Beautiful Girl

We had an appointment with the neurosurgeon last week. Ya, that wasn't stressful at all.
Evee does have Chiari Malformation, which is when the tonsils of your brain are pushing out of your skull and into your brain-stem. There is a surgery to help relieve the pressure, but it can be quite invasive as it involves brain surgery and removal of some bone parts. The good thing is that for now, only one of Evee's tonsils (you have a left side and a right side) is herniating out so the pressure build up isn't too much. This is relieving for I am due to have another baby in a month and pushing a surgery in before then could be quite stressful. The thing is that at some point Evee will need surgery for it and until then we monitor her with MRI's and watching for signs or symptoms. This can be difficult for the symptoms are things that she already has, unrelated, or could get. For example, one sign is trouble breathing-really?
We also found out that her MRI also shows that she has a tethered cord. This is less serious, and the surgery would be a lot less invasive. But we are holding off on surgery for now for the surgeon doesn't feel that it is severe enough, and we'll just monitor it as well. Signs of a tethered cord? Delayed walking and constipation. Yep, two things Evee already has because of her low muscle tone. That's one thing I love about Evee, she doesn't play by the book. She likes to baffle doctors and pull out her own stops.
While we were waiting for Evee to be brought back to her appointment, a woman came up to Evee. She had heard that there was another macrocephalic baby with a trach and peg (not sure how she knew about the peg). She went on to tell us that her 14 month old had those three things as well. She then invited us to come meet her daughter back in her exam room.
When she opened the door we found her husband sitting next to a stroller with an infant seat in it. I was taken back with the appearance of her daughter. I guess I was expecting her to look similar to Evee, but they didn't look a thing alike.
Todd and I spent several minutes talking to this couple with, and about, their baby girl. This couple had four other children as well and talked about how much their children adored their baby. We talked about our appreciation for night nurses. There were so many things that we all understood and could relate to. The father mentioned that he had only heard his daughter's voice for a split second when she born. He wishes he could hear her cry still and how he had never thought he would want to hear a baby cry. Yes, I understood.

Seeing this little girl did have me thinking. I do wonder how people that don't know Evee, or don't love her-yet, see her. I am aware that she doesn't look like other babies, but to me she is Evee, and incredibly cute. But I know she has a distinctive look. This last week while visiting a friend who's son is at Rainbows, both nurses that came in knew and remembered Evee. I like to think it's because she is so wonderfully memorable because she is so sweet combined with the fact that she was there so long. But, I could be wrong.

In May we had gotten Evee's ears pierced. Originally, I was going to have my daughters wait until they were baptized (8 years old) to get their ears pierced, but Evee is different. I justified by saying that at 8 she may not let me clean her ears or she may rip them out. But in all honesty, I just thought they would look super cute and add to the Princess that Evee is.

When I got them done, a close friend said to me, "I get why you had them done."  She wasn't talking about any of my reasons above, but a different reason, one which I hadn't realized and yet, I think there was some truth to her comment.
I have never been much of a girly girl, and in all honesty, I put in minimal effort to look good. With Evee I am very attentive to how she looks. I like to put her in beautiful dresses, put a bow or flower on her head, and adorn her wrist with a dainty bracelet. It can be because after having four boys I finally have a girl to dress up. Or it also can have something to do with the fact that subconsciously I am desiring people to see my baby girl as just that, a baby girl. I'm not sure of it myself, but I do know that I have a desire for people to accept her.

The good news is that I am confident in that people accept and love her, and if someone doesn't feel that way towards her, they just have to spend a few minutes with her.  My experience as of yet has been quite positive. At my church she's almost like the congregation's mascot, whenever I am out and about I have many people stop me to admire the Princess. Most of the time Evee responds beautifully with people. She will turn her head in and give a bashful smile, which makes her even more cute and endearing.

Before I had Evee, I claimed that I didn't want a girl for why would I want to create my own competition? That has definitely been the case. I use to be the adored one, the one that everyone in the house sought after, I was the Princess. Now I play second fiddle to Evelyn...and I totally support it. One afternoon Todd was giving Evee his usual attention as I pretended to be offended. He turned to me and said, "I'm sorry Loni, but I think she's more beautiful for she has a sweeter spirit". I agreed with him. Then after thinking for a minute Todd came back with, "No, I don't think it's necessarily a sweeter spirit, but that the veil [that separates us (and our memories) from God] is thinner on Evelyn; therefore, it is easier to see her spirit more clearly." 

I am aware that Evelyn looks different, but I am not able to say how or why for I see her as her. She is beautiful and it is hard to not just love her. I am so grateful to those that have fallen in love with Evee as well. I appreciate other people seeing and accepting my baby girl as just that, a wonderful, special, beautiful baby girl.