Mothers with school aged children
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oh hloveday. Fingers crossed for your bone scan to not show progress. Waiting sucks I know. Are you planning anything for the kids for summer ? It is so hard to plan when you never know how miserable you are going to feel any given day. Ugh. Cancer sucks. !!! But I am going to do my very best to enjoy each day for whatever positive I can find in it. I am alive !!!! My dh and dss are alive and well! Even if everything else is crap that day I am trying to focus on positive. Not sure all that positive thinking healing holds much merit but I know positive thinking changes how I feel or react and that's good enough for me.
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Hope you all are having a great Mother's Day! My six year old planned a lovely breakfast with flowers. She gave me a gift, it is a glass beaded bracelet she made at school. I started crying wondering what happens in a few years when I'm gone and there is no mother to make things for. We don't have a strong female prescence in my family. I'm just so sad today thinking about all the Mother's Days going forward and how many I have left. Somedays it's hard to be so positive.
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I just had the most perfect day with all of my kids. I took my own advice and lived in the here and now. I don't remember worrying today. Of course, just said goodnight.....and came here. The thoughts don't stay away for long, but I am thankful for this day. It was a very normal day, just talking, eating, resting, and watching a movie....perfect!
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I had a fabulous mothers day. I got good news on my scans on Friday and I walked in the woods my daughter and dog for hours on Sunday. I have a bit of a tear jerker story. DD is 11 years old and in school they make a coaster that has poem on it. The poem is about all my good qualities (and not so good - she wrote that I am sarcastic - what really!). The last line of the poem is "I hope you get better soon Mama." OMG, I started bawling. I told DD it was tears of joy at the beautiful poem even though it was thinking about how innocent she is that she thinks I'll get better.
Then she told me a class mate of hers who is from Chile and is here with his dad wrote a poem ended with "I wish you could come to the United States". I started crying again. Her teacher must have gone through a box of Kleenex after that project.
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Thank you for starting this thread! I was diagnosed stage 3c while five months pregnant with my second child. He is now 3.5, my oldest, my daughter is 5.5. I was diagnosed Stage IV, liver and bones one year after being NED from the first treatment. This is incredibly difficult with young children because they don't care if you don't feel good. I do my best to keep things status quo for them. I save my energy for them and take lots of rests when they aren't around. They can't really express their feelings or understand what I am going through very well but I don't hide anything from them. My daughter constantly wants to touch my port in my arm and see if it is OK, she wants to know when it will be gone! I told her it is a very good thing for mommy because it makes it easy for me to get my special medicine at the doctor and I like it. The youngest has been dealing with this since he was in utero and doesn't know Mommy as any different. He was diagnosed with mild cerebral palsy at one year old (I can't blame the chemo in my 3rd trimester or even go there) but it makes things especially difficult managing my treatment and all of his therapies. I do my best. I will keep fighting so I can be here for them!!! They are the fuel to my fire.
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ok I found the book that was used with my 9yr old son on our retreat with inheritance of hope (they serve families who have a parent with a life-threatening illness).
I will give you the info and you can tweak it however you see fit to use with your child.
1. Draw a picture of "me and my family"
2. Changes in my home: when someone in a house is sick, changes happen. What has changed in your house? Has any room changed a lot? Draw the rooms that have changed and explain what is different.
3. Color you heart: pick at least 5 colors that match different feelings you have right now in your heart. Use the key to match a color to a feeling (just have a red dot for angry or whatever). The. Color in the heart to show how much of each feeling is in your heart (my son used percentages).
4. Sickness feels like a swamp: when someone you love is sick for a long time, it can feel like the whole family is in a swamp. And though you might wish you could fly over the swamp, sometimes you just have to wade through it. Let's build a swamp together, and think about some good things (there might be islands or stepping stones and other people in the swamp with you to help) and some bad things (goop, snakes, quicksand, stinky slime) that happen when you're in a swamp.--this was an actual physical activity where they drew a swamp and glued stuff on it...
5. Worry yarn stories: sometimes it feels like we have lots of worries tangled up inside us. Some worries are little and some are big. If we have some yarn, we can show each other how long each worry is, and then we can show how they get tangles up together. But as we talk, we all get a better understanding of what's inside us. And we can help each other think of ways to handle anxiety.--I'm sure they probably used yarn for this, but my son also drew like a line graph on paper of each of his worries...he worried about his sister's life about 2 inches and state end of grade tests about 6 inches haha!
Ok I'm going to post now so I don't lose it. I will finish tomorrow.
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Love this thread as my kids are my biggest concern. When I was first diagnosed my daughter was 4 and my son was 8. Fast forward 6 years and I just recently found out I was stage 4. I remember when I was first diagnosed in 2008 I had many conversations with the time gods........if I just get another 5 years my daughter will be.......Same conversation has been running through my head this past week. As for a journal I will be getting to that scrapbook that I have kept putting off all these years. I throw everything that I want to save in a drawer so I would have it later when I had time. With these and pictures I hope to leave them with something that lets them know my precious moments with them and our time together. I would like to do one for my nieces and nephews but on a smaller scale. There are a lot of great things - like the time my nephew thought the best way to stop a bike was to hit a tree (the one at the bottom of a steep hill!). Have been very open with the kids (age appropriate) and told the teachers that work closest with them just so if they see any changes they have some idea what they are dealing with at home. That said I am hoping to be here for a long time yet and am going to actually put a scrapebook together as it happens, not just throwing the stuff in a drawer for later! I'll have to try and find a picture - I really loved seeing everyone elses.
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Hi Roberta, sorry you have to be here....but we are here with you to help you through the rough spots. I started journals for my kids when I was diagnosed stage IV. I've had a rough time adding to them. Not sure why. I also keep an online journal for friends and family. They are always asking what they can do for me. Sooooo, I asked them to help with the journals for my kids and even my husband. I asked them to contribute by writing about experiences and insights about me and our family in the hopes that my kids will further understand who I am, even after I'm gone.
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Thanks Romansma - I love the idea of others putting down things too
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Hi everyone,
Just thought I'd post that my daughter will be going to Camp Kesem for 5 days in August. I'll let you know how she likes it.
Annie
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Looking forward to hearing how she does, Annie. My son was accepted too, but I cancelled. He just turned 10 and hasn't been away from us for that long yet. It's probably more that I don't want to be away from him that long! There will be other summers for him to go. This summer, he's all mine!
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Annie I would love to hear how your daughter likes the camp. I thought about signing up my daughter, but she is 7 and still hasn't put together that cancer = dying. I was afraid she would run into other kids who had lost a parent and put it all together there. I really waffled a lot on whether to send her!
We took the kids to see Rio 2 today and one of the previews was that gmail commercial about all of the kids graduating. It shows snippets of high school life like the first day of 9th grade, sports, prom, graduation, etc...and it made me so sad for all that I will likely miss. Not a good start to the movie!
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I want to start by saying that I can relate to at least something out of all of your posts. This is the one topic that I feel most connected to right now...in the OMG do they ever get it way. I took a break however, due to technical difficulties (ie post disappeared with one errant click grr....and a progression grrr again... but delay in treatment waiting for my MUGA-heart function to get better)
I did want to try again to pick out some of the things I really related to.....CajunQueen.....I love the 'respect my sense of urgency' description. That is the perfect word...urgent.
leftfootforward...That trip to Australia sounded awesome. We had a smaller trip to the West coast over spring break this year. Flew to Vancouver, train to Seattle, drove down the Oregon coastline to northern California to see the Redwoods, and flew home from San Francisco. Ridiculous amount of driving, but, gorgeous. Those of you close enough to the ocean are blessed to be able to be 'recharged' with that energy and beauty. Used up some RRSP's for that one, but, totally worth it. Only problem is that it was such a break from reality, that I wanted to 'escape' again as soon as we got home.
EnglishMajor....loved the young woman's blog. I got the same connection from reading about her experience of dealing with this crap and being a young mom as I do reading all of your posts. Very much agree with Heidihill about the phrase 'lean hard into joy'
Hloveday...any bone scan results?
Romansmom...I think the idea of having stories about you from others, for your kids, is fantastic! There is nothing better to me than when people tell me a story of my mother, father, or sister (all deceased). It tickles my heart, reminds me that others loved them and keep them in their heart as well. At one time I toyed with asking in my obit for people to bring a small note of how they knew me. Something to give to the kids and my DH. To give them time and not feel rushed once they are at the funeral...still like the idea, just haven't thought of it in a long time.
As far as journalling goes...I kept a journal of when my kids were born, until about 2 years of age. My mother died when I was 17, and when I was pregnant that is what I wish we had been able to talk about. How old was I when x happened? A million questions that no one could answer. Not sure if I have answered them for my girls but there is something there. I also journaled some of our big trips we have taken in recent years. The making memories trips, documenting what we did. as well as tons of pictures of course.
I also agree with Fitztwins about the pressure of leaving something behind. My sister did a dignity therapy document for her family, but no other letters etc. She was of the same opinion that she was trying to raise them the best she could and leave them with love, cheering them on at every sport, and encouraging their passions. It is bitter sweet to see them doing well, getting their drivers license, doing well in school, having fun again, laughing, and the bloody unfairness that she is not here to see all they have become. but knowing that one day this too will be my girls.
So, yesterday I went shopping with my 11yr old at a second hand store(which I love doing). We spotted this gorgeous Cinderella like, pouffe dress in the aisle and I said 'why don't you try it on?'
Well didn't it look fabulous on her, everyone thought it looked great. But...we don't have a grad for 2 more years, no weddings or parties for this dress. I bought it and it felt great, she was over the moon and she wore it to a family dinner at an Italian restaurant that night. I felt like it was the prom dress I might not get to see but I wasn't upset by it(maybe a few happy tears)...we had a lot of fun! Living in the moment leaning hard into joy....
I have never posted a picture before, so will submit this post first so I don't lose it again and will try a picture of the fabulous dress.
hugs and love,
Diane.
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Ok, I think I may have figured it out. Not so hard after all...
Here she is in her party dress. Proud mom...of course now I will have to find a good one of my younger daughter to show you now!
Time for bed,
Diane.
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Diane,
What a stunning picture! Thanks for sharing!
- Susan
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LOVE the party dress....why wait for an occasion....make an occasion. This made me smile!
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The dress and your daughter are gorgeous, Diane. Fabulous post too.
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That is lovely, Diane, beautiful dress and beautiful girl--thanks for sharing!
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Diane - that is lovely. I'm so glad you got that dress!
Re: Camp kesem - I'll definitely do a review. I too was nervous about DD 'realizing' things might be worse than she thought. But she knows that I have cancer and that there are different kinds of cancer that affect different parts of the body, some are worse than others and that I am lucky to have medicines to keep me 'healthy' and sometimes that doesn't happen with cancer. That being said, she also knows that we have told her that if the medicine stops working then we will tell her. According to the camp literature the point of the camp is that they 'get away from cancer' and can be normal kids. Durng the 5 days, they have 1 session of an hour where the campers can talk about anything on their minds but they don't have too. I've already talked to DD about that part.
Also, she went to sleep away camp the first time at age 9. (not including girl scout camping trips). I was nervous but she begged and then she loved it. Both her dad and I were working full time at the time so it was good coverage while we worked. She goes for 2 weeks. Now that I'm not working she would be crushed if she couldn't go. She talks about camp and the counselors and kids all year and sings the songs. So she goes even though I'm home. The camp is reasonable and for now we can afford it.
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Diane - what a beautiful dress!
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So, so pretty! My 11-year-old daughter would LOVE that dress!
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Diane--your daughter is so pretty and that dress just looks like it was made for her! Beautiful!
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oh and I have so much I want to comment on from previous posts...I will have to sit down and write it out though. Too much for my little brain to remember.
I have scans Friday so I'm starting to get anxious...
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Kjones, wishing you peace and good scans!
We had my in-town stepkids over on Memorial Day (my stepkids are in their 20's and two of them live in the area) and had the best time laughing and prepping food and grilling and eating. My stepkids have always been great with my dd and they all think of themselves as sisters and brothers (instead of half this or that), but for the last few months I've really been looking at them together and being grateful. If I'm not still here when it's time for prom dresses and graduations and wedding dresses and babies, I know they'll be there. I want to be here so badly, but it's comforting to remember that they have each other's backs.
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Tomorrow, my oldest son graduates from high school. I'm so excited for him. So excited that I get to be there to see him do this! Of course, this makes me think about my 4th grader and whether or not I will be there for his graduation. But I will try to stay in the here and now this week and celebrate with son. It's all so overwhelming sometimes.
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Reflecting on that party dress day...it was fun, and she does look beautiful doesn't she? Thanks for all your feedback...nice to hear since I of course think she is beautiful always.
Romansma, what a handsome young man. Have a wonderful week and I think you are absolutely right to try to stay in the moment. Celebrations typically get me thinking of who will get married next, who's birthday is next, who might die next etc. I think it is hard to stay with the moment...acknowledge those feelings and get back to the moment and enjoy!
Rosestoses that sounds like a fabulous day! Such a great gift, and they don't even know it...Btw, I love your username...it just rolls off my tongue and makes me think of reading to my kids.
have a great day everyone,
Diane.
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Romansma,
Congratulations on your son's graduation! My son is just finishing up his Sophomore year in high school and I'm really hoping that at the very least I will be able to see him off to college. Just love to see these pictures. Really makes me smile!
Hugs, Susan
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Thank you, Diane!
Romansma, congratulations to you and your handsome son! I hope you and the whole family enjoy this special day.
Susan in SF, my daughter is a freshman this year and seeing her graduate is my big goal right now--here's to seeing these dreams come true (fingers crossed).
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Beautiful pictures and posts-congrats to all the proud moms watching their kids wrap up the school year and move on to their next adventures! Last night was my 14 year old's 8th grade promotion. I used to think it was very silly that the school district had a ceremony with gowns and speeches-but now my tune has changed. My goal is to get to see both kids graduate high school (and beyond!), but if that doesn't happen, now I have this wonderful memory. He was one of the top 4 students, gave a speech, and referenced our family's experience with cancer in it. I knew it was coming so I brought Kleenex...it was such an emotional moment, as he has never really talked to me about how the past year affected him. I know there's a lot of distance between now and adulthood, but somehow seeing him up there made me feel confident that he's going to turn out ok.
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Carla, that's wonderful about your son, it's so nice that you have that memory. I'm hoping with you that you are there in 4 more years to see him do that again.
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