Unintentional Hurts #2: The Boob Nazis

Yes, I am referring to the La Leche League. I heard a friend and fellow mother call them this and it made me laugh out loud. I want to say up front that their overall mission of helping women that want to breast feed is very respectable. It is an art that has been mostly passed down from women to women over the centuries, and many have trouble making it work without this kind of support. BUT, they definitely suffer from the mob mentality of feeling pretty militant that it is the only way to feed your baby. They are also eager to tell you that your child will be less intelligent, suffer from allergies and other medical issues, will have a higher propensity to be obese, that you will be more susceptible to breast cancer, and all sorts of other things based on scaring the bejesus out of new mothers so that they will do it. I, once upon a time, took all that information in and was primed and ready to join the La Leche League troops.

Then we had a child that unbeknownst to us, was born with a metabolic genetic disorder. On day four of his life, he passed away. In hindsight, knowing the extent of his illness and what his limitations were, what he ate had a lot to do with his death. The facts are undeniable. Children with this illness have a 90% chance of survival if it is known that they have it. Less than 10% get sick and die in the neonatal period. Of those babies, 99% come from mothers who breastfeed exclusively. In our country where the boob nazis prevail, we lose a significant number of babies to metabolic genetic disorders. In Europe, where the La Leche League has little to no presence, it is common practice during the first few days of life when mom’s milk is not yet fully in to supplement with formula. As a result, they lose a lot fewer babies than we do in the United States to metabolic disorders.

I know it is easy for the members of this group to blow this kind of thing off. It is easy to do when it is not your child. Do the few that die in the United States justify the many that live? How do you explain this to a grieving mother? All I can tell you is that I would rather have a child with allergies than a child that is dead. Their advice that they gave me was just plain negligent and I am pretty angry about that. What gets me going is when I hear moms say “breastfeeding saves lives” when it didn’t save my child. Breastfeeding had the opposite effect in my household.

So what do I suggest given my experience? The fact is that mom’s milk takes 3-5 days to fully come in. Some babies are poor eaters on top of that. I know of plenty of babies that do not have problems with nipple confusion when their parents supplement with formula until they get the hang of breastfeeding. (Nipple Confusion is when you switch from bottle to breastfeeding, and the baby gets confused and has problems eating. They use different muscles when they eat from a bottle, than when they eat from mom.) In my mind, it isn’t worth risking. The important thing is that your child eats, and however that happens is irrelevant. There are worse things you can do with your baby than give he or she a bottle.

I wish I had never been taught this stuff and had been given the opportunity to let my instincts prevail rather than follow the faulty advice I was given. I never had a problem with bottle feeding before I started pursuing natural childbirth and all that comes with it. But, I was a new parent, and one that acknowledged that I didn’t know anything about raising a baby, and sought as much instruction as I could to learn what I needed to do to be able to do this. I pay for it every day now and will for the rest of my life.

The best side of me?

I am now eleven months into this grief journey, and where am I? Frustrated. I am learning that I will visit and revisit the same grief stages over and over again for varying lengths of time. How can I be here again?! I just did this! This is what I think to myself quite often. I spend a lot of time feeling guilty because the people in my life do not get the best of me. I am a terrible friend. I have the hardest time keeping up with phone calls and emails that so many of you so kindly send me. I am a mediocre wife. I have days when I can put time and energy into my marriage, and times when taking care of me is all I can do. I am a terrible family member. I don’t understand how they are grieving and living life post-Noah and judge them for it. I can be a spotty employee at my job. When my grief gets to be too much, I can be short-tempered and disorganized. The sharp, efficient worker that they hired seems to disappear. To all, I unload my problems on them and expect them to take it over and over again, when quite honestly, a grieving mother is sometimes too much for the regular person to handle. Furthermore, my whole world revolves around my boys and not much else. Grieving Noah and processing what has happened, and desperately fighting for hope and meaningful life with Aaron’s arrival. I don’t have room for much else. I am sure that the rest of the people in my world have interesting things going on that I should be investing time and energy in, but I only have room for this. Again, this is not the best of me.

Or is it? Here I am makeup off, gloves off, stripped down of all defenses, modesty and pride. This is the real deal – naked emotion both good and bad. This is raw me and my deep love for my son and my grief and having to learn to cope in a world where Noah can’t be. What is the best side of me? Was I being inauthentic before all of this happened? I know that this version of me now can be a bit much to handle, but it doesn’t get any more authentic and real than this. Throw me in hot water and this is who I am, laying it all out on my sleeves and fighting to process every last bit of it so that I can not just survive but live. Either way, this is how I have to do it. And to those that stick with me along the way, bless you because you mean the world to me for your patience, love and understanding

New Series: The Unintentional Hurts

Plenty of people in my life don’t talk to me about what I have been through. I think it is uncomfortable for them because they have no idea if what they are saying is something that is going to make me upset. And then if I do get upset, what are you supposed to do with me then? I have to say that I am pretty fortunate. I don’t have people saying the myriad of horrible things that I hear others in my grief groups complain about with their own friends and family. You guys are a pretty sensitive bunch and take great care with me. I can’t thank you enough!

So how about this: how about I clear the air and let you know what the sensitive things are that get me riled up are so you know what topics to tread carefully on? I call these the “unintentional hurts” because I truly believe that no one is setting out to hurt me in the slightest. Most of them have to do with those of us going on about our daily lives, and something that you say or do (or not say or do) without realizing it is triggering something in me. So here goes…

Unintentional Hurt #1: Turning a blind eye to the SIDS risks.

I know that we roll our eyes when our doctors and others within the child rearing community harp on and on about things being at risk of causing SIDS in babies. (SIDS = Sudden Infant Death Syndrome) I used to do that too. Now, I spend a lot of time in grief groups with parents who have found out the hard way why those warnings exist. Because I already know what it is to lose a child, I will not risk going through this again. I take this stuff very seriously this time. With Aaron, he will not have a crib bumper in his bed, he will sleep in a bassinet rather than co-sleep with Chris and I, he will wear sleep sacks rather than be cuddled in a blanket while he sleeps, and he will not be re-using old baby things that have been around for ages because of the risk of recalls, and other accidents. There are a million-and-five great baby products out there that are cute and seem to make your life more functional, but I would rather have my child safe and alive than risk using these things. The guilt that these parents in my group feel is unfathomable. Why risk that?

I see other parents that, despite all the warnings out there, decide somehow that the worst can’t really happen to them, and my heart just drops. I know better. Why risk doing that to your child as well as to you? This life of trying to live on past your children is no picnic, and I waver on whether or not to say something to them. I guess the moral of the story is, if this is you, please keep these choices out of my view, because it kills me to see it.

Trying to Frame the Questions

I feel kind of incapable of completing coherent thoughts these days. Between by pregnant brain and my grieving one, I am suffering quite a bit from having lots of tough thoughts and questions circling around inside of me, and unable to get it organized and out. I jump from one thought to another in such a random pattern. It is like having severe ADD. I start one thing, then think of another, and in fear of forgetting the new thought I start chasing it down, and lose the first thought I had to begin with. I am a very structured and efficient person ordinarily, so the loss of that side of me is hard. I remember spending a lot of early days after Noah died being pissed off at myself because I would forget things that I ordinarily wouldn’t. I had to come to terms with the fact that my son changed my life in both obvious and yet not so obvious ways. To expect the old me to be there is setting myself up for failure. So I take what comes, and try to learn to deal with the messy, disorganized Sarah. I keep a journal by me at all times now to track my random thoughts. Sometimes it’s about work. Sometimes it’s about grief. Sometimes it’s about the grocery list, or to remind myself that I am out of checks, so go order more. I look through it later in the day and am amazed at the randomness that is just me right now.

Meanwhile, I have about a bazillion blog posts inside of me about my grief, and I can’t figure out how to write it or pose my questions to God and the Universe. So frustrating. Maybe it just isn’t time yet to work those things out. Here’s what’s on the tip of my tongue:

• How do you love an imperfect God?


• How do I find a way to be ok in a world where people are going to do what they want to do regardless of what is or may be insensitive to my grief?


• My big Noah anniversaries are coming up, and how can I get through them remembering him the way I want, while not alienating others?


• How do I face the many fears that I feel about being a parent again when it all went so wrong last time?


• I can get pretty angry about a lot of things to the point that I feel downright crazy. How to I work that out?

I have been encouraged to believe that emotions tend to come up at just the right time to help me heal. When something really starts poking at me hard, it is time to face it and begin the difficult work of figuring out the finer details of it, whatever it is. As hard as you try, you can’t force it. It comes in its own time in its own way. Until then, I will be meditating on these and many other things. Such is the life of a grieving person.

Reading the Signs

I am going to preface this by explaining a bit about Noah's illness, MCADD. MCADD is basically life threatening hypoglycemia. As fast as an infant's metabolism works, they can run on empty pretty easily, and then their body systems shut down rapidly. This is what happened to Noah, and why I am so anxious around feeding babies...

One of the things that really scares me is that I went through a whole pregnancy with Noah and didn’t know he was sick. I went through child birth with him with no problem. I spent four days doing nothing but focus entirely on him when he was alive and never noticed anything. He was a terrible eater. Everyone said that that typical of newborns, and also ones that are born before their due dates (he came 3 weeks early.) I spent almost the entirety of those days trying to get him to eat. I spent a lot of time wondering if I should keep pushing as hard as I was, or if being the instinctual creature he was that when he was hungry, he’d let me know. The problem was that being the instinctual creature he was, he did what his instincts told him and he died. He was terribly sick and I never knew. The signs were very subtle. Being a new parent, I couldn’t pick them up. No one did. I can ease some of the guilt that way. None of the pediatricians, nurses, lactation consultants, doula, grandparents, or anyone else he saw noticed anything wrong with him. I worry tremendously about the things babies feel and can’t tell us. Like if Aaron is uncomfortable and can’t communicate that to me. SIDS parents can lose babies that way. They (and I) beat themselves up over how they could have missed the signs when it is too late and their infant died. Those early days are so critical. Those are when they are so very helpless and depend on us as their parents the most. How can I do this and know he will be ok?

Hello again blog, I have missed you.

I spend a lot of time reading the blogs of other moms coping with the loss of their own babies. I feel such a connection to them because what we feel seems to be universal. Some are new in their journeys, and some are years later with a house full of other children they have had since. It doesn’t ever go away completely, this grief. We always hold a candle for these lost children whether we talk openly about it or not. One older woman I know that I talk to regularly lost a baby when she was my age. The loss is always on the tip of her tongue. She wants to tell me that she knows exactly how I feel, but can’t get the words out. I feel the pain in her voice though nonetheless. It is always there no matter where life takes us or what we do.

At the risk of sounding like Shrek with his famous line about onions, like ogres, grief works the same way. You heal what is right before you, and then another stinky layer surfaces. I think that is why so many of us keep blogs. There has to be some way to get it out, and writing is a wonderful outlet. I let this blog sag away and decay, and in the meantime have been following the journeys of others and feeling envious of their open nature on their blogs. That is going to change now. Prepare yourselves for more journeys into the heart and mind of a grieving mother.

For some of you, continuing to read this stuff may be too hard and depressing for you. I don’t take offense. More than that, I envy that you don’t walk through the world with this sort of thing hanging over your hearts and minds. It is a blessing, and you should feel grateful for it every day. For others that don’t mind following some doom and gloom, thanks for sticking with me.

Where am I today on all of this? I did a lot of work up front in my grief for several months. It helped tremendously. I got a nice break for a while when I could walk through the world with it not being so bad. I always felt sad about it, don’t get me wrong there. I would hear a song on the radio while out running errands (I am always freaking crying in my car for some reason), or someone would say something (or not say something) that would get me going. But it wasn’t every day. During that time, I got pregnant again, and now things are starting to change.

There are a number of things that you can kind of deal with by avoiding, especially with the loss of an infant. I think I would feel sad during a subsequent pregnancy whether I waited 6 months or 10 years. The reason why is that the last (and only) time I cared for an infant, he died. I am now beginning to care for another infant. While it is absolutely exciting and joyful, it completely scares me to my core. I am analyzing everything that I did or didn’t do with Noah, and agonizing how I am going to do this again with Aaron.

Rather than sit and ruminate over these things with no resolution, I am going back to the things that helped me in the first place: working regularly with a counselor, going back to grief groups more aggressively, and writing. Lots of writing.

So here goes. Much more to come.