Mothers with school aged children
Comments
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kjones cute kids. That's one of the nicer Elsa costumes. Cat photobomb is classic. I'm sure your kiddos hass fun too.0 -
My little boxtroll.
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churlicious cute costume my son brought a friend along that had a mine craft head made out is a box.0 -
my son is obsessed with minecraft! Cute box troll
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On of my 14 year old sons asked me where my eyebrows went...(I didn't color them in today)...
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Hello Moms,
I so love the photos you share. I'll share one of my 16-yr-old.
His report card today had 2 F's, 1 D, 1 C. :-(
A teacher called me last week to say my son had told a classmate there's no reason to do well in school if I'm not going to be around for him when he's in college. Maybe he didn't mean it but the fact that he said it hurts. We don't have much of an extended family, and I worry where he will consider his home when I'm gone. My girlfriends have promised to be surrogate mothers to him. But he won't have me.
My pain has me thinking the thoughts I don't want to think about.
My son sees me hurting and it scares him. I'm switching from morphine back to fentanyl patches. My body built up a resistance to morphine and even doubling the dose didn't touch my pain. I hate for him to see me like this. Not yet.
We both love BMWs. I wish I could buy him a new one to drive, the could have it his entire life, after I'm gone.
Wishing pain free happy days to all you moms.
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Check out the website for Thru My Eyes. It is a service to parents with a life-threatening medical condition, who have a child/children under 21. They make "legacy videos" that you can leave for your family. It took me months to get up the courage but I finally did it yesterday and I am so relieved. A therapist interviews you about your history, your childhood, family, children, etc. and they edit and send you a cd free of charge. They will come to your house if you live in the NY metro area, and they will conduct the interview via Skype if you don't live in the area. Having a reason to do this is horrible but they treat you in such a way that makes you comfortable and very at ease. I didn't even cry while making the video!
www.thrumyeyes.org
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tarheelmichelle--wow...I even felt that punch. Hard to hear. Sounds like he is in need of a good ole heart to heart. Tell him what you want for him out of life.
When I was a sophomore in college, I called home and cried to my dad every day. He was in heart failure and he doctors gave him a 30% chance to live. I wanted to quit and come home. He told me that no matter what happens, he wanted me to stay in school and graduate. He told me that would make him the happiest. I know he was being honest. One, he wouldn't want me to see him suffer. Two, he values education more than anything else. That may not be the case for everyone.
I know you two are very close. You cannot dismiss how he is feeling. Maybe it's time for some extra support for him. Does his school have a good counselor or social worker! Look for "LPC" or "LCSW" after their name. If not, the school may have a contract with an outside agency in which a therapist comes to school a couple times a week to see clients. Ask the school counselor for a referral.
I know this is breaking your heart. I am so sorry you are in so much physical pain and emotional pain. Know that I am praying for you guy's. keep us updated, if you can. Sending love!
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tarheelmichelle,
So sad to hear that your son is having such a hard time. At the same time, it's so touching that he is so close to you. My son had a really hard time last year after I was diagnosed. He's also 16, a tough time of life no matter what. He has been seeing a therapist. Not every week because it's tough during soccer season, but when he can. I don't know what they talk about but I have seen a gradual improvement in his attitude and he always seems happier when I pick him up from a session.
I have a friend who is also Stage IV and she's also in the position where, when she goes, her son will have no other direct family. He will have a stepfather and step siblings who are much older. Her parents are both gone and she has no siblings either. She set up a trust for him with specific instructions about what trust money can be used for, education, heathcare, etc. Once he is 35 those restrictions will be lifted. Something to think about.
So sorry to hear that you are in a lot of pain. I'm sure, like me, you're determined to make it at least until high school graduation. Hopefully we will even see college graduation!
Big hugs, Susan
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Tarheel- my heart aches for you. Mu heart aches for your son too. I used to teach and would see kids going through so much. Definitely have that heart to heart about what's going on. His getting bad grades might impact your ability be there for graduation and college. Statistics say we women often set goals in our heads to make it to certain event. And we miraculously pull it off, no matter what the desease.
I wish you both luck and will be praying for you often.
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Tarhee- What a handsome young man. This brought me to tears. I have 2 little boys and I want so badly for them to go on and live and love. We even have had the talk about my hubby moving on from me and that is OK. It all just sucks. I think the ladies who commented above gave some good ideas.
I'm trying to wean off fentynal. I'm getting acupuncture and nerve blocks are next. I did the first from 75mcg to 50 mcg and it sucked! I had no idea it would effect me so much. Blah!
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TarheelMichelle,
What supports can he get at school? My son (15) also hit the wall with anxiety and despair about a month ago. He could only make it to about 11ish, and then the panic attacks would start.
The school has been fabulous. He started on a modified schedule. Three credits at school and then he comes home for the other two credits with a school provided tutor. The school also pointed me towards a great therapist - well, he needed to be under care to receive the modified schedule.
If your son were here, he would be eligible for in-school counseling and academic assistance. Are those supports available in your system? I know you and he are hurting, and when a bright kid expresses those feelings and brings home grades like that, he really is in pain, and it is the school's obligation to help him.
I hate cancer the most when it damages my kid. Me, I can take it, but don't mess with my kid.
Hugs from upstate NY,
Jennifer
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hugging all of you beautiful ladies back. Thank you. So so much.
Kite, clonidine helped me with withdrawal. It's a blood pressure medicine. Best wishes.
Love to all
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Tarheel--Thank you! I'll check it out. I'm about to go from 50mcg to 25mcg. This is just a pain. Literally.
I hope you and your son enjoy the holidays as best you can. Much love from my family to yours.
Katie
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thank you everyone.
Still having trouble posting replies.
So, Quickly, after losing my last long post:
My son is feeling better about grades, thanks in part to a new phone app the school has. The immediacy of grade reporting seems to make him feel more in control. He's talking to teachers about alternatives (taking test at alternate time, like after school)
I have had 5 radiation treatments to 2 areas of my spine (out of 10), 5 days of light dose steroids and a week of Afinitor. I have gone from 4 mg of Dilaudid every four hours to 4 mg every 24 hours, and the 100 microgram pain patch of fentanyl seems to be holding my pain back. The bone pain is almost gone. My lungs hurt but that's to be expected from the radiation I am told. Things are way WAY much better. Would love to share more but my phone is acting ugly. but it's been life changing. I even went for a 3 mile run!
Thank you everyone for holding my hand, giving me suggestions, and reminding me that there is hope. Things were so bleak for a while ... I really do appreciate everyone's help ...it really got me through a very bad time and I am optimistic that things will keep getting better. (Come on Afinitor!)
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glad to know your doing better! Big hugs!
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ok so I made a MAJOR mistake in child rearing today. I have two ds's (12 & 9). My oldest no longer wants his parents to drop in for lunch at school started last year. My youngest still loves it. Dh and I usually separately try to have lunch with him at least 1 per month each since kindergarten. Well due to crazy back pain , and limited mobility I haven't made it much this year. Thankfully dh still goes. Well ds has been asking every week if not daily for me to go and I just can't. So finally this weekend I was doing pretty good so I said I would try for Mondays lunch. Well lol and behold Sunday night I start with the big d , crazy vomiting , major weak and way too dizzy to drive. Ds is disappointed but ok.watching his disappointment I PROMISED to go one day this week. We never break promises that's how we trust one another and we tell them that all the time. So it's Friday and I am not much better def can't drive and even if I just rode with someone really to weak to walk all the way to the school cafeteria. This am he reminded don't forget 12 lunch you promised. Even though he can hear me vomiting like crazy to him it's still a promise. I talked to Ds briefly and explained surely he wouldn't want me to have a big D accident at school in front of his classmates and that it was not safe for me or anyone else for me to drive so dizzy. He said I understand no prob I get hugs and kisses and he's off. Dh told me on the way to school he noticed ds crying in the backseat. Ds says because mom broke her promise and she's never done that. He's scared of me dying soon Dh comforts him best he can but now s he is having a hard day at school and I am sitting here crying I never should have promised for sure and he shouldnt have to worry about his mom dying damn cancer Sorry for the long post I had to get it out
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PattyPeppermint,
Dont' be too hard on yourself. It's such a heartbreaking story but in some ways, I think our kids will grow up that much more empathetic and kind going through this with us. We never want our kids to experience any hardship but, in truth, life is full of challenges. Joys, but also challenges. If we can model for them how we can enjoy life even faced with the challenges of MBC, that is a lesson they will carry with them for the rest of their lives.
Last night, I had a long conversation about death with my 16 year old son. He said he was terrified of the thought that he would some day die. It was a good opportunity to discuss our thoughts on life and death. I told him that I wasn't afraid of dying and that I had a good life with no regrets. I also told him that I don't know that death is the end, it may be the beginning. We have no way of knowing. All we can do is live life to it's fullest every day. A friend of mine who died a couple of months ago of MBC loved this poem,
"Open closed open. Before we are born, everything is open
in the universe without us. For as long as we live, everything is closed
within us. And when we die, everything is open again.
Open closed open. That's all we are."
Love and light, Susan
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Pattypeppermint,
I understand what you are going through I go through this everyday. I feel like i let my little guy down because I can't attend most school activities I am forever sending my husband or sister. It's not fair to our kids I feel like I am taking away there childhood with them stressing over us. The scarest part is if I dye how will they react will they be ok and when. I personally think a lot of these kids hurt really bad for a long time but do grow with a better understanding and a better heart. My oldest was a slack of through his whole school from 1-12th grade. He is a very smart boy but just screwed up. He started college this year and he is doing great. Sometimes i wonder if he is my boy. My birthday was yesterday and he have me a card and this is what he wrote.
"To the most amazing mom and women in the world who struggle with cancer on a daily basis but is always there for us. You are my queen my inspiration and my everything you thought me from wright to wrong and that will be with me my entire life. I will continue to make you proud and always know you are my hero. You may not know because u try to hide from us but we see u struggle and we hear you cry behind closed doors. I wish we could help with pain and it is not fair that you have to go through so much at such young age but we are here for u and get it'. Love Matthew my oldest and ryan
I just wanted to share with u ladies that our kids are wise and I think they will be ok one day we as moms did all we can and when your son gets older Pattypeppetmint it will be more clear to him...
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Susan - wow what a great time to talk to your sin. Happy he is open with his feelings with you. That's awesome
Stella. - wow what a card. Sure helped me. Your sons sounds awesome.
So by the time they got home from school yesterday youngest dd had moved in was upset about something else. We did get to sit down and talk. It was good. I woke up this am on the couch again , with my oldest ds sleeping in the floor beside me. I got up to potty quitely but he was awake checking on me. Got a good chance for snuggles and time to encourage him. This too will pass. This time I know not to promise though !
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Patty- I understand how you feel. I'm sad because my DD (11) doesn't even expect me to attend so many of her activities and 'bothers' me less at home. If feel guilty.
Susan - a lovely poem. I'm not religious. I think something like this might comfort my family. Need to write that down. Like you I'm not afraid to die. I am in anguish about missing out on life and leaving my DD to navigate her teen years without me.
Stella - your son's letter is beautiful. I have tears in my eyes. Annie
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patty--oh man! I know you feel horrible about breaking your promise. And it's so hard to see them cry knowing you can't do anything about it. Hang in there. Their little minds can't always make the connections we think they can. You are doing a great job being a mom! Wish there was a play book for navigating parenting while having a terminal illness. You think someone would have done that already! Sending hugs! Hope you feel better. Is that "normal" for you these days?
Stella--what a beautiful letter your son wrote! Must feel good to know he "gets it." What a sweetheart!
I am NOT ready for Christmas!!!!! I can't even get my house clean enough to decorate! Blah.
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I've purposely stayed away from this thread for awhile. It made living in denial so much easier. On Friday I had a breakdown. I've had a progression and the fear has surfaced, big time. It made me realize that the day I have to explain to my kids that I will be leaving them is a bit closer. This is my biggest fear.
Patty, I'm sorry you weren't able to have lunch with your son. We've talked about this before. For them, they just want us to be there. They aren't able to distinguish quality vs. quantity. As mothers, we walk a tight rope of concern with our quality of life, but at the same time, lengthening it to allow our kids to be a little older, a bit more mature when they ultimately deal with losing us. Give yourself a break and just go have lunch when you feel better. Kids are resilient. Don't beat yourself up.
KJones....get someone over to help you! If not a paid service, a friend or relative. Don't feel guilty, just accept the help. It will lift the burden and you will be able to enjoy the holidays more
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Thanks ladies. Can always count in you guys.
Romansma - love the new pic. Sometimes denial is wonderful. Hoping your new tx is kind and very effective for you.
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romansma--sigh...so sorry about the progression. You are so right about quantity vs. quality. Mothers of young children carry a heavy burden trying to decide what is best for all involved. Is there are new treatment plan? What is the mo saying? How scary this must be! We will be here for you, if you need us. Sending a big hug and lots of love.
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hey Romansma - did you start new tx today ?
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I went to Ortho today to get some cortosteroid shots from Dr. Shatz (pronounced shots)
. Xeloda should be here tomorrow to get going on it. Anyone see 60 minutes last night? Great piece on Molecular testing and more0 -
Xeloda has been great for me. 2 years out and still running after the kiddos
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So I am giong to have to have brain surgery in February to take out an origianl tumor that has started to grow back. Ugh. Driving restrcitions for over 6 weeks means I am going to go crazy. Of course, I am worried about a lot more, but I konw you all can apprecate what that restriction really means. Telling my kids that i need brain surgery was hard. I hate that cancer is so every present in their lives. I have told their teachers and will talk with teh principle at the school. I am beginning to make my list of my arm of helpers again. I hate cancer. Stable had been so nice. ONly good thing is the doctors say that this wont get me. So I konw it is just a bump in the road. but boy do I hate those bumps. Living with stage 4 cancer or any type of cancer really sucks.
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left foot. - that's one huge bump in the road. Sounds like you done this before and have an idea of what needs done by whom. Let people help anyway possible. So very glad to hear that this won't get you.
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