Friday, December 18th, 2009
Hi Everyone,
Its time for an update. I don't know where to start. My mind has been spinning a hundred miles an hour for weeks now. Its full. It just won't stop. Sometimes, my head is spinning so fast I can't find it in me to turn my thoughts into to words. My last update , we were getting ready for Disney. We had a fantastic time. The weather decided not to be nice to us and didn't cooperate in any way but we made the best of it. We were sent to "Give Kids The World". It was in no other words: MAGICAL! We had a beautiful Villa and Jacob, who was nicknamed Master Jacob for the week was exactly that, A Master. He was the King of the World for 6 days and I don't think he will ever forget it. Neither will we, by far. To have had this opportunity to make these unforgettable memories with him is beyond any feeling I could ever describe. Some days I think WOW! I can't wait to go back. Some other days, where my day is a bit darker, I think WOW! that may be the last thing I ever do with him. I know, it sounds selfish but that's just the way it is. I can't help it. But we had the best moments ever. Thank you to the Children's Wish Foundation of Canada. If you ever are looking for a charity to donate. There is just no price for the opportunity they gave me and my family. Just no price. I will post pictures soon.
Today, I went to Jacob's school for his Christmas concert. He went up on stage, didn't know a word to the songs but I still cried. I bawled actually. I'm good at doing that discretly now but i did it. To see him stand up there, it was more than I could handle.
I did notice however today how much he is struggling to keep up. To keep up with school work, to keep up with the environment, to keep up with the atmosphere, the speed of things and to keep up with his friends. Sometimes, I get scared that his friends won't want to eventually play with him anymore because he just can't keep up, or because he cries so easily. He gets frustrated so quickly. I wish I could shake it off of him but I just can't. It doesn't take much for him to get so overwhelmed. It makes me sad, yet he has the best of friends in his class who are right there to help him or console him when he is sad. Its incredible. They are incredible children and were brought up very well.
Christmas is approaching. This is not a good time for me. First because I still can't believe my father won't be here. My first Christmas without my daddy and it could be my last with Jacob. It is so overwhelming and I hope none of you every have to have these horrible thoughts that poison your mind. Second, last year at this time, was one of our darkest hours with Jacob. Most of you didn't know us at this time last year as I didn't start Jacob's Journey before February but it was the worst time in our lives. Jacob was ill with pneumonia. I remember x-mas eve, i remember the dark room. I remember the sound of the oxygen on FULL BLAST. I remember him barely waking up. I remember thinking I will have to say goodbye to my son on x-mas. What a vicious vicious thought. Last Year on boxing day, Jacob was shipped to Mtl for his stem cell collection. We ended up being there through New Year. It was one of my many, but one of my darkest hour. I was in a deep deep dark hole, and this time of year just brings it all back. It still hurts.
On a good note though, this year, we get to have a Christmas. It may be without my daddy, who i miss so much, but it will be with a Jacob that will be home, with a little boy who can eat. I will make sure there is LOTS and LOTS and LOTS of food. I will make up for the 8 months he was not able to eat.
This year, It will be another memory. It will be Liam's first Christmas. It will be, a WONDERFUL CHRISTMAS. :)
No MRI results before January 6th. I was a little upset that they didn't book us in but not anymore. It will be a wonderful Christmas.
Happy Holidays to all and thank you "infiniment" for your support and your love.
Friday, December 18, 2009
Monday, November 23, 2009
Off to Disney!
Monday November 23rd, 2009
good evening everyone,
its been a while since my last update. Things have been good. Great actually. Jacob has spread his wings as wide as he possibly can.
Today was our three month MRI. I can't believe three months have gone by already. It seems like just yesterday we were getting the last results and getting comfortable. But here we are again, waiting with anticipation the results to see how the tumor is doing. It was a very emotional day for me today. I couldn't figure out why this one was so different from the others but as i sit here and write to you all, i figured it out. Its because my son has a brain tumor. Its because these MRIs are a constant reminder that my son was diagnosed with a brain tumor. My friend wrote on my wall this week about thinking of how "normal" our life will really ever be and she is right. Its something I always think about. We may be into a normal routine but our lives are far from ever being normal again. A life of MRIs, doctors, ct scans, IVIGs, chemo and radiation makes it a life that will ever be far from normal.
This week I am packing for our trip to Disney. We are SOOOOO excited. I can't think of a child who deserves this more than Jacob right now. Why are we going to Disney? because the Wish Foundation is granting my son with a terminally ill disease, any wish he wants. I love that we have this opportunity that we could never do on our own but when you think of the reason he is going, makes me sad.
I am afraid. I am afraid of losing my son. Some days I am grateful to still have Jacob in my life but some days, like today, I am afraid of losing him. The thoughts are just insane. You can't even imagine unless you are faced with it but I am honestly afraid. I am scared to hear those words one day from the doctors saying there is nothing else they can do. I will get over this feeling, i know I will, I always do...until the next MRI in three months.
The only way you can truly know how well Jacob is doing is by seeing him. He just lightens up ANY room he walks into. He is a gift. My gift. My birthday gift, my Christmas gift. He is my everything. Jacob and Liam are the reason I get up in the morning, i hope its never taken away from me.
I have decided not to get the results before our return from Disney. We are going to go and have a unforgettable time and make wonderful memories first. I can't wait to come and tell you all about it.
good evening everyone,
its been a while since my last update. Things have been good. Great actually. Jacob has spread his wings as wide as he possibly can.
Today was our three month MRI. I can't believe three months have gone by already. It seems like just yesterday we were getting the last results and getting comfortable. But here we are again, waiting with anticipation the results to see how the tumor is doing. It was a very emotional day for me today. I couldn't figure out why this one was so different from the others but as i sit here and write to you all, i figured it out. Its because my son has a brain tumor. Its because these MRIs are a constant reminder that my son was diagnosed with a brain tumor. My friend wrote on my wall this week about thinking of how "normal" our life will really ever be and she is right. Its something I always think about. We may be into a normal routine but our lives are far from ever being normal again. A life of MRIs, doctors, ct scans, IVIGs, chemo and radiation makes it a life that will ever be far from normal.
This week I am packing for our trip to Disney. We are SOOOOO excited. I can't think of a child who deserves this more than Jacob right now. Why are we going to Disney? because the Wish Foundation is granting my son with a terminally ill disease, any wish he wants. I love that we have this opportunity that we could never do on our own but when you think of the reason he is going, makes me sad.
I am afraid. I am afraid of losing my son. Some days I am grateful to still have Jacob in my life but some days, like today, I am afraid of losing him. The thoughts are just insane. You can't even imagine unless you are faced with it but I am honestly afraid. I am scared to hear those words one day from the doctors saying there is nothing else they can do. I will get over this feeling, i know I will, I always do...until the next MRI in three months.
The only way you can truly know how well Jacob is doing is by seeing him. He just lightens up ANY room he walks into. He is a gift. My gift. My birthday gift, my Christmas gift. He is my everything. Jacob and Liam are the reason I get up in the morning, i hope its never taken away from me.
I have decided not to get the results before our return from Disney. We are going to go and have a unforgettable time and make wonderful memories first. I can't wait to come and tell you all about it.
Thursday, October 22, 2009
Those Horrible Words
Thursday October 22nd, 2009
Two postings in two days...I guess I am making up for the lack of updates the last two months. lol
I had a need to sit and write to my most awesomest support group. I just came back from a little meeting with Jacobs teacher. I am sad. It really isn't that bad but my heart breaks right now and i can't stop crying. We were told by the teacher today that Jacob is struggling. Struggling and is not at the same level as the other chidren in his class. Although it was to be expected I was heartbroken to actually hear it. I am not sure how we went from a normal life with an above average child who exceeded in everything and was titled a genius to a boy who can barely zip up his coat without help. Its sad and for some reason as I sit here and watch the rain fall, it hit me again that - My child has cancer. My beautiful once upon a time healthy child, has cancer. OMG! its a slap in the face everytime i actually take the time to say it...those words, those horrible horrible words "My child has cancer". Wow, i can't stop saying it. I went from starting my day by sending Jacob to school and having a very nice coffee date with two great friends and now I am sitting here crying because my child needs help from other 6 year olds to zip up his coat. Its not fair. its just not fair. Today, i want to feel sorry for myself.
I am not taking anything away from Jacob. I think he is amazing to even be going to school right now and I admire him and respect him for his strenght and courage. The fact that we thought he wouldn't even be here with us today and he is in school as I write this is absolutely amazing to me...but i am angry. I am so angry. I just want to feel sorry for myself today. Just today, just right now. Tomorrow is another day.
Two postings in two days...I guess I am making up for the lack of updates the last two months. lol
I had a need to sit and write to my most awesomest support group. I just came back from a little meeting with Jacobs teacher. I am sad. It really isn't that bad but my heart breaks right now and i can't stop crying. We were told by the teacher today that Jacob is struggling. Struggling and is not at the same level as the other chidren in his class. Although it was to be expected I was heartbroken to actually hear it. I am not sure how we went from a normal life with an above average child who exceeded in everything and was titled a genius to a boy who can barely zip up his coat without help. Its sad and for some reason as I sit here and watch the rain fall, it hit me again that - My child has cancer. My beautiful once upon a time healthy child, has cancer. OMG! its a slap in the face everytime i actually take the time to say it...those words, those horrible horrible words "My child has cancer". Wow, i can't stop saying it. I went from starting my day by sending Jacob to school and having a very nice coffee date with two great friends and now I am sitting here crying because my child needs help from other 6 year olds to zip up his coat. Its not fair. its just not fair. Today, i want to feel sorry for myself.
I am not taking anything away from Jacob. I think he is amazing to even be going to school right now and I admire him and respect him for his strenght and courage. The fact that we thought he wouldn't even be here with us today and he is in school as I write this is absolutely amazing to me...but i am angry. I am so angry. I just want to feel sorry for myself today. Just today, just right now. Tomorrow is another day.
Tuesday, October 20, 2009
Carpe Diem
Tuesday October 20th, 2009
Wow! it sure has been a long time. Thank you to everyone who kept asking for updates. I needed time. I have been and still am grieving. Its also been well...BUSY in our household. I gotta tell you, it sure didn't take long for us to fall back into the "old" routine that I so longed for the last ten months. A bit too much actually. Some days I have to give myself a good shake when the little things bother me and upset as I had vowed that those things would no longer bug me. But I suppose that this is as normal as our lives are going to get so I shouldn't complain.
We are doing well. This is a very good time but also sad time for me. Jacob is doing extremely well. He is a boy again, actually, a 6 year old boy. We just celebrated Jacob's birthday and had you asked us 6 months ago if we even thought he would be here to celebrate with us, the answer would be truthfully...no.
But he is going to school. I think he is doing very well as his teacher always tells me so but today I got a call from the school wanting to talk about Jacob's behaviour. Not sure what all this is really about but I am anxious. Whatever it is, i dont really care. This is more than we thought Jacob could ever do so if he needs a bit more time to adjust....so be it!
Times have been also sad. I am having a really hard time with my father's death. I knew it would be hard but wow....some moments I just want to fall apart in somebody's arms...anyone who is willing to catch me. Some days I feel so alone with my grief. Jacob is also, surprisingly, having a hard time with jidou being gone. I don't think he truly got it until we go visit my mom and jidou is not on the couch...he is really gone. He has had a number of very overwhelming breakdowns. Jason and I have helped him through them but I am just not sure what to do at this point. He has so many questions. I don't want to hide anything from him. I think we need to get him some help in perhaps understanding more what has happened.
I miss him so much, i feel empty. It almost makes it worse that Jacob is doing so well, I want him to be here to see it. I want him to be here to see Liam's smile that can light up an entire room. But he is not.
I have lost the little bit of faith I had the last ten months. I so want to believe he is with us. I so want to believe in heaven. I have created this heaven in my head. A place with no sadness. A place with no pain, heartbreaks or tears. I imagine my father having a glass of scotch and a smoke and that nothing can hurt him anymore. I imagine him sitting there, looking down on us but not with sadness that he is not here anymore, but watching us with a subtle smile. That is what I hope heaven is like. I so need to believe it. I went to the cemetery with Liam today. I talked to him outloud. It felt weird at first but I so wanted to believe he could hear me that I had an entire conversation with him. Liam and I spoke to him, sang to him and cried for him. I cried. I cried alot....it felt SO good to just cry with nobody around.
Its hard. But life goes on. Life must go on. I must take care of my family. My children, my husband, my sisters, my nieces and my mother. My poor mother who has lost a person that she shared 47 years with. She is not well. I worry. I am sad for her. These were suppose to be good times.
But I am so happy to be able to tell you all that Jacob is doing fantastic. It really is a miracle. We are still working on his vision. His hearing is damaged now and we must work with what we have. He is walking, running, eating. He is happy. I enjoy every single moment I have with him. I can just sit there and stare at him all day. He amazes me every day...wether it is something he does or says or simply getting out of bed in the morning....he amazes me. I love him. I love him from the bottom of my heart. I love my children and I wouldn't change a thing. Next week we have an appt. with the wish foundation. I think these organizations are amazing! I think we are going to Disney. I want to give Jacob the time of his life. I want him to live like there's no tomorrow. Jacob got a personal invitation last week to a senators hockey practice and a game. He had a blast!!!! Those are the moments we will cherish...forever.
We have another MRI coming up in a few weeks. Oye! i can't believe we have to go through this every three months for the next two years. Every single one of them will be harder than the next but we live for the moment. Carpe Diem! Seize the day.
Thank you so much everyone for wanting updates. For asking. For checking everyday for one. I will never be able to say it enough....Thank you for all your support. Thank you!
Wow! it sure has been a long time. Thank you to everyone who kept asking for updates. I needed time. I have been and still am grieving. Its also been well...BUSY in our household. I gotta tell you, it sure didn't take long for us to fall back into the "old" routine that I so longed for the last ten months. A bit too much actually. Some days I have to give myself a good shake when the little things bother me and upset as I had vowed that those things would no longer bug me. But I suppose that this is as normal as our lives are going to get so I shouldn't complain.
We are doing well. This is a very good time but also sad time for me. Jacob is doing extremely well. He is a boy again, actually, a 6 year old boy. We just celebrated Jacob's birthday and had you asked us 6 months ago if we even thought he would be here to celebrate with us, the answer would be truthfully...no.
But he is going to school. I think he is doing very well as his teacher always tells me so but today I got a call from the school wanting to talk about Jacob's behaviour. Not sure what all this is really about but I am anxious. Whatever it is, i dont really care. This is more than we thought Jacob could ever do so if he needs a bit more time to adjust....so be it!
Times have been also sad. I am having a really hard time with my father's death. I knew it would be hard but wow....some moments I just want to fall apart in somebody's arms...anyone who is willing to catch me. Some days I feel so alone with my grief. Jacob is also, surprisingly, having a hard time with jidou being gone. I don't think he truly got it until we go visit my mom and jidou is not on the couch...he is really gone. He has had a number of very overwhelming breakdowns. Jason and I have helped him through them but I am just not sure what to do at this point. He has so many questions. I don't want to hide anything from him. I think we need to get him some help in perhaps understanding more what has happened.
I miss him so much, i feel empty. It almost makes it worse that Jacob is doing so well, I want him to be here to see it. I want him to be here to see Liam's smile that can light up an entire room. But he is not.
I have lost the little bit of faith I had the last ten months. I so want to believe he is with us. I so want to believe in heaven. I have created this heaven in my head. A place with no sadness. A place with no pain, heartbreaks or tears. I imagine my father having a glass of scotch and a smoke and that nothing can hurt him anymore. I imagine him sitting there, looking down on us but not with sadness that he is not here anymore, but watching us with a subtle smile. That is what I hope heaven is like. I so need to believe it. I went to the cemetery with Liam today. I talked to him outloud. It felt weird at first but I so wanted to believe he could hear me that I had an entire conversation with him. Liam and I spoke to him, sang to him and cried for him. I cried. I cried alot....it felt SO good to just cry with nobody around.
Its hard. But life goes on. Life must go on. I must take care of my family. My children, my husband, my sisters, my nieces and my mother. My poor mother who has lost a person that she shared 47 years with. She is not well. I worry. I am sad for her. These were suppose to be good times.
But I am so happy to be able to tell you all that Jacob is doing fantastic. It really is a miracle. We are still working on his vision. His hearing is damaged now and we must work with what we have. He is walking, running, eating. He is happy. I enjoy every single moment I have with him. I can just sit there and stare at him all day. He amazes me every day...wether it is something he does or says or simply getting out of bed in the morning....he amazes me. I love him. I love him from the bottom of my heart. I love my children and I wouldn't change a thing. Next week we have an appt. with the wish foundation. I think these organizations are amazing! I think we are going to Disney. I want to give Jacob the time of his life. I want him to live like there's no tomorrow. Jacob got a personal invitation last week to a senators hockey practice and a game. He had a blast!!!! Those are the moments we will cherish...forever.
We have another MRI coming up in a few weeks. Oye! i can't believe we have to go through this every three months for the next two years. Every single one of them will be harder than the next but we live for the moment. Carpe Diem! Seize the day.
Thank you so much everyone for wanting updates. For asking. For checking everyday for one. I will never be able to say it enough....Thank you for all your support. Thank you!
Wednesday, September 2, 2009
With Love, We Brought Him Back to Health!
Wednesday September 2nd, 2009
WITH LOVE, WE BROUGHT HIM BACK TO HEALT
I am at a loss for words as I start this journal tonight. I am beside myself with happiness, with relief and with great sadness. I have NEVER felt this overwhelmed since starting this journey 10 months ago TODAY.
Today, as most of you know, we got some news that we weren't quite expecting. As we walked in to the doctor's office, it was in that very same room 10 months ago that we were given the devastating news, news that would change our lives...forever. Today, we were told that there was no more signs of cancer. The tumor is still there but inactive and all dead cells. Words, we were not expecting but were overjoyed beyond any words could ever express to hear. Jacob did not quite understand why mommy was crying, but was quickly reassured they were tears of joy.
I don't think the news has quite sunk in yet. I am not sure if it ever will. I am not sure how to feel. I am overjoyed but at the same time I cried, I cried for my daddy, for Jacob's jidou who I so wish could be here to share this news with. But on the other hand, many believed and now I join them, that he unselfishly took Jacob's cancer with him to his grave. Thank you Baba, if you did, I am truly grateful but so sad that it cost you your life. I miss you terribly. I miss you so badly daddy that it hurts my insides. Jacob misses you. Jacob feels your absence and sees you in his dreams.
Today, we got good news, great news actually but at the same time we have learned of a little friend's passing. The same mother I cried with over Jacob and how sick Jacob was, has said goodbye to her angel. Jason and I are so deeply saddened by his death. He was 7 years old and a beautiful beautiful child. We did not tell Jacob, nor will we. We feel its just not the time. I just don't understand.
So, for now, we live to see another day with our beautiful hero. He will live on to go to school, to play, to eat, to drive me crazy at times...lol and live to his 6th birthday shortly. Life is beautiful. Although his health will forever be on our minds, his health will ALWAYS be in question and we will ALWAYS wonder if it will come back. There will still be an MRI scheduled every three months for the next two years. Every one of them will make my heart race...but until then....JACOB IS CANCER FREE.
This journey will continue, continue with more strength then we had before. I wish you all knew how much Jason and I have laughed, cried and cried some more reading your messages, your words of kindness, your words of encouragements, your prayers, your hope...your support. I don't know what we would have done without all of you holding our hand from afar as we cried so many, many tears. Thank you. Thank you. Thank you.
Liam is doing wonderfully. I never thought I could find enough love for him when Jacob got sick but boy did I quickly realize that I have plenty to go around. He is a beautiful child. Full of love and smiles and knows that he and his brother have a special bond. My family is a family again, and although life will never be the same, we are stonger than ever and are ready to face the world. I am a lucky woman. I count my blessings every day and hope you all never take your families, your parents, your sisters, your brothers, your friends and your children for granted. You only have one life to live...make the best of it.
I always wish this never happened but we have met some pretty amazing people on this road. I have made forever friends and for that I am thankful.
luv you all and thank you for your support. Liliane oxo
WITH LOVE, WE BROUGHT HIM BACK TO HEALT
I am at a loss for words as I start this journal tonight. I am beside myself with happiness, with relief and with great sadness. I have NEVER felt this overwhelmed since starting this journey 10 months ago TODAY.
Today, as most of you know, we got some news that we weren't quite expecting. As we walked in to the doctor's office, it was in that very same room 10 months ago that we were given the devastating news, news that would change our lives...forever. Today, we were told that there was no more signs of cancer. The tumor is still there but inactive and all dead cells. Words, we were not expecting but were overjoyed beyond any words could ever express to hear. Jacob did not quite understand why mommy was crying, but was quickly reassured they were tears of joy.
I don't think the news has quite sunk in yet. I am not sure if it ever will. I am not sure how to feel. I am overjoyed but at the same time I cried, I cried for my daddy, for Jacob's jidou who I so wish could be here to share this news with. But on the other hand, many believed and now I join them, that he unselfishly took Jacob's cancer with him to his grave. Thank you Baba, if you did, I am truly grateful but so sad that it cost you your life. I miss you terribly. I miss you so badly daddy that it hurts my insides. Jacob misses you. Jacob feels your absence and sees you in his dreams.
Today, we got good news, great news actually but at the same time we have learned of a little friend's passing. The same mother I cried with over Jacob and how sick Jacob was, has said goodbye to her angel. Jason and I are so deeply saddened by his death. He was 7 years old and a beautiful beautiful child. We did not tell Jacob, nor will we. We feel its just not the time. I just don't understand.
So, for now, we live to see another day with our beautiful hero. He will live on to go to school, to play, to eat, to drive me crazy at times...lol and live to his 6th birthday shortly. Life is beautiful. Although his health will forever be on our minds, his health will ALWAYS be in question and we will ALWAYS wonder if it will come back. There will still be an MRI scheduled every three months for the next two years. Every one of them will make my heart race...but until then....JACOB IS CANCER FREE.
This journey will continue, continue with more strength then we had before. I wish you all knew how much Jason and I have laughed, cried and cried some more reading your messages, your words of kindness, your words of encouragements, your prayers, your hope...your support. I don't know what we would have done without all of you holding our hand from afar as we cried so many, many tears. Thank you. Thank you. Thank you.
Liam is doing wonderfully. I never thought I could find enough love for him when Jacob got sick but boy did I quickly realize that I have plenty to go around. He is a beautiful child. Full of love and smiles and knows that he and his brother have a special bond. My family is a family again, and although life will never be the same, we are stonger than ever and are ready to face the world. I am a lucky woman. I count my blessings every day and hope you all never take your families, your parents, your sisters, your brothers, your friends and your children for granted. You only have one life to live...make the best of it.
I always wish this never happened but we have met some pretty amazing people on this road. I have made forever friends and for that I am thankful.
luv you all and thank you for your support. Liliane oxo
Saturday, August 22, 2009
Saying Goodbye to Jidou
Saturday August 22nd, 2009
I had vowed when we came back from Montreal that this journal from here on would be happy updates. It is not the case. I write tonight with the biggest sadness my heart has ever felt. I thought that life couldn't get any worse. I thought that a sick child took away every bit of tears and heartbreak that one could ever experience...that is not the case. Losing a parent has brought great devastation in our lives. Life from here on....will never be the same.
Five months ago, we thought we would be grieving for our child. Today we grieve for my father. A man who has worked so hard to take care of his family. A man full of love for his children and grandchildren and for my mother. Today we grieve for a man that will never be forgotten.
I can't believe he is gone. I just can't believe he gone. I can't believe we will never see him again. No more daddy...no more jidou. No more seeing his beautiful face, his beautiful smile. It just wasn't suppose to be like this. He was suppose to see Jacob grow up. He was suppose to see him healthy and happy for as long as that was suppose to be.
I am angry. I am angry that the time spent in Montreal should have been time spent here with my father. I am angry that we wasted that time there which done Jacob no good and took away time we should have spent with my dad. I am just not sure how I will ever get over this.
Jacob is well. He is grieving his jidou's death in his own way, he is sad but also happy. happy like a 5 year old should be. He is a miracle. He has his MRI booked next wednesday the 26th. I ask that you all think and pray for him on that day. I can only pray for good news at this point. I can no longer handle bad news. I can no longer handle such devastation in my life.
Liam and Jason are doing good. Jason is also grieving but Liam, sadly, will never know his jidou. Jacob promised Liam that he will tell him all about his jidou when he is old enough.
Oh daddy, I miss you every minute of every day and i just don't know where I will find it in me to move on without you. I can't believe you are gone. Rest in peace my baba. You are forever in our hearts.
I had vowed when we came back from Montreal that this journal from here on would be happy updates. It is not the case. I write tonight with the biggest sadness my heart has ever felt. I thought that life couldn't get any worse. I thought that a sick child took away every bit of tears and heartbreak that one could ever experience...that is not the case. Losing a parent has brought great devastation in our lives. Life from here on....will never be the same.
Five months ago, we thought we would be grieving for our child. Today we grieve for my father. A man who has worked so hard to take care of his family. A man full of love for his children and grandchildren and for my mother. Today we grieve for a man that will never be forgotten.
I can't believe he is gone. I just can't believe he gone. I can't believe we will never see him again. No more daddy...no more jidou. No more seeing his beautiful face, his beautiful smile. It just wasn't suppose to be like this. He was suppose to see Jacob grow up. He was suppose to see him healthy and happy for as long as that was suppose to be.
I am angry. I am angry that the time spent in Montreal should have been time spent here with my father. I am angry that we wasted that time there which done Jacob no good and took away time we should have spent with my dad. I am just not sure how I will ever get over this.
Jacob is well. He is grieving his jidou's death in his own way, he is sad but also happy. happy like a 5 year old should be. He is a miracle. He has his MRI booked next wednesday the 26th. I ask that you all think and pray for him on that day. I can only pray for good news at this point. I can no longer handle bad news. I can no longer handle such devastation in my life.
Liam and Jason are doing good. Jason is also grieving but Liam, sadly, will never know his jidou. Jacob promised Liam that he will tell him all about his jidou when he is old enough.
Oh daddy, I miss you every minute of every day and i just don't know where I will find it in me to move on without you. I can't believe you are gone. Rest in peace my baba. You are forever in our hearts.
Wednesday, August 12, 2009
A Different Kind of Tears
Wednesday August 12th, 2009
As I sit here tonight by my father's side as he slowly slips away, I can't help but to wonder how did this happen? How did the tables so suddenly turn? Just when we got to bring Jacob home and start enjoying life again, now we must prepare to mourn for my father. It just isn't fair.
I sit here and cry. Its different kind of tears. Its a different kind of sadness for a parent than a child. Its still a heavy crushing feeling but just not the same. I just can't explain it. We started funeral arrangements. Its almost unethical how much it costs to burry your loved one. It should be illegal. Funeral homes should be deprivatized. It is taking advantage of the grieving and its just wrong. I ask that you all keep my father in your thoughts even if most of you have never even met him. Like I said in my previous entry, he is part of Jacob's Journey and forever will be.
On a happier note, Jacob is doing miraculously well. My sister and I were sitting outside one night and she asked me if i thought God had taken the pain away from Jacob and gave it to dad...you can't help but wonder.
We couldn't have asked for a more beautiful day for Jacob's homecoming. Its like the skies just opened up just for him. Turn out was about 150 PEOPLE!!!!! I couldn't believe it and thank everyone who came to celebrate life AND food!!! :) :)
It was a beautiful day to celebrate our hero! picture to come soon....
As I sit here tonight by my father's side as he slowly slips away, I can't help but to wonder how did this happen? How did the tables so suddenly turn? Just when we got to bring Jacob home and start enjoying life again, now we must prepare to mourn for my father. It just isn't fair.
I sit here and cry. Its different kind of tears. Its a different kind of sadness for a parent than a child. Its still a heavy crushing feeling but just not the same. I just can't explain it. We started funeral arrangements. Its almost unethical how much it costs to burry your loved one. It should be illegal. Funeral homes should be deprivatized. It is taking advantage of the grieving and its just wrong. I ask that you all keep my father in your thoughts even if most of you have never even met him. Like I said in my previous entry, he is part of Jacob's Journey and forever will be.
On a happier note, Jacob is doing miraculously well. My sister and I were sitting outside one night and she asked me if i thought God had taken the pain away from Jacob and gave it to dad...you can't help but wonder.
We couldn't have asked for a more beautiful day for Jacob's homecoming. Its like the skies just opened up just for him. Turn out was about 150 PEOPLE!!!!! I couldn't believe it and thank everyone who came to celebrate life AND food!!! :) :)
It was a beautiful day to celebrate our hero! picture to come soon....
Thursday, August 6, 2009
Prayers for Jidou
Thursday, August 6th 2009.
Hello,
Tonight, i feel the need the write because my heart is very sad. I have an overpowering sadness. Tonight, i don't write about Jacob. I write about my father. My father is very ill and tonight in emerg we heard the word "Terminal" a few times and was asked if we had thought of palliative care. It brought back memories of those questions asked of Jacob which wasn't that long ago but seems like forever ago.
I write to you all about my father because he is Jacob's grandfather and is part of Jacob's Journey. He is a wonderful man. He has been there from the very begining. Visited Jacob EVERY DAY in the hopsital as hard as it was for him to walk in that room and he his 5 year old first grandson sick with cancer.
My father has cancer. Ironically, he also has brain tumors. He was doing relatively well up until a couple of weeks ago. Now, he is barely able to talk, is no longer able to walk and is slowly leaving us. When I told Jacob about "jidou" being very sick and will be going to heaven someday he turned to me and said "but i dont want him to leave". He understand what's going on. A typical 5 year old shouldn't really get what's happening but Jacob, does.
I cried alot today. hadn't cried like this in quite some time because in this house, we are happy. But today, i cry. I cry for the man who has worked so hard my entire life to raise and take care of his 4 daughters and his wife. I cry for the man whom i never thought we'd leave me but will someday say goodbye.
Saturday we have jacob's welcome home party. My father was suppose to be there but now i don't think he will make it to the house. It will be hard to be celebrating life when another is being slowly taken away but we must celebrate Jacob. We must celebrate how strong he was and is to have lived to see another day.
For all of you who believe in prayer, i ask that you say one for my father. I ask that, today, you think of him and say a prayer for him as you all have for Jacob so many times.
I love you Baba.
Hello,
Tonight, i feel the need the write because my heart is very sad. I have an overpowering sadness. Tonight, i don't write about Jacob. I write about my father. My father is very ill and tonight in emerg we heard the word "Terminal" a few times and was asked if we had thought of palliative care. It brought back memories of those questions asked of Jacob which wasn't that long ago but seems like forever ago.
I write to you all about my father because he is Jacob's grandfather and is part of Jacob's Journey. He is a wonderful man. He has been there from the very begining. Visited Jacob EVERY DAY in the hopsital as hard as it was for him to walk in that room and he his 5 year old first grandson sick with cancer.
My father has cancer. Ironically, he also has brain tumors. He was doing relatively well up until a couple of weeks ago. Now, he is barely able to talk, is no longer able to walk and is slowly leaving us. When I told Jacob about "jidou" being very sick and will be going to heaven someday he turned to me and said "but i dont want him to leave". He understand what's going on. A typical 5 year old shouldn't really get what's happening but Jacob, does.
I cried alot today. hadn't cried like this in quite some time because in this house, we are happy. But today, i cry. I cry for the man who has worked so hard my entire life to raise and take care of his 4 daughters and his wife. I cry for the man whom i never thought we'd leave me but will someday say goodbye.
Saturday we have jacob's welcome home party. My father was suppose to be there but now i don't think he will make it to the house. It will be hard to be celebrating life when another is being slowly taken away but we must celebrate Jacob. We must celebrate how strong he was and is to have lived to see another day.
For all of you who believe in prayer, i ask that you say one for my father. I ask that, today, you think of him and say a prayer for him as you all have for Jacob so many times.
I love you Baba.
Wednesday, July 29, 2009
A Bittersweet Day
Wednesday July 29th, 2009
Hello All,
Well today was a big day in Jacob's Journey. Jacob had his central line removed. It was a bitter sweet feeling for mama to be honest. Jacob is not in remission at this time therefore Jacob's broviac removal means two things:
First, it means that Jacob is done treatments. It means, he survived 8 months of hell. It means, he went through three horrible cycles of chemo, 30 radiation treatments, a stem cell transplant and 9 surgeries. It means, he went through three episodes of pneumonia, it means, he almost "went to the light" a couple of times but miraculously somehow surpassed it. It is a big day for us, today, means Jacob is at home.
Second, this broviac removal means that this is it. This is really it. There is nothing else they can do for Jacob anymore and all we can do now is hope that he stays stable and the tumor no longer grows. What are the chances? nobody knows. Really, nobody knows. It will be a waiting game, it will be a life of stress, it will be a life of wondering if the next MRI will tell us that Jacob's tumor grew and there is no longer anything they can do for him...its a life of the unknown.
But, that's ok. Today, I wasn't emotional. I didn't cry. Today, I am happy. Today, I kissed and hugged my children more than i ever have. I kissed them so much they must have an imprint of my lips by now.
This only means now that we must enjoy every moment we have with Jacob. It just means that we have to make the best of every moment, do everything we have always wanted to do but always said tomorrow. It means, everytime Jacob says "can you play with me" we don't say, later.
We have come a long way from the begining of this journey. We are in the best time of our lives that we will ever be.
It was a good week this week. I have connected with a person that I know will be forever in our lives (no really, i mean forever...she is stalking me)! LOL LOL We have a great support system and wonderful people who genuinely care for us. I have my entire family together again under the same roof. These are good times.
I realize that i probably said the word TODAY about 20 times in this entry....but TODAY is all we have.
Hello All,
Well today was a big day in Jacob's Journey. Jacob had his central line removed. It was a bitter sweet feeling for mama to be honest. Jacob is not in remission at this time therefore Jacob's broviac removal means two things:
First, it means that Jacob is done treatments. It means, he survived 8 months of hell. It means, he went through three horrible cycles of chemo, 30 radiation treatments, a stem cell transplant and 9 surgeries. It means, he went through three episodes of pneumonia, it means, he almost "went to the light" a couple of times but miraculously somehow surpassed it. It is a big day for us, today, means Jacob is at home.
Second, this broviac removal means that this is it. This is really it. There is nothing else they can do for Jacob anymore and all we can do now is hope that he stays stable and the tumor no longer grows. What are the chances? nobody knows. Really, nobody knows. It will be a waiting game, it will be a life of stress, it will be a life of wondering if the next MRI will tell us that Jacob's tumor grew and there is no longer anything they can do for him...its a life of the unknown.
But, that's ok. Today, I wasn't emotional. I didn't cry. Today, I am happy. Today, I kissed and hugged my children more than i ever have. I kissed them so much they must have an imprint of my lips by now.
This only means now that we must enjoy every moment we have with Jacob. It just means that we have to make the best of every moment, do everything we have always wanted to do but always said tomorrow. It means, everytime Jacob says "can you play with me" we don't say, later.
We have come a long way from the begining of this journey. We are in the best time of our lives that we will ever be.
It was a good week this week. I have connected with a person that I know will be forever in our lives (no really, i mean forever...she is stalking me)! LOL LOL We have a great support system and wonderful people who genuinely care for us. I have my entire family together again under the same roof. These are good times.
I realize that i probably said the word TODAY about 20 times in this entry....but TODAY is all we have.
Tuesday, July 21, 2009
All We Have is Today
Tuesday July 21st, 2009
Tonight, I am happy. I am not sad, I am not stressed. I am not nervous. I am not scared. I am simply happy. Tonight, I am not angry at the world. I am not asking why this happened to us. I am simply happy.
Jacob has surpassed any expectations we had once again. Next week, Jacob will have already reached his goal. Instead of 8 weeks, in 4 weeks Jacob has managed to reach his goal of the HAPPY MEAL he has so been longing for. Who would have ever thought that I would be in tears knowing my son can have McDonald's. Today when I saw him put a star beside his last step before reaching his goal, I cried.
Amanda, I wish you had come and said hi. Somedays i sit and wonder how i can find a way to thank every single one of you for being there for us. For being our support system. But there is just no way i can, i can only hope that you all know and if i ever had the honor of meeting you all i would give you a big hug and hope that you would feel the love.
Funny cause that day you saw me at Walmart, i arrived happy but as I walked through the doors this mother and what I am assuming was her daughter made a crude comment as I walked in with Jacob in his wheelchair and his best friend Patrick. I was so upset i just wanted to cry and then wondered why the hell would I even freakin' care what this person thought. I was so mad at myself for caring even it was for just one moment. I realized after that i got upset because it made me remember that once upon a time i had a child who didn't stand out, a child who was just like any other kid....well besides being smarter and cuter and perfect ...lol lol was just like any other kid. I was going to say something to her but as I walked away and my two boys were laughing and joking, i stopped caring.
It doesn't matter anymore what the future holds for us. I don't even think of the future, we don't have a future, we dont' even have a past anymore. All we have is today and I will enjoy all the time I have left with my entire family, after all, none of us know when our time is up.
We are having Jacob's welcome home party on August 8th. I hope you all can join us. Please email me if you would like more info. lhajjar@uottawa.ca
Tonight, I am happy. I am not sad, I am not stressed. I am not nervous. I am not scared. I am simply happy. Tonight, I am not angry at the world. I am not asking why this happened to us. I am simply happy.
Jacob has surpassed any expectations we had once again. Next week, Jacob will have already reached his goal. Instead of 8 weeks, in 4 weeks Jacob has managed to reach his goal of the HAPPY MEAL he has so been longing for. Who would have ever thought that I would be in tears knowing my son can have McDonald's. Today when I saw him put a star beside his last step before reaching his goal, I cried.
Amanda, I wish you had come and said hi. Somedays i sit and wonder how i can find a way to thank every single one of you for being there for us. For being our support system. But there is just no way i can, i can only hope that you all know and if i ever had the honor of meeting you all i would give you a big hug and hope that you would feel the love.
Funny cause that day you saw me at Walmart, i arrived happy but as I walked through the doors this mother and what I am assuming was her daughter made a crude comment as I walked in with Jacob in his wheelchair and his best friend Patrick. I was so upset i just wanted to cry and then wondered why the hell would I even freakin' care what this person thought. I was so mad at myself for caring even it was for just one moment. I realized after that i got upset because it made me remember that once upon a time i had a child who didn't stand out, a child who was just like any other kid....well besides being smarter and cuter and perfect ...lol lol was just like any other kid. I was going to say something to her but as I walked away and my two boys were laughing and joking, i stopped caring.
It doesn't matter anymore what the future holds for us. I don't even think of the future, we don't have a future, we dont' even have a past anymore. All we have is today and I will enjoy all the time I have left with my entire family, after all, none of us know when our time is up.
We are having Jacob's welcome home party on August 8th. I hope you all can join us. Please email me if you would like more info. lhajjar@uottawa.ca
Sunday, July 12, 2009
Tears of Happiness
Sunday July 12th, 2009
Good evening to the best support group ever!!!
Hope you are all well. Here, in the Hajjar-Randell household, things couldn't be better! It brings me such hapiness and relief to sit here tonight and write good thoughts. Happy thoughts. Jacob is doing well. He has started eating. Not full meals and eating in very little bites so its not fufilling for him but he is on the right path. He is working very hard to walk again and eat again and try and correct all the damage that was done to his little body. Jason and I couldn't be prouder of that little boy. He is truly an inspiring to all. He is the poster boy for courage and strenght. Truly is.
I am not sure where to start, today was the best day in a long time. He is so happy and playful and talkative and gentle and polite and loving and emotional and well... alot of things.
Tonight, mama is happy. I am shedding tears as I write this but they are truly tears of hapiness, of joy, of relief. Jacob is on the right path of recovery. I cannot put into words how content Jason and I are that we brought him home. Its the best medicine we could have ever given him.
He is still sick. He seems more frustrated and discouraged now because everything else is going to well he doesn't understand why he still is vomiting. we don't understand either. The moments that he is sick he often says "this isn't suppose to be like this", "why is this happening to me" I fear at times that that is the life that he is destined to. I fear that this is his life for the rest of his days but hopefully there will be a miracle somehow and it will just go away. Our next MRI is scheduled for August 26th. That will be a big one. If the tumor is stable or shrunk it will be a great relief, if it has grown then we know in our hearts where we are heading and will make the best of his life. Until then, we will enjoy the time we have, we will enjoy every good day and take the bad ones with a grain of salt. The future no longer scares me...Today is what we have. Please keep us in your thoughts as you all always have.
Liam is great!!! he is almost 16lbs! yes you read right....at 2 1/2 months he is almost 16lbs. He is a wonderful baby that brings smiles to all of us. He eats well, sleeps through the night and is a gift to this family. Liam has a purpose in life just as I believe Jacob has also.
Jason is good. he is as always a strong beautiful person. He is a gifted dad. he was meant to be a father. He was meant to be a husband and I am grateful to have him.
Our days are busy. appts almost everyday. Jacob gets his broviac taken out next week(central line) which means he will be able to swim even with his feeding tube. It is a minor surgery but still a surgery that makes me nervous but I know he is in good hands.
oh i guess I can't forget lollipop. Lollipop is good. She is easily trained and I am SLOWLY getting used to her even though at times I get frustrated for having like another child in the house.
Thank you all. For those who we know and for the ones we have never met. Thank you!! oxoxoxo
Good evening to the best support group ever!!!
Hope you are all well. Here, in the Hajjar-Randell household, things couldn't be better! It brings me such hapiness and relief to sit here tonight and write good thoughts. Happy thoughts. Jacob is doing well. He has started eating. Not full meals and eating in very little bites so its not fufilling for him but he is on the right path. He is working very hard to walk again and eat again and try and correct all the damage that was done to his little body. Jason and I couldn't be prouder of that little boy. He is truly an inspiring to all. He is the poster boy for courage and strenght. Truly is.
I am not sure where to start, today was the best day in a long time. He is so happy and playful and talkative and gentle and polite and loving and emotional and well... alot of things.
Tonight, mama is happy. I am shedding tears as I write this but they are truly tears of hapiness, of joy, of relief. Jacob is on the right path of recovery. I cannot put into words how content Jason and I are that we brought him home. Its the best medicine we could have ever given him.
He is still sick. He seems more frustrated and discouraged now because everything else is going to well he doesn't understand why he still is vomiting. we don't understand either. The moments that he is sick he often says "this isn't suppose to be like this", "why is this happening to me" I fear at times that that is the life that he is destined to. I fear that this is his life for the rest of his days but hopefully there will be a miracle somehow and it will just go away. Our next MRI is scheduled for August 26th. That will be a big one. If the tumor is stable or shrunk it will be a great relief, if it has grown then we know in our hearts where we are heading and will make the best of his life. Until then, we will enjoy the time we have, we will enjoy every good day and take the bad ones with a grain of salt. The future no longer scares me...Today is what we have. Please keep us in your thoughts as you all always have.
Liam is great!!! he is almost 16lbs! yes you read right....at 2 1/2 months he is almost 16lbs. He is a wonderful baby that brings smiles to all of us. He eats well, sleeps through the night and is a gift to this family. Liam has a purpose in life just as I believe Jacob has also.
Jason is good. he is as always a strong beautiful person. He is a gifted dad. he was meant to be a father. He was meant to be a husband and I am grateful to have him.
Our days are busy. appts almost everyday. Jacob gets his broviac taken out next week(central line) which means he will be able to swim even with his feeding tube. It is a minor surgery but still a surgery that makes me nervous but I know he is in good hands.
oh i guess I can't forget lollipop. Lollipop is good. She is easily trained and I am SLOWLY getting used to her even though at times I get frustrated for having like another child in the house.
Thank you all. For those who we know and for the ones we have never met. Thank you!! oxoxoxo
Wednesday, July 1, 2009
It's a New Life
Wednesday, July 1st 2009
Happy Canada Day Everyone,
Today was a sad day for us. A year ago today, Jacob was riding a bike in my parent's driveway. We were having our tradionnal Canada Day BBQ. This year, my father can barely stand up without any help. He is frail and weak and it was also three years ago on this day that he started feeling ill. Jacob is still not able to eat so having a BBQ is out of the plans and it just wasn't the same.
its funny i got an email from an old friend who said i hope you are adjusting to your new life at home. I had never really thought of it that way but Chloe you are right. it is a new life. As much as i so badly wanted to come home and be a "normal" family again like we used to be i've realized its not going to happen. It is a new life we are beginning. Our past one does no longer exist. Things will never be the same. ever. Jacob has changed, he has become a new person and so have we. We are adjusting to our new life. A life of doctors, medications, mri's, appts, worrying and enjoying every moment we have together. so my dream of things being the way they were will never happen but i have no choice but to embrace this life that has now been given to us.
Jacob is doing well. He is still having a hard time with nausea and vomitting and well I wonder sometimes if this is the life that is ahead for him, a life of unexplained vomiting. is this the life he will have to adjust to or will it some day miraculously go away?
He is doing well, he is back to singing in the car when we drive....bopping his head to the music. He is more playful at times then he ever was. We are close, i feel it, we are closer to getting him better. We are extremely busy with appts. almost every day but that's ok. we keep saying its so nice to come home at the end of the day so will deal with it. Jacob had another hearing test. He definetely has permanent hearing loss but we are hoping it is manageable. I was really upset on monday when i realized that the last cycle in Montreal is what did it. For a moment i was angry at myself, at Jason for making us go to Montreal and damaging this child that had a chance. I was mad at opthamology for letting his eye go bad like they did. I was, once again, mad at the world. But it didn't last very long. I sucked it up as I always do and moved on. I am seriously still thinking of pursuing the eye clinic at CHEO. I am seriously considering filing an official complaint and suing. I feel this need to punish the people who damaged my child. I feel I owe it to Jacob. I owe him at least to punish the ones who should have taken better care of him but instead won't OWN UP to their mistake. Had they from the start owned up to their neglect. I wouldn't be so angry.
Liam is wonderful. He is a beautiful growing boy. no really, when i say growing...i mean growing...i think he is almost 15 pounds!!! lol I can't believe how chubby he is and I LOVE IT!!!! He is so playful and laughing all the time, it brings so much joy and laughter in this house.
Jason's mom is visiting from Newfoundland, Jason is happy to have his mommy here. I took her to play bingo last night! lol Tonight she is out with Jason at the Casino. Its nice for Jason and I to be able to go out, i hope someday we can go out together...i wonder sometimes if we ever will again... but really i don't care if we never leave this house again. I wanted the chance to be home again with my family and I am...what more can I ask for?
Hope all of you are well and again thank you all for your support.
Happy Canada Day Everyone,
Today was a sad day for us. A year ago today, Jacob was riding a bike in my parent's driveway. We were having our tradionnal Canada Day BBQ. This year, my father can barely stand up without any help. He is frail and weak and it was also three years ago on this day that he started feeling ill. Jacob is still not able to eat so having a BBQ is out of the plans and it just wasn't the same.
its funny i got an email from an old friend who said i hope you are adjusting to your new life at home. I had never really thought of it that way but Chloe you are right. it is a new life. As much as i so badly wanted to come home and be a "normal" family again like we used to be i've realized its not going to happen. It is a new life we are beginning. Our past one does no longer exist. Things will never be the same. ever. Jacob has changed, he has become a new person and so have we. We are adjusting to our new life. A life of doctors, medications, mri's, appts, worrying and enjoying every moment we have together. so my dream of things being the way they were will never happen but i have no choice but to embrace this life that has now been given to us.
Jacob is doing well. He is still having a hard time with nausea and vomitting and well I wonder sometimes if this is the life that is ahead for him, a life of unexplained vomiting. is this the life he will have to adjust to or will it some day miraculously go away?
He is doing well, he is back to singing in the car when we drive....bopping his head to the music. He is more playful at times then he ever was. We are close, i feel it, we are closer to getting him better. We are extremely busy with appts. almost every day but that's ok. we keep saying its so nice to come home at the end of the day so will deal with it. Jacob had another hearing test. He definetely has permanent hearing loss but we are hoping it is manageable. I was really upset on monday when i realized that the last cycle in Montreal is what did it. For a moment i was angry at myself, at Jason for making us go to Montreal and damaging this child that had a chance. I was mad at opthamology for letting his eye go bad like they did. I was, once again, mad at the world. But it didn't last very long. I sucked it up as I always do and moved on. I am seriously still thinking of pursuing the eye clinic at CHEO. I am seriously considering filing an official complaint and suing. I feel this need to punish the people who damaged my child. I feel I owe it to Jacob. I owe him at least to punish the ones who should have taken better care of him but instead won't OWN UP to their mistake. Had they from the start owned up to their neglect. I wouldn't be so angry.
Liam is wonderful. He is a beautiful growing boy. no really, when i say growing...i mean growing...i think he is almost 15 pounds!!! lol I can't believe how chubby he is and I LOVE IT!!!! He is so playful and laughing all the time, it brings so much joy and laughter in this house.
Jason's mom is visiting from Newfoundland, Jason is happy to have his mommy here. I took her to play bingo last night! lol Tonight she is out with Jason at the Casino. Its nice for Jason and I to be able to go out, i hope someday we can go out together...i wonder sometimes if we ever will again... but really i don't care if we never leave this house again. I wanted the chance to be home again with my family and I am...what more can I ask for?
Hope all of you are well and again thank you all for your support.
Sunday, June 21, 2009
Father's Day
Sunday June 21st, 2009
well we are back home and back to normal. we had a great father's day. we went to my parents and it was the first time we ALL had been together again in 7 and a half months. See, my family and I(composed of my parents, 4 sisters, 2 brother in laws, a fiance with two children and 5 grandchildren) still get together for EVERY single holiday, birthday, special occasions and our family had not been complete in the last 7 months until today. We had a beautiful day. I had a moment as i sat there and looked at everyone and realized this could be the last father's day with my father, as he is very ill at this time. I also realized this could be the last father's day with my son. Its things I think of. I don't want to, and I don't think about it all the time but at times, reality is, it may just be the last of everything.
As we were being discharged on saturday evening from CHEO, a mother of a boy who shall remain nameless came to our room to say goodbye. We had seen each other ALOT the last 6 months in 4N but only started talking to each other about two weeks before our departure to Montreal. SHe walked in and walked out just as fast as tears started pouring down. She couldn't control it anymore. I joined her. They had received some bad news about their beautiful beautiful boy and as we have also realized, there is just nothing else that can be done for our children. I followed her to the stairwell and we both said nothing. just cried. why? because we both knew that we may lose our babies someday and there's just nothing else we can do except love them with all our being. She asked me how we were able to make the decision of bringing Jacob home. I told her we just knew. I told her, her heart will know when its time to say enough and take her baby home and love him like there's no tomorrow. it was a moment that i could not and will probably never share with another mother who at that very moment could honestly say she knew exactly how I felt. She said she had so many questions for God. She said she wished she could sit one on one with God and ask him why. I myself, have stopped asking why. I am very sad. I am very angry. I dont understand any of this and will NEVER accept what has happened but i've stopped asking why.
This week, we have a hearing test, clinic visits, speech and eating therapy. It will be busy but once again we will start our day as a family. A family that will cherish forever.
Jason, Happy father's day. I hope you liked Jacob's gift. I am honored to be the mother of your children. You are the best dada ever. The love that you have for Jacob and Liam is beyond anything I could ever ask for in a husband and the father of my beautiful children.
Jason, mon mari, mon amour....je t'aime.
well we are back home and back to normal. we had a great father's day. we went to my parents and it was the first time we ALL had been together again in 7 and a half months. See, my family and I(composed of my parents, 4 sisters, 2 brother in laws, a fiance with two children and 5 grandchildren) still get together for EVERY single holiday, birthday, special occasions and our family had not been complete in the last 7 months until today. We had a beautiful day. I had a moment as i sat there and looked at everyone and realized this could be the last father's day with my father, as he is very ill at this time. I also realized this could be the last father's day with my son. Its things I think of. I don't want to, and I don't think about it all the time but at times, reality is, it may just be the last of everything.
As we were being discharged on saturday evening from CHEO, a mother of a boy who shall remain nameless came to our room to say goodbye. We had seen each other ALOT the last 6 months in 4N but only started talking to each other about two weeks before our departure to Montreal. SHe walked in and walked out just as fast as tears started pouring down. She couldn't control it anymore. I joined her. They had received some bad news about their beautiful beautiful boy and as we have also realized, there is just nothing else that can be done for our children. I followed her to the stairwell and we both said nothing. just cried. why? because we both knew that we may lose our babies someday and there's just nothing else we can do except love them with all our being. She asked me how we were able to make the decision of bringing Jacob home. I told her we just knew. I told her, her heart will know when its time to say enough and take her baby home and love him like there's no tomorrow. it was a moment that i could not and will probably never share with another mother who at that very moment could honestly say she knew exactly how I felt. She said she had so many questions for God. She said she wished she could sit one on one with God and ask him why. I myself, have stopped asking why. I am very sad. I am very angry. I dont understand any of this and will NEVER accept what has happened but i've stopped asking why.
This week, we have a hearing test, clinic visits, speech and eating therapy. It will be busy but once again we will start our day as a family. A family that will cherish forever.
Jason, Happy father's day. I hope you liked Jacob's gift. I am honored to be the mother of your children. You are the best dada ever. The love that you have for Jacob and Liam is beyond anything I could ever ask for in a husband and the father of my beautiful children.
Jason, mon mari, mon amour....je t'aime.
Saturday, June 20, 2009
Back in the Hospital
Saturday, June 20th 2009
Hi Everyone,
Sorry for the delay, things have been quite busy but fun at home. Thank you all for wanting updates. I know alot of you thank me for the updates but truth be told this is therapy for me to be able to write down all that is happening, good or bad. There's a comfort of some sort knowing that you all share my tears and smiles.
Well, we made it two weeks at home. Its been great. Jacob is still sick but enjoying every minute of being home. A few days ago we did see a bit of a change in him. More nauseous than usual, a little pale and well thrursday spiked a fever so here we are back at CHEO. He is doing well but was readmitted and put on antibiotics. Its to be expected I suppose, it has only been a month since his transplant. He is doing well however, still in good spirits. We are hoping its just a bug that he may have caught and will vanish as quickly as it appeared.
We are adjusting well. Between all of Jacob's medication to be given and all his appts, we are slowly getting a routine together. My house is still a mess and unorganized. My husband and I are still getting on each other's nerves but I am still loving it!!!! Oh and to add to our chaos, we got Jacob his puppy that was promised when he got home. Its a weiner dog!!!!! lol I wonder somedays if it was bought more for Jacob or Jason! lol Things couldn't be any crazier but boy i never thought i would love having a "normal" life again as much as i do right now.
The big news for this week. Jacob is now taking small sips of water. His swallowing is getting so much better and he scared the crap out of Jason and I the other day when he literally gulped down some flavored water from a bottle. You actually heard him swallow. We froze thinking he was going to choke but he followed his swallow with a big.....ahhhhhhhhhhhhhhhhh! OMG! we couldn't believe it. Shortly after he threw up. ALOT. everything he had drank but its then we realized that the biggest issue and hardest part of rehab will be teaching his stomach how to digest again, after all he hasn't had ANYTHING in his tummy in 7 months. We are very excited for him to start learning how to eat again. His first appt is on tuesday. I can't wait to come back and tell you all how he is doing.
Jacob may be back in hospital now but is doing well....just wanted to let you all know.
Hi Everyone,
Sorry for the delay, things have been quite busy but fun at home. Thank you all for wanting updates. I know alot of you thank me for the updates but truth be told this is therapy for me to be able to write down all that is happening, good or bad. There's a comfort of some sort knowing that you all share my tears and smiles.
Well, we made it two weeks at home. Its been great. Jacob is still sick but enjoying every minute of being home. A few days ago we did see a bit of a change in him. More nauseous than usual, a little pale and well thrursday spiked a fever so here we are back at CHEO. He is doing well but was readmitted and put on antibiotics. Its to be expected I suppose, it has only been a month since his transplant. He is doing well however, still in good spirits. We are hoping its just a bug that he may have caught and will vanish as quickly as it appeared.
We are adjusting well. Between all of Jacob's medication to be given and all his appts, we are slowly getting a routine together. My house is still a mess and unorganized. My husband and I are still getting on each other's nerves but I am still loving it!!!! Oh and to add to our chaos, we got Jacob his puppy that was promised when he got home. Its a weiner dog!!!!! lol I wonder somedays if it was bought more for Jacob or Jason! lol Things couldn't be any crazier but boy i never thought i would love having a "normal" life again as much as i do right now.
The big news for this week. Jacob is now taking small sips of water. His swallowing is getting so much better and he scared the crap out of Jason and I the other day when he literally gulped down some flavored water from a bottle. You actually heard him swallow. We froze thinking he was going to choke but he followed his swallow with a big.....ahhhhhhhhhhhhhhhhh! OMG! we couldn't believe it. Shortly after he threw up. ALOT. everything he had drank but its then we realized that the biggest issue and hardest part of rehab will be teaching his stomach how to digest again, after all he hasn't had ANYTHING in his tummy in 7 months. We are very excited for him to start learning how to eat again. His first appt is on tuesday. I can't wait to come back and tell you all how he is doing.
Jacob may be back in hospital now but is doing well....just wanted to let you all know.
Friday, June 12, 2009
It hit me all at once
Friday June 12th, 2009
I write to you all tonight as my son sits on the floor in his room playing with his best friend Pat. I just finished a chuckle out loud with Jason after one of Jacob's funny smart comments he always makes. My baby is back. Maybe not a 100% but his sense of humour, his laughter and his smarts are back.
I am very overwhelmed tonight. Overwhelmed with happiness from being home, overwhelmed with exhaustion and overwhelmed with how much organizing there is to do here. I was sitting on my deck earlier, what a beautiful evening it was and I just started to cry. I felt very nolstagic. Must be the weather but all of a sudden I got a flashback of going for a drive to Dairy Queen with Jacob and Jason and realized i can't do that anymore. I am SOOOOOO happy Jacob is home, you have no idea but it hit me at that moment that i wish things werent how they are. It hit me that my son has cancer, it hit me that he is sick, it hit me that we can't have bbq's anymore, it hit me that i just went through an entire pregnancy and that i had a baby as I here Liam crying from is swing. It all just hit me tonight. After having Liam i knew i couldn't take a break. I knew if I stopped, even for one moment I would crash...so i kept going. it almost happened tonight but as I here Jacob's laughter in the background with Pat being silly and crawling on the floor i take a deep breath and remind myself.....One Day at a Time.
Last night, Jacob and I had a little emergency visit at CHEO. No big deal but as we were changing his shirt we noticed his dressing for his central line was off and exposed. It was a bit scary but we quickly headed to 4N at CHEO and they welcomed us with open arms and took care of him very quickly. Thank you Kim, Jill, Shamila and Pat. Upon returning home Jacob thanked us as we tucked him into his bed. He said "mama, dada, thank you for listening to me and bringing me home". I couldn't hold back the tears. I turned around and thanked Jason for letting us bring him home.
Jacob is doing great. So are we. we are tired but i think Jason pauses at times just like me and just can't believe we are home.
we are home!
I write to you all tonight as my son sits on the floor in his room playing with his best friend Pat. I just finished a chuckle out loud with Jason after one of Jacob's funny smart comments he always makes. My baby is back. Maybe not a 100% but his sense of humour, his laughter and his smarts are back.
I am very overwhelmed tonight. Overwhelmed with happiness from being home, overwhelmed with exhaustion and overwhelmed with how much organizing there is to do here. I was sitting on my deck earlier, what a beautiful evening it was and I just started to cry. I felt very nolstagic. Must be the weather but all of a sudden I got a flashback of going for a drive to Dairy Queen with Jacob and Jason and realized i can't do that anymore. I am SOOOOOO happy Jacob is home, you have no idea but it hit me at that moment that i wish things werent how they are. It hit me that my son has cancer, it hit me that he is sick, it hit me that we can't have bbq's anymore, it hit me that i just went through an entire pregnancy and that i had a baby as I here Liam crying from is swing. It all just hit me tonight. After having Liam i knew i couldn't take a break. I knew if I stopped, even for one moment I would crash...so i kept going. it almost happened tonight but as I here Jacob's laughter in the background with Pat being silly and crawling on the floor i take a deep breath and remind myself.....One Day at a Time.
Last night, Jacob and I had a little emergency visit at CHEO. No big deal but as we were changing his shirt we noticed his dressing for his central line was off and exposed. It was a bit scary but we quickly headed to 4N at CHEO and they welcomed us with open arms and took care of him very quickly. Thank you Kim, Jill, Shamila and Pat. Upon returning home Jacob thanked us as we tucked him into his bed. He said "mama, dada, thank you for listening to me and bringing me home". I couldn't hold back the tears. I turned around and thanked Jason for letting us bring him home.
Jacob is doing great. So are we. we are tired but i think Jason pauses at times just like me and just can't believe we are home.
we are home!
Tuesday, June 9, 2009
Let the Healing and Living Begin!
Tuesday June 9th, 2009
Well, I think its time for an update. Wow! thank you everyone for your support and for all those who judged...as some of you said...shame on you!! As Carol Bean put it in in her poem "I Hope"...I hope you never have to experience any of these things...Because...only then... Will you understand.
Day 4 of being home and well remember when I said i would do anything to go back to my old routine, well, my house is a mess, i have two children who cry and whine at the same time and who want everything as soon as they ask for it, my husband and I are getting on each other's nerves trying to get the house organized and well....I LOVE IT!!! :) :)
We are not quite there yet and we have a long road ahead of us but I am happy to say Jacob is doing as good as we can ask for. Busy week this week with many appts at CHEO but the best part is we get to come home. Jacob is still sick at times with vomiting and tummy pains but it is manageable and i am loving tucking him into his bed every night. Its what every mother dreams of but you don't realize just how much until it is taken away from you.
So many of you sent me inspiring messages and that is what gets me through the days knowing we have so much support and so much love and thoughts coming Jacob's way. You all have been such a wonderful support system for Jason and I and we are thankful.
This week was doctors appt and next week we start therapy for his legs and well the most important part...help him learn how to eat and drink again. I am scared but looking forward to it. The Christmas tree came down yesterday. It wasn't quite the xmas in july we planned since he is still not eating but the deal was the tree stayed up til he came home and well...he came home. I still can't believe i am writing these words. I never thought we would make it here and the thought of still being in Montreal had we not decided to come home makes me literally sick to my stomach.
there's no looking back now....as Heather Lindsey put it...
Let the healing, and the living begin!!! :)
Well, I think its time for an update. Wow! thank you everyone for your support and for all those who judged...as some of you said...shame on you!! As Carol Bean put it in in her poem "I Hope"...I hope you never have to experience any of these things...Because...only then... Will you understand.
Day 4 of being home and well remember when I said i would do anything to go back to my old routine, well, my house is a mess, i have two children who cry and whine at the same time and who want everything as soon as they ask for it, my husband and I are getting on each other's nerves trying to get the house organized and well....I LOVE IT!!! :) :)
We are not quite there yet and we have a long road ahead of us but I am happy to say Jacob is doing as good as we can ask for. Busy week this week with many appts at CHEO but the best part is we get to come home. Jacob is still sick at times with vomiting and tummy pains but it is manageable and i am loving tucking him into his bed every night. Its what every mother dreams of but you don't realize just how much until it is taken away from you.
So many of you sent me inspiring messages and that is what gets me through the days knowing we have so much support and so much love and thoughts coming Jacob's way. You all have been such a wonderful support system for Jason and I and we are thankful.
This week was doctors appt and next week we start therapy for his legs and well the most important part...help him learn how to eat and drink again. I am scared but looking forward to it. The Christmas tree came down yesterday. It wasn't quite the xmas in july we planned since he is still not eating but the deal was the tree stayed up til he came home and well...he came home. I still can't believe i am writing these words. I never thought we would make it here and the thought of still being in Montreal had we not decided to come home makes me literally sick to my stomach.
there's no looking back now....as Heather Lindsey put it...
Let the healing, and the living begin!!! :)
Saturday, June 6, 2009
We are Home!
Saturday June 6 th, 2009
Good Evening everyone and what a good evening it is. I am writing to you all tonight from 116 Lamoureux Gatineau, QC, OUR HOME!
We brought Jacob home today. To stay. Yesterday, Jason and I made the mutual decision to stop treatments and bring our baby home. NO MORE! No more treatments, no more chemo, no more antibiotics. Jacob was done and we followed our gut and listened to what his body was telling us. People can judge all they want, but you have no idea until you walk in these shoes.
There are many factors that brought us here and it was not an easy decision to make at first but the risks were too great and we just weren't willing to take that chance anymore. If Jacob comes out of this barely able to function in life then this "study" is not worth my son's life. We felt great yesterday, it was like a ton was lifted off our shoulders, we feel even better today.
I have been trying to put into words the last couple of weeks how I was feeling and I just couldn't. When CHEO found out we were coming home one of our wonderful team leader sent me an email and told me a story about this woman who 20 years ago did the same thing and stopped her son's treatments. She said to her "I'm not afraid of my son dying anymore, I am afraid of him not living and then dying"....OMG! that's it!!! that's exactly it, if I could have put into words it says exactly what my gut has been feeling all along. I have accepted the fact that I may lose my child someday but i'll be damned if he goes like this. I want him to live life to the fullest.
So there you have it....we are back home and giving Jacob the chance to live. We are very excited about starting rehab and help him walk again, EAT again, run again and go to school like any 5 year old should!
I look forward to letting you all know how he is doing.
Oh and by the way...the doctor's exact words to us before she walked out of the room after we told her we were done were....
"I think you both made the right decision".
:)
Good Evening everyone and what a good evening it is. I am writing to you all tonight from 116 Lamoureux Gatineau, QC, OUR HOME!
We brought Jacob home today. To stay. Yesterday, Jason and I made the mutual decision to stop treatments and bring our baby home. NO MORE! No more treatments, no more chemo, no more antibiotics. Jacob was done and we followed our gut and listened to what his body was telling us. People can judge all they want, but you have no idea until you walk in these shoes.
There are many factors that brought us here and it was not an easy decision to make at first but the risks were too great and we just weren't willing to take that chance anymore. If Jacob comes out of this barely able to function in life then this "study" is not worth my son's life. We felt great yesterday, it was like a ton was lifted off our shoulders, we feel even better today.
I have been trying to put into words the last couple of weeks how I was feeling and I just couldn't. When CHEO found out we were coming home one of our wonderful team leader sent me an email and told me a story about this woman who 20 years ago did the same thing and stopped her son's treatments. She said to her "I'm not afraid of my son dying anymore, I am afraid of him not living and then dying"....OMG! that's it!!! that's exactly it, if I could have put into words it says exactly what my gut has been feeling all along. I have accepted the fact that I may lose my child someday but i'll be damned if he goes like this. I want him to live life to the fullest.
So there you have it....we are back home and giving Jacob the chance to live. We are very excited about starting rehab and help him walk again, EAT again, run again and go to school like any 5 year old should!
I look forward to letting you all know how he is doing.
Oh and by the way...the doctor's exact words to us before she walked out of the room after we told her we were done were....
"I think you both made the right decision".
:)
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