Learning?

Today I had to give a presentation on Family Centered Practice and sit on a panel for four hours and have people ask me questions.  It means that I talk a little about Frankie and what it was like to be the parent in that situation.  This was for Logan hospital and had a lot of nurses and therapists who are all very used to the medical model, where the professional 'knows best'.  In that model, the parent's job is just to bow and scrape and be grateful for the gems of therapy passed down to them.  That is an exaggeration but still parents have little control or power.

One of the things that I talk about is the things that I learned from Frankie:

 

—Even people who look like they are coping likely aren’t

—In a medical appointment, clients hear the first and sometimes the second piece of information

—If the first piece of information is hard, stressful or scary, you only hear that and nothing else

—A home programme that isn’t integrated to normal daily life is useless

No one knows what is happening at home except the people living it

That came straight off the slide but it always makes me a little sad that I can't tell the full story.  I can't tell in these high level medical presentations, that those things listed above, are only a part of the story and no the most important.  What I really learned from Frankie:

 

The value of time - I learned that each moment of Frankie's life was no more valuable than any moment of Levi's but because Frank's was shorter, it taught me to value each moment, regardless of if you have three years to be with them or a lifetime.  Frank wasn't more valuable than Levi and vice versa isn't true either.  They are seperately precious.  A child doesn't become more important than his brothers because he is dying but the time becomes a finite commodity. 

 

The value of patience - If there is anything you need with a very sick kid, it is patience.  You will need to explain the same things over and over and over again, but it isn't that interveiwers fault.  They too are doing their job.  Some better than others.

 

Don't bite the hand - Other than the quote from Madagascar (which makes me think of this all the time), I think this is an important lesson.  Even though you are tired and beyond stressed, if you yell, scream or otherwise bitch at the medical professionals that you need, even if they are saints, it will affect the alacrity they will respond when you need them.  The extension of that is also true, if you make them a part of your team, they will respond faster.  It is the Pavlov thing over again.

 

The value of stillness - I think that it is easier to be in the throes of having Frankie sick, than it was to be in the stillness after he had died.  I had been in a place where every second mattered and counted.  I had things that needed to be done all the time and the consequences of mistakes were huge.  Afterwards, I had to relearn how to be normal again.  I am not completely normal in that way.  I still watch sunsets more than most and look for pictures in the clouds.  I have learned that the calmness that follows the frenzy is at least as difficult emotionally but that calmness is important.

 

I wish that I could talk about how much I learned from Frank and how important he was to me.  If I did, I would cry and they wouldn't get what they were supposed to be getting out of it.  This was my last slide:

 

"As a parent I felt that trying to keep Frank from dying was like trying to hold sand in my hands in a hurricane.  No one ever gave me more sand.  Most health professionals increased the power of the hurricane.  Only with the people who trusted me and my ability to care for my son, did I feel like they were helping to protect us from the storm."

That is Family Centred Practice

 I was already in a bit of a fragile state when I went to pick Levi up from After School Care.  When he saw me, he burst into tears.  He had had a bad day as well.  Lots of things went wrong today.  His friends didn't play with him, he didn't get two answers on a test and the kid who was reading with him was not as nice as he could have been.  Pretty much he needed to cry for a half an hour beening held by someone who loved him.  Luckily that's what I needed too.  Things are back in flux and we are both craving certainty and clarity.  I hope it isn't too far off, for both our sakes.

Nine Years

Nine years is a really long time. It doesn't feel like nine years. It feels like ninety years that I have missed him. It does dull you know? That really searing pain of the first few years of missing him has damped a little. It turns into something different. It turns into something more like an ache. It isn't an easy ache and at times it is almost worse than the searing pain.  In a way though, it really does get a little easier.  I can't help but remember Frankie today.  I can't help but wish so many things.  I wish that even one of the things that I had wished for him at birth had come true, or more correctly, true for longer than a few months. 

When your baby is born.  You wish big things.  You wish that your baby will be happy and healthy.  You wish for a long fulfilling life for him.  You wish that they know little pain and only enough to make them better people.  You wish for so much for this beautiful life that has just been placed in your hands.  You believe that you can give much of that to them as well.  OK, I don't know what everyone wishes, but it was what I wished. 

  

In a way I got what I wished.  Frankie was happy, really happy for much of his life.  He had pain I know but he was happy through all of that.  He had people who loved him and he loved back with all of his huge heart.  He laughed and played enough for a lifetime.  Frankie had a very fulfilling life, albeit not a long one.  I can only continue to believe that.  He knew what he was here for.  He seemed too know anyway. 

 So maybe I got what I wished for but not the way I expected.  I will have photos to remind me.  I will still dream Frankie dreams at times and I will believe that you will be remembered, because I will remember you.  I will tell your brothers about you if they forget and I will tell Levi about you so he can have memories too.  But I will miss you and I will still cry myself to sleep tonight because much as I say that it is getting better, tonight it isn't better.  Tonight I long for you to be here.  Tonight I will regret every minute that I have not had you here.

Goodnight darling, wherever you are.  I still miss you.  I still love you and I will love you forever.

Happy Running Boys

It is hard on weeks like this, to not think about Frankie.  It is hard enough on a week that a client dies.  It is hard enough without that in this dread six weeks.  The six weeks between April 1st and May 16th I dread every year.  I am a bit off my game; not at work but when I can relax at home.  It is harder still when that client is so like Levi; in age, in what he plays with and in what he loves.  I am still really raw from this.  I do so much better when death is 'expected' or even 'a blessing'.  I can always say to myself that there is a release in those, even when the death is a child, or even my own beloved son.  This is harder for me to justify in my own skull. 

I dreamed about them both last night; not Frankie and Levi but Frankie and the little guy that died, lets call him John.  It is a strange thing for me to dream at all.  Normally I don't remember dreams and if I do, they are bad dreams, but this was perhaps a gift.  I dreamed about Frankie and John running toward me.  I remember them both smiling and laughing.  I remember that they were running; without weakness, without respiratory distress.  It was just two little laughing boys running.  It was lovely.  Perhaps it was a gift.  Perhaps it was a glimpse into heaven; a heaven without Pulmonary Hemosiderosis or Duchenne Muscular Dystrophy.  That is a heaven that I would strive for.  It reminds me to look at the world the way I looked at it after Frankie's death. 

When Frankie died I found the world almost unbearably beautiful.  I was lonely without him but was able to get real pleasure from things that most people forget to look at.  I found that sunsets were heartbreaking and I could watch the leaves moving in the wind for hours.  I could see beauty in everything, not just the standard things.  After Frank died, I felt that God was so much closer to me, but it wasn't because God was closer but because I had changed and I could feel how close he had always been.  I saw the beauty that had been around me all along.

My God is not the standard one, nor is my heaven.  I am sure of both of those things, but that is about all I am sure of.  I don't see heaven as a place where a ticket collector called Peter cashes in your Jesus card as you pass through, throwing out those without a ticket.  I would never understand that at all.  I can only believe that is not the case.  I can hope that Frankie and John are happily playing together, perhaps with Ethan under the watchful loving eyes of my father and brother.  I will think about that as I go to sleep tonight and maybe, just maybe, I'll look into heaven again tonight, even if it is just my mind leading me there.

Exploring

Levi had a friend over yesterday.  I love it when this friend comes over because they play so well together.  There is always plenty of clean up to do afterwards but it is worth it in time and the joy of listening to happy laughter.  On bad days of missing Frankie, I am better if I can hear his laughter.  It sounds so unreserved, so happy, so .... healthy!  Ty and Levi went exploring and it involved elaborate set up and preparation, followed by; well nothing really!  After they had set everything up and organized a plan, they ditched everything and went and played on the trampoline!

Levi found a rope and they tied it to the tree and across the yard.  They had backpacks that were full.  What they were full of was any one's guess.  They both had goggles on, Levi night vision goggles and Ty with safety glasses. 

The boys ran around the yard until they were completely exhausted.  It all happened again today, as I was at work and Levi went to Ty's for the day.  I have to work the next two days but then I have a week off over Easter. 

I have a love/hate relationship with Facebook but it veers more on the side of love on days like yesterday.  I posted that I missed Frankie on his birthday and sometimes you get stories that I hadn't heard before.  I makes my heart feel lighter knowing that there are people other than Frank's three parents who miss him.  This from a sweet girl who would have been barely preteen when he died:

Miss you and love you both so much!  Happy birthday Frankie, you're always in my thoughts and my prayers and I can't wait to play with you again some day in an awesome bunk bed fort castle like you loved so much.  And you still can protect me from the dragons with your shield and sword because, as you told me; "You're the girl, so you have to be the princess, but princesses can have swords too.  If you want to hold it for a minute, then give it back when I hear a dragon coming, then I need it"!  I'll always remember our playdates, my little knight.  I love you birthday boy and sending all my love to you Susie, the most amazing and strong mother I have ever known.  Xoxo

It is such a pleasure to read memories that I don't have. 

I think that William Blake summed it up, the feeling that you have giving birth;

To see a world in a grain of sand
And a heaven in a wild flower
Hold infinity in the palm of your hand
And eternity in an hour.

For me it is the idea that for but a moment, you hold the future in one hand.  That it changes both you and the child.  But the end of that poem should have warned me;

Every night and every morn
Some to misery are born
Every morn and every night
Some are born to sweet delight
Some are born to sweet delight
Some are born to endless night

Twelve

This little man would have been twelve today

I miss playing with your hand and feeling your hand on my arm.  I miss hearing you and watching you grow.

I don't miss you struggling to breathe and I don't miss your pain.  Today, I really miss you though.  I remember Evan stroking your hand as you slept and how much he loves you.  I remember Ross running with you and how much he loves you too.  I wish that Levi had those memories as well.  I wish Levi could talk to you in real life, not just in his dreams. 

Your eyes were always older than they should have been.  You always knew, didn't you. These photos were taken before you were 24 hours and yet there is that look in your eyes, that ageless adult look.  Ah darling, I miss you so much.

More Busy Days

The last few days have been really busy.  Levi has gone back to school happily and is now relaxed that he hasn't missed too much by missing the first week.  The creek is creeping downward but definitely creeping!  We are at about 0.35m, dropping only five centimetres since two days ago.  I think the ground is sodden and any rain is now runoff, swelling the creek.  Today was the first mostly dry, mostly sunny day for a very long time.  It was also my early day, the day to get Levi from school.  He was in a 'Go Slow' mode and wanted to walk among the graves and read them before getting in the car to go home.  He tidied a few up and picked up fallen vases and plastic flowers.  So these were his questions;

"Mum, Why are so many people called RIP?"

I tried not to laugh at that one, because he was being very serious and he hates it if you laugh at him when he is being serious, he gets very cranky.

He also asked;

"Where are we going to put our bones?"

Actually, I don't really know and I told him that.  I said that I thought that we wouldn't put our bones anywhere but that I thought that we would burn up the bones until there wasn't much left.  I asked what he wanted and he said;

"It doesn't really matter, because the bones aren't the bit that is really important," but he followed it up to remind me that he still wanted a place that he could go to that he could 'remember' Frankie. I had forgotten that I had promised him that and I should really make that promise come true at some point.  I do like the idea of having a spot that you are driven to remember someone, and time to do just that! 

Then I came home and because he was tired, he watched Scooby Doo and because it wasn't raining, I went outside and started the long task of yard work. 

Smiles

Today I got a crystal with Frankie's smiling face!  I had ordered it when an online store made them on special, because there is no way I could buy them full price.  I absolutely love it.  The 3D is amazing and if you look from the side, it looks as if you are looking at him from the side!  Now I have Frankie smiling at me during the day at work.

Painting?

I have bought a oil painting from photo that was on a new website that Mim found for us all.  It is a page that just collates all the Scoopons, Deal of the Day and all the other possible deals in your city that day.  I am afraid it only works for Australia but I'll bet there is an alternate one in USA.  The website is Buyii and it has everything that I have watched in the way of deals and more.  I particularly look for travel type deals and things like canvas photographs.  So anyway, I have been looking through some photos of Frankie and the boys to try to decide which one to use. 

It has made me look through the happy days and it has been a blessing for me to look at these photos.  It reminds me that he (and I) were very happy.  It reminds me that there was a time that he was just a kid running around with his brothers!  He has the chubby Prednisone cheeks in all of these photos but really only I see that.  I have been thinking about Frank a little in the last few days.  So has Levi, interestingly, but I would need to talk to another person to completely talk about that.  I love that Levi thinks about Frank.  I love that he seems to know who he is without the emotional backlash that would be possible for this situation. 

These photos are some of the finalists in the "Get to an Oil Painting" competition!  I wish it was much easier to choose!

Double

Today.

This beautiful little boy was exactly double



This beautiful boy's age.

And it is breaking my heart.

I am missing you Frankie.

Holidays, Finally

We are on holidays.  Actually more accurately, Levi is on holiday and I am having a few days off here and there.  There is a difference in the air though.  This morning, instead of having to get up early and get ready for soccer, we slept in and woke slowly.  I was looking after some friend's kids all day, so Levi had buddies all day.  They ran around and played.  They all sat down for a sausage sizzle lunch.  In Levi's expert and obviously well studied opinion, the difference between sausages for lunch and a 'sausage sizzle' is the bread.  Pretty much, if there is bread involved, then it is a sizzle. 

I painted shirts most of the day.  I am painting a medieval dragon on some gray shirts (chain mail) for the kids.  It is quite difficult because parts need to dry before you can start on the next bit.  I will post pictures of the finished results.  They have their Kid's day in about a week and a half time, but I don't have a lot of time between now and then to get those sorts of things done.  Namely things that I don't really need Levi helping me for.  So I have to have free time at home and Levi entertained at the same time!

Last night we both went to dinner.  It was a different group of people this time and although they both have kids Levi's age, these friends were not made directly through Levi's friendships.  Interestingly they asked about Frank and I found myself telling them more than I usually do.  Normally I just stop after a simple explanation but they kept asking questions; about Frankie, about USA, about my life before I arrived at Samford.  It made me realize that I should spend more time giving Frankie to people who care.  Give them more of Frankie.  Give them more of me!  I think there is little you could do to separate him from me now anyway. 

Sports Day and Vampires

Today was Sports Day and I was able to get lunch off to go and watch.  He was thrilled that I was there but it didn't help his competitive spirit at all.  He spent the whole time trying to kick off his shoes rather than trying to run fast, so you can imagine how well he did in the races!  Yep, About that well!!  At least he had fun!!  The kids all flowed in a chaos that was moderately organized and there were War Cries that were yelled and lots of happy kids all in beautiful sunshine.  Frankly none of the kids in Grade1 really paid attention to the winners and losers.  They ran relays until they were tired.  They passed batons, lost hats and yelled and screamed.  It was fun to watch them all.  It was also fun to watch the parents, who were happy to cheer for any child, not just their own.  All the kids would run down the track (not always their own) and smile happily at anyone cheering for them! 

Then I was supposed to go back to work.  Levi lost it and cried and begged me to take him home.  I decided that it was just too big to fight.  He is so tired and the kids will do very little in the afternoon after Sports Day!  I can work from home.  It is one of the biggest advantage of this job.  I told him that if he came home he would have to play outside because I would be on the computer.  He was OK with that and he happily did exactly that.  His energy level is so low that it is not worth fighting!  One more day!

Tonight Levi was talking about death again.  I am not sure why he goes there but I am happy to let him go most of the time.  It was a hard day for me to be talking about it, because a girl from work had asked me about Frankie on a drive in the morning.  I have learned not to cry when I talk about Frankie for the first time.  If you do it stops people asking about him and that is not fair, to him, to me or to Levi!

Anyway he said;

"Will you love me after you die?"

I said;

"I will be looking over you and loving you all the time, no matter whether I am alive or dead"

He said;

"You will be in heaven with all the people except the people who kill themselves.  They will all be down with the vampires!"

Then he and I had a big discussion about what I believed about Heaven and Hell.  I said that I thought that anyone who had such a hard life or hurt so badly that they needed to kill themselves would need some peace after they died, so I thought it wouldn't be fair to punish them again.  Levi agreed with me but he was stressed.  His little mate Owen obviously goes to a very rigid church and as he is the only one being given the words, the kids all believe him.  Levi wanted to know what to tell Owen.  I told him;

"My Mum and I don't believe that, but it is OK for you to believe that"

I don't know how to give Levi as much information as possible, without making him make my decision on religion.  I really want him to have the freedom to make his own decision but don't want his only information to come from other indoctrinated 6 year olds.  I might not know much, but I am pretty sure that none of the major religions have vampires involved!!

Lord of the Rings

Another quiet one for me.  I took another day off work.  I did OK yesterday but had a fever again last night and it has hurt to breathe all day.  I think it's just better for all of us (my work mates and I) to be free from my bugs for a day.  I spent the day in fluffy slippers and under a blanket.  Levi had a day at school and then went to Ty's in the afternoon.  I watched the Lord of the Rings from the beginning to the end.  I love these movies.  You can just watch them, enjoying the story and following the path they lay out for you, or you can look deeper into them and see the themes about religion or politics.  I love the lines that give you time to think and the parts that make you sad. 

There is one line in particular that I love that reminds me of Frankie.  Gandalf says it to Frodo;

"It's not what you do with the time you have, It's what you do with the time you 're given."

If there was anyone who lived that it was Frank.  He wasn't given much time, but he lived it well.  He did what was needed of him and showed us all how much happiness could be found on the very edge of despair.  LOTR was mid way through when Frank died and I went to see the 'Return of the King' at it's first showing with some friends.  In it Theoden says;

"My body is broken. You have to let me go. "

It was so hard to hear it.  It was true.  Frank's body was so broken.  I had to let him go, but I miss him so much.

"I go to my fathers, in whose mighty company I shall not now feel ashamed."

In my heart I think Frankie did go to his family, but not ever ashamed.  He had done his job and played his part.  I can only hope that I can say the same when it is my turn!

Getting there

I am starting to pick myself up again and walk taller again.  It has been a hard week but I think that it always will and it is more about gritting your teeth and living through the day again.  Every year.  It is about remembering and crying and grieving all over again, but without the recognition that I am allowed to still grieve.  It is about being strung out and not quite coping and in your heart knowing that it is just going to happen every year.  You know, I am actually kind of OK with it.  I am not good with it but I am OK.  To a certain extent it gives me a reason to remember and a little more time to think about Frankie and a little more time to love him.

The people at work are incredibly sweet about the whole thing.  So much is happening there at the moment and my problems are the least of them, yet still they all know and all remember to treat me gently that day and the ones around it.  I suspended my "Only two coffees a week" rule this week and I have found that to be a really good decision because walking down for coffee forces me to take a break and just chill.

Levi has been lovely this week although inexplicably he has begun to pee in a bucket outside.  I am struggling to think of a legitimate reason to say No.  He has decided that he wants to keep it for a week.  Why?  Oh who knows!  I made him put the bucket well away from the house and other than that I figure it will rain soon and he will forget.  I am sorely tempted to put food coloring into it changing it green or blue or something.  The only drawback to that would be that it would maintain interest in the experiment longer than if I just left it alone.  That and he might try to take it to Show and Tell!

That Day Again

Yes it is that day again and again I am confronted with the absolute realisation that I am truly not yet fixed.  It seems like yesterday and it feels like a hundred years ago that I last held Frankie in my arms, but as of today it has been nine years.  I am sorry.  I am tired tonight.  I am still heart sick.  I miss my little man.

Here is a part of my book.  I hope it will stand in for me tonight.

As Frankie crept closer and closer to death, time distorted. Emotions are strange and complex. Breathing doesn’t just stop as it does on the TV. There is no dramatic sudden change; breathing one minute and not the next. Breaths just get further and further apart. There is no dramatic heartbeat and sudden alarming straight line. Heartbeats just become erratic and if you are in any hospital worth its salt, there will be no monitor to tell you when his heart actually stops. Between each of those last breaths, over and over that whole day, part of you prays that this will be the last and at the same time you hold your own breath waiting for your child’s next breath. Time seems to expand and contract. Each breath seems to take an hour but when you remember to look at the clock, suddenly you have been there forever.

But there is a time when you realize that there will be no more, and in that moment, time stopped. It seemed the world stopped spinning and the noises of life were quiet. There was a moment of peace as I realized that Frankie’s job was done. That moment of utter relief, that all I had prayed for in the last few hours had come true; my little boy had stopped hurting. But it is just a moment. My world and my time stopped, held its breath and then imploded. Suddenly it was about me and I was lost. I had no idea how anyone survives that sort of pain. All there was left was the tenacious necessity of my body to breathe. With no thought behind it and my soul crying out for it just to be done, there it was: Breathe In. Breathe Out. Breathe In. Breathe Out. Over and over again, no matter how much it hurts and I won’t deceive you, it really hurts. It is a physical, mental, visceral pain that has no solution. But, as my little boy stopped his fight for breath, my struggle began. My brain compartmentalizes but this time all of the compartments had to focus on the same thing; one breath after another. Dr Sibley came forward and listened to his chest and said the words that I still hear echo in my dreams;

“There is no little heart beating in there anymore”

Mother's Day

This is the Mother's Day jewelry box and I love it.  Levi made the box and the bracelet and a lovely card that just added to the whole beauty. 

Mother's day continues to be a difficult day for me.  I am a little sorry about the coincidence that put Mother's Day as the last Sunday that I spent with Frankie and it certainly contained his last truly happy moment, when he laughed and loved and didn't think about pain.  The kids had bought disc shooters to give their mothers and the kids spent some time that day shooting each other and shooting us and shooting the nurses as they walked past the door.  The boys all laughed and laughed.  It didn't last long.  Frank didn't have the breath to laugh long and the pain was always there ready to jump him again.  But for a few minutes there, it was just three little boys happy and at peace, unaware that just around the corner their world and ours was going to change.

Ah sweetheart, you made me a mother by your birth, but you made me a different kind of mother with your death.  Both changed the very core of me.  Levi has made me a different mother too and he continues to change me every day.  I love you both so much and I am proud to be your mother.

Introducing Frankie to friends

So if you wondered if I was feeling any better today, the real answer is No but I think that it was a better year.  After thinking about it all, I decided that I wasn't really being fair to my friends here.  Yesterday was a late entry to work, because I had Levi's Parent Teacher interview.  It went really well and he is doing just fine, which is lucky because if the teacher had said anything bad at all I think I would have cried.  He is way ahead in Maths and about average in his reading.  She was giving me strategies to bring his reading to his Math level but I hastened to assure her that I wasn't going to push him in reading at all.  Average works for me.  I don't need him to be the best at everything!  He is in Grade 1 and his progress in reading in the last few months has been astounding.  I am good with that.  The last thing I want is for him to have nothing to learn at school.  I am not good with that!

Anyway I came in late and the office had already gone for coffee.  When I came in one by one they all asked if they could go back and get one for me.  They were all so sweet that I almost came undone.  They looked after me and were great all day.  I had to write a Powerpoint for some doctors in Townsville and it pretty much took me all day.  Good mind numbing stuff.

Then at night I went to Di and Bear's place and showed them the video of Frankie.  I showed them the album of his first year.  I talked about what he was like.  I introduced him to them, the only way left to me.  I talk about his strength before he got too ill, but it is interesting watching the videos.  It was very true.  He really was that verbal.  It is hard to believe how young he was when watching the video.  Later that night at home by myself, I watched the harder video.  The one that shows the deterioration.  It still breaks my heart to watch him so broken down, but still it helps.  It helps to remind me that death is a friend that you hold in reserve.  Death isn't the enemy.  The enemy is the disease that ground him down and Death, he was an ally and for stopping Frankie's pain, I will be forever grateful.  My pain....now that is another story!

Happy Birthday Frankie

Frank would have been 11 this year.  I can't believe it.  I can't believe it was that long ago.  I can't believe it still hurts so much.  I can't believe that I still miss you so much my sweet little boy.

10 months

 I am still in a bit of a funk but to a certain extent I am happy to let it run it's course for a few days.  I think contrary to my families ideas, that it doesn't hurt to just feel bad for a little while and then pull out of it.  I was looking at photos today, the good ones and the bad ones.  It is amazing sometimes at how similar the kids actually are.  In the early days of Levi's life, the similarity with Frank was overwhelming, but now as Levi becomes so much older than Frank ever was, the similarity dims, but it is still there at times, esp in a laugh or a giggle.

Here are photos of Frank and Levi at the same age.  They are about 10 months and you can see that they have the same smile.  They still do.  It is with humour that their closeness is so obvious.  I have found that these are the earliest photos that I have of Levi.  I didn't get access to the camera in those days much and didn't get the photos or negatives at that time in the divorce.  I am hoping that I can rectify that at some point .

I think that one of the hardest things about moving to Australia, was how completely I had to give up Frankie.  No one here has really known him at all.  In USA, there are stories that I still haven't heard of, from friend's memories of time with Frank.  I don't have to explain it.  I don't have to remind people or tell people why I am cranky this week.  I don't have to act happy when I'm not really.  Then I thought that some of the problem, was that I have never really given anyone the opportunity to know him.  I have not sat down with the DVDs and told those stories to my friends here.  I have not allowed myself the luxury of laughing and crying over his antics.  These short lapses into sadness are not a bad thing.  Maybe it will give some people an insight into me.  I am not fixed.  I know it.  I am not able to fix that part of me that misses him, but I think that I never want that. 

Changes

My body is begging for some sleep and there is a little part of my mind that just won't shut up long enough to allow it to happen.  I think that is is incredible how long this can last.  On Friday, Frankie would have been 11 years old.  It is amazing and terrible at the same time.  I can't believe how long ago that was and I can't believe how short.  I still miss him like it was yesterday.  I remember that day of his birth as if it was yesterday.  I think that the first time that a child is placed in your arms to be yours, a change happens, an inherent change in your system.

I thought that things would feel different but I didn't know how much.  I remember the nurses words when she handed him to me;

"Here is your son"

The words changed me.  They changed a deep part of me.  They healed something.

I remember other words too.  Words that changed me.  Words that reached in and ripped out my heart;

"There is no little heart beating in there anymore"

There were a lot of other words in between those two sets.  Happy words.  Sad words.  Laughter.  Tears.  Fear. I don't remember any of those words with the stark clarity of these ones.  Oh there are others that I remember quite well.  Having a good verbal memory is, I can assure you, more of a curse than a blessing.  There is just so much emotion associated with these words that the feeling is overwhelming.  Even now, even 11 years later.

But April 1st should be happy.  It should be the day that I rejoice in the start of three years with him.  It should be a day when I remember the first set of words and think less about the second set.  It is just impossible.  I try.  I really try to remember the happy things.  I try to remember how wonderful it was.  I try, but I fail.  I just miss him, every day, all the time

Wish Ribbons

The other activity that they had at GOMA was a wall of 'wish ribbons'.  The idea was that you read the ribbons and find one that speaks to you.  The ribbons are then worn around your wrist.  If you can't find your wish, then there was paper that you could write it on and stick in the wall.  There were wishes that made you laugh and wishes that tore at your heart.  Ty wanted a wish that said;

"I wish I had a tail to show my emotions"

Levi spent an inordinate amount of time looking.  This is made harder at the moment as he can only read some of the words on any ribbon.  Finally I asked him what he wanted and eventually wrote it on a paper for him to stick in the wall.  Levi's wish?

"I wish my brother didn't die"

I wonder sometimes how much Levi thinks about Frankie.  We don't talk about him a whole lot but that said, it isn't a taboo subject either.  He never met him and they are very different children.  The last time that we talked about him would have been several days before.  I hadn't mentioned him that day and yet up pops this wish.  It makes me think that perhaps that really is his greatest wish and that perhaps Frankie sits just below the surface for Levi as well as for me.  I think that he misses what he sees in his friends.  He misses having someone there to play with all the time and he misses the comradeship that he sees in Luke and Nate.  This is just me surmising.  I don't know what he wants from his wish but I do know one thing:

My greatest wish would be to grant my son's greatest wish