a mood and so has Bryan. I go from wanting to keep as busy as possible to wanting to hole up in the house and not talk to a soul. At a year old people expect a lot of stuff from a little person, crawling or walking, maybe a first word, etc. We don't have any of that yet. I know it doesn't matter. I know we will get there but it can get frustrating to know this celebration is looming and we can't check one of those off. I only wander how/if/when each birthday will get harder as some things become more apparent, all the things that don't/shouldn't matter but can sometimes slip in there and well, matter. She's frustrated she can't get to where she wants and I see it and I want so badly for her little body to allow her to move but it's so hard for her and it hurts that I can't take it away. I feel powerless and that's not a feeling a mother wants to have. I guess that's what bugs me the most about a diagnosis that you can't change, it's totally out of your control.I never would have guessed life would be this heavy at times at 26 years old..being blissfully ignorant is so much easier and sometimes it would be nice to have an easy day. A day without therapy and homework and worries. A day when a random conversation about Alzheimer's won't send you into tears before bed because the shorter life span and increased chance is there and it's real and you know it but you block it out because it's too painful and not something a parent is suppose to witness on either count. Not something typical parents worry about and it's then the reality of how this is our new "normal", what we think on most days is a not a big deal, has potential to be just that, a big deal. So the birthday of our beautiful child is joyous, it's celebrated, but there are also so many feelings this fall weather brings back to me, to us that might have us staring off in space or crabby or distant and I just wanted to say..that's why.