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.

Mother's Day Meltdown

It's Mother's Day. This is normally a day I don't pay much mind to but, for whatever reason, I'm really sentimental. Honesty a weird feeling for me. Usually this is just another day filled with dishes and laundry, meltdowns and hugs, timeouts and snuggles. But when I opened the gifts that the kids had made me at school I cried. Here's why:

(From Carson 3 year old) A unique Popsicle frame with his hand print and this verse....

I miss you when we're not together
I'm growing up so fast
See how big I've gotten
Since you saw me last?
As I grow, I'll change a lot,
The years will fly right by.
You'll wonder how I grew so quick
When and where and why.
So look upon this hand print
That's hanging on your wall
And memories will come back of me,
When I was very small.


As I read Carson's gift I started to tear up because, normally, all the kids in the class get the same thing. I knew that this verse wasn't true for Scarlett because she may not get bigger, she may not grow, and I will not have memories come back to me when she is older. It made me sad that I read Carson's gift and thought of Scarlett. I did not want to open her gift because I knew what it would say. I was wrong.

(From Scarlett 2 year old) Same frame, completed by Jess at Strong Start, foot print and this verse...

Scarlett has a certain way
Of growing bigger everyday,
Her little feet and special smile
Will stay in our hearts a long, long while.

I cried because Jess had changed the verse because of Scarlett's conditions. Because she knew that it's not likely that Scarlett will get that far. And it upset me because she had the forethought to change it; she was trying to give me something more appropriate.

(From Cole 9 years old) A card that he wrote telling me that he likes spending time with me. That was hard because I don't spend time with him and I felt like I was being stabbed in the heart. He also made a laminated card that said he liked making cookies with me and had drawn a picture to go with it. I cried again because I don't make cookies with him anymore. I haven't since Scarlett was very little. It was something only the two of us did and now we never do.

Eff'n kids! I laughed afterwards about how sad it all made me because that wasn't the point. I guess I was just weepy and needed the excuse to cry. I know, I know, everyone feels like they're not doing enough for their kids at some point but I  KNOW that I can't meet all their needs and it kills me.

I read on a blog comment that this woman, growing up, had the stress of living with a younger disabled sibling and, as she put it, was faced with the horrible, welcoming thought that if the child died she'd get her parents back and how wrong it felt to have that on her mind at 8 years of age. Then, a few days later, Cole's teacher called because Cole requested counseling (at her suggestion) because our house is so stressful. I'm all for it if Cole needs to talk to someone...someone more objective than myself. But it made think of this woman's writing and I wish there was something I could do to alleviate his stress. I can't really but I wish I could.

I realize that I'm kinda a downer and my last post said that I was going to look on the bright side but I'm still allowed to have my moments of blah, right? I have been happier with my family and more positive (I think) and we have been nicer to each other - likely due to the less stress I'm putting on everyone. Bedtimes still suck royally, drugs are still being made, pumps still need charging but it's a work in progress and I think we're finally starting to get the hang of it.  I had my little *sniff sniff* and it's over so now it's onto dinner and spending time with my family.

Inspired by a Father's Love

I don't know how exactly to start this post. Yesterday I read, for the first time, about Avery. She has SMA and is terminal. Her parents have to watch her precious body slowly shut down. She wasn't supposed to make it to two years. Her dad started a bucket list for her and it went wide!  I read the blog post about her and I could relate; watching your child gain and lose abilities, living in the moment because what may be coming next will break your heart, surrounding your family in love and teaching others about your life and those of others in similar situations.

And then today I read that, just three days after a thumbs up doctor visit, just 15 minutes after her smiling picture was taken, her lungs collapsed and she died. Her father posted a loving letter "by" Avery. I didn't know about this child until yesterday. Not that her story wasn't compelling, but I've read a thousand of these posts and I live it everyday so as much as I felt for this family I wasn't affected that much. Until I read that she so suddenly died. I wanted to scream. I wanted to break down. Not for only this child and her family but more so for my own.

Scarlett has been having some issues lately and she had a close call last week. Not 911, hooked up in the hospital, close call. But suddenly there I was on the side of the road, three year old strapped in his seat watching everything, praying that this wasn't how it was all going to go down. She's fine now but the whole situation jarred me to the core.

Conversations lately with separate individuals have centered around Scarlett's "pending doom". Doctors have started asking about DNRs again ( we went in for antibiotics not anything that serious). Coupled with my previous feelings, this all makes me nervous. But it also leaves me with the question of whether the universe is trying to tell me, warn me, of what's coming next or are theses comments and situations happening because I'm putting that feeling onto others who are simply reinforcing what I'm thinking? Food for thought.

Reading about Avery has left me with a new perspective. Her father, Michael, has been quoted as saying, “We can watch her die, or we can let her live.”. I want to watch Scarlett live. It's a hard, fine line to travel as I am always required to be on guard for every symptom, sign, and compiling evidence that she needs help- to ignore the smallest thing could impact her health greatly. It's always like I'm looking for the worst, waiting for her to die (waiting, not wanting) because her health degrades so fast. Reading today what Michael said  clicked for me. I will not ignore Scarlett's overlapping issues but I will try to see past them, see the child through the complications, and love her to live. 

The suddenness of Avery's passing reflected my own fears about Scarlett. Her father has unknowingly affected me with his words and his courage in the most devastating time in his life. I hope that, even though never actually meeting his precious Avery, she has changed not only my view on life but those of others too. Thank you Michael and Avery for inspiring me to be better for my daughter and for my family.