Monday, March 15, 2010

Planning Ahead

Spring Break!!! I cannot wait until Thursday when the girls and I leave to go see my sister and her kids in Georgia. I am flying alone with the kids. Prayers needed here! This will be the first time for me to fly alone with the kids. It will also be our first time to really travel since Anna had her button placed. It took more forethought that I expected. We cannot just pack up and go anymore. We have to ship her food and stuff ahead of time because it is heavy and I do not feel like paying American Airlines another $50ish dollars when our bags are too heavy due to tube feeding and related supplies. Thank God for the flat rate USPS boxes. I was able to send everything for about $10. I had to order supplies ahead of time though and not that it was difficult, it just took more planning than I am used to. I am so excited to go though and I am beginning to think Thursday might never get here. I have not seen my sister since last summer and I have not ever seen her baby who is now 7 months old. I need some snuggle time with baby Charlie (who incidentally at 7 months weighs as much as Anna and wears bigger diapers than she does.)

Forgiveness has done such huge things to me that I never expected. I had spent so long being angry that I had no idea what the anger had done to me. I also believe when God took away my anger he began replacing it with the fruits of the Spirit. It feels so much better to bear fruit than to wither away like I was. The main thing I have noticed that has changed aside from the anger release is that I am losing my need to control everything and micro-manage. I think it stemmed from feeling like I had some responsibility for what happened to Anna- that I wasn't watching close enough or paying enough attention or asking enough questions while I was pregnant with her. Since her diagnosis I have been afraid to miss an appointment or a therapy. It was stressing me out so much and I didn't even realize it. I was so certain that my way to do things with Anna was the best and only way to do things. If someone gave the meds in a different order or did her dressing in a different order or didn't adhere strictly to her schedule or dietary restrictions I would freak out. I am finding that letting go of some of this is a nice thing. Anna will not die if things are not done exactly my way. Who knows, maybe someone else's way is better than mine. I even let my mother in law skip a feed one night because it was her judgement that Anna had eaten good that day and didn't need it. I didn't get angry. I trusted her ability to care for Anna and make good decisions for her. I think there had been so much time where I felt a lack on control that i was grasping at every bit of control I could find to try and keep from losing my mind. Along with forgiveness and acceptance have come peace and freedom. I am so much calmer on the inside and it feels so good. I have been watching some Beth Moore bible studies ( I am not sold on the people hosting these but I am sold on Beth). One in particular is called "Living Forgiving: Offenses That Devastate." It is really changing my heart as well. I have said for a long time that I was not angry at God for all that has happened. I have realized that I wasn't "angry" but I was shutting him out. As I have begun to let him back in I see how much I was missing.

Anna had a genetics appointment today. I am so sick of appointments and really did not want to go but I had promised Dr. Hernandez I would, so I did. I left there not knowing much more than when I went in. They drew more blood to look further for genetic micro deletions. The geneticist says she feels like Anna's CP explains a lot of things, but not everything and she feels there is some genetic component. In the end it doesn't really matter- you can't do much for genetic problems. I agreed to the testing anyway just because if something does show up it could help us ensure Anna gets what she needs as far as special services in school, etc. I was a little sad when the Dr said something about Anna "not catching up faster." I feel like she is doing phenomenally well and it kind of hurt my feelings. I know it was not meant as an insult or anything but for some reason it never really gets easier to hear your kid is behind. Anyway, the blood work will take at least a month to get back so I will not be sitting on pins and needles waiting on it to arrive...


  1. I know how you feel about the appointments--I've taken to scheduling the ones that annoy me for really far in the future.

    I am so happy to hear about how forgiveness is working in your life. I'm reading this book by the Dali Lama about happiness and he says things that are similar to what you're saying--that getting rid of some mindsets allow us to have others. I love Beth Moore studies! I really need to do another one--they stick with you.

  2. There are tips for traveling with tube feeding on the Oley Foundation's web site at:

    Roslyn Dahl
    The Oley Foundation
    (800) 776-OLEY