The March of Time.

I can only say that I remain super frustrated with my blog. Do any of you other bloggers know what has happened to me?? No matter how many times I put the spacing in, it won't save or publish it that way. So sorry. --------------------------------------------------------------------------------------------------------------------------------------------------------------------I can't believe that it has been over a week since Joel died. Time seems to be rushing forward and leaving my little boy farther and farther in the past. This is a sad and frightening sort of feeling. A week ago he died. Before I know it, it will be a month, months, a year, years, on and on. It feels like he is rushing away from me in time. -------------------------------------------------------------------------------------------------------------------------------------------------------- But the truth is that the moment he died, he was in a place I can not reach, even if I could make time stand still. The moment I saw the last light go out of his eyes, in that moment there was a complete separation from me. -----------------------------------------------------------------------------------------------------------------------------------------------------------Still, the passage of time seems as if it were robbing me of my son. It's hard not to feel that way. And I know people say "He'll live on in your heart and memories." Memories are precious, and I will love him forever. ------------------------------------------------------------------------------------------------------------------------------------------------------------------------------But the truth is that our minds are not always very reliable instruments, and when it comes to memories, this is particularly true. Almost the minute after the funeral director took my son's body, I felt like I could no longer clearly picture his face. This is the awful truth about memories here on earth. They dim. They fade. And as time goes on we just remember less and less. Not that my love for my son is less, and neither will be my longing. But the imprint of his fingers in my hand is fading. The sound of his voice is blurry. The way his body felt when I held him is still there, but I can see the edges of the feeling will soon fray away. ---------------------------------------------------------------------------------------------------------------------------------In fact, this is the very reason that time rushing by makes me feel so far from my son. It is not really time, but the way my mind can not hold on to my son, now that he is beyond my reach. If my physical arms can't keep him, I want my mind to hold him clearly. But this is not the way it works. I will always have some memories, I'm not saying that. And it will be some time yet before things blur and dim too much. The point it, I can already feel it starting, and it's only been a week. This is a frightening feeling when you lose a loved one. ---------------------------------------------------------------------------------------------------------------------------------Some people think that when we die, or when God takes us to be with Him, we sort of get a memory wipe. I've heard people say that they don't think they will remember anything of earth, for "how could God let us have memories of all the pain and sadness and bad things." The point being that we'd just have something unpleasant in our minds if we remember earth. -------------------------------------------------------------------------------------------------------So like something like the memory wipe in "Men in Black," God will take away all traces of our life on earth from our minds/spirits. The Bible really doesn't say this. I won't get too dogmatic, because much about our life after death is not made clear in the Bible. It's made CERTAIN. But it's not made CLEAR, and there is a difference. So I'm not quoting the Bible here. I can't state things that haven't been directly stated in the Bible with too much dogma.----------------------------------------------------------------------------------------------------------------------------------- But I think the opposite will happen when we get to heaven. I don't think we'll lose our memories of our life on earth. I think we will receive each and every one back, clear, pristine and complete. I don't think these memories will make us feel bad or sad, if we have been forgiven of our sins by God. Those things can't sting us anymore. But they will be a wonderful witness to us of what we were saved out of and from. Heaven will be so sweet because we'll remember earth so clearly and thus will be able to see how fabulous it is to finally be there and not here on earth any more. ----------------------------------------------------------------------------------------------------------------------------------The story of redemption, of being set free from our evil natures and the sin that chained us down, that story is so beautiful. The plan is wonderful. I don't think God would ever want us to lose a story that He wrote with so much grace and love.------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------ And with that, I think that all my memories of Joel will come back. Of course, I'll have the real Joel, as well, and that will be the best part of it. But I am also sure that every memory of everything with Joel, will be restored. And seeing him in person AND remembering everything with him, will be so wonderful.---------------------------------------------------------------------------------------------------------------------------------------------------------------------- So, I'm trying to remember that time is not stealing my memories. Time is only borrowing them. One day, time will have to give them back to me. And instead of every day rushing me further from Joel, I'm remembering that every day is without Joel is one down until the time I see him again. I don't know how many sleeps it is until that day. But the passing of time, though it robs me now, is really my friend. For now, I am left with pictures and videos and the warped files of my mind. One day, clarity. AND my son, held again in my arms.

Funeral Video

Funeral Day

First of, I want to apologize because something is up with my blog and spacing, and I can't figure out how to fix it. It is so annoying to me, because it's so hard to read one big jumble without any paragraphs. I'm so sorry, but tonight I was too tired to try more than a cursory attempt to fix it. I know I said I'd put the service on here, with the video, and I really will. Tonight, though, I'm just too tired to attempt anything like that. I realized how much work that is going to be for me. So it'll be posted here sometime in the next week. And I might just post it in segments. It was a long service, so we'll see how much I include, etc. But I do want to share it with you blog readers from "out of town." It was actually a good day. I know that sounds strange, and maybe some of you are horrified, but the truth is, it was. It was a sad day, yes. But it was a good day. It was so good to show everyone our wonderful little boy. To show them the pictures and remember all the beautiful things. It was good to see family and friends and supporters, all there for us, coming along beside us to say good-bye to such an important person. There were hard moments, of course. Carrying the coffin to the graveside, the last time I will get to carry my Joel's little body anywhere. On one hand, that was hard. But it was also so clear to us, at the viewing and today, that as much as we loved that little body, it really was only the house for Joel to live in. His spirit was the part of him that truly mattered and that we truly loved. Seeing that so clearly made it easier to give his body up. It is the person he was that we really loved and he is now beyond our reach. There was a lot of joy in the day. It gave me great joy to hear both sets of grandparents speak about my son and his life. It gave me great joy to be able to sing my heart out for him and for God. God granted me the ability to sing. I never would have thought it possible. I know I wrote a blog about how for so long I could not really sing to Joel. My throat just closed off, the words just wouldn't choke out. Today I was able to sing my heart out. I'm glad the people attending were patient. We really did sing for about half an hour. I think it was a bit shocking/surprising for some of them, so they gave me a good gift in letting us celebrate what God has done with allowing me to be Joel's mommy here on earth for 2 and a half years. Today was a much easier day for me, than the day Joel died. That day was much, much harder. Considering how hard that day was, I guess there is still room for a lot of difficulty in today. But there was still a lot of joy. It is the days ahead that will truly be hard. The days when I am at home, and I have to remember Joel alone. Those are the days my heart will be swallowed up in longing. Those are the days my empty arms will give me the pacing fits. The pacing fits can make you crazy. Those are the days when praying might get tough. So please, do not forget me. In the meantime, I can't wait to put up the video I made for you. I am just so proud of my beautiful boy, and I want to share that with you. Thanks for reading and supporting me. And big thanks to all who did attend the funeral. I really was SO, SO HAPPY to see you there, and know that you could celebrate Joel with me. I just wish I had more time today to speak to you all. It meant a lot to me.

Tomorrow

Tonight we are going to "view" Joel's body, and then the funeral is tomorrow. It's strange. It still feels surreal. Grief is a process, a work in progress. It will take time to sink in, time to deal with it all.

For now, God's love and peace are carrying us. We will still need lots of love and support from you in the days ahead. And I ask you not to stop sending your encouraging words of love and caring. I know you don't know what to say. That's ok. Just saying you are praying and loving and caring is enough. You would be surprised to know how much it helps and how much it means.

I don't know how many blog readers are going to be at the funeral tomorrow. But I wanted to tell you, if you are coming, that there will be lots of music. Not, for lack of a better word, the "fancy" kind. I hate to intimate that this means that rehearsing music makes it fancy, or to intimate that the music tomorrow has not been rehearsed, because my pastor and his wife have been practicing it with love.

What I mean, is that everyone attending is invited to sing along. And I don't know about you, but if I'm singing it, that puts it in the "amateur" department. I wanted to sing though. Perfect music is beautiful, but I wanted to sing. I wanted to sing for Joel, because he liked it when his mommy sang. And I wanted to sing for me, because I wanted to spend some time rejoicing in what God gave me when He lent me Joel. I wanted to spend some time rejoicing in how He carried me through the past 2 years, and to express my trust that He's going to keep carrying me through the remaining years of my life on earth. I wanted to sing, too, because while perfect music is beautiful, there is nothing more beautiful that the music that comes out of the depths of the heart. I wanted to sing for God too, in thanks for all He has done.

And so, I am inviting everyone who comes to sing. I hope some of you know the songs. Maybe some of you will learn them for the first time tomorrow. And if you don't feel comfortable singing or with the songs, you are then invited to listen and rejoice with us by doing that. Be ready for music though. Quite a bit of music.

If you can't make it to the funeral, I promise you that I am going to put it up on my blog, later on. I mean the poems, and what we say and also the video tribute to Joel's life. I'll put it all up on the blog, so you can see it there if you don't make it. Our church family has so graciously reserved us a beautiful get-away for two night, after the funeral. They are paying for everything.

So the three of us can get away to rest and regroup after all stress and emotional work of seeing Joel get sick, watching him die, and holding the funeral. If you have never done this, you have no idea how very exhausting it all is. So we are very, very grateful for this gift of love. A respite for us, in the middle of the storm. Refreshing ourselves before we have to learn to deal with living with out Joel.

That will be tough, tough work.

So, once again, I am declaring April as drop-in month. Not in the evenings so much, because Steve needs some time alone with us. But during the day. You can call first, of course, just to make sure it works. But I really think most of the time I will welcome visitors. I need the support. You are a lifeline of encouragement in a dark place. Yes, God is giving me peace and taking care of me. But you are one of the ways He does that. And thank you for being there.

Peace at midnight

I know people must really be praying for us. I can feel it.

Nights are very hard. It is hard not to lie in bed and start to be consumed by "what ifs?" and regrets. Maybe if I had brought Joel in as soon as he needed daytime O2, it would be different. Maybe if I'd asked for IV antibiotics. Maybe if I'd worked to sit him up more in the months before. Maybe if I had turned him more... It's amazing how long this list can get.

All sorts of these thoughts come to you when it is midnight and you miss your child so much. And so you walk yourself through it all again.

How Joel didn't really seem any sicker than other times when he had a "bug." How he'd needed daytime O2 a bit other times and been ok, and we didn't want to live at the hospital every time that might happen. How Joel didn't seem as comfortable sitting up for long periods anymore, and we wanted his life to be happy. How the oral antibiotics had four days to work, but didn't seem to help... working through all the steps of the last month with him once again. And most of all, how I'd also be feeling so much regret if he had died in the hospital because I had brought him there.

It's hard to fight these thoughts. Even when you work through it over and over to the same conclusion. You just want your child back so badly. And as a parent, you feel so responsible for everything that happens to your child. Even when they are terminally ill with a disease that doctors can not fix, you feel as if you somehow could have done something.

But I know you are praying for me. And last night I had a good talk with God as I struggled with these thoughts. I really felt Him saying to trust Him with it all. I felt Him reminding me that nothing that happened in Joel's death was wrong for Joel, that we had let Joel go to be in the best place possible. I really felt Him saying that He was pleased with how I had cared and loved Joel. And then I fell asleep feeling His grace and with a song playing in my head and heart. I felt peace again. I even think I was smiling...

I have just felt so much peace through this. I know that the struggles are not over and that I will have to keep relying on God to give me His peace. But I know He is here with me, and I have felt His presence and His peace so strongly.

Face Marks

I'm going to continue posting on this blog. I just find it helps me, to chronicle all the things I feel and think. But now, for awhile, a lot of it might consist of me saying all the things I miss about Joel. And I'm not sure you all want to read that every day.

So what I am going to do, is leave this blog public. But I'm not going to put it on my Facebook every single time I put some small note on it. There might be a lot of little notes and thoughts. Instead, I'm going to leave it with you. You can check in when you wish too, and wait awhile in between visits if that works best for you. And then, if I have something I think you'd all like to read or that is particularly important to me, I'll put a notice up on my blog. Okay?

Today, I'm going to say that our last two days have been tiring but peaceful. We have had phone calls and flowers and feel your support and it is so important and precious to us to know you care. Truly, it amazes me the way a community and a church come together in support at a time like this. At the same time, we have just been resting here and home, and slowly realizing what has happened, and slowly putting the details to the funeral. It has been surprisingly peaceful, even with the stress that grief causes your nervous system. I've had some experience with grief before this, and it can give you a surprising restless feeling. Despite this, I have felt peaceful.

And here is my thought for the day. Today, I could put on my "nice" clothes to go out in at the start of the day. Instead of saving them for the last minute, and keeping on my "grubbies." Because today there was no danger of little nose marks, or wet little mouth marks, or leaky MicKey buttons. And I felt so sad to miss those little marks of that little precious face, resting agianst my shoulder, or pressed against my heart. I miss those beautiful little marks. I loved to see those marks of love on my clothes every day.

P.S.

I just checked the link on this blog, and yes, it does indeed connect you to the right place. If you check it out, go to the "Home" page, there is a picture of Joel there, with the other children.

I'm really proud of the families who have put so much work into organizing this. They are precious people, all of whom are living with the same condition that we have. All of them are watching their children fight a terminal disease with no cure. They are brave and beautiful families, and I love them. It has been a blessing and a privilege to have their support on this journey.

Funeral Arrangements

Of course, those of you who know a bit about grief already know how it robs you of the ability to sleep. I did know this part of it.

What surprised me was how even in sleep I didn't forget that Joel was gone. It was like it permeated my spirit as I tried to sleep. There were no cords or tubes underfoot when I woke to go to the bathroom. There was no whirr or hum of equipment. It was so silent. I almost turned on the oxygen concetrator to see if that would help me sleep. There was no soft glowing blink of a sat monitor. It was dark. And it was different.

And every time I turned or came to conciousness enough to shift position, I was aware of the changes. Something precious had gone out of our home, and even in sleep I could sense it.

Though I won't truly fathom this for a long, long time.

We are ok, though. Thanks for the many phone calls and messages and cards, etc. Someone sent us a lovely food/fruit basket. People have brought casseroles. We appreciate it. Most of all, it is just encouraging to know that people care about us and are thinking of us.

Today we did some of the funeral arrangements. We are arranging for the obit to appear in the paper, hopefully on Saturday.

The funeral will be on Tuesday at 1pm. At the Wheeler Funeral Chapel, 211 Regent Ave. W. We will have the service, and then we will let those attending get some coffee and tea and visit, while just the family goes to the cemetary for the interment. Then we'll come back for some food and fellowship, so that those who wish to get a chance to speak with us can.

I know that it is tough to get a Tuesday afternoon off of work for the funeral of someone you are not directly related to. I would love it if everyone could come, but please don't feel bad if you can't make it.

If you are a close friend or someone who worked with Joel and you can not make it to the funeral, please feel free to drop by the Wheeler Funeral Chapel at 7:30pm on Monday while we are having the viewing. I would ask that you only do this if you CAN'T make it to the funeral, as we prefer this to be a quieter time. But we don't want to exclude any family or friends, or church family so please do come to the viewing if the funeral is an impossibility for you.

Oh yes, and in lieu of flowers, donations may be made to either Pediatric Palliative Care or to the Global Foundation for Peroxisomal Disorders. If I remember the GFPD address off the top of my head, it is http://thegfpd.org I hope I got that right, I'm pretty tired. I think you can donate via the internet. And there will be a place to leave donations at the funeral.

So cosy in Jesus' arms

The awful, terrible day final came for me. The one I have dreaded.

This morning, when I got Joel up, his breathing seemed to get a bit a bit worse. And unlike the previous days, it did not improve with suction, R/T, or position changes. It was noticeably different, in fact. And my heart started to sink.

I was not alone, some very good friends where there, folding my laundry, and Joel's respite worker had just arrived at 10:30. I checked Joel's sats with the monitor. My heart sank again. It was as I was fearing. He heart rate was way too high. His O2 was way to low. This would be the point in the hospital where they would ask me if I wanted him intubated. Which I didn't.

So I let Joel's respite worker hold him and care for him, while I phoned Steve and phoned P/C.

Steve arrived home at about noon. I sent Caeden with one of my friends and sent everyone else home.

We held Joel in turns. He was breathing very fast, but he appeared very comfortable.

The P/C doctor arrived a little later. He checked Joel's lungs and confirmed the worst. His left lung now sounded like it was filling up. The antibiotics had not helped.

We took off the O2. And then we spent the next 5 hours just taking turns cuddling Joel, and singing, and crying, and praying, and giving kisses, and holding hands, being silent or talking. We took Joel into our bed for much of the afternoon and just cuddled on either side of him.

Finally, his breathing started to get a little irregular. And then, he just stopped breathing... He took a few little gulps here and there for a minute or two. And his eyes looked so peaceful, as he just faded away.

We had Caeden brought home and let him see Joel one last time. My parents stopped in briefly. And then we phoned for the funeral home to come pick him up.

None of this was as horrible as I had expected. There was no blood, no fluids. Joel's face just turned into an alabaster doll. And when the funeral director came, he just carried Joel out in his arms, all wrapped up in a blanket. He didn't even cover Joel's face.

It was not horrible, but it was all very hard. And now I face the part that is really difficult. The part that is really horrible for me. I am glad for Joel, that he is no longer sick, but healed. It is for myself that I feel overwhelmed by the grief and sadness.

For once I stop typing this blog... what do I do? There is no little boy to cuddle tonight... Do I watch TV? Do I read a book? What do I do? I have prayed myself out and there is an end, finally, to how many tears you can cry in one day. So how, now, do I feel this empty space in my arms...?

Lord, please take good care of my boy.

Morning madness

I am feeling a bit tired. I've been fighting off an infection myself (one of the reasons I'm afraid Joel has a virus) and I am now to the coughing stage. And all of this is very tiring.

We are still ok, though. Thanks once again for all the help. I find asking for help less then fun (though you can see I'm still very good at it. ;) ) It doesn't sit well to admit things are more than you can handle, to accept favours and help that you may never get to repay, and to wonder if you are "burdening" someone and they resent it.

From the beginning of this story, though, I could clearly see that I was going to be in over my head. I just decided to bite the bullet and admit that there was no way I'd be able to manage and deal with life with Joel all on my own. My family needed me through this, and I can't afford to burn out or end up collapsing myself.

And so, from the beginning, I have tried humility, and just asked people for help. I have just been honest on this blog. And then left it with God as to who took on the job of supporting me or who just couldn't or wouldn't do that. And God has taken super good care of us, through all of those of you who apparently like friendships with a bit of challenge worked in.

I could never do this with out God's help and without yours.

I'd call this a "story" but it doesn't really have a plot, so unless you are a huge Virginia Wolfe fan, I'm really stretching it. Here is my morning:

Steve gets up to the alarm and sets up Joel's morning water and then an hour later puts his morning feed on. He kisses me good bye and heads to work. Both Joel and I are sleeping nice and snug in our respective beds. I am dreading the moment I shall have to get out of bed and face the day. And the moment I shall have to sit up and start the morning coughing, with it's yucky metallic taste, and then start Joel's morning cough and I have no idea how his cough tastes to him.

Caeden wakes up and goes zooming around the house. I hear him in the bathroom, the living room...??? who knows were else. Finally, he comes into the bedroom. He wants "Lucky Charms" for breakfast. Evil makers of sugar cereal, may a giant size box fall on your head! I mumble something about eating a muffin FIRST. There is more mumbled conversation, which I don't remember, and Caeden buzzes off.

A temporary reprieve before he comes back to announce he has eaten the muffin and now needs some "Lucky Charms." So I get up. And try to find some organization in what seems like chaos. I no longer have any idea of the order, but somehow I manage to give Joel his morning medications, give Caeden the aforementioned cereal-like substitute, suction Joel a couple of times, swab his mouth, make myself coffee, check my email, put a load of laundry in, change Joel, continual comment to Caeden that the various "gifts" and "food items" he is giving me are indeed just the best thing Mommy has ever recieved, start Joel's feeding pump cleaning, throw some of the dishes on the counter into the dishwasher and start it, rinse out the suction, phone a friend to take Caeden for a visit, continual go check on Joel and/or thump his back/adjust his face mask, suction him... yeah. Chaos.

And then there is a call that the suction machine I had ordered can be delivered today. Good thing, because a little later there is a call from the respirology office. Yeah. They want to know if I still need the suction that they loaned to me on Saturday. And no, they didn't ask first "How is Joel? Sorry he is sick and hope he is feeling better." No. Just asked if I still needed the suction. Hello?? I might not need the suction because Joel had DIED?? Ever thought of that?? But maybe they had no idea how sick Joel was. They are not my favorite department. Which is one reason why I made sure to contact our case manager yesterday to find out about the other machine. So now I can send the respirology one back right away and it is done, and they better not phone about the CPAP because I feel a bad case of sarcasm coming on!

So the replacement machine is on the way and I think hmmm....... maybe a little personal hygiene is appropriate at this time. So I check myself in the mirror. Pj's not TOO icky, good enough. Quickly brush the teeth. Hmmmm ... the question of the hair. Right now it actually has this sort of cute and cool "beach hair" thing going on. It almost looks sexy. Except that I obviously have not been at the beach, and the PJ's are a big give away. But if I brush it now, it's just going to lose the cute rumpled look and now look all matted and greasy. Ok, compromise. Mostly brush it, and leave a bit of "rumple" in the very front to add some ooomph. Now hopefully the guy dropping off the suction doesn't think he's arrived at the Munster house and feels safe enough to hand me the new machine.

Thankfully, my good friend arrives a little later to take my little Eddie Munster to her house. And now I take Joel downstairs, change his jammies, set up some more fluid for his pump and sit with him on my lap. I thump him and try to suction him. It doesn't seem to do too much. I pray a little and sing a little. And it feels so nice and peaceful. The chaos is over for now. Joel is aware of his surroundings. As I stroke his head, his eyes close and he relaxes. Every now and then they drift open a bit as I change position or take his hand or stroke his back. Then they drift down again.

And I think, whew. I am so glad I'm at home with him. He is just so happy here.

My parents will show up any minute. Then, yes, I will take a shower and I will let my mom or dad hold Joel. I will try and organize and clean up a bit, and maybe fold the laundry. And then I will sit and cuddle Joel some more. Kathy is bringing me supper, so I can just hold Joel until Steve comes home.

There you have a brief glimpse into my life.

Limbo

Thanks for the food and support, everyone.

I know people will be checking this blog often to see how Joel is. First of all, I want to tell you that no news is, if not good news, then OK news. I want to assure you that if Joel passes away, I will post a blog ON THAT DAY, once I have informed family. So, if you don't see a blog, please do not fret about that.

The reason you might not see a blog is more that there just might not be anything to say about how Joel is. I might need to blog some of my own feelings or struggles. But when it comes to Joel right now, it is any one's guess on how this will play out for us.

Right now it's easy to get sucked into a lot of up and down. It would be very easy to focus so hard on trying to find out what is going to happen that every tiny little "good" thing is a sign he's getting better, and every little tiny "down" is a sign he's going to die. But the truth is that these little pluses and minus's will just be part of things and don't really have much significance.

If Joel is going to get well, it's not going to happen quickly. His whole lung is full of goop, and that's not going to just clear out for him. In fact, the P/C doctor told me it is quite possible that it will never really totally clear out or even get much better, but that Joel's body might just sort of "find a balance" to live with it for .... awhile?? So that for whatever months he has left, he might not really be sick, but he'll need to sleep on his right side and he'll need lots of O2 and that sort of thing. He might be able to smile or play a bit once again, but he'll stay a lung short, and his health will remain very precarious. That is one possibility.

And even if his lung clears, it will be slowly. And the last place that will be confirmed will be with an X-ray or stethoscope. The P/C doctor said that often a return of strength and energy happens before the lungs start to clear out.

And the other thing is that every single day could be a day that he "suddenly" just is too tired to fight on. His breathing will not be steady anymore, it will go all wonky. He'll be less aware. And his hand and feet will get cold and mottled in a last ditch effort of his body to keep his organs going. It's just the nature of the way it goes.

You can't really say he died "suddenly" for surely we have our notice. But it is likely that his body will continue along in the same state, like a car, until it runs out of gas. And there is no way to know how much gas is left in the tank. There will be a few sputters, and then the engine will just die. The dial is on empty, which is warning enough. We just don't know if Joel can make it to the next gas station on the "fumes" left in the tank.

And if you have ever been in a situation where you were out in the boonies looking at that little "E" and a long stretch of road, then you can extrapolate how this feels. Just magnify the feeling. And this is why I'm trying really hard not to get too caught up in constant "He's going to live, no he's going to die, no he's going to live, no.... " You get the idea. It's very hard not to do this. But I'm trying. And one way I'm going to try to do this is not get you caught up in it either, by posting every little up or down.

So if I think there is anything SIGNIFICANT, then I will tell you. Otherwise you are stuck here, in limbo, with me. Not fun. And we could be here for weeks...

I'm not really sure what to pray for. Of course, I just want Joel to get better. Steve is desperately hoping that Joel could live at least until the summer comes. He wants a couple of weeks at home with Joel. It is very hard for me to tell him this is not likely... and I don't really have the heart. It is so hard to believe it myself...

Joel really does seem pretty comfortable. If he didn't, then I'd say pray that if he's going to die, he dies quickly. But I'm truly not seeing much suffering. It's not just me, in my mommy's wishful thinking. The P/C doctor came by today as well, and thought Joel was very comfortable. And yes, he'd be the one to say if it were otherwise, because part of his job is to make sure Joel is comfy.

So, just keep praying that Joel stays pain-free and comfortable. And that whatever God's will is, that it would be done, and more importantly - accepted by us.

I'm not hiding anything. This is very, very hard. Of course, later, I'll look back on this time and wish I could just do it again, because right now I can still kiss my boy and hold him. But living with all this uncertainty is very, very difficult.

I have snuggled Joel lots and lots. I will keep doing that. Not much else is left in my hands.

Thank you and "Instructions."

I'm going to be my usual blunt and direct self. Forgive my directness, but I'm not going be what I feel is incredibly silly by wishing people knew what I wanted and did it with out my telling them what that is.

So, first of all, thank you to all for your overwhelming love and support. I very much appreciate every single word of love, encouragement, and understanding.

This next part is for the people who live close enough to visit:

Casseroles are welcome. Please don't think you need to wait until after Joel is dead to bring a casserole. Being blunt, once again: After Joel has died, cooking might well be a welcome distraction for me. Right now, cooking is an additional responsibility that takes me away from Joel.

Also, visitors ARE welcome. Very welcome. With the caveat, of course, to phone first, because I prefer them one at a time.

Also, I prefer them DURING THE DAY, if possible. If you really want a visit, and can't come earlier, I might squeeze in a quick evening visit for you. But evenings are mostly for mommy and daddy and Caeden to be with Joel.

But I very honestly welcome anyone to come during the daytime. Even if you need to bring your children. Caeden would love that, and Joel is so used to it that I think it's actually comforting to him to have the noise of children around. So don't hesitate to call about a visit

Ok. So there you have it. I have just told you exactly and directly what I want/need. Don't feel badly, now, if you can't manage it. I understand about jobs, and responsibilities and the like.

Again, thank you for all the prayers. It's hard to explain how great it feels to know that so many people are praying for you, until you have been there yourself.

0000000
Karen

Joel Update

Before I go on to Joel, I want to mention something. Some of you have read about my friend Jolene here on my blog, or heard me speak about her. My blog has a link to hers, so some of you may have already read this. But yesterday her little girl, Ashley, passed away. Please keep the family in your prayers. Jolene and Alex. Big brother, Brodie. Hope, who is still a bit sick too. and little baby, Mira. They have been through so much, and now a new and very difficult stage has started for them.

And now, about Joel. Last night Joel's oxygen needs really shot up. We could barely meet them with the O2 concentrator, as it only goes up to 5 l. of O2. He made it through the night, but this morning, even the 5 l. was barely covering his needs.

So we decided to bring him in to the hospital. It just "felt right" as a decision. And when we brought him in and he had chest x-rays, it was bad news. The doctor showed me the x-ray. His right lung, from top to bottom, was just one solid, milky-white mass. I was surprised. I think I expected to find out that he had some white patches on his lungs. But I hadn't expected it to look anything like that bad.

This does not mean I can tell you that Joel has only 48 hours to live, or that he has 2 weeks, or that he might not even get better. We just can't tell. But what it does mean is that Joel is very seriously ill. So ill, that I would have to say that there is more likelihood that he will NOT get better from this illness, then that he will. It is in the realm of the possible for him to get better. But I don't think it is in the realm of what is probable. Only time will tell.

We discussed our options once again. We discussed admitting Joel to the hospital, vs bringing him home. And once again, the only conclusion was that the only thing they could do for Joel there that we could not, was to hook him up to a ventilator if his O2 needs overwhelmed him ability.

At this time, Steve and I once again felt that we would not opt to intubate Joel. The doctor could not tell us if it would help Joel or not. It might keep him alive, but that did not mean it would help Joel get better. Intubating such a small little one is difficult. My father can attest to how uncomfortable it is. And it would mean running a big risk that Joel would die in the hospital, instead of at home, after lots of comfy cuddles.

A year ago, we would have intubated Joel. But Joel is not where he was a year ago. Even before this all started. He's been moving less. He's been babbling less. He's had less energy. And then there's the way his eyes haven't been able to shake those ugly bumps. Last year, I would have been confident he could come off of a ventilator. Today I was not sure. And we didn't want to risk that.

I'm glad we took Joel in to the hospital. It was good to really know what was going on in his body, even though it hurt to see the X-ray. Plus, the hospital could send us home with a suction machine (because I had foolishly returned ours, since we hadn't used it in the 8 months we had it!) and a suction machine is helpful in helping Joel be comfortable with all the guck in his airway. We also got a script for a different antibiotic. One more targeted for chest infections, and then we'll still keep him on the other antibiotic, the one for his eyes. This way his coverage for infections has a bit of overlap and is much broader in scope.

Of course, the antibiotics might not help at all, because this could very likely be a viral infection. Since it would take 2 days to get the blood work done that would tell us what exact bacterial infection it might be, if bacterial it were, we decided to just go with an antibiotic and be done with it.

And so, we took our suction machine and our prescription, and we came home. And do you want to know what surprised me? I felt so at peace with that decision. I just knew that if we said yes, at this point, to ventilation, it would be for me and not for Joel.

And tonight I cuddled Joel, and it was right. I was at peace. It was just so right to cuddle him on the couch, so cosy, so relaxed, and so much love. If Joel has to die, then this is the way I feel is best for him. Our time might be very limited. But it is so very precious.

Ode to Home

Yes, I thought I'd write a little blog about how great it is to be home, as compared to being in the hospital. It will make me feel better about this whole thing, just comparing the two, and remembering the differences.

Joel loves to be at home. He used to get really happy and smiley when we'd bring him home from the hospital. He is a smart little boy, and very aware of his surroundings.

At home, I can hold him for hours without getting uncomfortable. We have our "comfy" place on the couch. We have pillows all arranged so my arm doesn't get tired, and to cushion his body. He snuggles in to me and rests for an hour or two at a time. At the hospital, even half an hour is getting uncomfortable. I need to put him down a lot and take breaks and walk around to ease my back.

At home I can sing to Joel and cuddle him without any interruptions. It's just us. No one walks in to check his pulse or temperature. I can stay in the "cuddle place" in my mind and don't have to worry about switching in to "doctor mode" to discuss something.

At home, I can give meds as they are needed, when they are needed. If Joel is in more pain, I don't have to track down a nurse to find a doctor to ask to order some meds which then must be sent up from the pharmacy. I just give him some. And I don't have to ask if I want to try giving him less pain medication either, so he can be more wakeful. I can adjust his oxygen up or down, or take off the nasal prongs for awhile if I wish. But the pain medication is the best part of home. Because when you feel bad, even waiting 15 minutes for medication to come, is just waiting so long.

At home, there are soft blankets underneath Joel, comfy clothes on him, and soft blankets on top, if needed. It is so cosy. There are gentle strokes on the head and hands. There are never any pokes. There is never a need to be in "hospital jammies" due to an IV. And hospital blankets and beds are awful. At home we have soft "furry" blankets under us and around us.

Home smells like home. There are yummy cooking smells. Mommy smells. Daddy smells. Caeden smells. And home smells. It all smells very nice, comfy and warm.

At home, we are so flexible. We sleep if we are tired, and no one wakes us up to measure us or weigh us or press our bellies. No one comes in at 8AM and says it's time to have a bath. We wash our face when it's convenient. And if we don't wash our hair, no one fusses about it.

At home, either Mommy or Daddy are always close by. They never have to go out to get supper, they cook it and eat it in the same room we are. We can hear the voices of the family talking together every night at dinner time. At home, Daddy can say good bye to us each morning before he goes to work, and kiss our cheek. We hear him all evening long, he holds us, talks to us and kisses us. Not like the hospital where he can't get a chance to duck in more than half an hour most days of the week.

Home is restful and peaceful, even with a TV on and a brother blaring! It feels more like love and less like stress. Our daily schedule has only one rule: lots of cuddle time! Home is a family place, a warm place, and a love place.

Thought Process

Last night Joel had a fever. It was a more serious fever, in that it didn't respond very well to medication. At 9pm I gave him Advil. At 11pm he still had a fever, and I gave him some Tylenol. At 1AM he still had a fever, but was now resting very peacefully, so I put him in the bassinet in the living room and lay down on the couch (so we wouldn't disturb Steve if I needed to get up again). I don't know when the fever broke, but sometime between then and 6AM I woke to see his heart rate was down, so I knew the fever had finally gone.

So now, before I go on and get all heavy on you once again, I better, once again, say that I don't think Joel is going to die this weekend. He looks better this morning. He's absolutely not on death's door, as much as I hate uncontrolled fevers. And of course, once again, I have to say that his health can also change quite quickly.

I feel fairly sure that Joel does have a virus. I don't know when the viral infection started, or how long he's had it, as it would really be impossible to tell these things when it comes to Joel. I also feel fairly sure that even if things "get rough" with this virus, we're not taking Joel to hospital.

It's a tough decision, and I know you've heard about it before. But I'm framing it again, more for myself than for you.

1. I'm not afraid of death on Joel's behalf. I am sure that when Joel will die, he's going to be with Jesus, in paradise. I think Jesus' promise to the thief on the cross holds true every bit as much for my son. So death has no terror for us.

2. I dread Joel's death on my account. Losing Joel will in some ways very much mimic losing a limb or two. If today you tried an experiment where you tied your right arm down and then went about your day, you might get a bit of a sense of how my life will be both emotionally and physically once Joel is gone. Every moment will be different and every moment the loss of something precious will be felt. In fact, if you want to do that one day, after Joel has died, to show some solidarity with me, that would mean something. It would for sure give you a feel for how MY days are going to feel for a long, long time.

3. Joel's existence on earth is precious, because God has given him his life. His time here is special and treasured, every single moment, because God values his existence here on earth.

4. I'm determined to do as much as lies with me, what is best for Joel, and not what is comfortable for me. And the fact of the matter being that really, NOTHING about this feels comfortable for me no matter what choices we make.

5. God has clearly put a limit on Joel's life on earth.

6. I want my choices to reflect both the value of the life God has given him, and the trust I have in God to decide when the right time is for Joel to go home to be with Him.

I have felt it is time, now, to start praying a new prayer. Now I am praying "Lord God, it seems Joel's health is going downhill. I no longer feel confident that as he gets sick, he will get well. I do not want to fight You to keep Him, knowing I risk prolonging his sickness. So I'm leaving this with You, now. We will not bring Joel in to the hospital unless You clearly show us we should. You can heal him if You want him to have more days. You know this is our desire. But we are leaving it with You."

When Joel looks peaceful, this is easier. I can let him go, when he seems pain free and at rest. When Joel looks uncomfortable or ill, as he did last night, this is harder. Not hard because of the death part. Hard because of the ILL part. There is a very strong, very fierce instinct inside that says "You must DO something," when your child is not well. It is that instinct that would make you run into a burning building, or tear a car door off, or tackle a mad man with a gun, to keep your child from harm. That instinct which says you must try with all your being to keep your child from harm.

Of course, the problem is not really that instinct so much as the fact that our understand of what it means to keep our child from harm, and what to do to help him might need to change. And it's tricky to do that. In the past, keeping Joel from harm meant going to the hospital and seeking any treatment possible.

But now, keeping Joel from harm might mean NOT trying to keep him. It might mean holding and comforting him at home to help him feel better. But old thought patterns die hard. This is not a way we have ever had to think before. It is new and it is strange.

And there in lies the battle. This is the reason that even though I have thought through numbers 1 to 6 numerous times, it is still hard for me.

I've spent a lot of time singing this week. Praying, too. But singing especially. I find singing is a good way to pray when words just don't come. Or when distractions threaten to derail you the moment you start to speak to God. Of course, when I say "singing," I'm not talking about the Beatles or Bieber. I'm talking about singing worship songs to God. If you are wondering how I am doing in all this, I guess that sums it up best. The fact that I need to sing. And the fact that I still can.

Eye Bumps and Life Lumps

I had thought that Joel's eyes were, at least, getting better. That the antibiotics were really helping. But a day or two ago, another huge lump started under his right eye. It's grown to epic proportions, just like the first one on his upper left lid did. The size of a large pea. It's rapid growth and the pressure it has caused keeps breaking blood vessels in the eye lid, so that Joel's eye keeps leaking blood. The blood then dries and sticks his eye shut. But that doesn't matter too much, because the lump is so big and the eye lid so puffy that Joel doesn't open that eye anyway.

I'm sorry if this sounds like a horror story, but then, in a way it is just that. It's not really bothering Joel, other than I think it's annoying for him to feel it there and not be able to open his eye. But it doesn't distress him. It distresses me. I'm the one who is horrified.

And I cope with it, this thing I have absolutely no control over, by putting it aside as a thing that doesn't really matter. I cry about it at times. But mostly it's something I can do nothing about, and if I think about it, I remind myself that Joel is comfortable and that eye bumps, in light of everything else, are MINOR. That's how I cope with it. I do my best to refuse to make a big deal of it.

I greatly wish I could tell you something, anything about Joel's condition, but I don't really know how he is doing. He is such a mystery. The P/C doctor was talking with me on Friday. He said how often it's really hard to tell when a child is close to dying. Afterward, of course, it all becomes clear. But afterwards, it's just really hindsight. If Joel had gotten better, we'd say, "oh, he was just sick," or "oh, he took a downturn." But if he died then we'd say "Oh, I see now that it all was a sign he was dying." Yeah. That pretty much sums the problem up.

Children are so different from adults. Particularly when they have a degenerative disorder. I feel like it's sort of my job to figure out and know sort of when Joel's really close to death. So I can let friends and relatives know. Have my family come over specially. That sort of thing. But on the other hand, I feel like the boy who cried wolf when I hint that it would be good for people to "come see him," but then he gets a lot better. It's a lot of pressure for me, I guess. Feeling like I should somehow know. And protect everyone else from "false alarms."

This is where I have to live though. I face the same problem every time "something" goes on with Joel. Life has tried to "cry wolf" for me with Joel quite a few times. And I've manage to stare down a few doctors when I didn't buy it. Like last year, when Joel had the problems breathing. I really didn't feel Joel was on his way out then, though for sure it was scary. Of course, that is the thing. I can never be sure. I can never be sure until IT IS HAPPENING.

So, I'm not trying to cry wolf here, and I'm not trying to say that Joel is about to die, and I'm not trying to say that everything is situation normal either. I'll just tell you what I know, and then you will have to figure it out for yourself, same as I do. That's as good as I can do for you. Sorry. But it's also as good as I can do for me, and if I have to deal with it, surely you can do too.

Joel may have a viral infection. His blood work was never quite clear on that when we brought him in to the hospital. If this is a viral infection it may be a bit different from other's he has had. Or maybe not. Because this time we have home oxygen and a CPAP. And that might be making a difference in how this appears.

He's not had much fever. He's had his usually fevers, that he has had for at least a year or more now. He's not coughed very much, though he has coughed up some pretty yucky guck at one point. But then, when he is ill, he doesn't always have a fever and he doesn't always cough. See why this is so tricky?

He started out with a week of pretty bad unhappiness/irritability/pain. Now he is very comfortable. But he sleeps most of the day. A friend asked me how many hours a day he sleeps. I had to laugh. Easier to count the time he is awake. But not in hours. In minutes. Yeah, that is what I mean when I say he is sleeping A LOT. Though I have reduced his morphine, and he is more responsive. If I touch him or move him, he responds. But he just goes right back to sleep.

During the irritability, his O2 was fine. But since about Wednesday, he has first had some stridor, then lots of upper airway "rattles" then some stridor and now he sounds fine. But he still needs an O2 boost right now. This has happened to him before, back in the fall, and then it went away. But that was much briefer periods and more off and on.

He is moving very little. Is it because he is sleeping? I don't know. He does move his head or his arms a bit when I stimulate him. Besides opening his eye, I mean.

I don't know what this means in the specific. And it would almost be meaningless to say it means he is dying. Because he's been dying for a long, long time now. It tells you nothing about the specifics. What I do know is that Joel has been going downhill for quite a long time. And whatever happens in the next week or two, of course, this was not a good sign. But I don't know, and not even the P/C doctor would venture a guess about it, whether that means Joel's going to live another 6 or even 8 months, or if it means Joel's going to live another week or two.

This is one reason it has been so hard for me to write here and tell you about my heart. How can I explain any of my feelings with out telling about all this? And if I tell you about all this, how can I help it if you leap to the conclusion that Joel will die any moment, or if you think I am just "panicking" and over reacting? (I'm not doing that, by the way. Just saying) Well, I can't help it. I realize that. So I'm writing this to you to give you the same info and choices about what you think/feel about it that I have. Of course, I'm his mother, so it is a bit different. But you know what I mean.

Now, maybe, one of these days I'll write about my thoughts and feelings about it all. Not just about the eye bumps. (which, by the way, are the most OMINOUS thing that has happened for me. Yes, the eye bumps seem more ominous to me than the sleeping and the O2 and all that. Because the eye bumps have never happened before, you see.)

I hope when I do write my feelings, you'll remember what I wrote here and that when I write my blog, I'm sharing thoughts and feelings. That means they are not verifiable TRUTH. They are subject, not objective and they change from day to day or hour to hour. I'm just saying.

For now, thanks for your prayers and concerns. They are appreciated, very much. Tonight, the church is popping over to sing to Joel once again. I hope he will enjoy it, even though he is drowsy. It's one of the few things we can do for him right now. And so, we will sing.

Babbling

When it comes to Joel, I think I'm not really ready or in the mood to discuss it all today. So, I think I will save that for another day.

Instead, what I will blather on about is about how I've been getting healthier, and I feel great about that. I'm finally losing some weight, for the first time since at least before Joel, I have finally crossed the 170 lb line of defeat! That feels great, although I still can't really see it much in my clothes or anything. I know. Patience, right? It's just hard to be patient, when I have wanted to lose some weight for so long now.

And I feel in better shape, too. Thank you, my Wii fit friend! I can see a difference. Running for 10 minutes now actually feels good, even 20 minutes doesn't feel that bad. (yeah, no worries about a marathon or anything, this is just jogging in one place!)

Then there is the best piece of equipment we've ever gotten for Joel. I am just loving it! Ok, how's this for a strange or weird, or maybe even sad, piece of info. We finally realized that we would save Palliative Care money if we just went ahead and rented an oxygen concentrator. Now I'm kicking myself for not doing that sooner! An O2 concentrator is a fancy machine that somehow takes room air inside, and yup, you guessed it, CONCENTRATES the O2 before blowing it out into some tubing.

I don't have to worry about the tanks running out all of a sudden due to an unexpected increase in Joel's needs. I don't have to worry about a tank running out in the middle of the night and having to get up to change it. I can give Joel as much O2 as I think is good for him with no worries. It's great!

And then just today I made another discovery. The concentrator is a HUGE and HEAVY piece of equipment. No way it was going down the stairs. So when I took Joel downstairs I still took a spare tank, or just only took him down if his sats were good. And then today, I was looking the whole set up over. And I got this thought... Hey, fifty feet of tubing is PRETTY LONG! And I realized I could just run the tubing downstairs all the way to the couch to cuddle Joel there, even if he needed O2! And no lugging O2 tanks up or down, either! Why didn't I figure that out right away???

I'm sharing these little details with you, because I'm just tired, today, of all the emotions that have been going on with Joel for the past 2 weeks. It's really tiring. I'm tired of crying, worrying, thinking, remembering, longing, doubting, evaluating... all that stuff. So this upbeat blog is just a break from it. Whew. I needed that.

And yeah, I'm keeping my verse close to me. Here's my favorite version. "In returning (to God) and in rest (in Him), you will be saved. Your strength will come by being quiet (in His arms) and by trusting (Him)." Parenthesis mine. ;)

Update on Joel

Joel has really been giving my nervous system a good work out. It's just been a tough couple of weeks. I might need heart medication.

Yesterday he had an amazing pain-free day. He mostly slept, but he was really relaxed this time. I could clearly see that the subtle fist of pain inside had unclenched, and he was truly comfortable.

I sang to him for about an hour. He dozed on my lap. Whenever I switched songs, he'd peep out from under his eyelids, just to show he was listening and appreciative, and then go right back to relaxing. Something as simple as that was like water on parched ground.

Too bad it didn't last longer. Joel's breathing got really "crackly." His upper airway does this from time to time. Just full of rattles. It sounds awful, and it gives you an almost irresistible urge to keep clearing your throat, but we are used to it. If you are not aware, then I will tell you that as long as the sounds are from the UPPER airway, you are still in a no need to panic" sort of mode. "This time it didn't really clear though. It was the worst I've heard it, and his O2 needs increase dramatically. This worried me. I wondered if his breathing was taking another downturn.

It was a bit of a rough night, though from about 1:30 on it was fairly peaceful. We did face mask O2 at a higher rate than usual, but the alarms did not sound.

Then this morning he had a fever and looked awful. I don't know where my blood pressure was by that time. His O2 needs went up again. I wondered if he had pneumonia. I wondered if he'd aspirated some of the rattles and crackles from the night before.

After giving him his morning steroid and treating the fever, he began to look quite a bit better. In fact, I began to believe that he might actually get better, and not choose this week end to die.

The P/C doctor came by. He listened to Joel's chest, and just observed him. He was very helpful in discussing our options and plans. He felt, from how Joel looked, that he was indeed fine, and would be getting better this weekend, and not dying, like I had feared.

And after really discussing our options, I felt better about some of the decisions we were making. It's always a struggle, deciding to treat or not to treat, to go in to hospital or not to go in to hospital. Right now Joel is on antibiotics, so if he did develop pneumonia it would either be viral or a really potent bacteria. We can do antibiotics here at home. Even with IV antibiotics, the only advantage is how quickly they start working. The only thing, really, that they can do differently for us at the hospital is put him on a ventilator if it comes to that.

Right now, as long as Joel is already on antibiotics, we will not bring him in. I can't really see it being a better option. We really don't think at this time we'd be willing to put him on a ventilator, particularly as we'd be dealing with either a virus, or a resistant strain of bacteria.

We are going to reserve our right to change our mind, as our circumstances change. If we were not already on antibiotics, we would have brought him in for more blood work, IV antibiotics if needed, and we might consider a ventilator if needed until the antibiotics had good opportunity to "kick in."

So many of our decisions are temporary. We never know what each day will bring, or what changes will come for us or Joel. It is stressful. Understatement. Some days I just want someone to come over and tell me what to wear, what to cook for dinner, and if I should fold the laundry or wash the floor, because I'm so tired of decisions. No, I'm just joking, please don't really tell me what to wear, that would just be annoying. ;)

For now, though, I mostly feel relief. It seems today is not THAT DAY. THAT DAY. Instead, it seems today is a day to hold my baby, and maybe sing some songs. I'm really quite happy with that. But if things do start to go wrong again, I feel at peace, knowing that for at least the weekend, I know what the right thing to do is.

Waiting for clearance to land.

Yup, I think we are in a holding pattern.



Joel is doing ok. He is mostly peaceful, with short and infrequent periods of being upset or unhappy. By short I mean usually only a few seconds to a few minutes. It's not great. But it is bearable.



We did take him in to emerg on Sunday night. We did have his blood checked and they did do a urine sample and both came back clear. There still could be an undetected viral infection brewing, his blood work was not as clear on that. Still, considering his lack of fever or other symptoms, and considering that he has been sick many times without this level of pain and upset, I'm pretty sure, as I always was, that he is not sick with a germ of any kind.



They also did a couple X-rays, but only of his spine. Each time he's had a buckle fracture in a limb, it became apparent within a couple of days that there was a particular limb associated with the pain, and we just haven't seen that. So we only checked his spine, which also has not changed since the last compression fracture. I'm glad we checked it, as now I don't feel quite so bad or worried about moving him.

But we, of course, didn't get any answers. They offered to admit Joel to run as many tests as we wanted. But when I asked if the doctor if he had anything in particular to look for, any ideas for an answer to the pain, he said no. He is a very nice doctor who has seen Joel numerous times, and I trust him enough that we decided there would be no point to a bunch of other tests.

It would be different if we hadn't already done this once, back when Joel was a year old. That time he was admitted and that time they did do a bunch of tests, but didn't find anything. I really couldn't see any point to a repetition of that.

So, we are up to a very high dose of morphine. Ok, I should say, what is comparably a high dose of morphine. The last two years we have never needed more than 2mg, or maybe 3mg occasionally for really bad pain. And we really haven't need it that much. Last spring we were almost completely "off" of it. But now we are, for the first time, using between 5 and 7mgs of morphine, and the Palliative Care doctor has given us permission to go higher if Joel is still unhappy.

I'm not too worried about the sedative effects. Joel is still completely wake-able. He is sleeping a lot, but then, pain tires him out quite a bit, and he tends to really sleep away the bad times, if he can. As long as I can still easily wake him (read, disturb him from his peaceful drowsing to an unhappy face with in 2 seconds), I know it's not too much morphine.

But it doesn't feel very good to know that his pain level is up that much higher, and whereas previously in times of pain, the 2mgs sometimes even got him smiling and playful, I haven't seen a smile in what feels like a long, long time.

We also started Risperadone. It's a drug that sometimes works in these sort of situations where there is a degenerative brain condition. I'm not too hopeful about it, though. I really haven't seen much difference in the two days we've been on it. I think most of the pain management is coming from the morphine. But we still have a couple of days left for the full effects to kick in, so I'm trying to keep an open mind about it.

I'm happy about the fact that Joel is here, in a comfortable and loving home, instead of in the hospital. I'm bummed out that he is feeling so yucky and that he doesn't even feel good enough at any point of the day to smile. This part of Joel's illness is so very, very hard. It is this part of the whole thing that I dread most, and that I find the most testing of my faith in Christ. These periods are the darkest. They are the times when I have the blackest thoughts. I'm not sure how to explain this. Depression? It just seems like the world is filled with so much darkness and pain. The glass seems half empty. It's like a very grey, wet day just before spring. The wind is sharp, everything is black and white, and all the light seems to filter slowly through this dark grey of cloud.

And I am very sad about it all.

So here we are waiting, circling the skies. I'm hoping that we can ride this pain through to the other side where there are more smiles and happiness for Joel. I'm hoping that as I carefully keep adjusting the morphine, I'll be able to extinguish more of the pain so that instead of just calmness, I see some sign of real relief.

It's hard to explain that. Joel isn't screaming or crying. He is calm and peaceful, and he is mostly sleeping. Yet I can still see that he is holding a ball of pain in him somewhere. It's barely distressing him. But I am waiting to see his hold loosen and the ball of pain slip out of his grasp and roll away. This is what I have not yet seen, that ease and relaxation when the pain completely rolls away.

Hard to wait for this to pass. I'm still keeping in close touch with P/C, I'll be emailing the doctor today. We will keep looking into ways to make Joel more comfortable than he currently is. There are other options to try. And sometimes it seems time is the thing in Joel's case. He's had so many bouts of pain (this being the worst) and whatever has caused it has passed, be it a day, a week, or a month.

So thank you for your prayers. And for the notes and encouragement. We appreciate them. You know I am honest here, so I'm not hiding anything. I'm saying that because I don't want anyone to worry that it's WORSE then it is. We are ok. I'm just sharing my feelings and impressions freely. And God has not abandoned us. He has not abandoned me. Even through this, I never feel abandoned by Him. One day He's going to make this all better. It's the waiting that is hard.

Joel Update

Just a short update for those who are worried about Joel. Today he was no better, and still seemed to be in quite a bit of discomfort. It is discouraging.

But Palliative Care came over this morning and they helped me feel ... more empowered? I'm not sure how to explain it. We discussed the options, going to hospital vs staying home. I felt better knowing that they saw how he looked and even his distress, and agreed that it was not too likely that a hospital visit would do much for us, and would be quite distressing itself.

We also discussed Joel's morphine, and how to up his dose to provide more relief. I was happy and very comfortable with their suggestions, because I see Joel every day and know that he tolerates morphine extremely well and that it is an A1 pain relief option for him. I feel better knowing I can safely make him more comfortable.

The plan is to ride out the weekend and keep him comfy with regular doses of morphine. If I feel the problem is drastically worsening, then we'll take Joel in to hospital. Otherwise, we'll re-evaluate the plan next week if we don't see any improvement.

I'm very relieved about this all. Once we take Joel in to hospital, we set in motion a bunch of procedures which are basically unavoidable. They insert a catheter and take a urine sample (even though we are sure it's not a UTI, as he just came off an antibiotic yesterday), they take blood work, they would likely x-ray his whole body, even though they usually can't/don't cast him. It's long, it's uncomfortable, people keep coming in to press his abdomen while he's trying to rest. His meds are disrupted, his feedings are disrupted, it's just no fun.

Right now his breathing is great. He is pooping and peeing just fine. He just ended antibiotics and he starts the next round in two days. It just doesn't seem like it would be worth it to go in.

And I feel better knowing the Team saw him and agree that I'm not doing any thing ridiculous or crazy, that it all makes sense.

All over the map

That's the best I can describe myself today. I don't know where I'm at or where I've been or where I'm going.

This morning little baby Ellie died, her blog is on my sidebar. I'd say that "bummed me out," but that doesn't really seem the best way to describe it and I don't know if there is a word for it. Yes, I cried when I found out, but it's not like I spent hours sobbing. It's different, it's a more internal, almost visceral reaction. It's a strange feeling, when I find out one of the PBD kids has died. I feel restless. I feel lost. I can start about 10 things but have no desire or drive to finish any of them. I wander around. I feel anxious. There is an itch or a pressure on the tip of my brain where I can't reach to relieve it. Or maybe the place with the pressure is in my heart, I don't know. But I don't know what to do with myself on these "death" days.

And I know that this is a precursor to how I will feel for months after Joel is gone. The same restless, lost feeling. The same pressure or itch I can not relieve. Yeah. It's not a high scoring day for me emotionally.

Then I have to say that Joel has not been doing great the past couple of days. I'm not sure, but I wonder if he has another buckle fracture somewhere, or spinal compression. Nothing is obviously broken and there was no incident where I noted he was hurt in some way. But he seems to have pain, particularly when he is moved. I'm treating him with morphine, and trying to decide what to do.

He's had so many x-rays, I'm surprised he doesn't glow in the dark. And though he's had 3 buckle fractures and a couple of compressed disks, he's never had a break that could be casted, and I feel pessimistic about what could be done, other than pain meds. So I'm not really liking the idea of bringing him in for pain with an unknown source. That, in itself, is an uncomfortable or even painful endeavor which I would go to any length to avoid if it's not going to help anyway.

Pediatric Palliative Care is coming out tomorrow for a home visit. They are "another set of eyes," and can help me assess Joel and decide what to do, even though, of course, a home visit won't be enough to confirm or rule out a broken something or other.

I can manage the pain with his morphine, so that he is, for the most part, comfortable. But I can't make him happy, playful or alert, which is hard for me. Instead, he is spending his days sleeping, or dosing. I'm glad he is comfy and not in pain. But still, it hurts to see him just sleeping or dozing in a trance-like state. In fact, I hate the way it is today, I hate days like this.

So, my day is all over the map emotionally, but not in a tourist seeing the sights kind of way. Not in a "I went to the zoo and then I went to the art gallery and came back with a shirt" sort of way. More in a "mines of Moria and tour of Mordor" sort of way. If you don't know your Tolkien, I mean more like wandering in the dark and dismal and then for a change going to the stressful and uncomfortable sort of all over the map kind of day.

I know bad times are coming for us. I know bad times are coming for us. Drums, drums in the deep. You know that I know that God is faithful. These feelings don't negate my certainty in Him, and in His ability to go through it all with us. But the knowledge that God will help us and go through it with us also does not completely negate these feelings... I feel at peace with the future, at the same time I can not help feeling some dread about it.

Double Standards

Double standards. Yes, I have them. When it comes to Joel, I have one set for me, and another for other people. And I think I might sort of believe that is my mother's prerogative.

These double standards apply to a lot of places. For one thing, how I "see" Joel's body from day to day is with a varied and sometimes ambivalent emotional response. I mean, some days, when I look at Joel's stick thin legs and arms, I feel a great sadness. I feel that his body has "let him down" and that it is "flawed." Ok, I mean, that makes a sort of logical sense. But I'm not talking about logic, I'm trying to explain FEELINGS. Of course, there is a flaw in Joel's genetic code, if you want to use the English language to be precise. I'm really meaning my emotional response to Joel's whole body, that feeling of sadness, longing, disappointment that is my emotional reaction to seeing the evidence of that genetic flaw.

I also have days where I look at Joel's thin little legs and arms, his twisty little feet, all of him, and I think HOW BEAUTIFUL HE IS. I think how much I love his special little body, how dear it is to me. How the twisty little feet are so cute and precious. How brave that body is for fighting on despite all the obstacles in the way to live and grow. I am awed at the way it fights to be well and to live, and I even feel grattitude for it. I love his little body, and I don't see flaws or remember what a genetic code is supposed to be. Again, I'm not talking about logic. I'm talking about feelings here.

Here is where the double standard sets in. I feel allowed these extremes. But I find myself, at times, resentful of other people having them. Especially if they react in the more negative way to Joel's body. It disturbs me if I think people are viewing Joel's body with sadness. I don't want them to feel his withered limbs are pitiful. I don't want them to see his body as deformed in any way. It seems I feel that I am allowed to grieve this, to feel these negative feelings. But if other people have them, I find it hard to stand. At times. With the exception of Steve. Apparently I still grant him the same "Daddy" privileges as Mommy has. But most of the time, when it comes to other people, I just want everyone to feel Joel is beautiful, to see how attractive and precious he is, and not feel ... pity? towards his body...?

And yet at the same time I want them to acknowledge my sorrow... to see my sense of loss... to understand my own sadness... It's really quite a double standard.

And it doesn't just apply to this situation. It also extends to how others see/feel/express the expectations they have about his life span. I confess, I'm hard to please. Well, I'm hard to please when it comes to myself as well. I walk a very thin line. On one hand, I know that Joel could still live another year, maybe two. And I also know that Joel could just "suddenly" die tomorrow. I live with this tension all the time. I've gotten so used to it, I'm not even sure I notice that much. And so, I guess I feel it's ok for me to think more negatively, to feel that surely Joel is not going to last much longer, that I feel the need to "prepare" myself for his death which is coming any week now.

At the same time, I am allowed to look on it positively. I'm allowed to plan out of home respite for the summer so we can go on a trip because I feel Joel will still be "stable." I'm allowed to see small things that I think are "good" signs of his health. I can feel positive when his oxygen needs go down from where they have been. I am allowed to feel almost carefree at times. I'm allowed to enjoy looking ahead to a future, even though it is brief.

Of course, in keeping with the double standard, I find it hard to bear these extremes in other people. Again, it is the negative that disturbs me the most. While I might sometimes secretly feel that the much dreaded "death day" is almost here, I am very vexed if a doctor dwells on it. My back goes up if any friend or acquaintance intimates in any slight way that Joel might not be around too much longer. My hackles rise. Never have I felt the presence of hackles so keenly as with things pertaining to Joel. Perhaps werewolves do exist, because sometimes I am tempted to check my hands for signs of fur when my back is up! Don't worry, so far I have never torn any one's throat out. It's amazing the calm and polite answers I can get out.

I do realize the double standard here. And that it might not be totally fair. I feel I have a right to some of these feelings, both postive and negative, because I am Joel's mother. And there is some truth to that. Still, we are all people. Surely everyone has some right to their feelings too. Even if I don't always like them. I guess I don't have to like the feelings and reactions other people have to Joel or his health. But I can't rip them apart. It's against the law, it's unethical, and, well, joking metaphor's aside, I better "forgive" them, because my own feelings have been handled with forbearance many times.

I'm struggling to learn to be fair with the emotional reactions of other people. And to their thoughts, too. And when I find it hard to be fair, or they don't give me much to work with, then I'm struggling to love and respect them anyway. It's a mother's prerogative to have her feelings about her child's illness. It's also a privilege to be gentle, kind, forbearing, and understanding about the feelings other people have.