Everyone has those moments when their drained. We've gotten home from the hospital, just 24 hours ago, and now is time for the let down of built up anxiety, of pent up frustrations and upset. During our hospital stay Scarlett was low on oxygen (82-86, anything under 92 is a concern), she stopped breathing, her heart rate dropped from 101 to 44 while sleeping 3 times in a few minutes, her breathing slowed down, her heart rate dipped lower and lower, her xray showed her lung infection spread, she lost half a kg in weight, and I accidentally pulled out her g-tube. We were only there 9 days.

On top of that I was thinking of my boys, how they were being shuffled around (with people I love and trust, of course) and what was running through their heads. I was worried that I didn't have enough blended food, that my boys were missing me, that there were a zillion other things that I should be doing. The mental exhaustion is just as bad as the physical when you're trapped in the hospital with nothing but your thoughts and beeping of machines.

Scarlett is doing fine now. Or should I say she's doing "Scarlett fine" in which I mean that she's still facing her daily struggles and I along with her. But this journey has been the most taxing for whatever reason and I'm bagged. The stresses that present themselves in those situations are increased ten fold and I even had a run of visitors this time! The diversions that my friends provided was amazing and yet I feel worse off then usual. I even came home to cooked meals and a plant.

However, being on this trip I have had clinical confirmation of the issues I felt were going on and, that my friends, is the hardest. I've seen the changes, both good an bad in her, but seeing how bad she really is in concrete medical form is daunting. I watched as her heart rate limit was lowered because she kept setting it off, time and time again. I watched her respiratory monitor tell me that, although she was breathing, she was slowing down to near breathlessness (3 on the monitor) time and time again. The impact of watching that all day, for nine days, takes it's toll.

My youngest boy has been stuck to me all day, crying when I'm out of sight, holding my arm saying how much he loves me and requesting hugs like it was all he needed to sustain him. My oldest has been a bit distant and I think it's because he resents me being taken from him again but feels bad about it because he knows it wasn't his sister's fault. He's a complex thinker and sometimes he won't talk to me until he can sort out his own feelings. So when I'm gone, I know how hard it is on my whole family; not just me and Scarlett.

And this is my life. The extreme highs and lows. I'm not complaining, just venting more than anything. The plethora of feelings wash over me and it's hard to absorb what I'm truly feeling before something else takes hold. I feel like lashing out and I don't know if it's just because I'm over-tired or if it's from the feeling of helplessness that I abhor. What's more is that I have a TON of work to do; going to the hospital is a make-work program to which I'd love to decline from. As if I didn't have enough on my plate, I have to re-orientate myself to where my children and their lives are because I missed sooo much, I have to contact everyone and their mother about follow-ups and drugs, and keep up on the stuff I couldn't do that needs to be done while I was away. *Sigh* Yeah, I guess I am complaining a bit.

Then there's the feeling of guilt that my friends have taken time away from their family to provide for mine, the babysitting, the dinner, the school papers...I feel bad that they need to step up because I can't. A mother, or at least this mother, can't handle needing others to get by and run their house but I have to. And it kills me I can't do it on my own; as much as I know I can't. There's just too much and I'm just one run-down person.

I don't know where I was going with this post or exactly what I wanted to say but I just needed to write. I know I'm not the only person who goes through something like this and I'm not sure if that comforts me or if it makes me sad to know there are others out there struggling to keep sane and just make it through the day.  Either way, I just needed to put my thoughts down and maybe it'll help me tomorrow.

Not where I want to be

I don't know about anyone else when it comes to this. I can only rely on my own feelings and thoughts but I'm sure I can't be the only one. I'm positive that parents, upon hearing their child is/may die soon, dream up the scenario in their heads (and hearts) of the when and how. Well, yet again I got a kick in the pants with my "fantasy" moment. Two months ago I had that slap upside the head, with my three year old in tow, on the side of the road with purple babe in hand, trying to bring her breath back. And, just a half hour ago, I got another reminder that the "dream" of Scarlett passing in my arms at home isn't as realistic as I would hope.

She has apnea spells, the reason is yet to be determined. They used to last only 15 -20 seconds. But then they slowly increased in duration and frequency. Want to see a grown person go sheet white in a heartbeat? When someone holds Scarlett and she stops breathing, so does the person and their face becomes awashed in panic. To me it's normal. Until today. Today I watched the monitor fall and her chest stop. We are in the hospital, have been for 3 days. Her lung infection is growing, despite relentless drugs, despite our best efforts. She's never been a quitter and I will not give up on her either. But having that damn machine sound alarm, hearing the footsteps run down the hall to our room concreted that a quiet, peaceful moment is unlikely for my daughter if her time is to come. I don't like that useless feeling, that I can't control the when and how, that I can't stop it no matter how hard I try. I have accepted that she's not here for a long time, or have I?

I read somewhere that parents like me go through the stages of grief over and over and over because our life is constantly in flux, dreaming of a family vacation, wondering if death is coming today, hoping to have a seasonal moment with your child before it's too late. I planned on getting professional pictures of my family when it finally looks like spring up here. I even ordered Scarlett a dress which should be here in a few weeks. Now I'm kicking myself for waiting. I may have waited too long. And then again, she could get better and we could go home next week. I don't know. As hard as I may have tried, I've gotten bogged down in the daily crap, in maintaining Scarlett and trying to do things that really don't matter, and I stopped living in the moment with her. I stopped realizing that, as much as I know it, tomorrow isn't guaranteed for my daughter. I think I stopped feeling it so I could just get through the day. But, being here in the hospital with her, there is little else to do but think of what time I've squandered with my entire family.

And now that she's suddenly awake, I'm going to spend time with her even though this isn't all I wanted to post. She's no longer going to wait for me to finish anything before her. Nothing else matters.