challenges

This morning was a rough start.

I gave her 5am meds but was a little lazy and didnt space things out the way I should have. . .

and we needed to change the bed so we moved her.

All of these things combined meant she threw up… pretty quickly after getting the meds in. So the problem was I had no idea how much of the meds she actually absorbed. I called into the hospice agency and they called the hospice dr in charge of her care.

The medication that was concerning is the methadone. Its job is to level out her pain throughout the day. (morphine for pain break through) So we gave her a half dose.

But I think thats all she got in her system since had 2 breakthrough headaches this morning.

We got to take a good deep bath together this morning since she wasn’t accessed. I washed her hair. She didn’t want to get out.

I thought to myself I wonder if we can make it so she passes away in the bath…she would like that I think.

I brushed her hair while she laid in my lap. One of my favorite ways of sitting with her. Between my legs sitting up together. Often she grabs my arm and pulls me tighter around her.

simple. . .blissful…

I took my time today. Even though it was terribly knotted I got all of it brushed. I was gentle and took my time. I didn’t do that nearly enough with her…

I will try harder with Charlotte…

 

 

 

And a reporter came.

Not our first interview but that one was at a vastly different time in our journey.. though only 2 months ago.

We chose to do a interview in our home. .  in the midst of our last days with Jennifer because we realize people care right now. That just maybe people will pay a little more attention.

My message is simple.

I actually realized it blogging a few night ago.

I have guilt and blame in my daughters suffering.

Its not that she got tumor and has cancer.

Its that there isn’t a cure.

My guilt is that I didn’t do enough before. . .

If I had half the dedication I have now, when she was first placed in my arms. . maybe just maybe there would be a better treatment or a new medication. . Maybe just maybe. . .

she wouldn’t by laying next to me. .

slowly dying.

So I made her a promise. I would never stop trying.

And never stop trying to reach people and give them information and a fire to also try to make a change.

7 children died today from cancer.

Seven children.

My child wasn’t one of them.

But she will be. And on that day. The day my world crumbles. 6 other families will be living the same nightmare.

I don’t have the answer. But I will start with this blog and a promise that if you stick with me. .. if we stick together we can find a way to really make an impact.

I spoke with Dr Partap today. She asked how she was doing.. Impossible to answer since everyday is different with a new set of challenges. Once we find a rhythm and a way to stay ahead of a problem a new one crops up.

Keeping her comfortable is so much harder than I thought it would be. And no way we could be doing it without the people that are stepping up and stepping in. . .

thank you.

I look back through this blog. I cannot believe how fast this is all happening.

I am so scared.

Of so much. Tony mentioned after talking with the social worker that we are not just going to be teaching our kids abut grief and mortality at their ages now…4, 2 and 8 months (will she make it to 9?). We will do it for/with each at 7 and 10 and 16.

I knew it would forever change my children, but to look at it those terms . .. how it will color every aspect of their lives. . . that somehow didn’t register.

This is going to be a lot of work.

And sometimes I feel alone. I feel like so many have pulled back and away.

Unsure what to say. . .or fearful for their own pain or that of their children. .

I am so scared.

. .. and I am so so sorry. Sweet baby Jennifer . . .

I am so sorry.