Acceptance

Several months back, we were in for an appointment with one of Joel's many doctors. The doctor noted to me that I seemed to be doing much better, and I seemed to be more at peace with Joel's diagnosis. (I am paraphrasing here, as I no longer recall his exact words) I think the words were very well meant, and were supposed to be encouraging to me.

I am afraid though, that other than my utter suprise at his comment (because I am pretty sure he just caught me on a "good" day.) I mostly felt annoyed, or maybe even angry. Not at him though. It was the whole idea of "accepting" the diagnosis that got me mad.

Hmmm. Acceptance. One of the five stages of grief. Hmmm. Here is a shocking statement for you all: I don't think I will EVER reach that one. That must be shocking on many levels, so I'm afraid I have some big explaining to do.

Some of you might think, based on my last two blogs, or on some of the things that I have said, that I have already reached that stage of "acceptance." I can assure you, as illogical as it may seem, I don't think that it is true.

I do remember reading in a book once (I think it might have been a Margaret Laurence book, but I really don't remember for sure) that we don't ever really come to accept or understand anything that happens to us. We just get used to it. I am pretty sure that is much closer in line with what has been true in my life.

I have not at all come to accept this. I have gotten used to it. It no longer shocks me in the day to day, because it has been happening for over a year now. But I can assure you, all I have to do to summon up my feelings of shock and disbelief, is to actually think about it. When I really think about the fact that Joel is blind, is delayed, is slowly dying, I just can not believe it. Surely not!! Most of the time, though, I don't think about that. I have gotten used to daily life as it is, and as it is no longer suprises me much. This is not acceptance, it is just familiarity.

I know I wrote previously about how much I love my boy and how I love his cute blue roaming eyes. I meant every word. I meant that all the love I have for my boy has somehow managed to block out what I used to see. I used to see those jiggly eyes, and I felt immense pain because every time I saw them I thought of how Joel could not see and how his eyes never stayed on me or showed me "emotions" or all that, you know.... regular eye stuff. I can't see that anymore when I look at those eyes, because all my love for Joel blocks it out and I have learned to see how Joel is thinking and feeling with those very same jiggly eyes that would puzzle a stranger. I understand them now. They no longer mean "blindness", now they mean "Joel."

But that is not to say that I have "accepted" Joel's blindness. Or any other thing happening in his body. Acceptance sounds so.... so.... I don't know. So acquiecent, so aggreeable somehow. NEVER!! I can never, ever see that what has happened to Joel is not something terrible and wrong. Wrong, wrong, wrong! Not as in morally wrong. Wrong as in "It was NEVER meant to be this way!"

That might shock those of you who know how I feel about God and His plan. Yup. Look, this stuff isn't always logical. Well, I think there is a sort of logic to it, but it is not a clean, clear cut logic. It is not a 3+2=5 type of logic. It is more of a very long algebriac equation. You have to solve a lot of variables before you can make head or tail of it. That is grief.

But to get back to it all. Ever night the same thing happens in our house. I inform Caeden that it is bedtime. He informs me very sternly and with great emphasis that he is NOT going to bed. He doesn't WANT to go to bed. He won't do it. And every night the same thing happens. Caeden is put in his bed and the lights are out, and he sleeps. And he and I understand one another perfectly. He can not "accept" going to bed. And I will never be angry at him for that. It is only natural. It is the way of Caeden, and I understand him. He understands me too, when he voices this nightly protest. I will put him to bed. And in the end, he will sleep. And there are absolutely no hard feelings between us. In fact, we end the day with a big hug and kiss.

So it is with God and I, but the roles are, of course, reversed. I will feel and voice my protests. God understands me perfectly and He is never angry with me about these feelings and protests. In the end, things will happen as they must, and there will be absolutely no hard feelings on either end.

It is not that I think God caused this. I do know He could heal Joel, but I knew from the beginning that He wasn't going to, at least not right now. It is a very good analogy, I think, when the Bible compares God to a parent. Not the sort of parent who will make sure that every single thing in life is given to the child and ever single pain or inconvience is spared, I am afraid. No, really, I am thankful. It seems to me that God is a very good sort of parent. The kind of parent who cares that His children grow up strong. Who knows that true happiness is not learnt from getting all we want, but from learning how to be happy even in and through all the difficulties and pain. Those are the sort of children to be proud of. Healthy and vibrant, instead of twisted and sickly.

And also the kind of God who takes great joy in transformations. Those medieval alchemists were always trying to find a way to change the everyday into pure gold. God is the real alchemist, because He will transform the most horrible things for you into something truly beautiful. But I don't think what happens in our world is ever the "A" plan. Yes, we have screwed up the world ourselves.

We are seeing plan "B." And because God made up plan "B" too, He is waiting to tranform the horrid into the lovely. I wish greatly that all that was horrible, and terrible, were not here in this world. But I am grateful that God is here, with us through it all. And one day, Taaadaaa! Beautiful.

So there is a part of that twisted up algebra I was talking about. And that is why I think I will never "accept" what has happened to Joel. It is wrong, it is NOT how it was meant to be with our children. And why I know that God understands my feelings and protests. And why I don't think my feelings and protest will change anything. And why I will do my best to let God transform this horrible thing into something good. I trust Him. He is a good parent.

Falling in love

Ok, here is part two. If you didn't read the one before this, I'm starting in the middle of a thought here, so you might want to go back and read it.

What happened to wash out that dark corner of my mind, that insidious voice that suggested that Joel's illness was some sort of punishment?

This is going to sound strange, I know, but it is the only way I can explain it. I have always loved Joel. You wouldn't spend night after night for the first 4 months of your child's life with only one hour of sleep in your bed before you had to get up and spend the rest of the night propped up on the couch. Every half hour to 45 mins you give comfort to the little one resting on your chest... Ok, that is love, yes, I always loved Joel. But strangely, as time has gone on, I have "fallen in love" with him. Which sounds bizarre I know, but I don't know how else to explain it!

There is so much to grieve in what has happened. I have lost so much, and I hurt on behalf of Joel too. Especially in the times where he is unhappy. And also for our family as a whole But there is a very real amount of grief which is for myself alone, for what I have lost.

If you have been blessed with only healthy children, you have no idea how painful it is to be out with your little one who is so different from regular children and see happy families with the two healthy children you had thought you were getting. I can't even begin to list all the things that are lost to us, so I'm not going to bother.

The only way I know to describe that feeling is that it is very like the feeling you get when you see your first love who has "dumped you" arrive at the party with a new love for the first time. The pain and longing that shoot through you as you see the one you wanted so very much and is now out of reach and in the hands of another. That is the way the pain and longing shoot through me when I see those families. And how that longing can linger...

Or the pain I felt when out in public as well meaning people asked Joel's age... I couldn't even meet their eyes. I honestly don't know what expression, if any, was on their face when Joel's eyes started jumping around, obviously not working right. Or that he was so old and yet so small, or not sitting up. I was so afraid of what that expression would be, of how it might cut through me. I really just couldn't look at their faces, an act of cowardice that suprised me as I have usually looked such realities head on.

Well, let's come out of that dark place in my heart. Because things have changed for me somehow... Because as time as gone on, I have fallen in love with my little boy. I really wish still that he could experience all the things he must miss out on. Of course, I long to have him happy and well for the rest of his life, and I know how ever long he has here, it won't be long enough for me...

But I love the way his beautiful eyes "bounce" around. The way they roll back when he is thinking about something, or listening intently. I love the sweet and expressive burbling he makes. His little hands and feet are the sweetest things I have held, rivaled only by holding Steve's hand in a tender moment.

His evident joy when I pick him up. The way he will try over and over and over to say "ma" for me. He is such a patient little man. Yes, I loved those things before too, but?? How can I explain it? I have fallen in love with my little boy!

And so, I can never, ever feel that his illness is a punishment, cause it is part of him, and I love him just the way he is. I have a feeling of awe and privilege when I hold him at times. Sometimes I am overwhelmed when I look at him. I say "You are mine. You are mine, and no one elses." No one else gets the privilege of taking care of him, sick or well. No one else gets the privilege of holding that special place to be his "mummy."

Would I heal him if I could?? Of course, in a flash! Because I want him to be well and be able to grow and experience. But for myself, all that I have lost no longer seems like such a big deal. I am so proud of my little boy. And he is so very beautiful.

Yes, I really feel it. God has blessed me with my little boy. He is a gift.

Privilege

My Christmas was so wonderful, it seems a chore to come back here to this blog. Because this blog is so....serious. And sometimes it is about things I'd really just like to escape from. There are a few things kicking around my brain, and I think this time I am going to chose one that is... "happier", for lack of a better word. I'll save some of the other stuff for another time...

So, here I am getting all deep on you once again, and also, pretty personal. I have to be pretty vulnerable to get this stuff out. I hope you'll understand.

Every time I think I've got some sort of "plan" for my life, it seems to take a big turn. Sometimes that is for the better. Usually it involves some sort of sadness or loss. That is how it is, our "plans" are precious to us, and painful to lose.

When I married Steve and we decided to have children, I knew I was changing the direction of my life. Let me go back a bit to explain...

Before Steve and marriage and children, I knew what I was supposed to be doing with my life. I have always firmly believed that God put us on this earth to make it a better place, and we sure have our work cut out for us. I have always had what I can only term as a passion for working with children/teens, and for working with people caught in cycles of poverty and abuse, and for native people and sometimes I have been really lucky and all three of those things come together. Like when I was teaching up at Oxford House Native Reserve and I got to have a youth group and work with teens, alot of whom came from pretty messed up families.

Then my life took one of those turns. I thought that having children was a brief pause, after which, when the children were old enough for school, I could find another place to do what was my passion. There is no short, sadly, of children or teens with no one to give them the love and attention they need, or adults either, for that matter. I knew I'd be able to teach part time, or volunteer at a soup kitchen, or work with a youth group agian very soon.

Then I had Joel. And EVERYTHING changed. Now, I really can't see how I will ever be able to work in any of those places, even on a volunteer bases. I don't have much time or energy for that, and with the up and down nature of Joel's condition, I don't know if I could commit to anything anyway. I don't know what will happen when Joel is school age and gone during the day, but I do know my evenings won't ever be free in the same way... And Joel is just such a full time job. Maybe it will get easier, I don't know, but for right now, it is hard to believe it.

And the only way I see for this to change, is for Joel to die. (Sorry if that shocks you, but I'm not trying to protect your sensibilities, I'm just saying it the way it is.) That would be freedom bought at a most terrible price, one I am in no way ready to pay.

You must be wondering where all this is going... There is a point coming up. Let me give you a heads up on how it goes when something terrible happens, in case you have never been through it. (I'm sure that most of us have) You start thinking some really funny stuff, and I don't mean funny "ha ha". I mean more like bizarre, queer and sort of unhealthy in the way that the green stuff growing in the container at the back of your fridge is bizarre, queer, and sort of unhealthy...

One of those things you will think is that you have "done something" to cause this thing to happen. It doesn't matter how many doctors, nurses, counselors or loved ones tell you this is not true. It doesn't even matter if you know in your head this is a bunch of rubbish. You will find yourself going there despite your best efforts, and maybe you just should explore the idea in all its absurdity before you can banish it. I don't know what will work for you, but it is something I had to work through.

Was what happened to Joel a "punishment?" Did I screw up in some way? Most obviously, was I wrong to marry Steve and start a family? Did I forsake what I was "supposed" to do, and now it had been taken away for good, and I was left here in this terrible situation? Oh, the dark corners of your mind!!!

I am not really sure how to explain to you what happened as things went along... I can tell you that I have found other meaningful things to do, like be there for all the wonderful friends I have met online who are stuck in the same painful, terrible place I am: they have had a child with a PBD. This was a big comfort to me, to see that God still had a place for me to be myself and to be a comfort (hopefully) to other people. In fact, no punishment at all, but rather, a very big privilege.

And the other thing?? Well, this blog is becoming very long. So I will finish it up in a part two, and you can read the rest later!

Pedastal

Sometimes other people tell me what a great mom I am. Sometimes they really praise me, as if I were a nominee for Mother Of The Year. I sort of feel as if they think because I have a sick and slowly dying child with so many developmental delays, it sort of propells me into some sort of mom sainthood. Or maybe that I must have been a saint in the first place to have been chosen for this role.

In fact, a doctor once told me that it seemed to her that God placed children like Joel with the very best parents to love them and take care of them. It is sort of a nice thought, once you stop feeling ripped off that your reward for good parenting is a sick child! But if you look around, you will see the reality. Sometimes sick children are born to terrible parents. Sometimes amazing parents get healthy children (and good for them).

In any case, it seems that some people look at me (ok, it seems strange even to me so I'm sure if you really know me??!!!) with an almost sort of awe. Like I did some great thing having a sick child and loving him anyway. Don't be too shocked, but save that awe for someone who actually goes out and adopts children with special needs. I can assure you that I would have never willingly gone this route. This role was thrust upon me without my permission. And I really can't help loving Joel.

I know these people who praise me mean well. In fact, I'm pretty sure some of them, who know me better, know they are greatly exagerating my good qualities, but do it because they are trying to encourage me. And bless their hearts for that, because heaven knows I need all the encouragement I can get. I'm not saying I don't appreciate it. In fact, maybe some days if someone could stand by and applaude my getting out of bed, it would be good. :)

All the same, it sometimes makes me a bit uncomfortable. Cause no one knows better than I (except for God) how untrue all that is. It is nice to be praised, but when you really know how undeserved it is, you get a bit worried. When will they discover the award went to a shabby imposter, what will they do?

As all of us mothers know (and maybe the fathers too?) being a parent involves a certain amount of guilt. There are so many things to do wrong, and so many mistakes to make. Sometimes we are well meaning and it is an honest mistake. And sometimes we are just human which means we can be insensitive, selfish, lazy, stubborn, etc. even, or sometimes more, with those we love most.

When it come to Joel, the guilt list has a lot more potential. I feel guily because there are so many things I could, or even should, do for Joel. And sometimes I don't do then. Sometimes I am too tired and overwhelmed, but sometimes I really am just too selfish and lazy. I know you might have a hard time believing it, but let me assure you, 'tis so. I really am not "miracle" mom. I get resentful that things are so hard. Why should I have to be "miracle mom?" I don't feel like doing P/T that day. I take out the stress on Steve or Caeden. And I feel guilty that I don't "spare" more of myself for Caeden, give him more time and attention.

All these things become a heavy weight on me. I can carry these things around and feel pretty crummy about all my personal failings. Truly knowing myself, even I sometimes have a hard time liking me!

Fortunately, I know the best "weight loss program." Sometimes when it all just gets too much, the guilt and stress of trying to be a "perfect" mom to my little boy, the pressure I feel to seem together in front of medical people, the worry of what other people would feel about me if they really knew how much I fail my children.... It all gets too much. Then I take a deep breath and feel this incredible lightening of my load, and a great peace, as I speak a word to my God and feel Him there telling me that He loves me JUST THE WAY I AM.

I can't explain how wonderful it really is to know God is in my corner and rooting for me despite all my failings. I mean, He REALLY knows how bad I get and He still accepts me. Of course, my good friends have an inkling, though I try and keep my "bad behavior" to a minimum with them, lest I drive them away! Steve has the best idea of who I really am as he has been the brunt of many bad moods and selfishness. But even he doesn't know all of the "dark places" that lurk inside me.

If you are the sort of person who can be honest with yourself, you know what I mean. The truly dark places. We justify all sorts of behavior on the outside, but when we really look deep down, we can find a lot of crap there, hidden just out of view. Well, I can anyway. And I really don't want to "prove" this to you. I could drag out the pale, wriggling, disgusting creatures to the light of day to show you, but I will spare you that horrifying experience because I couldn't bear to see the look of revulsion on your face if you really knew what sort of betrayals, selfishness, dishonesty, etc. that I can really be capable of.

What I love about God, is that I don't have to worry about that. There was that terrible moment long ago where I had to face who I really was in front of God, face it, acknowledge it, and "set things straight" with Him. I still let Him know when I mess up, I'm sorry. But after a long, hard day of feeling my inadequacy, my failings, my insecurities about how I am performing, I get to God, and it is like sitting in a great, big comfy chair, or taking a long, hot shower. Thank God He loves me and accepts me, warts and all. And because He loves me that way, I can accept myself too, and feel worthwhile again.

That is the greatest gift a friend can give. Not that they think the world of you, but that they know how messed up and imperfect you are, and they still stick around. And for all my friends who love me in spite of myself, I say a great big thank you! Thank you!

Raw

So today we had a couple of appointments. Always very stressful for me. I would like to say, for the record, that I am very thankful for the good level of health care we do have, especially since we could never afford Joel's needs on our own. I'm saying that so that you know that when I share this, I'm not complaining about health care...

It's just that most appointments leave me, .. well... raw. It's the best word I have for it. Like someone took a great big steel wool scrubber and scrubbed me emotionally til I was good and red, the skin off and very vulnerable.

I start off having to mentally prep myself the day before and on the way there. What do I need to communicate to the doctor?? What approach works best if I need to be clear on a need or a point to make? What do I hope to achieve? I need to mentally "sharp."

What really makes these things so exhausting though is that they are such a reminder of Joel's illness. I guess that seems strange. Yeah, i do think about it almost all the time, and sometimes I feel like it has taken over my whole life, but there is something especially intrusive and "blunt" about going in for appointments to the neurologist, audiologist, eye doctor, metabolic specialist, hematologist, feeding clinic, orthopedic doctor, etc. A hammer blow sort of encounter with reality.

And of course, reality at home is much more "comfortable." I don't have to have my "game face" on at home. It doesn't matter if I shed a few tears. It is different out there in the world of medicine. No where else does Joel's illness hit home so much and no where else does it seems so important to still stay calm and "in control."

I mean, every time we go in to the clinics at Children's, not only is is clear acknowledgement that there are many, many things wrong for my boy, seizure disorders, liver problems, near blindness, and on and on, but also there is a terrible truth at the back of it all. One day, hopefully one day far in the future, but one day just the same, Joel will likely be entering these doors, but not coming out again.

But I gotta stay cool for my boy. I can't "fail" him by crying too much or getting too upset at any setbacks or problems. If we need something, I gotta pull it together so I seem reasonable. I don't want them to feel someone needs to put ME on medications. I am raw, raw to the point of redness, points of blood tears might be on the tips of my eyes, but I need them to know that yes, I am coping "well."

It is exhausting, and many a time I have come away tired to the bone and ready to climb in the car for a little cry. Especially any time anyone is the least bit thoughtless or difficult to work with. There have been a few nurses who had no idea why Joel was there who almost reduced me to a blubbering mess over some small slight or snub. It doesn't take much when you are raw like that. You are pretty sensitive. You can imagine how scary it is for a proud woman like me to fear that the nurse who berated me for leaving my stroller unattended will turn around to find me silently weeping!!! Not only sad, but utterly humilated too! Don't worry, I didn't break down there, but I had a few "sniffles" in the exam room which I got under control before the doctor saw me.

What I would like to say before I go, however, is how much little kindnesses help ease that sensitive raw pain. People who go with me for moral support are so wonderful. Also, as happened today, doctors or nurses who have time to be kind, caring, and friendly do so much.

My eye doctor is a terrific person. I was dreading the appointment, because I feared that again I might be asking the impossible (to "piggyback" two medical procedures on the same day and general anesthetic). Not only did he offer to do that if he could, he greeted us with such a warm smile and handshake. He assured me when I thanked him that he would do the same for anyone, but I am still so thankful that he didn't hear my request with a frown and a doubtful voice. He saw us out with a smile and a handshake too, and I know he meant it.

So today I went in dreading another appointment. But when I left I didn't feel humiliated or so raw and vulnerable. I felt, well, almost good, despite the fact that Joel has had an average of one appointment every week since September. I felt like a mom who had gotten the best for her boy, was working well with the medical profession, and able to handle things. What a nice Christmas gift for me, and of course, the person who gave has no clue! Tonight I will ask for a special blessing on this kind doctor.

It is so great when we are expecting the worst, and instead, we get the best!

Here I am with my first blog, and I'm already a year into my journey...

It was last year sometime in the middle of December that we officially recieved my son's diagnosis of Peroxisomal Biogenesis Disorder in the Zellweger Spectrum.

A big name for a nasty, complicated disease, so I suppose it fits. I mean, when you hear it you sort of know you are in for a lot of messy complicated explanations about what is going on in your son's body. You can shorten the name to a PBD, but there is nothing you can do to shorten the list of the terrible things that are happening in your child's body and can not be stopped.

I do remember the day we got out of the hospital and home after three very long weeks. It was December 19th, which is now almost a year ago. I can't believe that. I have lived a lifetime since then, of course, and yet I can still almost FEEL I am back in that hospital.

I can hear my mukluks swishing along the hallways as I escaped out of the room for lunch. I can feel how the chair I sat in, and slept on when it was pulled out at night, felt. The beeps of monitors. The handwashing of every person coming in the room. (Joel wasn't contagious, just flu precautions.) The sounds of the nurses opening the door and checking in. It just all comes back to me...

But I can't really remember what Joel looked like back then... My heart and mind are too full of how he looks now. I know he has grown so much. He is sporting a lot of fine, curly hair that tends to stick up all over.

In a sense, he is still very much my little baby, though. Not only is he not walking, or crawling, he isn't sitting either. In fact, he can't even hold his head up without some support.

Right now he is very happy though. He is very smiley. He burbles, and squeals, and tries to mimic my sounds. You might not think it is much, but it means all the world to me.

That is the funny thing when you lose so much. You find out how amazingly valuable everything really was, and everything you still have is a fragile moment. You make a daily meditation to be thankful it is still here to have. You have a somewhat absurd, but natural, feeling that if you are as thankful as you can possibly be, perhaps you can prolong the moment.

And I should take this moment to say something about God. I gotta, to be fair. He has always been a really important person in my life, but this year even more. So when I say that I am thankful, that is who I am most thankful to. Even with everything we have lost and will lose, I am grateful to God. All of that will make more sense, the more I write. It's really not something that can be explained in just a few lines.

I will just say that Christmas this year is very meaningful to us. Not just because we will never be able to take a holiday with Joel for granted. But also because nothing will penetrate the meaning of Christmas deep into your heart like realizing what is truly important. And nothing will make you realize what is truly important quite the same as facing the loss of someone you would give your own life to save.

I gotta go now. My little guy is calling me. I did warn you this might get a bit deep. I do promise from time to time I might even aspire to humour. Humour is life saving in a time like this! But you know that often it is much harder for me to laugh than to cry... That is how it is for us who have sick loved ones.