Thursday, 1 May 2008

Still Here Battling Along...

Hello my friends, yes I am still here, I guess that is the good news, right? I have had a strange week so far this week. It began with a burst of energy on Monday, so much energy that after weeks of barely being able to lift a finger, I was cleaning and organizing our home, washing and getting things dried like a dervish, even got out down to the supermarket and did a big grocery shop! I not only cooked the evening meal but also prepped one for the next night, sorted out my sons bedrooms after weeks of having things put in the wrong places and in some cases just thrown haphazardly wherever. So, what was this phenomenon? I don't know. Sorry, but I don't. It hasn't lasted that's for sure. Tuesday was not near as productive and Tuesday the pain had increased which didn't help my state of mind. Terrified of that pain coming back!

Anyway the strange thing and really the thing I feel guilty about is that I felt really good on Monday morning, as I have said, and I kept Jack home from school with me. I didn't intend to, I did intend to let him sleep a bit late as he hadn't gone to sleep easily the night before. So I thought that I would let him have a bit of a sleep in and take him to school in time for morning recess. Well, it didn't happen. I just didn't want to take him and he didn't want to go and I just couldn't, it was as though I was paralyzed. Anyway, I went with it, with a mild feeling of guilt, but I overrode it with 'oh just one day while I feel good I just want to be with him'. Then Tuesday comes, same thing happens. Mum even rang me in the morning to see whether I wanted her to drop Jack off for me, so I didn't even have to go out, although I prefer to drop him off myself anyway but when I am too unwell she does it for me. I told her no thanks, I'd be fine and didn't mention to her that I hadn't gone the day before. Again, I got his lunch prepared, his uniform all laid out ready to put on, etc, etc. It came time to wake him up and I went to wake him and just couldn't. I just couldn't do it. I walked out of his room and though 'oh well, I'll take him today at recess time.' Didn't happen again! Well let's just say that today is Thursday and Jack and I have had the best day at home, making homemade playdough in all colors, doing 'school' work together, reading, just talking and laughing and having FUN. Life is way to short for me to get so stressed out about this and yet I did. I beat myself up for it and berated myself for being a bad, irresponsible Mother. And then I thought about the fact that my Specialists (including one yesterday) have told me that I am lucky to still be here, by all accounts I should already be dead. So, Jack is staying home with me all this week. We will do school work, we have been and will continue to do so over the weekend and we will visit with each other, have quality time with each other and I am not going to let guilt ruin it for me. The kids at school are all swimming this week which wouldn't have been good for Jack anyway as he just got over a nasty cold from the previous week, by the time they got back he would have had an hour and a half with the class and then time to go home anyway. I don't think I'm very popular with the teachers though, still, walk a mile as they say. Sometimes I wonder whether I should keep him home for an entire 12 months and just be with him and do things with him when I can. The only reason I don't do that is that I don't want things to be harder for him when I'm gone. If he has been used to spending all his time with me then it must be so much worse for him afterwards. At least if he stays at school and has his own life a bit it may not be such a loss. Even as I type those words though, they sound so very lame. No matter what I do, it is going to be an horrific loss for him isn't it. I honestly don't know what the best thing to do is. Is it to just spend as much time as possible with him and perhaps do home schooling? But I won't be well enough to do that so who am I kidding, no easy answers are there? I realize I am asking so many questions here that probably can't be answered. If anyone feels they have a solution please don't hesitate to share it with me. I'd be really interested to hear what you think, or what you'd do if (Heaven forbid) you were in my position. Maybe the best I can do is just keep him home sometimes and do fun things when the opportunity arises (or I make the opportunity arise) and let him go to school when I am not well and can't look after him properly, then he is better off out in the world learning and playing. If we get an opportunity to go away sometime then we go and just try and live that way, making the most of whatever comes and making the most of the days when I am 'well'. I can do a lot of homework with Jack so that hopefully anything he misses at school he will make up for at home.

Anyway, as you can see I am a little confused lately. I am starting counseling with Jack, very slowly starting to learn about how I can prepare him for my passing. I do believe that I have a gift in the fact that I have time before I die. If I died suddenly then there would be nothing I could do but to have some time before hand is something that I believe you have to look at as a gift and use it wisely, so I want to learn the best possible ways I can help Jack deal with this terrible thing. I have spoken to the staff at Hospice who offer this sort of counseling and they have seen the results. They are extremely confident that children do bounce back as long as they have the right support. That is key, the right support. I want that for Jack and he is entitled to it now, during and after. I just have this feeling in my gut that I need to start preparing him in some small ways. I am meeting with one of the counselors in two weeks time. Okay my dear friends, thanks for letting me talk this out, as always I so appreciate your comments and emails and support, thank you, I hold you so dear. Jen B.


  1. Time is precious. Just trust your gut, I think, and do what's right for both of you. Does it need a grand plan? I think just taking it day by day, like you've done, is just fine -- you felt good, you wanted him home with you that day, that week. Who could argue with that?

    Teachers are all about structure, which is fine, but sometimes life's urgencies, life's loves, call for throwing structure out the window for awhile -- so don't worry about them or anyone else judging you for your decisions.

    He has years and years of school ahead of him. A day or two here - even a week or two there - will do him absolutely no harm.

    When your son reflects on this time 5, 10, 20 years from now will he think about or even know what he missed at school? Very unlikely. No, he'll remember that he had some very special days at home with his mum.

  2. I think it is absolutely positively wonderful that you kept Jack with you. Do this whenever you feel well unless it upsets him, is my advice!!

    I am glad that you had a good Monday - here is wishing for many many more like that.

  3. Oh, don't feel guilty! (Easy for me to say, isn't it.) He will miss nothing in school that he can't learn later, but he only has you NOW. Spend every second together, I say. And ENJOY those days together, do not, do not, DO NOT feel guilty about it!

    I know that he will remember these special days with you a lot more than he will remember anything he is learning in school right now.

    Here's to more and more and more GOOD days!

  4. Now you know why you body was forcing you to rest. You needed it.
    Trust your instincts - talk to his school and work out a combined program so he can study with you some days and be there others. Maybe even talk to Distance Education for guidelines. This time is important for both of you and as long as Jack has plenty of social contact with other kids - formal schooling is secondary.

    Don't feel guilty - I would do the same if it was me.

    Take care special lady!
    love and prayers
    Karen xx

  5. You have done exactly what any of us would have done. You trusted your instincts, kept him with you and made the most of your feeling well time. His teachers can't really think wrong of you. They are teachers, they love children, they must also know that they would do exactly the same thing you are doing if they were in the position. So, have a meeting if you think it makes you feel better. Just let them know that it isn't a permanent situation, he's just going to be missing some time when it feels right. A mother's intuition is a very powerful thing, trust it, do not doubt yourself. Beautiful pictures of your beautiful boy! Anne

  6. I would do the same you are doing. Treasure the time you have with him, create memories that are going to last him a lifetime. He is so young, school is always going to be there for him. Sending you lots of prayers!

  7. I would do the exact same thing you are doing with my children if I was in the same position as you. Your son is young enough that they can miss a week of school or MORE! and still bounce back. I think if he was older then that is when it gets harder to pull them out of school. He will be just fine and he will remember your time with him. He can always go to school.. he might not be able to always spend time with his beloved mom. I might even pull him out of school every day I felt good enough to have him around....I would do things exactly as I wanted. Its your time to be selfish with out any guilt!!!!!!!!!!!!! And its your son and your memories together. I think its just as important as school or MORE! Jen you really are an inspiration and have helped me look at my life. Thank you!!!!! Jennifer

  8. Hi Jen, I just wanted to say what an absolutely wonderful mother you are, please don't feel guilty, you are doing exactly what I would do in your shoes, and a million other mums too, I bet.

    I agree - speak with the school, so they understand why he is missing some time here and there, they will be a great support as well, I'm sure.

    What a gorgeous little boy you have! I love the pics. Thank you for sharing. You are an inspiration!!

  9. Jen~

    Kids are taken out of school so often for family vacations, and other family events that are important, but not near as important as the reasons you have kept him out this week. It is the best decision!! You ARE thinking are setting the priorities and you are doing it with your heart!!! Bless you for doing that!

    You are making life long memories for the love of your life. He will never forget these times with you, and that is SO important.

    If you always had the energy you had on Monday, I would say YES keep him home every day!! Homeschool...let life be his teacher, but it sounds like not all days are like that. So here's what I think I would do(I humbly offer this knowing only you know what it is like right where you are at, and I can only *imagine* what I would do in your shoes)...keep him home on your best days. Soak him up, and allow him to soak up your love. On the days when you are tired, and weak, then he will have a safe, structured place to be. He doesn't even have to know it's a good day/bad day thing...would that be a possibility?

    I will pray for you as you make these decisions!

  10. Oh Jeni,
    you are doing exactly the right thing, in the moment. Maybe tomrrow will call for something different and you will do different. But for now, the opportunity comes and you seize it. Yes routine and structure is good for kids. But so too is mom. And there are ALWAYS exceptions.
    Just keep listening to yourself, as you are already doing.
    He is loved. this is what he will know, remember.
    In whatever ways you go about preparing Jack for your death, know that I am here. This is painful territory. you are walking it as warrior.
    Love to you.

  11. I love You So!! That is repeated over and over as listen to, and sense all of the loving wonder that is You. AndYOU is what Jack will always treasure and adore. You, your Love, your Laughter, your Courage under unyielding threat and pain, all that is You. I celebrate your Gift of You to your son ... his present ... and all of his future. Please allow him to know of and understand your concerns about his regular schedule ... and his responsibilities. And do him the honor, and respect of asking his preferences and choices. Then honor them and help him learn how to have the integrity to stand up to influences that would deny personal choice in life. This is yet another Gift that You, My Sweet Darling Jen, can give Jack. He will always remember the unity of your decisions made together. And will take eternal pride in your confident trust and respect for him in including him in your choices and decisions.

    You have (CONSTANTLY) all of who I am in Spirit, Soul, and BEing absolutely as YOURS!

    I Love You Jen!

  12. Dear Jenni,
    What a beautiful batman! And your scrapbook is wonderful and glows!
    You're always in my prayers. Think about the angels my dear they can lead our lives.
    Sending love,

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  15. Hi Jen. I'm happy you've had this time with Jack. I think it is wise to keep him in school, as he'll have his friends and teachers and a sense of normalcy on the days you are not feeling well. Also, your mum and Jamie can take him to and from school on the days you are in hospice. He'll have "normal" days when you can't care for him.

    I think it is great to keep him home on the days you are feeling well. He will get so much more from you those days and you will truly be able to enjoy each other.

    Just my thoughts. You go wtih your instincts though. My love and thoughts are with you.


  16. Your son is a beauty. Those eyes!

    Toss the guilt, Jen. Savor your time with Jack.

  17. Time is more important than anything he can ge tin school right now. It seems you have the right idea to seize the moment on one hand and to keep him involved outside the home on the other.

    Your making memories, that will always be with him.

    Dearest Jeni, I am glad youhad a good week with him, let go of your guilt. (((hugs)))

  18. you keep that boy with you as much as you want. dance, laugh, paint, jump on the bed, jump in the pool with all your clothes on, have a good food fight, and make music.
    toss your guilt to the wind my sister....and enjoy!

  19. I am mostly a lurker here but do check on you often to see how you are. Your writing is powerful and I find you amazing for sharing your fight. I did have to delurk today to say WAY TO GO on keeping your son home with you when you felt good. He will do fine in school - but I think it is wonderful you spending any moment of quality time you feel good to be with him!!!!

  20. Jen,

    What a beautiful boy Jack is! I think you are handling it perfectly--letting him stay home a little bit to be with you. I absolutely would have done the same thing. You are creating memories for him.

    Thinking of you always....


  21. Time spent with you sounds like a perfect education. School is not all it's cracked up to be. Spend as much time together as you please.

    The counseling sounds like a wonderful idea. Take care sweetie, sending you hugs and prayers.

  22. That first picture of him in the sunglasses is priceless! Of course you'd want to spend as much time as possible with your beautiful boy. And your desire to give him activities and connections beyond your relationship is so loving. It sounds like you're walking a very fine line with grace, awareness, and love. What more could a child--or any of us--ask for?

  23. Dear Jen,
    I think that you have done the right thing ~ letting your son stay off school with you.

    I lost my Dad in 1994 to cancer and I am forever grateful for the fact that we had time together and were able to say goodbye properly (not that I was ever ready for goodbye), my sister and I made memory boxes with my dad, with photos and letters and memories of time we spent together. My dad also wrote me letters and cards with funny little reminders on them of things we had done together ~ or things I did as a child (some I never even knew about!!)..and they were there for me to open after he had passed ~ it was a bitersweet experience, but one that I am glad I had.
    Make as many memories as you can for your son, and if that means him having time off school ~ then so be it. As you said, life is too short to worry about it.

    Jen, you are so special and I think about you every day and send you love and hugs ~ from my heart to yours.
    Take care my friend,
    love Tabitha XX

  24. Hi Jen,

    We have never meet but I found your blog and wanted you to know that I am praying for you and Jack. Hospice is a wonderful program and they do have great therapy and books even the youngest children.

    Take care of yourself,
    De Anne B.

  25. I just finished reading your post, and Oh My Goodness -- don't feel guilty!!! If it were me, my girls would be home with me every day possible. Hold him and love him -- and be loved in return.

    That's what matters. And he is learning: there is more to learning than you get in school (and I'm a teacher so I feel confident saying that!)

    My thoughts, and prayers, and wishes of strength are with you.

  26. So happy to hear that you have had an amazing week, and what a better gift to give your son than to show him that he is the most important thing in your life and how valuable that time is. Don't feel guilty, you both deserve that.

    I would like to think that I would want to find the balance between school for my boy and time with me, and probably keep him home a day or two a week for the good days and continue the school part time to keep some normality - which will make it easier for him when you have bad days. But in all honesty, I think I would have a hard time letting him out of my sight, and I believe I would do the guilt thing, but I would most likely want to keep him as close to me as possible when I was able!!! What is more precious than this time - follow your heart!!!
    Do what you need to do as this time is as important for you and him!! So good for the soul!!
    Keep strong.
    Lots of prayers
    Nicky from Canada

  27. Jen, I love reading your words. You are such a stronge woman. I believe you did the right thing. Each good day is agift. Keep him close when you can. His teachers will have to understand how precious this time is for both of you. His a beautiful boy. Blessings to you and your entire family.

  28. Jen,

    I teach 3rd grade and when kids in my class are gone, I sometimes think it will be hard to catch them up, or worry that we learned something they will completely miss. But in the end, it really doesn't make that much difference. What really matters is what your son learns from you-how loved and treasured he is, and you strong you are. Keep doing what feels best for the two of you.

    Can you talk to the teachers and explain? I can't imagine anyone who would not be fully supportive of you and your choices. Even if they don't approve, he's yours, and it's your decision to send him or keep him home. Do what feels best, and don't let guilt enter into it. Everything you're doing is exactly right.

  29. All I can add is more of this, that you're doing it all right, that your understanding that time, the time you have with Jack, is a gift. I am so glad you're meeting with a counselor with him - that is an amazing gift, too, that so many adults would be different for having had, whether their parents are still living or not. He will know, he knows, how much you love him and love life. And yes, what a beauty. Thanks for the additional pictures - I loved them. Always sending love, xo Jena

  30. Spot on Lana and nice to hear from you too! I think day by day will be just fine for us. Take care.

    Thanks Susan, I think everyone is on the same page with this one. I am glad I put it out there because now I feel so supported in the choice I made. Take care x

    Dearest Nancy, I love your passion about this. I will NOT feel guilty for another moment I promise. Thank you darling.

    Gorgeous Karen, you are always so supportive, thank you honey. I'm glad to here everyone thinks I did the right thing. x

    Dear Anne, I think you are right, I'm sure his teacher will understand when I sit down and explain. If she doesn't agree well too bad quite honestly, because I do have to do what I feel is right and I will never be able to get back time lost with Jack whereas he will be able to get extra tuition if needed. Hugs to you xx

  31. Thanks Ileana, appreciate the support and prayers a lot. Take care.

    Dear Jennifer what a beautiful comment and compliment, thanks so much and I completely agree with you. Take good care Jen xx

    Thanks girlabouttown, you are a darling. Hugs Jen x

  32. I would do the same. Jack will learm more in his time with you than he would in any classroom.

    I admire you so much lady.

  33. Hi Jen,
    Thanks for sharing such great pics - Jack has amazing eyes. Clearly a fine soul, that boy!

    It sounds so wonderful that you have had some good days and it's really lovely that Jack got to spend some good, fun, quality time with you. Don't feel guilty and do trust that what you're doing is right... you'll know when it's not. Jack will have lots of time for school and yes, going to school regularly will give him structure and routine that will be comforting - but for now, these precious days are ones to cherish and are best spent with his mum when she's feeling cheery and good!

    I hope you have more lovely Mondays - what a great gift, that wind of energy.

    Take good care and keep up the good work! You're still here for a reason :-) and for that, we're happy!!

    Love from California~

  34. Jen, I have a 14 year old daughter that has never gone to school. She has been homeschooled all her life. And my 11 year old son is in school this year as a 6th grader after being at home until this year, but wants to come back home next year - so I know I am biased towards spending endless hours with our children. But still...

    Here's what I think: You can never spend too much time with your son. He's six - he's not learning nuclear physics yet! You are his best teacher, most loving and caring teacher, and he will learn exactly what he needs to learn at the exactly precise moment.

    No one will ever be able to replace this time or give it back to either of you. Keep him near you as much as you can. Love him, walk with him, talk to him, cook with him, sit with him, read to him, give him all the love you can muster as often as you want to. And let him sleep as long as he needs to.

    None of us have forever with our children, not even those of us who aren't battling against cancer. We must all be careful to give the most time, love, and attention we can to those that have been given to us to parent. What blessings you are giving him by giving him more of yourself and your time.

    Peace to you and lots of fun with your son, too.

  35. I love that you are taking the days with jack as they come. I think your decisions to let him stay home with you to make playdoh are the best ones. Etching into his heart the days spent with you is the best thing you can do. Keep following your heart.
    This is what's now and what's true...your time with your son and his time with you. No guilt, just the present moment of togetherness.

  36. Ok anonymous, I think that's a great idea, he doesn't have to know at all that it is based on a good day/bad day thing. Thanks for your thoughts on this. x

    Dearest Bella, I love your words and I thank you for them. Love to you my friend xx

    John-Michael, I thank you for your words and the passion you share, I agree he can learn so much from his mama about love and we are making precious memories. Thank you and take good care. x.

    Bete thanks for the compliment on my scrapbook, I just love scapping and it's a good way of keeping the memories. Thanks also for your support my friend. x.

    I totally agree Danielle and thanks for your thoughts on this, I appreciate it. x.

    I am 'tossing' the guilt sheshe and savouring my time with my boy. x.

    Dear Bridge, thanks so much for your kind words, I agree, structure some days others home with mum for fun and games. x.

    Dear Amy, those things sound such fun, only problem with the one about the pool is we don't have a pool hmmm I'll have to improvise.. Hugs to you xx

    I am so glad you 'delurked' Keri and thanks for your words I appreciate it, I hope to hear from again occasionally???? please...

    Dear Annie, I'm glad you think I'm doing the right thing and thanks for your thoughts on this. Take CAre xx

    Thanks so much Deb, I appreciate it. xx

    Thanks Jennifer, I am trying to do the right thing that's for sure. Take Care xx

    Dear Tabitha, thank you for sharing a very painful story with me, I am sorry to hear you lost your father but I thank you for letting me know how much it meant to you to have those memories and things left behind for you afterwards. This is also what I want to do for Jack. Thanks again Tabitha I truly appreciate this. Take care Hugs Jen xx

    Thanks for the prayers De Anne, appreciate it. xx

    Thanks for your thoughts Lynn, appreciate it a lot, xx.

  37. Go with your gut! Don't waste one second of your time feeling guilty. As Jack's Mom, you know what's best for him. Do it.

    Hugs sweet friend!

  38. This post brought tears to my eyes as I imagined the struggle you are facing.

    I admire you so much. I can feel your strength and love for your family in every post you write.

    I think that both of you should soak up every second you have together. I am sure when he looks back on these years he will treasurer every single memory of his darling Momma.

    Love to you.