Dear family, friends, doctors, and strangers:
We belong to a group that is diverse in ethnicities, ages, social statuses, income statuses, and nationalities. Although some of us have never met, we are all connected by one subject that still remains taboo: We lost our infants to SIDS.
We deal with a range of emotions, thoughts, and feelings every day. We no longer know how to answer the question “How many children do you have?” We have clothing, books, toys, and furniture in our homes and storage units that we have no idea what to do with.
We deal with misinformation every day. We sign onto Facebook and see ads for products that boast to “reduce the risk of SIDS”, which is not only false advertising but a slap in the face to us. Tell the parents who lost their babies while they slept in the sleep sacks, blankets, and mattresses that are advertised as a means of savior that their chance of SIDS was “reduced.”
When we go to hospitals, doctors’ offices, and even family support offices we are greeted with posters that tell us how to “prevent SIDS”, as though SIDS can actually be prevented (it can’t) and that we didn’t do our part in keeping it from happening to our babies. Yes, though some of us did sleep with our infants, didn’t use pacifiers, and didn’t have fans on-most of us did.
We have learned to be very understanding although that understanding hasn’t always been reciprocated. We were understanding as friends and family disappeared in the days, weeks, and months after our children’s deaths. We were understanding as we received e-mails, texts, and phone calls from those that we counted on, telling us that they couldn’t see us or visit us because of rising gas costs, boyfriend problems, or headaches. We were understanding when the invitations to parties, dinners, movies, and get togethers stopped. In the meantime, we sat in silent houses by ourselves, surrounded by memories that weren’t always good.
You made us understand when you couldn’t come to the visitation or funeral and a year later, when we still haven’t seen you even though you live all of ten minutes away, we still have to try to understand.
We’ve been understanding as we listened to your religious explanations that we may or may not have agreed with, to your well meaning “advice” when you told us to “move on”, and to the inevitable comparisons that you made in regards to the loss of your grandmother, parent, or dog.
When we weren’t understanding, we were chastised and made to feel guilty. So we learned to keep our feelings to ourselves. We learned early on that people felt uncomfortable about what had happened to our children so we refrained from talking about them and their deaths, although we wanted to talk about them more than anything. We faked smiles, pretended to be in good spirits, and forced ourselves to be social when on the inside there were days when it was all we could do to force ourselves out of bed.
To our doctors, we have discovered that we don’t get the same care that we used to. If our children are ill, we find that it’s not always easy to convince medical professionals that there is something wrong with them. We will forever be labeled as “SIDS parents” and doctors always look at us with a little bit of skepticism, part of them sure that we are simply being paranoid. When we have serious health issues, we are sometimes treated disrespectfully and told that they are “psychological” and that we are just “sensitive” because of what happened in the past.
And speaking of doctors, can you please utilize the 30 seconds that it would take you to glance at our charts to become familiar with our history? When you ask us how many pregnancies we’ve had and how many “living children” we have, please do not assume that the “missing child” was a stillborn or miscarriage. It’s hard for us to have to correct you on this every single time. Learn who we are.
We’ve indignantly listened as you accused us of being “jealous” over the fact that you have a living child. The fact is, we are not jealous of your baby-we don’t want YOUR baby. We want ours back.
What we DO envy, however, is your innocence. We watch and listen as you innocently put your babies or little ones to sleep every night, sure that nothing bad will happen to them. There might even be a small part of you that thinks that we must have done something wrong, because the idea that a child can die for apparently no reason is simply too horrific and unfathomable. You put them down for naps or put them to sleep in separate rooms from you, feeling secure in the fact that they will wake up in a few hours. We will never feel that way again. We wish that we could have that back. We will submit to checking our other children every few minutes to see if they are breathing, buying energy drinks to keep ourselves awake while our children sleep, purchasing monitors that will alarm when the breathing stops, and having panic attacks when we think we detect unnatural stillness.
We have become used to being the topics of conversations, although few people dare to venture having conversations with us about our children. Our stories are passed around to friends, family members, and even strangers as fodder for conversation. People speculate about our mental health, our grieving process, and our family life as casually as they talk about the weather. We’ve had status updates, Tweets, blog entries, text messages, and even short stories written about us. In some ways, we’ve become a type of celebrity, as though what happened to us was so bad that it’s up for public display.
While some of us were lucky enough to have paramedics, social workers, doctors, coroners, investigators, and funeral directors that were compassionate and understanding, others were not. Some of us submitted to humiliating investigations in which personal items were taken from our homes, friends and family members were interviewed, and social workers came to “teach” us how to take care of our remaining children. Some of us were allowed to ride in the ambulances with our babies, touch them, and even hold them one last time. Others were immediately treated as criminals and kept separated from their child’s body until the funeral.
We have been told that “at least” we have memories of our child. We would rather have our child. And not all of our memories are good ones. Intermixed with the memories of our children smiling, cooing, and cuddling with us are the memories of their funeral, how they looked when we discovered them, and for some of us, they way that they felt when their once warm bodies became lifeless. We have become used to sleepless nights, nightmares, panic attacks, depression, and constant anxiety. It’s difficult to remember a time when we didn’t feel these things.
We also feel guilty. We feel guilty that we can’t always be good partners to our spouses, that we aren’t there for our friends as much as we used to be, and that we don’t always have the energy to play with our remaining children. Sometimes, the guilt is worse than our sadness.
Please don’t mistake our tenacity for us doing well. Yes, we still manage to get up every morning (or most mornings), go to work, drive our cars, and take care of our families. We do these things because we have to. It doesn’t mean that we are “over it”, that we have “moved on”, or that we aren’t sad.
We greatly appreciate those of you who have stuck around, talked to us, cooked us meals, and continued to be our friends. We don’t know what to say to you but “thank you” and we hope that’s enough for now. We’ve seen a lot of kindness and generosity and those things have made our time bearable.
Lastly, we are doing the best that we can. While it might not seem to you like we are always handling things in the best manner, please remember that there are no manuals for these things. You can look at your grief charts, talk pop psychology to us, and refer us to books by other people who have dealt with loss but at the end of the day we’re all individuals and we handle things in our own ways. They may not be the way that you think that you would handle them, but hopefully you will never be in our shoes and have to find out.