TORN TORN and yes TORN

If I could write a story, a story that made you laugh, cry, smile, weep with joy, burrow in tears, and scream in frustration. Then the story of Faiths journey so far would be definitely that. Now from her point of view I don’t know what she would write besides how much her mother smothers her with kisses, her sisters sings and talks WAY too much, how her one brother and sister argue with each other all the time, and how much her mom and dad argue about who is going to hold her. But from my standpoint I have my days of complete joy and days where I end them in silent tears. Today I would say I am kind of in between. I had an ok day with my definite highs and lows, but ending it on an ok note….I think? A good note would be sitting here typing this hearing her sleeping next to me, kids in their beds and home. Soon I have to keep saying, soon.

My days have been filled with OTPT sessions (therapy for Faith), classes (to learn about dialysis), and trying to get her awake enough to practice what we are trying to accomplish. Now that she is not intabated and on PD dialysis she can now be fed orally. The thing is though with being intabated so long she has a oral aversion and doesn’t know how to suck, swallow, and do it all in unison. For me it’s been a bigger struggle to stay positive then you would think, since I should in all reality be happy she is even surviving. But I want to be the one supporting her survival now and not being able to do it the way I want to is a minute by minute struggle for me. I constantly have to keep looking at the big picture in what she is doing, what she is accomplishing, and what steps she is taking. For me with both of my kids being able to feed them was a very big deal to me and was a very big thing for me to try with her once she was born. Well that of course changed when I found out they would be taking her from me the moment she was born to hopefully get her to survive.

So I sit here tonight hearing my other kids argue about what the best part of their day was and so filled with joy, but in the same instant I am aching to be over there holding Faith.

Today was hard for me at first. All week the kids have been here for spring break so I have finally felt not quite as torn between homes. But I still am not home with my animals, my other family, Jordan, and just home. I have been wanting to take the kids to the zoo since it is at the same exit as the hospital and Dan mentioned yesterday that we should take them today. At first I was all about it, but then I thought about Faith. The fact I wouldn’t be there to do her therapy when she woke up, and that I wouldn’t be able to pump till we got back. That’s where the ultimate conflict came for me because I wanted to do that for my kids and get away from the hospital room, but I wanted to be there for Faith and not leave her alone. Dan has been able to handle this lately a lot better than I have. Because now I feel like I have more of a role in getting her better, and ok when she is upset. And he is feeling a lot better about leaving her. SO conflict again for me.

So I guess the best way to put the way I feel, is torn. My life, my heart, and my family are in two different places. And this mom doesn’t know how to do it. SO I pray and pray and continue to pray for peace. And more than anything healing for my baby girl so she can go home and we can be a family again.