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"Enjoy the little things,

for one day you may look back

and realize they were the big things."

Hmmm...Just take a few minutes today, and ask your kids, or spouse to tell you their greatest memory. Anything...You will find that it was a little thing...that made a big difference in their lives!

Planning...that seems like such a stupid word right now. For the plan is already in motion. But the planning that is left for us to do right now was finding Quality of Death for a 5 year old child.

We went for coffee and if I rememer correctly just sat. Drank at least 2 coffee's before either of us said a word. Our whole lives were in totally chaos. Getting through the days were going to be very tough. We had to have something in place. Hubby cleared his throat...between the sips of coffee tears were just coming so we would wipe our eyes and sip again. He gently said well...what is next? I looked over and began. It is so important to find that Quality we all agreed too. Not even sure what that means, and especially now. I think we need to get some things in place. We need to make arrangments for his passing. I just need to get that out of my hair so I can continue. I cannot have that hanging over me each day. When Justin is strong enough to go home, then we will call the funeral home and make all the arrangements so one call is needed. Also I want Justin home...NOT in the hospital but at home. All of you have to realize what that all means. You will all have to agree with it, because once he is there...he will never ever go back to the hospital...not even to be pronounced. Hubby looked and said O.K. But I added NO we will have to have a family meeting, this is a family decision again. I know what I can handle...but there are 9 of us. Also I have NO intentions of more treatment...not even the palliative. No More...Justin said it...not crossing the line now. Hubby looked and said BUT Primary said when his levels rise we would be starting some chemo...you said O.K. to him. Well I had NO energy to start fighting then...but when his levels are up...we are taking him home. Hubby just looked...NO MORE I added. Could see the 'I do not agree here look' and the apprehension to say anything to me for fear of me blowing up. Right now that is exactly what I needed...Just listen to me...this is the way it is going to go. There are some choices, but this is NOT one. We chatted about our feelings for awhile then decided we better get back to Justin and #4 son.

As we walked through the halls...now they seemed longer than ever...darker than ever and quieter than ever. People were looking at us...I could see the fear in their faces...Oh No This could be me! I could see the tears, and the what can I say look. I saw the head nods with tears. I really could not deal with it all, so tried to the best of my ability to keep my eyes away from people. As we passed the Nursing Station, I heard the ward clerk Mary pipe up and say...your family amases me...I turned to her and didn't say anything...but had that question look in my eyes...They are all here. I looked at her and smiled, tears streaming down my face...and looked towards Justin's room to see tons of people. Yes...boys made what ever arrangements they needed...well lets just say the boys have their MOM's personality in some things, they had gone to their schools told them that their brothers life was a bit more imporatant than a darn exam if the school could not understand and needs to follow some rule that right now does not fit with our family and wanted Dr. reports before they left...then fail them all. Actually when the story was said...all the boys went from school to school to give that message. There were 5 sons, 3 extended family members living at the house and one girlfriend who had been part of Justin's life since the being, and she was very much apart f our family. She did not live with us, but in the same area. All leaving the same message with their schools. You know...I almost yelled yepiiii...I was so glad to see them, yet so proud that they did what they did. Some were in High School some in University and some in College. This was finals and could mean the whole semester lost. But in the back of my mind...When I got home...that would NOT happen. But the strength to do what they felt was right. My next thought was that there was another Dr's appointment tomorrow and again...when it really counts my numbers are higher...and they count. Wow what a great feeling...Together we were all going to make sure that Justin walks his finally path...HIS WAY! Not a Hospital Protocol...BUT HIS WAY!

We gathered in the room...many sitting on the floor and I told all what decissions were made and what had to be made. Our oldest son agreed that when they got back home, that #1 and #2 would deal with the funeral home... and make the arrangements, come to us with the plan and we would make the final changes if necessary and then they would get that all done. They did not want either Mom or Dad to do that...just the final stuff was all. All agreed right away that Justin was coming home. I then explained what to expect and that right NOW was NOT the time to say yes. That each had to be comfortable with death in the house...for we would continue to live there after Justin had passed. So that would be made in a few days. We discussed some treatment that oldest son and girlfriend had found through professors and contacts. Some man who does herbal stuff in the dessert somewhere in the States. We all listened then they wanted to talk to me. I agreed with them and added they had to get certain information and stuff for me first. They were so glad to beable to look for more. Other son's and Hubby said ...You're not thinking about this? I said...I have many to worry about right now. I hope that this doesn't come to past, but right now this is both their needs in coping with the fact their brother is dying. So YES...I want them to keep trying. They need to feel like they tried to find something as well. All just looked, said nothing, but again said, but Justin cannot go and stay in a dessert. Well we will see. END not discussing it further right now!

During all the talk about what is to come and what the plans were Justin was there. He added his two cents worth. At one point he said...coem on boys...I'm going home. We laughed as he had that way about getting his own way all the time, so I added Justin we have to wait and see.. K Mom but you know I'm going home right? I looked and smiled...he smiled back and that was that. We cried together and talked about the good times as well. Justin was well into the conversation, and it seemed as though the Morphine again could not cope with family and its LOVE.

The next day Dr's came in...not surprised this time when the room was packed. Came in asked if there was anyone who should be leaving...I said NO this IS Justin's family and they then said their stuff. Again boys asking their questions and sharing only what they want. I then talked to Primary outside of the room and I could hear Justin say to everyone..."Mom is the boss here and she is telling the Dr. about the dessert now...I know!" Funny thing was I was telling him, and explaining that I pray that it didn't come to pass as I really have NO energy, but the importance for the family members to feel they have added to the search. He looked and said...I hope you don't go there either, and added but I know what you are saying. K... then he wanted to talk to Hubby and I in private...I said brothers too, extended family will stay with Justin.

In to a room we went...I knew what was coming but everyone else needed to hear it themselves. I walked next to the Dr. and said to him...Please...be straight...tell them it is over...there is nothing else and the end in near. JUST be straight. He looked at me..I added No cushion stuff...they KNOW! But need to hear it. Not from me...but you!

The meeting was again longer...Primary started and was great...he told them all Justin is dying. We cannot put a date on it but in their opinion with in the next 2 weeks. His cancer is growing quickly and unfortunately a dabilitating type. Boys asked what that meant he explained that he would lose control on all body functions...They asked about PAIN...and he said your mom is right, we can take the edge off, but until the cancer presses on nerves that stop feelings than he will be in pain. Oldest son cut in saying...but MY Mom will have control on his pain once we get home right? It will be regulated by her...not the Dr's back home. Hmmmm raised eyebrows...Let me see what I can do. NO he added with others reapeating the request...My Mom will take care of Justin. When everyone was finished asking their questions, I added...I have not talked to anyone about this...BUT...can any of Justin's organs be used for transplants...Silence...complete silence...for a minute...it was long...then the Dr. cleared his throat and said unfortunately NO...they could not take the chance with cancer, and transplants. He then looked at me and said...you caught me totally off guard here...never thought I'd hear this...we usually have to ask. Tears were falling from my eyes, but I added been here for almost 2 years now...and have seen many children lose their lives because a match could not be found. We are going to lose our brother and son, so maybe thought we could save someone else's child! Figured so though...but thought I would ask. Then the Dr. cleared his throat again...looked around and I pipped in...Oh by the way...we do not want a code on Justin. If something happens...we want a Do Not Resuscitate Order on the chart now, and one for when we fly home for the plane. then will get it in our hometown. Again silence...I Dr. looked over at me...because this is what he was going to ask, but trying to find the right words. Everyone nodded but NO WORDS!

The Dr. left but we all stayed in the room together...everyone thought over what was said...and I caught a few of them checking their drivers license and checking off... incase...organ donation.

Hugs

Butterflymom

The boys could only stay that one full day and really needed to get back to school and stuff going on there. They all arrived when needed and now it was a waiting game for Justin's blood counts to come up. Boys left and Justin was telling them all to get things ready for him. He had decided that having his bed in the living room would be the greatest that way more people could have sleepovers next to him. He had great plans for his return home.

Wedenesday the Dr. came in early and said that Justin's levels were finally starting to rise so he felt with in a day or two we would be able to start chemo. I looked at him and said NO...Make the arrangements we are going home. He looked at me and said NO we are going to start Palliative Chemo first...I said NO. He looked again and said you knew this when we first spoke about it...Yes I said...why talk then when I knew what the answer was. Hubby just sat there and looked said nothing. I then added that going back North is NEVER like here. So I believed it would be best that we transfered to the hospital there first to make sure everything is in place for when we go home. Dr. agreed and said he would get right on it and should have things in place by Friday.

Was sitting in the room and then I could hear Justin yell out JUDY...You came...I looked up and there was my friend Judy. I had forgotten her daughter had an appointment and I also did not tell her what had happened. So in they came...she asked what was going on I went outside with her and told her...She was in shock...No...Not My Justin...Please NOT MY JUSTIN...If anyone was going to make it it was him. We went to the quiet room for awhile. I think at that time Hubby had explained to her husband what was happening and they went outside for a breather. Once Judy was feeling a bit better we went outside for coffee and a smoke where we found the two hubby's. Judy's Hubby asked if we could we go for lunch after, we agreed then went back upstairs. Justin had not been eating or drinking, but when Judy saw him she said Justin have your coffee yet...NO...Want some...He looked you could see he wanted to say no...but said O.K. Judy went to the floor kitchen and made his usual smiggen of coffee with full cup of warm milk. She came back sat next to Justin...I could see the pain in her eyes...as she looked at Her Justin...Her Buddy...Her friend! She would wipe her eyes every once in awhile but looked up and said if Hubby and I wanted to go for a smoke that she would sit with Justin...Her Hubby and Daughter had gone to register for their clinic. I knew that Judy needed her time with Justin...so off we went.

Now the word went around the hospital that Justin was going home. People came from all over. They wanted to say their goodbyes. Justin was fine with it...mind you when I would get upset...I could see him getting upset...so it was a very difficult time for me. Also there was one nurse that had stuck by me through all the ups and downs. Poor girl seemed to be there for all the downs, and never once...told me I was wrong. She encouraged and stood by each time. She wanted to take Justin home. I also had decided that I would drive back with Hubby have the boys meet Justin in at the Hospital and that way even the Nurse would have her turn with Justin. It is very difficult for the nurses...they are with these children all the way. They are the ones that do the treatment, they stand by both the child and family and they too have to say their goodbyes. We even had Nurses come in on their days off to see Justin.

Justin was given a new type camera, one that you take the picture and it comes out right away but like stickers. So he was taking pictures of everyone. At one point he even called to people in the hall and took their picture as well. The Pain was still there but more managemable. Justin and I would would practice flying when it really got bad. Besides as Justin said "He needed to practice so when his time comes he will be good at flying" These pratice fly's really seemed to help him witht he pain and so Justin did it a lot. I even got word from someone about a Chinese Lady that does treatment to allivaite pain. Had her in one evening and she tried her best to get rid of some of the pain. At the end...she didin't charge for her treatment and had come from across the City to get there by bus, then did a treatment on me...cried...and left! It was very hard on everyone. You look at this child eyes so bright and full of expectations...yet stuck in bed...in pain...knowing the child is dying. Yet...He is the one with the smile...he is the one taking each day and believe me sometimes it was each minute to the fullest. Very HARD! Very Hard!

Dr. came in on the Thursday and said all was set...we would be leaving on Friday morning. Justin would fly out with his nurse by 6:45 a.m. He would leave the Hopsital at this time, by the time they got on route it would be around 8 then arriving home airport by 9:15 arriving at the Hospital by 10. Had to call the boys to make sure they were waiting for Justin in his new room. Dr. said all was ready...He was back on the feeding tube so that is ready as well. We would be at the Hospital until we have Home Care services in place. Also I felt that the boys still needed to understand that once I brought Justin HOME...he WAS NOT ever going back to the hospital. NEVER!

That night was really hard...Dr's and nurses coming in to see Justin, cleaning staff, friends we met Staff and volunteers from the House...all coming to have their last time with Justin. Justin enjoying all the attention and taking Pictures galore. At one point our Primary Dr. and Primary Nurse came in to say good bye...I guess I realized at this time when we leave the two of us will never be coming back. It hit...I had to leave the room just got outside the door and Justin screamed out...everyone just stopped looked and I re-entered. They all asked are you sore? He said NO I just need my Mom...I leaned over HUGGED him he patted my head and told me it was O.K. The Dr. added I cannot believe the connection you too have...Justin looked up and said..."My Mom's is hurting, so she needs me!" Not a dry eye...I'm O.K. now Justin you know me...mommy needs to cry. He smiled and said BUT NOT too Much! We smiled and I said I was going for a cigarette. He smiled and was fine again. The Dr. walked out and said...YOU KNOW...You did everything right, with tears in his eyes he added it breaks my heart...but you and Justin have taught me a lot. Thank you and I am sorry. Tears were coming from both our eyes...I looked and thanked him...saying thank goodness he was our Dr. You allowed me to do what I had to do. You did what was best for Justin and above all else you LISTENED...

I went outside...Kathleen followed me and like it has been for the pass week knew I needed a coffee and had it a waiting. I went outside but this time NOT to the Pillar...People were waiting for us there and I just couldn't talk right now. This was it...we are going home to WHAT? We sat and cried...Again Kathleen standing beside me.

That night was Tails, and the nurses got it ready that Justin could go down to watch his favorite show in his bed. All the cast knew Justin was coming down and were waiting for him. I found this very hard...Last time for Tails too. Gosh...Last Last Last...Justin watched as if it was his first time. He always got right wrapped in to the show. He had his tail...always took the lepparded spotted one, so they had that ready when we arrived. He was placed off to the side with no one in front of him...and his eyes widdened as the show started. I could see the cast...people that had grown to love Justin as well...I think this was the hardest show they had ever done. You could see the sparkle in their eyes from the tears...more gestures to wipe the tears away...you heard the voice cracking...BUT...the show went on. Justin was the first to yell Yeppiii...when all was done. We had to wait for everyone to get out so we could wheel his bed back at this time the casts came over to talk. Justin was in heaven...His show...Tails...But all of us knowing his last performance!

BREATH...BREATH!

I wrote yesterday, but lost everything in cyber space. Was really upset, I wrote the whole piece in tears and anger. Today, I realize that Justin didn't want Anger to take over so I guess pooooffffft it. Today we will try again.

We left our last performace of Tails and headed back to our room. There were many people waiting to see Justin and bid him farewell. It was such a trying time, but one that was needed for everyone. Justin needed to see his friends and say his final words to them all. They too needed to see him. Having to stand back and share him was very difficult for me. I wanted the time just for me. Even with my family. I was the one who was with him all the way, why now do I have to share, when I know his time is limited. Well life just is, and share I had to do. Justin had made a BIG impack on everyone he met.

That night found many people slipping in to talk, giving Justin small little tokens to remember them by. Sharing their Love and compassion for a child. I spent a lot of this night in the hall. I knew that Justin knew I was crying but it was O.K. tonight I guess. At one point the Primary Dr, and Primary Nurse had come in to talk to Justin, and he cried out...MOM, MOM, MOM...I need you. I was standing outside the door and rushed in. The Primary Dr. asked if he was in pain, he relied "NO But my Mom is...she needs me!" Wow...so true so true. The Primary commented on how close Justin and I were and that when I walked in and Hugged him how he stopped right away stroked my head and said..."Don't cry too much K Mom?" I'm trying Justin but you know me. It's O.K. No it wasn't O.K. but I had to try and believe that it was right now.

I went back to the House to pick up our final stuff, Kathleen and Judy were going to clean the room for us and give the House Manager our key once all was done. I sat downstairs looking around and again feeling NOW WHAT? I was leaving my support and friends. The people that had seen me through this far. NOW WHAT?

Gathered that last of our stuff and headed back to the Hospital. Kathleen helped me again and we picked up a coffee on the way. We didn't say much, what can you actually say? Got back put the final stuff in the car, and went upstairs. Sat down next to Justin and waited for the morning to come.

Next morning saw many of the staff arriving early. They wanted their final bye. The ambulance drivers came in and then Justin started to cry. "Why mommy do I have to leave MY hospital? Why?" We want to go home. Yes but I'm going to the other hospital, just for a few days so Mommy can get all the things you need to go home. Oh...K...but there was that hesitation. Again I explained that I would be driving home with Dad so he wasn't alone and that Allison was going with Justin on the plane. I also told him not to worry because the boys are waiting for him right now at the new hospital. The final goodbyes were unbareable...knowing that the next time I see any of them with be in part. Knowing that the final journey was ahead, and again I was doing this myself. Each of our family members were on their own journey now, and we were alone.

The trip back home was very silent. Tears were just there and every once in awhile we would just wipe our eyes, but it seemed that there were so many that it really didn't matter if we did. When we arrived on the outskirts, a heaviness was felt. Oh brother here we go! We arrived at the hospital to see Justin in the room with his brothers and happy as all get out. Allison had just left so we missed her, but the boys thanked her for bringing their brother home. I looked around and already the boys were decorating Justin's room. Putting things up here and there. The nurses were already getting their pictures done by Justin and that going on the bulletin board for all to see.

One of the Nurses came over introduced herself and said we had forms to fill out. So we got right to it. Answered all the questions and got that out of the way. I explained that I did most of Justin care, so other than a few things here and there we were fine on our own. The nurses were great. Mind you it was very hard on them as well. They come in to see this 5 year old child sitting there with so much anticipation of life knowing that he is dying. One broke down and had to excuse herself. I walked out behind and she apologized over and over again. Told her it was O.K. Other nurses really tried to avoid us. Again bringing the fact that life is so brittle. You just never know.

The Dr. caring for Justin that weekend was the first Ped's Dr we had seen back in 1999. He came in and offered us anything we need to call him. We agreed but said we were fine. I also knew that our new Dr. would be in Monday. Mind you I didn't remeber him but he just finished his residency and remembered us for Sick Kids back in 1999. Saw so many Dr's that I would have to wait to see him before I could remember who he was. I was pretty well set in what I wanted to do, but still waited for the family to make up their minds. I knew asll I wanted was to get Justin home.

Of course coming from one hospital to another never finds things going the same way. Justin was on feedings as his appetite was NIL but when we arrived the feedings were not ready, we would have them in a few days. The Morphine was by I.V. now and had to wait until Monday for the pump. No use getting upset, I knew these things would happen like this. Mind you our Nurse that came from Sick Kids was not too happy and called tha Dr. as soon as she got back to tell him. Primary called me at the Hospital and said Things O.K. there? As good as could be. Is Justin on Feedings NO not even the same stuff as he was getting back there. So I'm going to cancel it. No point putting his body through more changes. Just have to get him to eat that is all. Also the Pump? No I.V. but Pump coming on Monday. I thought they had all this...they told me they did. I guess now you know what the Parents mean...It is never done the way we are told. he addd that if we needed to come back to Toronto for any reason that we could. I tahnked him but sais...NO we want to get home. That is it.

Not that it is wrong, but when you think you are coming home with things in place, and everything is so different it adds stress. Primary asked if I'm O.K. I tell him not really but will get through. Just want to get home that is all.

Next day saw more friends coming in to see Justin, he was thrilled witht he company and each time someone came in it was my excuse to go outside for awhile. That evening the boys were all there and we had a family meeting. Justin called it because he wanted to go home. He talked to everyone saying..."can I come home now?" The boys all agreed that yes lets get him home. I explained that once he came home, he was never coming back to the hospital. They all agreed. They boys then ordered pizza and Justin and his brothers enjoyed their supper.

The next afternoon found a Lady come in and introduce herself. One of the Volunteers from Toronto Ronald McDonald House had contacted her and asked if she had time to drop in to see us. She had lost her daughter to cancer and the same type as Justin She came in and Hubby really had a great talk to her. I think she put things into perspective for him and he talked and asked so many questions. She left leaving us her number and telling us to contact her anytime. It was so very much needed. Hubby to this day considers her his guardian angel at the time.

Monday finally came and we met the New Dr. To tell you the truth I never saw him before, but he said we had met and told me a few things about our first meeting that did happen, but I guess that was when I was brain dead. LOL He was very helpful and was listening that really helped. I told him we had all agreed that we just wanted to go home. He said he would have Home Care come in and talk to us. Also added that feedings would resume that night. I explained I didn't want them, besides Home Care will not do home feedings so I'll make sure he eats. He hesitated and I added that I had talked to Primary so that is the way we want it. I also told him Justin was swelling and I thought we needed a catheter. He checked and was going to make arrangements for a Specialist to come and see and make a decision. I reminded him we are not staying long, so hopefully he will be in soon.

The next morning saw HomeCare coming in. They came in to talk about what they offer and how it will work. We listened for awhile and then I said...well here is what I NEED to go home. The bed, the Morphine pump and supplies...that is it. First she says that we cannot go home because of feedings, I knew that so cancelled them, she said I cannot do that...well I told the Dr. No... so I guess I did. Oh she said looking to see that the feedings were not there so I was right. Not going home with feedings. Then she said they do not supply any bed let alone the airbed that Justin needs. I added Oh yes you do...maybe I should tell you I worked homecare so know that all that I am asking for is in place. Maybe a bit more work to get them but this is what I want, and this is what we will have. Really do not want to discuss anything else. She added that the dietrician was coming in to talk to me. I added I really do not need to talk to her. She said oh yes you do...I said fine but Justin will eat whatever he can get in. Diet is not top of my proiorty list so it really is a waste of time. She just looked. Then she added that the Home Care would be coming into the House each Day. I added very quickly OH NO THEY WILL NOT! We are going home to be a family as much as we can. They can come once a month to flush. That is it, just like before. She looked up and said NO Mrs.V you are too close to the situation to handle Justin's care. I was mad now...Well sorry you feel that way, but if I need HELP I will ask. So right now it is once a month that is it. What about the Morphine cassettes...well that is easy I will change them myself. No we do that...well not this time I will. Hubby was getting a bit un-nerved and said...well lets just get home then we can figure the rest out. I felt it was time for me to leave. I was taking care of MY SON not someone else. That was it!

Next morning found Justin heading for a catheter insertion. It was agreed that we would have to go through his tummy. Justin was excited...believe it or not he was looking forward to watching the Dr's do this. The Dr. came back with Justin which is very unusual and said he was GREAT. I had to explain everything and he asked enough questions that I think he could be my assistant. Justin added "Well just call me, I could help you next time!" We all laughed. Justin then proceeded to tell each of us what happened. How the freezing needle stung but really didn't hurt. How they cut his tummy and put the tube in. He was questionable about how pee was coming out this tube, but that is just what it does. He was totally amased. And so were we that he explained each detail.

The following day found the Home Care coming in with more what we can and what we cannot do. I just said hey...I'm going home on Thursday so just have what we need O.K. Hubby spent time with her and I went for a smoke. When I returned Hubby said it looks like we are getting what you need to take Justin home. GOOD now hopefully the bed guy will get that ready in time. Hubby added that Home Care is just waiting for the call from him. Good looks like 1 more sleeps and we were home.

That evening a nurse came in and said the guy for the bed was on the phone. Wondered if I had any information on it. Told her sure did and that I would go and talk to him. No tell me and I will tell him, by this time I'm on my way to the phone. Hello yes...you wanted information on the bed for Justin V? Yes...well it needs to be delivered tomorrow by 10 and bill Home Care Yes...that is it. Here is the address and thank you very much bye. The nurses just stood there. Is that what was arranged? Not sure, but that is what is now. If we waited for the Home Care to talk tomorrow that would put us off till Friday to go home. We are going tomorrow and now things are in place. So it is done. They just looked, one had a smile but the others were in shock I think is a good word for it.

Next morning saw us all packed and ready to go. The Homecare came in and said that she had NOT talked to the bed guy so we would NOT beable to leave yet. Told her no problem I talked to him and actually the bed is being put up as we speak. Also she said well the Ambulance had not been advised as of yet...No problem we are driving Justin home. So we leave at 1. Well we need to talk about visits, well call me next week We can arrange that then. She then asked where is your hubby? Well he is getting things ready for us to go home. If you want to talk to him come back at 1 but we will not be here long, so I guess call him next week. She just looked. Justin was all excited and watching the clock hands to get to where they had to be.

Dad showed up about 12:15 and Justin was hooting and hollering I'm going home...I'M goin home. We packed the final stuff, and got ready. We had to take the bed downstairs to get Justin into the car. He knew it was going to hurt, but he said...Just Do it...Do it fast O.K. Just what we did. The Nurses on the floor all wished us good luck they hugged Justin and said that if he wanted to visit again he could. He said No thank you...my hospital is in Toronto.

We finally got him ready and off we went. Nurses waving and Justin even though in pain now waving back with a HUGE smile. Justin was going HOME!

We arrived at our home to family and friends, waiting outside. No coats and even 2 of the boys in their socks. Hey Buddy you are HOME! Justin was so excited. Even the carrying him into the house didn't seem to cause any pain. In we went to his new bed in the living room, and the boys had everything set up. He even had his video stuff set up so he could play anytime he wanted to. One of Hubby's friends from work had collected tons and I mean tons of games for Justin so he had hours ahead to play with his family and any friends that came in.

We got Justin settled and I made coffee. Just sat back so relieved that I was home. My Friend had come over and HOUSE was sparkling clean and even supper was a cooking in the stove. Home...just where we needed to be.

It wasn't too long before the phone rang and it was Home Care. They wanted to set up an appointment tomorrow for us to fill in forms. Gosh these forms are enough to drive people to drink. The same questions over and over again...thought of buying a tape recorder and just say everything once and hand it to people when they came. It would have been much easier. On me anyway.

Agreed to the appointment and with the weekend coming new that we would not be bothered by anyone then. Justin was so glad to be home. He was making arrangements on who was going to sleep with him that night. He made the boys get a mattress which fit right under his hospital bed for night time. Justin loved the sorty the Grinch that stole Christmas and ever since he received that video has watched each day sometime 2 and 3 times. I guess in his way it was replacing Tails. House manager had given it to Justin for the last Christmas. He was thrilled with it and so everyone was prepared to watch it over and over again.

The weekend was great...Friday with Home Care saw me answer all the questions once again and again telling them that once a month was enough. When we needed more then so be it. The nurse said they would have to come and supervise me changing the cassettes on the Morphine Pump, I said well it needs to be changed at 11 tonight so if they wanted to come then fine. No she thought we would change it now and then it would be done. I said no as we are responsible for the Morphine count. Oh it will be O.K. she will sign it as discarded. I said NO we are going to stick to schedule so if you cannot come tonight then sorry. Again that look ...hmmm...not be co-operative. Oh well makes no sense to discard 1/2 day of Morphine because of convience. I also had been changing on the floor as I had already said this was not a usual practice on the floor so with me changing it they didn't have to call another nurse from another floor to come and do it. So if they wanted verification then call the hospital. I guess I was tired and fed up...Could do all this stuff Was doing all this stuff, so why now all the questions. We left it as that...quite sure they wrote a lovely note about Justin's Mom but I really didn't care.

Rest of the weekend was great. Justin and I would have our time together, and the boys shared his time as well. Dad even got to sit and hold Justin for a few hours each day. He was getting much weaker and thin, but he never lost his smile.

Our house activities started to evolve around the living room. Justin always being the center of activity. He always had someone next to him, and each hockey game he played even with visitor knew if he lost the game then he would call out "MOM they are cheating again!" That was one game that Justin refused to lose in...HOCKEY!

Justin recieved calls from Kris King regularly...he would call I would give the phone to Justin and if he really had nothing to say he would say Hi Kris King and hang up. Poor Kris just got use to Justin's way. One evening when he called Justin was watching the M'Leafs on T.V. He said to Kris..."Good thing you quit...they is losing. "Kris laughed and said but maybe they will win..."NO Kris..they is going to lose!" totally disgused. Silken would call and talk to Justin and he recieved calls and emails from his buddy "The Rat". The Rat was a firemen from Toronto that Justin met. They hit it off and He would even come to the hospital to see Justin. Each day Justin would want me to carry him to the computer...he would send secret messages to his buddy. He could spell his name but the rest was in code. LOL Each day "The Rat" would write him back and Justin would tell everyone what it said. Sometimes it was a whole story on a fire in Toronto or a trip that he and the Rat took or whatever he decided to say. The pricless thing was each time he told the story that day it was always the same.

Justin's Story then ended up on a Butterfly Farm web site from Aruba and he started to receive e-mails each day. He was so thrilled to be getting the e-mails. I would print them off and he would tell his family and any friends that visited what each one said. He recieved poems written for him. Pictures of Butterflies from all over. He became the ButterflyMan. Poeple shared their stories and wished Justin all the best. I too ended up with e-mails from people sending their love and thoughts and prayers. Total srtangers reaching out and helping. It was amasing.

Well we surpassed the time frame the Dr's had given us from Sick Kids and each week the Dr. would call to see how Justin was doing. Justin always had to talk and informed Him about everything that was going on. He told the Dr. that MOM does everything for him and that when the Nurses come in they just talk. He even told the Dr. that one day I had called and cancelled the visit because and he began to whisper..."She said I was too sick...he sarted to laugh and added it was a lie!" I heard him and really wanted to say hey...don't say that...but it was true. When I talked to the Dr. he was laughing...doesn't surprise me that you are cancelling but to say he is too sick and you get NO flack from that is amasing. Hey what ever works. One day when he was talking to the Dr. he told him about the catheter. He said "can you believe that I'm suppose to pee out of a tube crazy eh? But I'm not going to do it anymore." When I talked to the Dr. he asked me about that and I told him that, that morning Justin decided that you are not suppose to pee through a tube and since that time has used the urinal. He said it was impossible then added wait No it is Justin. I told him I had to flush the tube now to keep it opened but it really wasn't doing anything. To have it removed meant a trip to the hospital and we were not going to do that. But if it did block I would take it out myself.

Each week Justin also called the 8th floor of Sick Kids to talk to the Ward clerk. He also talked to the other nurses on the floor at the time. They looked forward to his calls and Justin in turn was letting everyone know how he was feeling. Every time the phone rang...he would say..."Oh no for me..I'm busy...or K give me the phone." He actually would get upset if he had the phone next to him and it was for someone else. He would say "well don't you want to talk to me?"

Life continued for us all. Knowing that Justin was gettin weaker...but also knowing that in his time...No one elses but his time...he would fly.

FLY...yes we had many talks Justin and I about dying. He asked many questions. He knew many children that had died but now wanted to know what was going to happen to him. This is when I would really have to fight back the tears. How do you explain to a child that he is dying. That he will be going himself and that his family and friends could not fly with him? How do you tell a 5 year old that even though he is gone from here. That he was in our hearts forevermore. Well answer the questions I did. When ever Justin needed to talk we did. It always seemed to happen in the morning when everyone was gone to work or school and it was just the two of us. He would say..."Mom come and sleep with me...we have to talk!" And talk we did...what ever he asked I answered to the best of my ability. When he asked if I could see him when he leaves...I said no but I could feel him in my heart. When he asked if he would be alone...I said NO he will have friends and family that he didn't even meet yet because they flew before him. He asked if one day I would fly to him and I said OH for sure. He even would check out some of the things we talked about. One day he asked his Dad to pick him up and bring him to the wondow so he could see the birds. I had told him that day that it is like the birds when he fly's he will always have someone with him. He wanted to check out to see if the birds were together or if they were by themsleves. I knew what he was doing, and I could see the smile on his face when he saw so many birds at the feeder. He then turned to me and said...you going keep feeding my friends right? For sure I will.

One evening Justin siad MOM I want to sleep in your bed. Dad you can sleep in my bed in the living room but me and MOM have to sleep together. Justin's cancer had spread enough now that the pain wasn't constant but when you moved him he was in pain. So moving him was only at his request. I did however give him a bath each day and once in the tub he felt good, but getting there was really tough. Sometimes the anticipation of the pain had both of us in tears, but he felt so much better after a bath. It certainly wasn't an easy task as he had tubes everywhere.

That night that we slept together in Mom's bed as Justin would say, Justin talked about a trip that we were going to take. Both him and I got on our horses and rode to the Ronald McDonald House. I had to stay with the horses while he went to see the people he wanted to see. We even stopped by some of the golf tournaments that we had fundraised with and he saw and talked to people there as well. I just went for the ride. He talked and I closed my eyes and it felt like we were really on that trip. Justin telling me where to turn and when to get off the horse and hold on to his pony while he talked to whoever he wanted to. I knew in my heart he was saying his last good byes and that our time was coming close. It was also coming close to oldest son's birthday and even though we were planning his birthday celebration I could sense that Justin was just not part of it like he usually was. I started to fear that Justin was going to chose to FLY on that day. I watched and listened to his comments about things. His stories about flying and that he was getting ready. We continued our talks, and finally one day I could really see that he was getting really weak and I said..."Justin you cannot FLY on Jeremy's Birthday!" Why he asked..."Because when you fly we will be all very sad. This is Jeremy's Happy Day so he has to keep it just for him! Oh...he looked and said nothing. I shared my fear with my friends and hubby feeling like this is the day he is picking. The next day when alone again...Justin said..."MOM...I'm not going to fly now K!"I said I was glad to hear that and he added besides Jeremy needs his Happy Day and it is too cold right now to FLY! The tears came but I must add it was also tears of joy...as I knew that Justin would not FLY on our oldest son's birthday

Febrary 23rd came and went without a hitch. Most of the decorations were in the living room where Justin had his bed. He gave directions to everyone where things had to be. He sang the loudest and YES...made sure his oldest brother had his day. Although their were tears...thinking about how much time was left for our whole family, but thinking back, it was a GREAT day.

Our lives continued and many people came to visit with Justin. He seemed to attract many people and since he loved Business Cards, we had bristle board upon bristle boards full of cards. He would spend some of his time checking them all out and showing everyone his favorites. While Justin helped at the HOUSE he had a blank Business Card as well where we added his name. He was so proud of his card and of course this was his favorite. Always put in the middle of each display.

Justin would let us know who was going to sleep with him that night. We always had extended family with us so they too had their turns. The nights comprise of watching "The Grinch Who Stole Christmas about 4 times, and playing hockey or just talking. Each of his brothers had serveral nights with Justin and got into some pretty heavy talks. He would talk to them about leaving alone. How they would have to help MOM because she will be very sad. He would tell them when he really hurts he flies just to see how it is, and when he does he can see everyone and whoever he wants too. When he looks down everyone is O.K. except for MOM she is always crying. He would say to them you have to help her...because she is going to be very SAD!

One evening it was my turn again. We went to bed, me on the mattress on the floor next to Justin. He asked if he could sleep with me on the mattress, I said sure and got things ready for our sleep out. Justin knew moving him was going to hurt but would tell me just to go fast then he would be O.K. Once down on the ground he curled up with me and fell fast asleep. I was surprised because NO movie. I lie beside him with tears...knowing that his time was very limited. Looking and realizing soon my youngest son will be leaving...on his own...without his MOM. Gosh the feelings and emotions so fresh, so real so painful. Looking down at my child who should have many more years ahead, but knowing in my heart only days.

Justin woke up around 3 in the morning and was so excited to tell me that he had a great dream. I asked him to tell me about it. He proceeded by saying that there was a Crystal Palace with many people, animals, birds and tons of Butterflies. He said the people were getting his party ready for when he flew. He told me they kept calling to him but he told them that it was NOT time yet. He also told me that there was a BIG rink, and people still had to clean more though. He told me he kept telling them that he wasn't ready yet but he would be coming to his party soon. I asked him why he was not ready, and he leaned into me and said..."They have NO pop at his party!" Though the tears, I had to laugh...Justin needed his party just RIGHT! Now that he was up he wanted to watch the Grinch so put the movie on and watched my son.

Next morning as soon as Dad got up we sent him off to buy some Pop to put under Justin's bed. We were making sure that Justin had all he needed to take when it was time to fly.

That weekend Silken was coming in to spend time with Justin. He was so excited and was waiting for his Friend to arrive. Of course when she arrived, Justin kept hiding his face. He had done this before and I had asked why he was hiding from certain people. His Buddy 'Pellow' would come to see him often and Justin started to hide his face. When I asked why...he said "Well Mom when I hide I do not see them so I do not have to say goodbye!" Deep breath...yes Justin I guess you are right. So when this was happening as soon as Silken arrived I explained to her what was going on. Didn't take too long though before Justin and Silken were just into the swing of things. ASilken had brought to Justin 3 birds. One was him, one was his family, and one was his friends. Together we would all get by. Justin really took everything in and then wanted to get out of bed to see outside. I knew he was checking again to make sure that birds were together and NOT alone. Of course with our feeder we had tons of birds and Justin smiled as again he saw birds are never alone.

Justin and Silken had a great weekend and Silken had the mattress next to Justin for the whole weekend. She too watched the Grinch that Stole Christmas over and over again. When it was time to say goodbye...Justin had huge tears. He hugged her, told her he loved her, and that he would be in her heart forever. I had to go outside. Poor Silken had to find a quiet place to pull herself together before heading to the airport.

Final goodbyes...

Hugs Butterflymom

When I look back this was to be Justin's last week here on earth. Final good byes everyday. The representatives from Local Service clubs coming to visit and bring more Business Cards. The boys friends coming to see Justin and play a game of hockey. Final calls from the Hospital For Sick Kids. Mary the ward clerk talking to Justin for the last time. Nurses talking to him and asking how he was doing. Justin letting them all know he was enjoying life to the fullest. Dr. M our primary calling to see how things were and Justin telling him that he was going to fly soon. Heard the crack in his voice as he said..."WELL Justin you always knew what was best!" The hiding of his face...but finally looking up and saying goodbye. Not saying bye and see you again soon. But just plain Goodbye. I saw and felt these things ever so strong. And knew that his time was numbered.

Talking one day I asked Justin if he would let me know just before he flew. He told me yes...and soon Mom soon. Although the days were very emotional for me, I kept it as normal as I possibley could. Justin with his Morning HUG and Butterfly Kisses. His enthusiams of what e-mails he would receive today and cards or letters. He always had his smile.

The boys were all having a very rough time now. They could see their brother losing weight although he was still eating with them, and could see his fraile body struggling even to play hockey. BUT...the jest for life was still there. He still knew he didn't want to lose in a game of Hockey and if he won he would ask them Did you let me win? NO... was always the word that came out...so he was happy thinking he had really won the game.

Won the game...for sure he had...he had won the game of life. At a time when all was ending in sorts...this child taught his family the meaning of Life and Fight! He was a true champion...and held us all to his goals.

March 4th in the evening Justin said Mom you have to sleep with me tonight. Sure no problem. When all was still, he asked me to hold him in the chair. It was very painful now to move him, but again..."Just go fast!" Got settled in the chair and he looked deep into my soul. "Mom I have to fly today!" I looked at him and the tears just came. "It's O.K. to cry today Mom...Tears are Love and You Love me Lots!" Yes Justin that was for sure. I held him for 4 hours in my arms. Just looking and remembering all the times together. Remembering this vibrant young baby who came into our lives needing us. Who now has bloosomed into a young boy teaching his family the most important lesson in life...DEATH!

Justin finally asked to be put back into bed. Got him comfortable and waited till he fell asleep and went into the kitchen for a smoke and cried. Oh my what will life be ...with out my son!

Morning came and the boys were getting ready for their day. Dad was to go away for the day for work. They all asked how Justin was and I said Today is the day he will fly. They looked said nothing...then asked should we stay home? It is up to you. Even Dad asked the question which actually made me mad at the time. They all felt that we could not pick our time like this. Oh but yes we can...if given the chance...we certainly can!

Everyone finally decided to stay home. Even our extended family. The morning went slowly and Justin and I did what we had to do. At one point Justin said "Mom I have to fly today...but I need a bath! Could you bath me after I fly?" Sure will Justin.

Made a call to the VON visiting nurse to cancel her visit. I was NOT going have the port flushed today. Told them Justin was sick so we had to cancel. To call me back in a few days to reschedule.

It was about 2 when the mail came in. Justin you have mail...oh just read yours Mom I will read mine after. I opened the card I had got from Gramma Vivian a very Special Lady we had met in Toronto. I read the thinking of you card. Went about my business of the day, while Justin's brothers and extend brothers spent time with him. Finally at 3:30 Justin said Mom read my card now. BUT...just to you. Don't read it out loud. I was having a coffee and Jeremy Justin's oldest brother was now sitting with him. I opened the card. Started to read...and the tears just came pouring out. Just a few words. "Keep your chins up...Love Gram!" Wow... The rest of the family that was at the table was asking what was wrong. I looked up to them and said that "G-G" my maternal grandmother that had passed many years ago was here for Justin. You see my gram would say those words. Gramma Vivian never said that so I knew...the only person I would trust with my son was now here...to let me know that the time was right and she was here for my son. I looked at everyone and said...It is time. Hubby called the boys downstairs, and we went into the room. Jeremy was sitting there next to Justin. I looked at Justin and he smiled. He then looked at each and everyone there and smiled to them alone...then took a deep breath and flew...He flew so strong and straight with the hugest smile you could ever believe. He is party was waiting for him and he was flying there with Gram!

Tears and hugs, Mom, Dad, Jeremy, Spencer, Michael, Brent, Wade, Caleb, Chris and Graham...then the words..."MOM my Bath". Hubby helped me strip Justin run the water in the tub and give him his last bath. Washed his hair and combed it just the way he liked. Got the clothes that he had chosen for his party and Jeremy helped me dress him. Since all the arrangements were already made. Jeremy called the Dr. to let him know but telling him to take his time as my Mom has things to do before Justin could leave our home. Called the funeral home to let them know that we were waiting for the Dr. to come and pronouce but to make them aware that when he comes we would call again for them to come for Justin. We placed Justin back on his bed...Dressed in his favorite clothes, Butterflies in his hand, and Kathleens hair wrapped in its beautiful cloth to help him on his path.

The Dr. arrived and just stood and looked. Tears were flowing by all, but Justin was so at peace. His huge smile still on his face. Jeremy had made the call to the funeral home to say the Dr. had just arrived so it was not long that they too were at our door. Again...both men stood for just a moment and looked...An Angel soaring like the Eagle he was...Free!

As they took Justin the emotions were really wild. BUT...just like Justin...he would help us all get through this. The funeral Hearse left our yard, BUT...went to go by the second driveway. Oh know I heard form Michael our third son. Oh NO...everyone went to see out the window. Even the Dr. was on his tippy toes trying to see what what happeneing. OH NO was heard from all the boys...I looked and couldn't help but to start to laugh. The hearse had gone and got stuck. We didn't clean the second driveway, and now they were stuck. Here are the boys all saying...Only us...oh yeah our brother dies and now he is stuck. Come on get dressed only our family would have to push him out of a snow bank. The Dr. was on his toes...saying surely they really are not stuck? Yes they are...The driver was going back and forth trying to get out. The boys were grabbing their boots and heading out the door when they finally got out.

In they came...looking lost...I just started to laugh out loud...Only Justin would make sure to take the edge off for us. At this point we all started to laugh even the Dr. Justin always letting us know who is control. One more STUCK...before his final flight!

In tears...but Laughing...Ahhh Precious memories!

Hugs

Butterflymom

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