Emily had a mommy day yesterday. I am in the military and in-between deployments so I figured it was a good way to ensure some quality time. She loves to come to work with me so I brought her to work and then we left early to get her blood work done and go to a baseball game with my office.
Blood work was quick, but not painless. Quick is good though, I hate sitting in a room full of what could be sick kids with my immune suppressed daughter waiting for some stranger to inflict more pain on her. Unfortunately because the medicines can have so many adverse side effects and even the disease itself can harm her other organs (we saw it hit her heart and lungs already) every time we go see the Rhuematologist we also have to get labs done.
After labs we headed to the ball park.
I had called ahead of time to be sure they would allow stroller in the park because Emily can walk, but not far. They do, however the nice gentleman I had explained her condition to failed to tell me that we would have to check it into Guest Services which is not close to our seats at all. Then of course we had to walk up and down the stairs to get to the seat. Emily didn't want to stay in the stroller, why would she when we had seats right behind third base, so I encouraged her to walk down the steps. She did a good job and had a good time. The thing I noticed was it is a lot of work to go to a game. She made it up the steps twice, but only with my help and it's not just holding her hand I actually had to reach under her arms and allow her to put most of her weight on me as she stepped up. She only made it two hours too. By the 5th inning she had stopped talking and that's how I know how tired she is. She gets so tired she won't even talk, just sit really still as if she is trying to conserve her energy.
There is a kind-of sort-of mass transit system in San Diego that's a red trolley so being from D.C. and knowing how awesome the metro is I figured we could just ride that home. Emily enjoyed the "train ride", but that was also a ton of work. There are only steps up to the car so I had to ask if we could use the handicap elevator to get into the car and the driver didn't believe me that we needed it. He did end up letting us use it, but I don't think we'll ride it again. I feel for any disabled person that depends on that for transportation.
Last visit we had asked the doctor to sign a form allowing us to get a handicap placard for our car and she told us that we were no different then any other family with two children. It doesn't feel that way and sure I want my daughter to get all better, but she can't walk far or fast so the stroller is our only option right now. I'm so tired of being asked for help and told no. On the one hand I understand the doctor doesn't want us limiting our daughter, but let's be real, this is a long process and she's not going to be running around anytime soon.
So far we've been told she's not sick enough to get a wish, not disabled enough for a dog and we don't need a handicap placard because we're just like other families with two kids. If that's the case then why did the two year old at the ball park beat my five year old as we walked back to our seats? If that's the case why does Emily get so tired that at times she doesn't have the energy to talk? Perhaps I should invite the doctor to go to the next ball game with us and stay a day at our house and then tell us that.
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