Keeping On

I dropped Geli off at school this morning just before 9:30am and I just picked her up…..just after 10:30am. 1 hour…yee haw!

She called and said that she had a headache and was seeing spots and that the room was shifting and spinning….sounds like fun. Migraine, anyone?

This is her week “on” the steroid and she’s definitely “off”.

Her blood sugar levels have been a bit harder to control this week as opposed to two weeks ago and while she is doing a good job…..it’s been a lot of work and is not fun at all.

You know what it’s like when you cant have something and it’s all you can focus on…..yah, her and her carbs…..they are quite the pair this week. It’s like when you are dieting and all you can think about are the high calorie, high sugar crap; and salads and fruits and lean cuts of meat just don’t quite cut it….yah! It sucks!

She was awake this morning at 6am and couldn’t get back to sleep. Apparently she came down to our room and got Judah when he woke up at 6:30am. I say apparently, because I didn’t hear him wake up or her come to get him. Nice! Jon knew though….so there’s that. She brought him back down at 7am and so we got to sleep in for an extra half an hour this morning. How nice is that?

After the kids went to school, Geli lay down on the couch and drifted off to sleep. She didn’t have a class for first block this morning and so I just let her sleep. I woke her up just before 9:30am because that’s when her next class was.

It’s so hard to know what to do. Do I just let her sleep or do I wake her up and make her go to class. On one hand it’s good for her to sleep and rest and heal, on the other hand, I want to try to keep to a “typical” schedule as much as possible.

We keep encouraging her (and all the other kids) to plan to do things as normal as possible. Plan to get up in the morning. Plan to get ready for the day. Plan to go to school. Plan to stay awake in the daytime and to sleep in the night time. Plan to be independent and responsible for yourself. Plan to be happy and healthy.

I want her to be able to be as normal or typical, as possible. Then, when there are the times when she just can’t do things for herself or if she need to sleep or stay home from school – then it’s okay! I want her to try her hardest to LIVE! And then to ask for help when she needs it. I don’t want her to learn to be dependent on us for everything.

It’s so easy when your child is sick for a long period of time to start to cater to them. It’s easy to get in the mind set that they are just a “poor baby” who is so hard done by. It’s easy to treat them as if they deserve to have everything done for them in an effort to “make up” for all the hard, tough things that they are dealing with.

It’s a fine line to walk between caring for, pandering to and continuing to train your child.

We’ve been at this for almost a year and while I realize that one year out of a life time is not that long of a time….there are things that are important to me. Continuing to train Angelica (and our other children) in appropriate ways for the circumstances is really important to me. Life is full of ups and downs and learning to carry on in the middle of it is so important.

We encourage Geli that if she can do something for herself – that she should. Get up and get yourself a glass of water if you want one. Get up and that book that you wanted or a snack for yourself. If you can’t get up and get yourself one, then by all means ask…or explain that you probably could, but that it would require more effort than you feel that you currently have to give, and ask for help. This also allows us to gauge where she’s at physically, mentally and emotionally. She may just feel too exhausted to try and that’s okay. That’s a part of this whole process. There are good days, excellent days, tough days and really REALLY tough days.

But, that is also life!

In life, there are good days and excellent days and hard days and really, REALLY bad days. I think it’s important to live and enjoy your good days and to plow through some of the tough days and to learn to admit when you need the help and….. to ask for the help.

We are here to help Geli. We are here to encourage her. We are her family and we love her. We can see when she’s actively choosing to participate in life and to be responsible for herself and even giving out of herself. On the flip side, when she is struggling, we are right there to help and encourage and love and to give back into her.

These are some of the life lessons that I feel are so important. I feel that it’s important to not see her as a “poor baby”. I feel its especially important for her to not see herself as a “poor baby”. I feel that it’s important to recognize that she has had (and is having) a tough year. I feel that it’s important to validate when she is struggling. I feel that it’s important to encourage her to keep on, keeping on. I feel it’s important to teach her that this is her life. She can recognize that this is a part of her journey (just a small part…) and accept it for what it is OR….she can feel that she’s been given an unfair lot in life and be consumed with how much better everyone else’s life seems or appears. If she can learn to accept that this is her journey, she will be able to find happiness within herself as she carries on. If she focuses on how bad she has it and how good others have it, she will be oh, SO miserable.

For the most part, she “gets” this. She is an amazing young lady and I’m so proud of her. This is not an easy portion of her life’s journey, but she is walking this road with courage and grace. I’m thrilled to be able to walk along side her, encouraging her, cheering her on……loving her!

ps. Geli has no more chemo until Monday May 30th…..this is wonderful and yet at the same time, the 3 doses of chemo that she has just had will be hitting their high points of effectiveness within the next week and a bit.

Here are some prayer requests for the next week or so:

– No joint pain when she goes off the steroid this time

– No infections of any kind

– No Headaches (she’s currently dealing with this and it sucks)

– For Health…that Geli would really be able to enjoy the next 2 weeks.

– For Rest for all of us…..

Thank you so much! We have been so encouraged by your love and prayers and are grateful for YOU!