Illness, Setbacks – looking inwards, coping with it all

by Louise

A mouthful of a title! How did Totebaggers cope with illness in themselves or loved ones, how do Totebaggers cope with setbacks? One day everything is fine, the next day dark clouds appear on the horizon.

My household just dealt with a bout of illness and all our issues are not yet resolved.
I thought of this book, I had been intending to read it but put it off, will pick it up again.

Review: In ‘When Breath Becomes Air,’ Dr. Paul Kalanithi Confronts an Early Death


90 thoughts on “Illness, Setbacks – looking inwards, coping with it all

  1. Louise, I’m sorry your family has been going through ill health. Somehow I expect that it all falls to you to do the caregiving, etc.

    I handle setbacks by rending my garments and gnashing my teeth and wailing and drinking. It’s the Biblical way.

  2. Although money doesn’t guarantee good health, I’ll be a bit shallow and say money has made a big difference in our family’s medical crises. Whether it’s the ability to pay for the best medical care or to handle interrupted work or school, it helps. It’s easier to maintain a positive attitude and handle physical limitations when you don’t have to worry about money.

  3. Ah, $%##%*. This is exactly the kind of story that cuts me to the quick. I think I am going to plug my ears and sing “lalalalalalala” until that part of the discussion is done.

    On minor medical things, I don’t handle them particularly well. We are having a sucky medical year, starting with DD’s foot surgery last fall immediately before the start of school, followed shortly thereafter by DS’s broken finger immediately before the start of basketball, followed by DD’s emergency-urgent-weird-possible diagnosis immediately before our holiday vacation, and now topped off by DS’s broken foot immediately before the start of baseball. Oh, and DD sprained her ankle in softball practice the other day, but I think it is more sympathy pains/he’s-getting-all-the-attention/I-don’t-like-all-the-running, because she was good enough to walk down for ice cream the next day.

    All of these are trivial annoyances. And yet I am just done. When one of my kids has a health problem, SuperMom just sort of naturally activates; I can’t think about or do much of anything else until I know my kid is good. I mean, when DS broke his foot at school, my mom drove him home and offered to take him to urgent care, but I said no, dropped off my this-one-was-actually-important conference call (settlement discussions), and spent 3.5 hrs in urgent care instead. Totally illogical, but I couldn’t help myself; I would have wanted my mom there, and so I couldn’t not be there for him (even if he really couldn’t have cared less). And, boy, DD’s little Christmas present had me totally disconnected from work for a good 6 weeks while we figured it out; I just could not get my head in the game. It was crystal clear to me that if she actually had a serious condition, I was quitting instantly, damn the torpedoes. And yet she is 100% completely fine, so I wasted 6 weeks stressing myself out over nothing.

    I’ve never done moderation well. If we ever have to deal with an actual serious medical crisis, I am F’d.

  4. “RMS, are you opposed to sack cloth and ashes?”

    When wailing and drinking are available alternative options? Please.

  5. Lousie – I’m sorry. Being an adult isn’t all its cracked up to be. I have a tendency to just put my head down and keep going with the knowledge that i just need to hang on long enough and it will change. I liken it to hiking a little further than you should have and it is raining and the sun is setting and you just need to put your head down and get back to the car. You don’t think about what lies ahead, you just focus on the next step with the understanding that you will ultimately make it.

    What has been harder for me is watching people I love suffer and there isn’t a single thing that I can do to make it better. I can bring meals and do things like that but they only file away at the jagged edges of the hole in their life. I am learning that I help where I can and I move on. Carrying their sadness with me does nothing to lighten their load and limits my ability to help them and others. This took a long, long time to learn.

  6. I feel like i’m the one that always has some type of health problem. There was that parasite, then I couldn’t use my hands for a few months (we’re still not sure what caused that), then i had severe acid reflux.

    and the latest one is lingering head trauma from minor accident in november. I got rear ended which led to a concussion but the pain never went away and now the doctor thinks i have little tears that are messing with my normal nervous system function. i’m just so tired of it all. I cannot remember the last time i had a completely pain free day.

    and the hard part is i just keep on keeping on. I haven’t missed a day of work due to any of this so sometimes I feel no one takes me seriously. Even with my most anxious and depressed state, i’m one of those people that still does everything. and it’s hard sometimes when you’re single and you feel alone because there’s no one there to get you that aspirin or glass of water.

    ok i’m done with my pity party because i realize all these things are not that serious and i’m very lucky to have health care. but i’m over it. haha

  7. DS has been having a pain in his abdomen. We have tried all sorts of constipation remedies. Now, we are on the GI specialist and ultrasound. Waiting to hear back.
    What is not helpful is all sorts of Dr. Google medical advise offered up by family and friends. Well meaning but totally unhelpful. No, we can’t try a different diet everyday.

  8. What did I do? I hunkered down and focused 100% on the child, even though my attention did not move the needle one bit. Endless phone calls to doctors, specialists, teachers, pleading for anything that would help make him better. I dropped off Totebag for about 12-14 months because I could not stand happy talk when my baby was so sick.

    After 2 bouts, lasting ~4 months each, we have found a medication to manage the situation. I am still dealing with PTSD.

  9. I have a feeling that if LfB had to deal with “an actual serious medical crisis” she would do fine, in her own way.

    ” I haven’t missed a day of work due to any of this so sometimes I feel no one takes me seriously.”

    I know that happens! And the extreme whiners start to lose their support because they’re overdoing it. There has to be an in-between way to handle this.

    Louise, have you started the book yet? I’ve been reading the Disability series in the NYT, by turns inspiring and depressing. The latest article was about the extreme hardship of navigating NYC subways by wheelchair. I can relate because I had a period of immobility, and I think about this when people say they want to move to the city when they get old.

  10. I wouldn’t be able to read that book.

    We’ve never dealt with anything super serious but I just instantly move into action – making chicken stock, fixing them hot water with honey/lemon if they have congestion, etc.. If my children were better patients and would eat/drink whatever I was trying to give them it would be less frustrating.

    If it was something bigger I suspect I would be researching for hours every day because that’s what I do with myself if I have any sort of issue.

  11. I read When Breath Becomes Air when it was published. I don’t know if it is a book that I would say that I liked, but I was very moved by his story. His story reminded me of how precious the day to day is, but I don’t live my life that way.

    DD is sick this week and I feel bad for her because now she has the added pressure about missed school. I told her she could stay home because she really was too sick to be there, but now she has to make up some tests and that will cause to miss even more school when she is healthy. It isn’t anything serious, so I am confident that she will be better by next week, but it is always so tough when your kids are not feeling well.

    We are in a good place with elder care, but that is a fragile state because it never lasts. I am just learning to adjust as each crisis/illness pops up.

  12. I liked the book because he was a super Totebagger. The focus was so much on ambition and achievement. But one day the glorious future you envisioned is blighted in some way. The day to day becomes a struggle the future unclear. Could happen to any of us.

  13. I am terrible at big illnesses. When my oldest was born and spent 2.5 months in the hospital, I basically moved in to the hospital and did nothing else except stare at him through his isolette. I felt like I was unable to do anything else. Even going home to shower/sleep was kind of awful. I let my friend convince me to attend my previously scheduled baby shower when he was about a month old. I ended up crying in the bathroom. And a big reason I quit my job is that he ended up rehospitalized for a week and I was working crazy hours that week and unable to be there the whole time.

    With smaller things, I am good about just rolling with things. Nothing permanent or close to death inducing? Excellent. I am sure I am scarring my other children. I never freak out over their health things because they have just had the normal kiddie stuff (knock on wood).

  14. When our first was born (a month early in another state), one of the screening tests came back out of range. (Think 0.52 out of 10,000 when the “normal” range goes up to 0.5) The pediatrician (who wasn’t great, we switched shortly thereafter) said we had to go to the Children’s ER right away, and this was when #1 was maybe 6 days old. We spent 6 hrs in the ER for evaluation and it was useless with lots of needle sticks for the baby. Everything was ultimately fine, but that experience was really terrible and we couldn’t focus on anything else. Knock on wood, other than some vision issues for #1 the kids have not been sick since then.

  15. “What is not helpful is all sorts of Dr. Google medical advise offered up by family and friends.”

    Tee, hee. Yes. A few years ago, Junior threw me a fastball that I bungled. It hit me in the stomach. It was still sore the next day and mentioned it in passing to a church friend who immediately responded, “It’s your liver.”

  16. It’s your liver.

    PTM – he probably found an opportunity to politely reference the many Genny Lights you are fond of consuming.

  17. I figure you just deal with it. We’ve been through so much medical crap the last few years, with DS’ anxiety/stomach issues, DD’s stomach issues (turned out to be celiac) and her headaches, DW had some stomach issues. You just do what you have to do. This is where being UMC or UC makes a big difference. DW and I can miss work if we need to. We can afford to pay all the bills. We don’t need to worry about that part of it.

  18. Let’s break this up so it goes through:

    Finn – I lived in downtown Mystic, but I really love Newport. If you’re going from Newark/NYC to Boston, then that would be my top recommendation. I like Thames Street (just don’t go the Red Parrot, I would burn that place to the ground if I could. However, Scales and Shells is great.)

    Do the Cliff Walk

  19. It is my nature to need to take action, so it is particularly frustrating to me when I cannot do any sort of little tasks that make me feel like I’m at least doing something. I am going through this with my dad right now with what is clearly a degenerative issue that has remained undiagnosed for two years. I have done everything that I can do, and this passive waiting is crazy-making to me. The latest doctor has clearly dropped the ball on the next round of tests and referrals (appt was 5 weeks ago, nothing discussed has been scheduled because the scheduler quit and has not been replaced yet – meanwhile, he continues to lose function). So when it’s me or my kids, I cope by doing research and making lists and changing diets or routines or making cookies or whatever. Helplessness absolutely sucks.

  20. What DD said. Plus, being MC or UMC means you are more likely to be able to deal with bureaucratic cr@p, like the truancy notice the school sent me because my son missed too much school.

  21. I have had a full plate of serious family health issues during my adult life. A child who died of a brain tumor (six mos illness) at 3, a 15 year up and down journey (happy ending) with a child with adjustment issues and worse, an aging parent who required a lot of care for a fairly short time (2-3 years), 3 years ago my DIL and her 9 mos of cancer treatment and the psychological aftermaths, my husband and his chronic health management issues, more time consuming in the past 2 years.

    I do very well in a crisis, even an extended one. Nothing can ever tear me up as did my child’s illness (but see Job 2:5. I have not yet been tested in my own flesh). A crisis wears, of course, but I am competent, organized, forceful, and I can go with less than a normal amount of sleep for long stretches at a time. The aspect of medical crisis that offsets some of the other stressors is that I don’t expend the usual energy deciphering behavioral cues and trying to pass as a well socialized regular person. (I do quickly figure out how to get professionals on our side – that is just as important as making sure there is gas in the car and the phone is charged up.) For the less acute tasks of normal life, I either procrastinate so I play catch up or make a quick decision and sometimes miss details.

    I can relate to what Kate said about other stuff that happened to her children. Each of my CA college students had a serious but not life threatening medical episode. I didn’t have the money or the time off to fly out at that stage of my life, but I confess that it never occurred to me at the time that they would need me or prefer that I be there during the recovery or manage the treatment.

    LfB – in a serious life and death or grave illness situation you would handle it just fine. All in all you apparently get by well in real life even though you self report seemingly daily bouts of overreaction to anything vaguely out of routine. The apple and the tree???

  22. My extended family has faced numerous health crises the past ~3 years. A cousin’s 8 year old daughter died of complications of her severe disabilities, Totebaggy Bay Area aunt died of breast cancer after 16 year battle, other aunt treated for breast cancer, uncle died of cancer last month.

    While most of my family is not upper middle class, we have the behaviors (organization, schedule, ability to absorb complex information and ask appropriate questions) and cultural background (“piss or get off the pot” was my grandfather’s favorite phrase in support of decisionmaking) to weather such events. During my uncle’s cancer battle, my aunt lived with one son (who is self employed and so could make twice-daily trips to the hospital with her) during the week and the other son (who also lives near the hospital but has two small children that exhaust my aunt in large doses) on weekends.

    It’s hard for people who already live on the edge to manage a crisis.

  23. I have dealt with a lot of nasty diseases in my extended family. March is a bad month for me. While March 22nd is my wedding anniversary, my first child’s birthday and my son’s girlfriend’s birthday, the rest of the month has birthdays of past members of the extended family who died and the death day of my mother, My eight year old niece’s death to leukemia and my mother’s death to breast cancer were particularly hard to accept, My mom’s death really hit me hard, perhaps a little harder than my niece’s.

    We also dealt with a lot of financial losses.

    So far my husband and I have only had small medical problems. I am finally getting over my sciatica and feeling more like myself.

    I am very lucky in my husband. He is very supportive and helpful when things are going to hell.

    I am not a religious person but I am a spiritual person and in times of sadness and crisis this helps me.

    My husband and I agree that if we get out of this life without losing a child we are very blessed and have had a good life.

    When life starts to get you down (don’t mean serious illness or loss of a loved one) just remember – nothing lasts forever, not the good nor the bad.

  24. Hijack: I’m looking for good articles on school start times

    My son’s school district is apparently considering changing the bell schedule. High school currently begins at 7:30. I know there is lots of research that says that is too early for teen age brains, that it disrupts their sleep and therefore their ability to learn. I know that, but I don’t have any articles on hand that say that. I’m alarmed to hear that so far, the primary need being cited for high school kids is to get out of school *earlier*. Are they planning to start school before 7:30? They have just requested input from parents, with a very short deadline. The time is so short that before I plunge into the hundreds of articles online about this, I want to ask if anyone here has a favorite article on this topic that explains teens’ need for sleep and later start times well. If you do, please post it here or send it to this handle at hotmail.

  25. “I am very lucky in my husband. He is very supportive and helpful when things are going to hell.”

    Yes. My DH could blow up over the small stuff when the kids were younger, where I am calm , but is a rock when there are things that knock me on my ass.

    “If we get out of this life without losing a child we are very blessed”. I woke up this morning to a group message that a college friend’s daughter died in a car accident yesterday. She was a year ahead of my DD, and in the same sorority. I honestly cannot imagine how difficult that must be to even wake up the next day. I agree passionately – if we make it, we are very blessed.

  26. When I was in elementary school, my sister died of cancer and my best friend was killed in a car crash. By far, my biggest fear is something happening to my kids. When I was in my late 30’s, a friend had a close relative with brain cancer. My friend mentioned it was the first time someone close to her had been seriously ill. In some ways, it was kind of a paradigm shifting comment for me because I hadn’t realized you could go so long without something bad happening. It made me realize that I’d spent much of my life just waiting for the next horrible thing to happen.

  27. @seattlesoccermom – I have a self imposed sword of damocles. I spend most of my life waiting for it to drop.

  28. “In some ways, it was kind of a paradigm shifting comment for me because I hadn’t realized you could go so long without something bad happening. It made me realize that I’d spent much of my life just waiting for the next horrible thing to happen.”

    Nothing really bad happened to me or family or close friends until I was past 50.

    Now I know that whatever happens, I will deal with it then.

  29. Milo — I saw that at the end of yesterday’s thread, you posted a picture of Rosecliff. I have very fond memories of that place — it’s where I had my first kiss. My brother, my parents, and I had gone to a wedding in RI, and the reception was at Rosecliff. I met a boy at the reception who was about my age (15), and we talked and danced the whole evening, and then at the end, we shared a kiss on the floor of the (very grand) ballroom. It was perfect. I never saw him again, but no matter. All these years later, the memory of that evening still puts a smile on my face.

  30. School start times – DD#1 (8:20 am); DD#2 (9:00 am). However, realize that later start times mean later ending times. DD#1 (3:30 pm); DD#2 (4:30 pm). Now, the bigger issue is this never is when they really start or end. DD#2: Fall band practice – 2 days a week be at school by 7:15 to be on the field by 7:30 am; and 2 days a week stay after school from 4:45 pm to 7:00 pm. DD#1: Cross-country – be at school at 6:00 am; several clubs be at school at 7:30 am. Both schools have teachers available for tutoring about an hour before school starts.

    Our experience about half the kids are at school about an hour before it starts for sundry reasons from that’s when mom/dad drop-off as they are ineligible for the bus, they use the morning study hall/tutorial time, they have a club or sport with early practice, or this is when most of their friends show up.

    Article –

  31. My DH went was perfectly healthy until he was 40. Then, he got an autoimmune disease and the last 15 years have been tough. Open heart surgery, multiple hospitalizations, kidney failure, dialysis, organ transplant and septic shock. Just this week, we spent an evening in the ER. Two headlines from all of this – I will forever mourn the impact his health has had on our family life and my kids’ childhoods, and thank god i had/have a good job. When he had to stop working, there was no question that we could still live quite well on one income. I sometimes don’t know how I survived, but as someone said earlier, you just do what you have to do, and put one foot in front of the other.

    I can’t imagine the pain of losing a child, and my heart breaks for those of you that have. One of my best friend’s nephews attempted suicide last weekend at age 19. Such a nightmare.


  32. Austin, yep, the connection between later dismissal times and kids not getting to jobs on time is why I worry that they may move the bell schedule in the wrong direction. I sent an email with Rocky’s article and the AAP article it references both attached, and posted it on the parents’ FB. So far it’s getting “likes”, but who knows if they are actually writing.

    As far as extra-curriculars: they are extra. It is unreasonable to force the entire student body to get up early so that those kids can have a schedule they like more. Whether their practice times are before or after school, they should not dictate the required schedule. They could move them to before school, in which case the hours kids are away would stay the same, or they could have them after school, in which case the whole school+ECs day would shift later and more kids might be well-enough rested to be able to participate.

  33. Saac, not research, but DD’s high school was going to change the start time from 8 to 8:30 because of the teen sleep research, but so many of the parents said that they would drop their kids off by 8 anyway and go on to work that they cancelled it.

    (her school had kids from all over the Bay Area, and was located a long bus ride away from the majority of the neighborhoods in the city, so many parents drove them to school).

    Seattlesoccermom and Moxiemom – I am the same way. I think there is some old Gypsy/Eastern European thing about not praising a child because something bad might happen! I prefer to worry about things in advance because when something bad happens it is always “when you least expect it”.

    I assume that I have singlehandedly prevented another earthquake here, kept all of my planes safe in the sky, and kept my kids from getting various illnesses!!

  34. Sunshine: So sorry that your family is having to deal with autoimmune disease.

    SM: Our high school starts at 7:40 am.

  35. Kid’s School start time is 7.50. Most schools hover around the 8 am mark. The magnets are the only ones that start by 9.15 since they draw from a bigger geographic area.

  36. Louise, interesting. Magnets here start at same times as other schools. Bus times are around 5:30 or 6:00 a.m. so the busses can then go get kids to high school by 7:30

    Atlanta, thanks for that website. I posted it on the parents’ FB, for people to attach to their letters.

  37. I’m always amazed at adults who have never been to a funeral, experienced death of a close friend or family member, or dealt with illness. It is like they are living with unicorns. In my K-12 years I had 5 classmates pass away, along with an assortment of family members pass away, and family illnesses and surgeries.

    As someone commented earlier, I feel like I’m always waiting for a shoe to drop. I’m not pessimistic, but just realistic that my life is not floating along on perfect cloud. When my DD was diagnosed I researched the heck out of her condition, got a treatment plan going and quickly got use to my new normal. I can’t add the missing chromosome in her, so I just accept what I have and keep moving ahead, and it has made me stronger and a better person for it.

    That being said, some days suck, some truly horrible thing could knock me down at any point, but I need to just appreciate my current state.

  38. Rhett – I can’t even imagine what they are going to do. They say I-85 will be closed for the “foreseeable future. ” We’ve been getting robocalls from the city all night saying to stay off of the roads. DH made it home no problem (we live on the other side of town) and I happened to check the news after he was home and saw it.

  39. Wow Atlanta Mom! That is crazy.

    RMS – she has Turner syndrome. As with any syndrome there are varying degrees of issues/complications. We’ve been fortunate that so far she hasn’t had any life threatening issues.

  40. Sunshine, does your name reflect your determination to keep that attitude? Wish you and your husband the best in this struggle.

    Lemon, is this your only daughter? I’m sorry, but I can’t remember for sure.
    I had forgotten until now that I did know some kids who died early, in a car accident. Several boys I knew died, including one who was ejected from the vehicle and slammed into a tree 10-15 feet up. I was already in college, so I mostly notice it thinking back and realizing there is a hole there. Our neighbor across the street died when I was in high school. One of her kids was a daughter my age. I remember that our class came together strongly to support her. (When my son was born, I realized that my mother had not been kind in her comments about the woman while she was alive, and determined that I didn’t want to repeat that, so I’m happy that my kid has said several times recently that kindness is one of my main characteristics, in his eyes). The dad remarried quickly, and that daughter now has a close relationship with her stepmother (she doesn’t call her that–she says “Mom”). Other than that, I think my grandparents’ funerals are the only ones I’ve been to, and several classmates’ siblings and several of my parents’ friends who I remember from my childhood have passed away.

  41. Thanks Louise and S&M. On the name, probably. That which doesn’t kill you, you know.

    I do have an overall attitude of ‘it could always be worse’. Lots of people thrown this curveball don’t have a wife who works in a primary-breadwinner type of role. In many families, if the dad had to stop working at age 45, the economic hardship would become as overwhelming as the medical issues. I am thankful my mom raised me to be able to take care of myself and my family. She felt trapped because she couldn’t financially provide, and was insistent that my sister and I would not find ourselves in the same situation. As Denver Dad said much earlier in the thread, these kinds of things are much easier to deal with if you’re at least UMC.

  42. We had a day, a few years back, where one of our children got CPR three separate times. It was in the context of a longer, unexpected, hospitalization. Child is fortunately fully recovered. People kept saying, “I could never get through that!” and “You’re so amazing.” I didn’t feel amazing. I felt trapped in a play that I had very little control over, but the steps were neatly laid out. Speak to doctor, get coffee, call friend, speak to next person in room, get lunch, trade off with spouse, hold other child, shower, return to hospital, get more coffee. LFB (and likely anyone else on this board) would do the same.

    The month after we were released from the hospital was full of follow up appointments, laundry, and a million chores. It was a few months later that the full weight of what happened began to crowd my thoughts all the time. I was lucky to find a good therapist to deal with the PTSD. It was incredibly hard to talk to others about because the bad part was all over, the future was unlimited and it was time to be happy. I made a bunch of impulsive (though not terrible) decisions in the next 6 months, family travel, another kid, carpe diem, etc.

    My point is that the actual terrible thing was easy to navigate, one foot in front of the other. The aftermath was much more difficult, and we had a good outcome. I can’t imagine what it would be like if it had gone differently.

    I look at my kids every day and say, “Tomorrow isn’t promised.” (Quietly, in my head, because I don’t want to be too creepy).

  43. Lemon – a big hug to you.
    Thanks to everyone who has shared their experiences.

    The one place that I have received support from is kid’s school. The administrator told me that they do have a few kids out of school every year for stretches till a diagnoses is made. So, not to worry, they would figure out how best to catch up. I am grateful for their understanding and prayers (since this is a school with religious affiliation).

  44. Y’all, there just are no words. Lemon, I had a niece with Turner’s Syndrome who didn’t survive infancy and I’m delighted to hear that is not always the case.
    I appreciate Anon Regular’s mentioning the aftermath of trauma. In the past year my oldest DS’ college roommate died (NMSF, in grad school in a hard science, inconclusive autopsy, no answers for his grieving parents and friends) and I ran into his mom recently. Her grief is so close to the surface, but I think our society expects after 6 months for people to move on. My heart breaks.

  45. Some very sobering accounts here.

    NoB –
    “Rosecliff. I have very fond memories of that place — it’s where I had my first kiss.”

    Ahh yes. Although mine was in far more pedestrian surroundings. Almost identical to this:

  46. It made me realize that I’d spent much of my life just waiting for the next horrible thing to happen.

    I prefer to worry about things in advance because when something bad happens it is always “when you least expect it”.

    As someone commented earlier, I feel like I’m always waiting for a shoe to drop.

    I can relate to all these and a question I have is that when a person lives their life “waiting for the next horrible thing to happen” at what point does it become pathological and interfere with a happy life. I don’t know the answer, but we all have to manage life as best we can.

    Nothing really bad happened to me or family or close friends until I was past 50.

    I know a woman who had a “perfect” life until she was about 55, and then all hell broke loose. A surprise divorce, financial ruin (related to the divorce), serious kid problems, and a life-altering autoimmune disease. Yet she has handled all this with an amazing attitude.

  47. ^ But the positive part in always “waiting for the next horrible thing to happen” is that low expectations can actually be the key to life satisfaction and happiness!

  48. “Y’all, there just are no words.”

    This. Thanks to you all for sharing.

  49. Case in point. Explosion reported very near where loved one works in NYC and I’m thinking of funeral arrangements. *sigh*

  50. Except for those “living with unicorns” per Lemon, everyone has to deal with bad stuff.

    One foot in front of the other, is all I can do. I have sympathy for everyone.

    My dad died when I was 10 (car crash*, probably fell asleep at the wheel; it was 3am). 25yrs to the day later our 1st son died at birth. One foot in front of the other.

    *I have begun avoiding the word “accident” wrt to car crashes. If you get t-boned, maybe it’s not your fault, but deep down, and maybe in the most literal sense possible, it was not an accident the other car hit you. The other was driver distracted for any of a myriad of reasons, going too fast for the conditions, whatever the conditions. You hit a patch of ice an skidded off the road? Should you have been going as fast as you were for the conditions? Likely exceptions: when a pedestrian quite literally runs out from between parked cars in front of you, or perhaps similar with deer, but in normal car-to-car action, there are few if any “accidents” in my mind.

  51. “My point is that the actual terrible thing was easy to navigate, one foot in front of the other. The aftermath was much more difficult, and we had a good outcome. I can’t imagine what it would be like if it had gone differently.”

    This, exactly. When a serious illness strikes, you cope because you have no other choice. Others may honestly think that you are amazing, and that they could never handle it. My Catholic perspective is that God gives you the grace to handle what you need to handle at that time. Though at that time, at least for me, it certainly didn’t *feel* that way.

    Thank you for sharing. So sorry for your suffering. I agree that the aftermath can be much more difficult, and that few people can understand that “because everything turned out well, right?”

  52. My prayers to everyone dealing with difficulties.

    There is a 10 year span between me, the youngest, and my oldest sibling. My experience growing up was much different than my siblings. Life was pretty perfect. Friends used to joke about our perfect family.

    My freshman year of high school my mom got breast cancer and my sibling’s first child was born 2 months premature and then died at 3 months from RSV. Looking back I realize how immature and selfish 14 year olds are. I don’t think I really understood what was going on.

    My mom passed away when I was 25 from MDS, a blood disease. I grieved deeply for a solid year and it probably took a solid 3 years to find a new normal. Her death has had a profound impact on my life – from relationships, to what I want out of work, to how I spend money and think about retirement.

    Now that I have kids, I really can’t comprehend what my sibling went through at 24.

  53. “My point is that the actual terrible thing was easy to navigate, one foot in front of the other. The aftermath was much more difficult, and we had a good outcome.”

    I hadn’t considered this, and am glad you mentioned it. Ditto for the mentions in a few comments about PTSD after a child’s illness, etc. I’m not sure I follow up with people for as long as I should, given this.

    I appreciate what everyone else has shared here, too. I keep thinking that if we all lived closer, this group could be so helpful to LA Girl or Sunshine or others. Positive thoughts over the Internet are great, but I’m sure I’m not alone in wishing I could *do something*.

  54. Entering late… First of all, I have not read that book, and as a general rule in my life, I avoid all books that meditate on death, especially tragic early death. There is too much grief in real life, why wallow in more?

    In general, I feel like life is defined by loss – everyone you love is going to die, or else you will die first. How is that for a cheerful attitude?

    My brother died when I was in my mid 20’s – he was 19. My mother died way too young, unexpectedly, 3 weeks after I had my first baby, and 2 days before she was due to fly here and meet him, her first grandkid. I am at the anniversary now, so I am thinking about it a lot. I realize now how sad she must have been, losing her own kid. It wasn’t until I had to stare down the real possiblity of losing my own kid that I realized how she felt. I am also sad that she didn’t get to do the grandkid thing. She loved Christmas more than anything, I regret that she never got to do CHristmas with the grandkids – she never got the chance to shower them with toys.

    My father died a few years ago. It wasn’t such a shock but it makes me feel alone in the world. My FIL died around the same time – my husband always wears his father’s gold ring how.

    OK, now I am feeling all bright and sunshiney

  55. Risley, research finds that PTSD is amazingly common in parents of kids who have had cancer. I would imagine that is true for parents of kids who have had any really serious medical condition.

  56. We, PTSD or not, my first husband was never the same after our child died. He came to believe that he had no agency over anything in life and began to live in a way that he framed his decisions as God’s will or otherwise externally dictated, almost entirely limiting his personal responsibility for the effects of any action or inaction other than fulfilling his necessary daily tasks at work (when he worked) or in his home after he was on his own.

  57. “He came to believe that he had no agency over anything in life”

    Certainly an understandable conclusion, given the circumstances.

  58. I have read many of these posts with a heavy heart. Some of these stories I’ve known, and some are new. I so admire the resilience of this group.

  59. Thanks to everyone for sharing. Anon Regular, in particular, I had never thought about the fact that the aftermath could be so hard, once you have time to process and are expected to be “happy”. I will file that away in my memory for the future.

    I have been incredibly lucky in my life so far. My grandparents have all passed in my lifetime, but that is pretty much it. I know this won’t last forever, and now that I have the perspective to realize how lucky I have been thus far, I try to appreciate it. But I definitely do not spend a lot of time worrying about what may go wrong, and I can’t relate to the feeling of worrying about shoes dropping.

  60. Ugh. DS has a fever, is missing school for the fourth day in a row. I’m not looking forward to the mountain of make-up work. This happens often enough that we really need to come up with a way for him to deal with it. Getting mono or the flu should not affect your college chances.

    I’ve been quiet on this thread, because I’m sick of crappy nasty sniping at me that no one here will speak out against. But if y’all are doing the kumbaya and hug and “it’s so nice we can support each other better” thing, then here goes. In the past, I have dealt with crises (giving a child up for adoption, a miscarriage, the divorce, learning I would be a single mother) well and carried on afterwards. I thought what was happening with my son was a crisis, but it is an on-going situation, exacerbated by poor decisions back then. Pulling back from life in a crisis, as LfB described at 10:39 3/30, makes sense short term, but if the crisis continues, or repeats for a long time, that withdrawal itself becomes a problem.

  61. My sympathies to the many people on this thread who have dealt with untimely death of loved ones and with severe physical illness, in themselves or others.

  62. Saac – you have dealt with a tremendous amount of issues on your own. I admire your spirit through it all.

  63. When I was just pregnant with ds1 (literally just a couple of weeks along – nobody but dh knew), my cousin’s 7 year old son died. They had been dealing with sundry health problems since he had been born (congenital heart defects among other things) but everything was under control at that point and the death was totally unexpected. I was a complete wreck at the funeral – bawled my eyes out the entire time. I was barely started down the road of motherhood and was confronted with evidence that things could go very badly. I’m sure the pregnancy hormones didn’t help. My poor cousins grief was palpable and raw for years. As my children pass and approach the age of her son when he died am struck again by the horifficc nature of her loss and pray that I never experiance it first hand.

  64. Isaac, I also admire your fortitude for handling everything like has thrown at you.

  65. Louise, thank you, sincerely. I feel like such a waste, and appreciate hearing that from you.

  66. “I thought what was happening with my son was a crisis, but it is an on-going situation. . . ”

    Which is about to change drastically in a very short time. I hope you’re looking forward to that, for both you and Saac.

  67. saac – don’t feel like a waste. You are a survivor and you just seem to keep plugging away to do the best for your child. Good for you for also trying to step up the exercise and weight loss. I definitely need to improve some of my self care health and fitness-wise.

    Louise – my son has GI issues which have resulted in delayed growth and malabsorption. None of the medications have helped much and I think he has small intestine bacterial overgrowth so we are cutting back sugar and improving diet.

  68. “The NTSB agrees with you”

    That should’ve been the NHTSA for car crashes. I think the NTSB agrees with you for plane and helicopter crashes.

  69. My drivers ed teacher 30 years ago told us to call them collisions instead of accidents.

  70. Thanks Mia! I do try to do the best for him, which is why it kills me when he makes poor choices.

    Finn, that’s three years away. I hope a lot changes between now and then.

  71. SM, I’m sure Saac will grow up and change a lot over the next three years, but from your perspective, I’m pretty sure it’ll go by very quickly.

  72. I forgot to mention executive function in this post. Those of you who have dealt with serious issues know this. Do this, don’t do that, list os instructions, questions to ask. It takes tremendous bandwidth and maybe that’s why even when things get better you need a stretch of time to recoup.

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