Sunday, April 8, 2012
Thank you for all of your comments. I'm getting some good suggestions and insights from the egroup for parents with kids like Jie Jie, too. I am coming to realize that my new normal came in a very BIG leap so I didn't have time to think about it and adjust and there was no luxury of trial and error. This new level of Jie Jie's necessary physical dependency right when she's ready to be more independent hit both of us pretty hard. We have really had a perfect and smooth process to this point of steady progress on both our parts and this brought about a detour we weren't expecting.
Most of you are also familiar with the feelings that come with adding your second child to your family, especially when she's going to be a teenager who has lived her entire life in an SWI in China. You also know the financial stretching and reaching that occurs for this, too.
Looking back at what I've done from January of this year to now, I can truly say it's okay to be feeling this overwhelmed and tired. The only thing I need to do absolutely better is to shield my child from my stress.
Today was a good start. After the egg hunt, we took advantage of the good weather. Jie Jie changed into play clothes (she loves wearing nice clothes that I don't let her ruin) and we went to the zoo. It was only the second time ever that she walked the entire zoo, though I did have the stroller with us. Then, we went to a playground that was recommended to us and it was fantastic! It was completely set up for everyone, even people who used a wheelchair. For the first time, there was a set of low monkey bars and Jie Jie was able to cross them all by herself. She was so proud of herself! She's always wanted to be able to do that.
After coming home, I cleaned the hot tub and fixed the chemical levels in the water. My cover fell apart after the last storm we had and a lot of rain water and bits of cover got in. I have no choice but to purchase a new cover right now. At least I had a tarp to put under the cover so that the bits and pieces of plastic don't fall into the water.
However, we went in for 20 minutes. The goal was to sooth Jie Jie's legs and do some gentle stretches in the hope that she won't be sore from all the walking she did today. We have an appointment tomorrow with the neurosurgery department and it would be nice if she's not limping!
I got some exercise and fresh air, too, which I badly needed. Then I splurged and we ate out in a sit down restaurant. We ate until we were satisfied and didn't have to clean up or cook.
Sadly, we did not attend church. Jie Jie told me she was sad about missing church earlier in the day and I felt the weight of her innocent faith on my shoulders, but at the end of the day, she said she had a very fun day and this is what she needed most.
My hope for this week from a medical standpoint, is to not find any more things wrong with my child that need intensive therapy or care. If we get through tomorrow without any surprises, we are free and clear for three whole days before spending Friday at the Spina Bifida clinic. If we get through that, we have 7 days until the next Friday when we repeat Jie Jie's renal ultrasound. This will be a big deal because if she's not had improvement, more drastic steps will need to be taken. We are also expecting our appointment for the first two of some serious tests and the referral to the surgeon in Los Angeles.
Oops, I wish I didn't start thinking about all of this and stuck with Monday and Friday. It's starting to look overwhelming again, isn't it!