Mostly ups, no serious downs. I guess the downs have been mostly mine and not really Bela's. Anyway.. more on that in a minute. At her cardiology apt last week she once again had a fever of 103, puked everywhere several times, got her blood drawn, and we sat and waited to hear if we would be driving home that day or walking over to the hospital to be admitted. After an hr the blood work came back 'okay'. For some reason it has really taken a toll on me. As I've talked to my mom and close friends about it, I think what has me the most 'down' is that I just never anticipated things to get more difficult as she got older. In many many ways, things are better. But in many other ways, it is just getting more and more difficult. I don't think I ever really thought about what all this would do emotionally to Bela. She is terrified of new people and new places, often making herself throw up from fear. A few weeks ago I took her and Bens to the library, a place Benson knows well because I took him there all the time before Bela was born for story time. When the doors opened she freaked out, turned and tried to run away only to trip and fall flat on her face. I had Benson go in with the rest of his class and took Bela outside to rock her. It was just so sad to me how scared she was of this new, big building. Just the fact that she had to be scared in the first place. She never did relax either the whole time we were there. At her cardi apt she was so worn out by the time they drew her blood, she saw what they were preparing, burried her face in my chest, stuck her arm out and said, 'okay' through her tears. Can I just say it BROKE my heart into pieces!! Dr. visits and tests and procedures were always hard, but I never knew how hard they'd be as she started to understand what was going to happen to her. THe fear in her eyes, and feeling her body shake when I get her out of the car at doctors offices is so hard. She says over and over, 'home'. Many of them don't even do anything that hurts her, she just dosn't know that, so she is terrified of what might happen to her. It's just getting so much more difficult for me to 'accept' the life she has to live as I start to see it affect her little personality. I know it is her life, and she is here because of everything she's had to go through, but as her mommy, sometimes I long for it all to go away. My mommy protection is off the charts for her, and when so many times I feel I have 'failed' to protect her, although I know I can't do anything different than what I'm doing, it is still tough for me..
She was also down almost a pound and a half in weight. ugh! She was eating mostly on her own...now we know it wasn't enough. It's very frusterating considering that most days it is still my entire life--feeding her. I can't seem to get enough calories in her by tube feeding without making her vomit them back up, and who wants to live like that? It's not fair.
But none of these things outweigh how amazing SHE is. Just her--no eating issues, no bad heart. Although she has trust issues, fears and anxieties that no 2 year old should have, she is overall a happy and precious little girl, and I am SOO grateful for those beautiful days when she can just be 2. She loves to be home, 5 minutes into any trip she is already asking to go 'home'. She knows she is safe here. SHe is happy here and loves to be with her family. I love to be able to provide security for her. She currently loves Diego, princesses, sand, Tinkerbel, chocolate, dancing, and cuddling.
It was very sweet to quietly celebrate her 2nd year of life. What an UP it was!! I knew this year that a big party would not be her thing, so a simple family party was perfect. Mostly we just held her a tiny bit tighter, kissed her a few more times, rocked her a few more minutes, as we marvelled at how much she has changed, blessed, and beautified life. I love her more than I can say. I have been there, by her side at every single doctor appointment, blood draw, IV stick, recovery, illness, ER trip, echo, vomit, withdrawal, therapy, xray, study.. and I can honestly say, as I know I've said before, but even more now at 2 years old, she is my hero. For all she has to endure just to live. It inspires me.
Well...there you have it. My current, raw emotions. My hopes, my fears, my ups, my downs. When all is said and done, that's life! And there would be no ups without the downs, right?!...