The strength of a heart

Hallmark movies are a wonderful invention. Hallmark movies, coffee breaks on the roof, friends, simple projects, comfy cushions, fellowship, and prayers are things that make up the mortar that holds my life together. There are days when the afternoon coffee break on the roof with mundane conversation, or sometimes the more serious conversations that attempt to help bring understanding are what gives you the ability to get up and make it through the day. The Hallmark movies at night where the plot is predictable and everything turns out right in the end are the contrast to your world that you need so that for that hour and a half you can actually believe that everything will be ok. That is a luxury unavailable for the rest of the 22.5 hours of the day. Everything isn't necessarily going to be ok, and far too often things do not turn out right in the end. 

This post is one that could go so many different directions. I think I am just going to write and wait till I am done to find out just what it needs to be. Being here is hard, and today was hard for me. We sent one little girl to the hospital last night after spending hours trying to keep her breathing and another little boy this morning with a similarly heart wrenching process. The little boy was from my floor, one of my babies. Later in the day there was another child in crisis that had to go to the hospital from another floor. We have a lot we can, and do do here, but there are some things beyond our ability to do as a facility. We can not intubate or do CPAP and we have been asked not to do surgeries in our facility. We can not give TPN and don't do IVs. So when a non-palliative child gets to the point we have exhausted everything we can do for them, our final option is to send them to the hospital. Once there we will get bills, and a call to either pick up the child or the death certificate, nothing in between. Thankfully we have had no word. That means they survived the trip to the hospital and are still alive, a blessing far from guaranteed. 

Every breath of every child here is a miracle in some way and being faced with that fact over and over again, seeing child after child struggle to simply breath, fighting desperately to stay alive is....exhausting, in oh so many ways. There are times I can not wait for this time in my life to be over so I can go home to a life where every day does not ring my heart and require so much of myself on such a personal level. When I am exhausted at home it might be mentally from school, or physically from work or lack of sleep, but very rarely is it ever in my heart and soul. I have never had trouble sleeping in my life, but I have been finding that every night before I go to sleep I go over my babies in my mind, over and over again, to the point it is sometimes it takes hours to fall asleep. I think of them, how they are, what they can expect, where they will be, what will become of them, what more can I do, what would make them happy, are they gonna be ok, did I miss anything, and what ever will I do when I have to leave them. When ever the thought of wanting to go home, and of being safe and secure and comfortable enters my mind, it is followed by an even more pressing one. How am I ever going to be able to go home? How will I ever be able to leave my babies? The thought of living anyplace where I can not see my babies everyday is almost unimaginable. When I am sad or tired or upset just I walk downstairs into one of my rooms and a child or children run into my arms desperate to hold me and be near me or to show me a toy or be tickled and it is suddenly alright again. Sometimes I just look through the pictures on my iPad and I can not help but smile to see their beautiful faces. Everything in my world is suddenly right. I spend most of my days smiling and laughing because sharing my life with these children makes me happier than I think I have ever been. If it wasn't for how wonderful they are it wouldn't be so hard to be faced with the thought of losing any of them. It makes every day I get to spend with them a blessing. I could talk about each child for hours and hours and hours (which my brother can assure you can be summed up in s/he is super cute!). I get to be here to know these children that many people will never get the chance to know. I get to see their first steps, hear their first words, comfort them when they cry, know all of the funny little things they do that would make them laugh in years to come. It is an amazing thing to be able to say. I can assure you that these children are some of the most amazing children I have ever met! The little boy who rolls everywhere because his joints won't bend, but he is fluent in English and Chinese. He usually translates for me and even tries to get me to teach him sign language. Then there is the little girl who was born without some bones and with some deformities of her limbs who can still manage to blow kisses and is teaching herself to walk. She is also more patient than any child I have ever known. There is the little boy who can not use his legs but will see me from the end of the hall and army crawl out of the door and down the hall faster than most children can run. Or the little girl who was born with only half a heart who always comes in my office to help me refill the meds by taking caps off or shaking bottles or throwing away trash, then goes back to her room and helps the ayi's with the other children. She loves having her toenails painted and her hair done and is entirely too adorable walking around the room with her "purse" filled with random toys. I am going to end this post with some of the many pictures that make me smile. Here are some pictures from the last couple of days.