I have been working on decluttering my house and I found a spiral notebook and was looking through it to see what it was and found notes from the caregiving class that Denise offered in June 2011. I found the notes from this class which gives me something to think about.

These are some of the questions and my answers:

What question would you like to ask that you didn’t (of a relative who died, doctor etc.)?

My question that I want to ask and know more than any other is to God. Why did you allow this to happen? I’m okay with her being born with a congenital heart defect and I think I could have handled that but maybe not.

The bigger question is why did you allow the CHD to go undiagnosed which has caused the PH? Why did you crush our (mine, Nicole and Rick’s) hopes and dreams?

Another question would be to her first pediatrician. Why didn’t you take me seriously instead of telling me I was paranoid and an overprotective mother?

Myself… why was I so passive and just accepted what the doctors said instead of listening to my gut.

Ask yourself: Who can I be in this experience?

A voice and advocate for Nicole. I hope that I will be able to help others. I don’t think that I’ve accomplished either of these. Maybe this isn’t what God wants me to do.

Another assignment was to express the “Impact on time and your dreams for myself and Nicole.”

Me: I have a lot less time. It takes a lot of time to take her to appointments, set up shipments each month for medications, keep track of pulse ox, exercise, medications, her symptoms, joint pain and food journal. Sometimes i get so overwhelmed. Then you throw in homeschooling and normal chores and it feels like I have a lot less time for me and then I feel guilty.

Nicole: The dreams that I had for her future. I want what every mom wants … a healthy child. I wanted her to go to college, get married and have children. There’s no guarantee she will live long enough to graduate from college. The chances of her being able to work a full-time job is unlikely. She will not be able to have a child of her own and experience that. The reason is her health and too much stress on her heart and lungs as well as the medication causes birth defects. She will be on these medications for life.

As far as my dreams, up until Nicole’s diagnosis I didn’t know what my purpose was. I believe now it is to be an advocate and voice for Nicole and for the PH community. I don’t think that God has opened this door or at least not the way I want Him to.

Maybe this isn’t what God has in store but I just feel (strongly) that this is the only thing that makes me feel like I’m helping Nicole. If I don’t do something I feel helpless.

I feel like I have no time… during the summer I don’t have the stress of school also. Homeschooling is very stressful but I know that this is the calling that God put on my life.

There is so much that I want to do… like clean my house that I don’t get done.

One thought that I do have from reading this is that I am so focused on being a voice in the PH community and I still want to have an impact but I think what my main focus should be is on being a caregiver. This is what I am and there is so much focus on the patient and as I said last night at the PH support group meeting to Nicole’s doctor and another member of the group … it is always about the patient… and it should be… but sometimes the caregivers don’t get the respect that they deserve.