As of today, Em is officially 18 months old. Nothing about the last year-and-a-half of our lives has gone how we thought it would, and for that, we couldn't be more grateful. It's crazy to sit here and think about how she has already lived three times longer than any doctor ever told us she would. Three. Times. Longer. That thought is a double edge sword because on the one hand, we can say, "she's made it this long and it's just going to keep getting better", which is the trend that things are moving... But at the same time, it shows how fragile this entire situation is too.
Something that I've been thinking a lot about lately is how our lives are not hard. Not in the least little bit. Sunday night Derek and I were talking about how there is basically nothing about Em's disability that impacts our lives on a daily basis. Sure she's in a wheelchair, and sure she went through 7ish months where we thought she would literally die every time we tried to feed her... but now she eats like a champ, she moves around independently in her wheelchair, and she is so cognitively alert that I often forget that there is anything wrong with her. I'm assuming if the wheelchair sticks around longer than the three years we're anticipating, it will impact us more, but the fact that I can carry her in one arm, and the wheelchair in another when we go places, it all seems so manageable.
Last week we got a quick evaluation for occupational therapy, and the only things she needed to know how to do were scribble with a crayon, turn the pages in a book, stack three blocks, and pincer grasp her food. Aside from the blocks (because she's never played with them before), she passed everything with flying colors.
Over the last month her language has really been starting to take off and she can now say five words. If you remember anything about Jay, he was not saying five words at 18 months, and almost needed speech therapy. Em can officially say mama, dada, hi, that, and yeah.
She has been pointing with her finger to everything around the house and saying, "That! That! That!", and it's been so fun to teach her what everything around her is. She has a thirst for knowledge and it's so fun to fulfill that need.
Her movements have gotten a lot faster and stronger too. If you want to race in our front yard to see who can roll all the way across faster, Em will beat you every time, hands down. Last night as I was sitting on the couch watching her explore the house, at one point she was in army crawl position sliding herself back and forth on the hardwood floor, and I really think physical mobility is right around the corner... which translates to 2-3 months in special needs terms. Which I obviously just made up myself.
I've thought back a lot on my pregnancy, and how easy it was for me to accept Em having such a short life, and I think the reason was because the opposite side to that was a special needs child, and that life, this life, terrified me. I felt so scared and incapable of raising a child with a disability that the idea of her being in heaven with a perfected body just seemed so much easier. I think about losing her now and I just don't want to. We all need her in our home, her love fills us with a joy and purpose that we never thought was possible. We don't need heaven for her to be perfect, because as far as I'm concerned there won't be any difference.