“At least…”

I know we have all been guilty of this, but when someone (baby or adult) dies, we try to make the bereaved feel better by saying “at least…..he didn’t suffer” or “at least……you got to spend time with her” or “at least he isn’t a burden anymore” or “at least she lived a long full life.” None of these “At least…”  sayings make someone feel good, because they are thinking “but I want him/her back here and healthy and not in heaven and not because God needed an angel…” Etc. 

Let’s say that my beautiful cat died tomorrow. Don’t say “at least he lived with you for ten years!” because it no amount of time is enough. Tell me you’re sorry. Give me a virtual hug. Tell me what a wonderful boy he was. Ask me if there is something you can do to make me feel better. Next time someone dies, just try to remember that no one is the “least” bit anything.

 

 

 

 

 

 

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Should You Invite a Grieving Mother to a Baby Shower?

I was recently asked this question.  If it is someone close to me or that I work with, what is the proper way to let Angel Mom know that you are expecting and/or having a shower?

1.  It is painful to find out that people have been keeping it a secret around me.  It is hurtful to know that there have been multiple conversations that have gone on about how no one knows what is best for me and how no one wants to be the bearer of “bad” news that someone else got pregnant and/or made it to 30 weeks (long enough to get a shower and make a nursery) or whatever.

2.  In the Angel Mom world, there is usually a “heads up” private message.  “Hey, I am pregnant again.  I am x weeks and so far everything looks good.  I wanted to let you know before you found out from so and so.  xo. ”   This is usually followed up by an acknowledgement of how nice it was to not hear it through a third party (like it was purposely omitted) and that I may or may not unfollow their facebook feed, but that I am thrilled for them.  (And of course a little sad for me, but that is normal and ok. I don’t need to include that.)  BUT the pregnant Angel Mom has given me warning that she might post pregnancy stuff on her wall and she also knows that if things start to go wrong that I am *righthere* waiting in the wings to be a support. There doesn’t have to be an awkward “I didn’t tell you I was pregnant because I didn’t know how and now they think I am miscarrying, can you help talk me through it?”  Which, of course I would be supportive but it would be a little weird.  Like, I am good enough to help go through the pain, but not strong enough to be happy for good news. 

3.  Send me an invite to your baby shower if I would otherwise be invited.  Let ME make the choice.  Again, don’t think that you are doing “what is best” for me by not including me.  I am 99% sure I won’t go (baby showers are torture for me) but I will probably send a gift if it is your first baby.  Unlike some Angel Moms, I don’t mind baby clothes stores or shopping for baby gifts.  Some women burst into tears and that is ok.  Some just send an Amazon card. INVITE ME. 

If you have any questions about this, let me know.  I’d love to educate you about this.  🙂

And remember this does not mean that I need everyone on my facebook feed to tell me they are ‘with child”  –  it is the BFFs and cousins and coworkers, etc.  And no, this isn’t pertaining to anyone in particular right now.  😉  Luckily people have an open dialogue with me about this stuff and say “Hey Jules.  We are pregnant.  Let me know how involved you want to be. I understand it is hard.”

One of these days, I am going to go to those showers and want to hold your newborn.  For now, I tell you I can’t but I appreciate you asking.  🙂  And I do. 

 

 

3.

 

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Am I Okay? Or better yet, am I “fine?”

After you have a loss of any kind, many people ask how you’re doing. The answer, unless you want to freak people out or talk about your mental health at length is FINE. You’re FINE. Usually you should also nod your head in a “yes” fashion and purse your lips together, too. That is the universal language of “I don’t really want to talk about it and you don’t really want to know how I am doing anyway.”I mean, what if one day I told everyone how I was really feeling? To be honest, I am much better these days – 6 years later — but in the early days there was a lot of Jagermeister and karaoke and napping involved. But if you catch me on March 4-12 (the days Sparky lived) or close to a holiday I might not be “fine.”When I was working with Hospice of Michigan, I was doing a phone survey and one of the questions to the caregiver of a dying child was something like “do you think that we have fully explained to you the magnitude of this situation?” and the mom was like, “no, and I don’t think that I really want to know.” Which I thought was a great honest answer. Someone who has not had their child very ill may think that she is avoiding reality, blah blah. But to be honest, I said that I understood that perfectly. Her son died a few days later.What to remember is that a grieving person is going to be “fine” to most people but might hopefully be honest to someone who they think can handle how they are really feeling. All it takes is one person giving a blank look and not knowing what to say to close off that line of communication. I did seek counseling after two of my losses and as it turns out, “fine” was an okay enough answer for the counselors. But am I fine? I think I am fine enough. Years later. And I hope that you can be, too. That’s why I am writing this stuff down.

via Am I Okay? Or better yet, am I "fine?".

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I Became a Swan When My Son Died

My son died seven years ago today after fighting hard for eight days of life to stay alive.  To most of us, eight days is something we cannot wait to pass —  like when we are waiting for a vacation or a holiday.  For us, those eight days were his entire lifetime. 

Sparky was very fragile and premature after being born at only 23 weeks.  I do wonder sometimes what his quality of life would be like had he lived.  Would he have cerebral palsy? Blindness? Major brain or heart problems? We would love him just the same, of course, but his chances of living a perfectly healthy life reduced dramatically when he was born on March 4 instead of his due date which was June 30.

Your last day was a pretty sad day.  Your dad and I stayed the night at the NICU in a little room that was used for families to stay overnight in case of emergencies.  Your health was already going downhill the night before and they cautioned us not to leave.  You had developed some serious infections and your body had started to shut down.  Everything is a major blur, but I know for sure that I asked your doctor if that day was “the day’ and he gave me a quiet nod.  They switched you into “comfort care” and somehow relatives came from the other side of the state.  It was a Monday. I knew I hated Mondays for some reason.

Time stands still when something like this happens and it speeds up at the same time.  They put a little quilted partition around your area so that we could grieve and say our goodbyes without feeling like the other families were staring at us…  or maybe it was so they couldn’t see the horror in our eyes…? After a little time, they had all of us go to a little room where cookies and coffee and pop were waiting and a photographer had shown up to take pictures of our goodbyes.  Everyone kept looking at me. I think they pitied me but I think they were also taking cues from me to make sure they were not being too emotional for my sake.

I remember these little details because they are part of my life with you.  They are all I have left.

I don’t know how much more detail is important here.  We had a funeral back in Detroit and then we had a memorial here at home in Grand Haven in the family center of the local Catholic church. Yes yes, I know mommy is not Catholic anymore, but she did have you baptized by a Sister who Nunya knows.  And, to be honest, I find the church comforting.  I may not believe in the religion anymore, but I do believe in paying attention to how things and people and places make me feel. 

Something I don’t think I have share before is that when we came home a swan had died out on the bayou behind the house.  It was intact but frozen to the ice. There didn’t seem to be any outward signs of trauma, but it was hard to tell since it was a little far down the hill.  Anyway, for a few days there were all sorts of swans and ducks and geese who came to visit this swan. I don’t know if they were protecting it from predators or if they were joining in grief, but it was a really poignant, beautiful site.

Anyway, you had a beautiful funeral and so many lovely friends and family came to both of your services.  I don’t remember what was said to me, but I remember how it made me feel.  I felt loved.  These people barely knew you, but they knew us and they knew how desperately we wanted you to live and grow strong and become a big boy.  Like the swans, all we needed was for some kind-hearted souls to come and hold us up for a little while.  And I remember that they did.  And I think I was beginning to realize how important that is in the grief process. 

Some of the strongest women in my life are other baby loss mamas. They hold me up, they support me, they come to my side if there is ever a time when I am in need. Just like the fiercely protective swans. Today I looked up the wikipedia about swans and it says that the word comes from the Indo-European root of “to sound or to sing.” I know so many amazing women who are sounding and singing for their lost babies all around the world doing some wonderful things. I do what I can do. I guess I am a permanent fixture around some people’s virtual nests. Just holding them up. Just smiling or hugging if they need it.

Thank you for helping me be a swan and for helping me to look at life through such different eyes.


People will forget what you said
People will forget what you did
But people will never forget how you made them feel.

~ Maya Angelou

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Will My Marriage Crumble if I Have Weight Loss Surgery?

People ask this question a lot.  I would also get asked this question when I met someone who just lost a child.  “I’ve heard that such big changes can end my marriage! Is that true?”  Well, yes and no. 

Just like having another baby won’t “fix” a failing marriage (we’ve all seen that one, right?) losing a baby or losing 100 lbs does not mean that you will get divorced.  It is tough, true.  BUT, the advice I give people is that if your marriage is bad, it will probably get worse.  If it is good, it will probably stay the same or get better.  I don’t want to simplify it and only you both know if your marriage is “bad” or “good” or if it will be bad or good in hindsight. But, losing a ton of weight or having a ton of grief changes people and for two people to come out unscathed there has to be a lot of respect, trust, understanding, and a good foundation to the marriage.  If that’s not there, well? I mean, WLS or having a new baby or having a baby die never *fixes* a failing marriage.  We can all agree on that, right?

I guess we need to look at the reasons for wanting surgery in the first place.  Is it to make your husband jealous?  Are you not getting enough attention? Or do you want to be happy and healthy?  How do you think that you will react to the new attention you’re getting from people of the gender that you find attractive?  (See that I didn’t assume that you were straight! See what I did there? 🙂  ) These are questions to think about before surgery because if you follow the program you WILL lose weight. You may not get skinny, you may not keep it all off, but your self esteem might change and life could get different.  Your spouse might feel left out.  He/she might feel unattractive now.  Maybe you are talking about food and diet and carbs too much and that is boring to him/her. 

So, it’s a good thing to wonder about but honestly, I cannot tell you for sure.  You’ll have to work at it.  But if you already have good communication skills –  you’re doing great!

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Losing a baby: What it’s like 9 years later.

Tomorrow marks nine years from the day I lost my first child. I was 16.5 weeks and my cervix would not hold him in for some reason, but he was otherwise genetically perfect. Nine years later, though, things are different.

1. I still remember the hospital room, the smells, the nurses, the having to almost skulk out in the middle of the night so that people in the waiting room would be like “Oh you’re leaving, where is your BABY??”
2. I’ve stopped looking for other 9 year old boys to see if I can see a glimpse of what my baby would look like. I can’t. I won’t. He’s gone.
3. That said, I still have dreams that he is still at the hospital. I have dreams that he never died and it was all a big mistake. Sometimes he is just a potato sized lump of flesh hooked up to a long cord in the wall.
4. I still get a pain in my heart when the school bus drops the kids off in front of the house.
5. I don’t wonder what he would have liked because I honestly don’t know what kids these days are into. I just sort of avoid the whole kid thing, cartoons, kid tv shows. Like, why would I care about that?
6. I have already been a 5 year perinatal hospice volunteer, knitted thousands of preemie hats, volunteered at my NICU, and been through weeks of grief training. Now? I’m sort of over it. It was all pretty thankless. People thought I was doing it to make myself feel better and not because I really wanted to make a difference.
7. I’ll be 40 in April. When I was 31 it was a good age to have a child. Now, it’s just not. That’s ok. I gave it the college try.
8. When I see tv shows or news reports about people leaving their kids in a hot car and killing them (intentionally or not) I guess I am immune to it now. I have already spent too much time being angry that some assholes can have kids and we can’t.
9. I have little patience for bratty kids in stores. Some parents actually seem to antagonize the behavior. This isn’t because I don’t “get” it, I just don’t think people care about what is outside of their little world when it encroaches on my world. Some people are perfectly pleasant and have pleasant adorable kids. Some people scream at their kids and spank them in the Hamburger Helper aisle.
10. 9 years later. It still sucks. And I’m realizing it’s permanent. I have a full happy life but it is nothing I would have envisioned. And that’s not a bad thing. It’s just a thing.

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What have I been eating since I got weight loss surgery?

Well, what I could eat early on is very different.  A surgeon has you go in stages.  Clear liquids (and they make sure your newly modifed stomach is not leaking!), reqular liquids like broths and yogurts, then about 12-14 days later you get to move on to pureed foods and cottage cheese.  We’re healing the incision line, not trying to torture you!  But because you were on a two week liquid diet for 2 weeks before surgery your body is already used to not eating chicken strips and mac and cheese etc.

When you are finally allowed to eat refried beans it is like the best day of your life.  (Fat free of course.) And I added cheese shreds and verde hot sauce. I could get in about 2 tablespoons.

* cue up that Don’t Know What Ya Got Til it’s Gonnnnne” song……Cinderella?

Anyway, years later what do I eat?  I eat a protein coffee flavored shake on a normal day with 15 grams of protein.  A hard boiled egg or a string cheese for a snack. A lean cuisine type meal (Atkins are good!) with 16 or more grams of protein for lunch, some jerky as an afternoon snack, a small amount of what we have for dinner maybe 3-4 oz of steak and 2 tablespoons of potato salad, a Chobani greek yogurt Flip style before bed…

I drink fluids all day. Not all good fluids.  I like real sugar and my body tolerates it. When we go to dinner I order an appetizer as my main course.  (Kids meals are all corn dogs and fried crap. No wonder kids are having issues.)

Anyway, I eat less of what most people do.  And that is ok.  🙂  Protein comes first, then veggies, then fruit.  I get 60-70 grams of proten per day (was more when I was bigger and losing) and about 70-80 grams of sugar free fluids.

Just to give you an idea, a Lean Cuisine with none of the rice fills me up. If we went to MC Donalds I would get a double cheese burger and throw the top bun away and I would be full on that.  5-6 jumbo shrimp fills me up.  Oh and what happens if I eat too much? My nose starts running, then I hiccup, then it would come back up.  That has never happened to me in 2.5 years though!

Ah well, happy eating! And ask any questions you have —  I have heard it all before!

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