a delicate balance...

My girl is home. I thought that would make things easier. It hasn't. These new seizures still come with great frequency even though we are slowly increasing her medication.

The last thing any parent wants to hear is "There is nothing more I can offer you. We have done all we can." I have heard it way too many times in my daughters lifetime and I will admit that this time it really has hit me square in the heart.

When we were inpatient earlier this week, we saw lots of med students again and residents and attendings both in Peds and Nuero. I know we have a rather unique story to tell and I know it is my job to tell it. This is what Court does. She shows people that there is a person inside her skinny little self that deserves to be loved and respected.

But when you make a six foot four male physician cry and tell me what a good mother I am and that the only reason our daughter is even alive is because we have cared for her so well, I really can't take anymore.

Really, I am done.

I know it's selfish. I know it's breaking the whole "share Courtney's story and change how people look at the disabled" life rule, but you know what...this mother is hurting right now. This mother is scared right now. This mother just wants to curl up with her baby girl and protect her form all the suffering she knows will come.

This mother is tired of all the ER visits, hospital stays and med changes. This mother is tired of all the medical bills and financial distress that is making her older by the second. This mother is tired of adult diapers and nasty laundry. This mother is tired of worrying about her hubby being laid off and being without a paycheck or medical insurance.

This mother is just plain tired and I don't see any breaks in the near future.

For the first time in a long time I thought about life without Courtney today. It was pure hell. I do not know who I am without her. We have been a team for so long. I know when she's going to have a good day or a bad one from the first five minutes she's awake. I can get her meds in the right amounts in the dark. I know when she is hungry without her saying a word. I know when she wants to lie down or sit up.

I know her better than I know me. What the hell am I going to do without her? I know I shouldn't worry about it. The grace will be given when needed. God is in control here not me.

Not me at all.

Someone asked me how I was doing with all this. Not well I have to say. I am not in the mood to blow sunshine and rainbows up anyone's patoot. This is hard and I am sad that we have been asked to walk this road. I don't want to. I really don't. 

But then again, who does?

Yes, I still believe that God has my Courtney's and my best interest at heart.

Yes, I understand that God is asking us to trust in a brand new deeper way.

Yes, my knees are battered and bruised by the amount of up and down I have done praying for some clarity and a few answers.

No, I am not angry with God. I don't have time. He knows my hearts desire. No need to waste the emotional energy on anger. It won't change anything. All it will do is drain what little joy I can muster these days and that is not acceptable at all.

My daughter deserves more from me. She will get more from me.

So we will take this one day at a time. God has the timeline, I do not.

Just another day NOT in paradise...to God be the Glory now and forever...

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