But We Did Everything Right

Every new parent hears the term SIDS - from the media, literature, their pediatrician, on baby items advertised to reduce its risk. Yet for most SIDS is this thing that happens to other people. It could never happen to them. And most people don't know of someone who lost a child to SIDS so it's kind of this weird unknown thing that people say happens but it doesn't seem real. Yeah, we hear about it from time to time but that's the extent of it. I was one of those disillusioned parents. We followed all of the expert advice to reduce the risk of SIDS - we didn't smoke, all my kids were breastfed, we didn't have toys or blankets kept in the crib, we always put our babies on their backs to sleep and made sure the room temperature wasn't too hot. We never brought a baby into our bed. And yet it happened to my perfect Josh. After a full medical history review, autopsy, labs and tissue sample testing they could find nothing wrong with him. So, Sudden Infant Death Syndrome was the "cause" of death. In some ways this is good because I don't feel guilt that we missed something but in other ways it is frustrating because I will always wonder what if the circumstances were different that day? What if at that moment in time he wasn't down for a nap and instead I was taking him for a walk? Maybe he would still be here if that were the case. Or was it going to happen anyway? Who really knows.

As the mother of a SIDS baby, I find it extremely annoying that the media seems to confuse people about the diagnosis. I stumbled upon this list from the CJ Foundation for SIDS that seems to help provide some clarity (I edited it slightly):

• SIDS claims the lives of almost 2,500 infants in the US each year - that's nearly 7 babies every day.
• SIDS is not caused by vaccines
• SIDS deaths occur unexpectedly and quickly to apparently healthy infants, usually during periods of sleep.
• SIDS is not caused by suffocation, choking, or smothering.
• SIDS is not caused by child abuse or neglect.
• SIDS is not contagious.
• SIDS occurs in families of all races and socioeconomic levels.
• SIDS cannot be predicted or prevented and can claim any baby, in spite of parents doing everything right.

I think my biggest pet peeve is that many people think suffocation and SIDS are the same thing which couldn't be farther from the truth. Although the death of a child from suffocation is tragic and horrible it is also preventable. SIDS isn't. In fact research is starting to indicate a possible brain stem abnormality in these babies that effects breathing, heart rate, and the ability to awaken. Even Parents magazine can't get their facts right. They did an article a few months ago supposedly to highlight the risks of SIDS however every family profiled in the article had a baby who died as a result of parents not following safe sleep practices. Although information about preventing suffocation and accidents is certainly important, it is also the responsibility of the media not to confuse this with SIDS. 

I guess my take home message is that parents do need to do their best to reduce the risk of suffocation as well as other accidents but to also keep in mind that despite doing everything right things can still go wrong. A year ago I would have shrugged this sort of thing off because of course it wouldn't happen to me (because bad things like that only happen to other people!). Boy was I wrong. 

Not an hour goes by that I don't think of Josh. It's been 8 months since we lost him but seems like just yesterday. I've been struggling a bit lately - there have been so many reminders that he should be here. He should have been with us while we were watching the Super Bowl. He should have been with us while we had snow days this week and we were all having a snowball fight together. Every single happy family moment is overshadowed by the fact he isn't here. The other night when I discovered a mouse in our closet and we proceeded to have some family excitement trying to find and catch it we were hysterically laughing because it was so funny. After it all calmed down I was hit with such pain and started to cry. A few weeks ago I was folding laundry on a Sunday afternoon and got this strong urge to go to him. Thankfully I could escape for a bit and I went and just sat there and cried for a good hour. I sat there against "our" tree and just allowed myself to miss him. I think back to the day he went to heaven and how horrible it was. I remember every single detail of that day and find my thoughts going back to it despite me trying not to. Last week I attended a support group for those who have also suffered the loss of an infant (due to a variety of reasons, not just SIDS) and found it very helpful to hear other moms' stories and relate to them on a level no one else can truly understand. 
Anyway, we continue to move forward but some days are harder than others. And I guess that I should expect it will be like that for quite a long time. Mommy loves you Josh. 

Happy New Year!

I have never been more excited about the start of a new year than I was a few days ago as we said hello to 2014. What an awful year 2013 was - not only for my family but for so many people I know. So many loved ones passed away in 2013 - parents, siblings, spouses - many dying suddenly and leaving family members grasping for answers. It seemed as if every other week I'd hear about more bad news about tragic deaths that affected people I know - from suicides to freak auto accidents, to sudden deaths from underlying medical problems. Stories of kids dying such as hearing in my SIDS online support group about a family who lost a baby to SIDS and had just lost another child six months earlier.  A friend who lost her father and brother within a couple months of each other. It really was a horrible year. I'm not normally superstitious but perhaps there is something to the "13" in 2013. Here's to hoping that 2014 brings happiness, peace, and joy to everyone!

We made it through Christmas. This was another reason I was so looking forward to the new year because it would signify that Christmas was over. Normally I cringe a bit as December approaches. I like Christmas, but to me December signifies 5,378 extra details to keep track of - from planning for and buying gifts for the kids, the husband, and other family members (thank goodness for Amazon Prime), to Christmas cards, baking cookies, teacher gifts, class parties, 3rd grade secret santa gifts, wrapping, cub scout Christmas caroling, 2 school/daycare Christmas programs, a piano recital, getting the tree, decorating, etc. etc. etc. It makes my head spin. On top of that Ben has a birthday in December so we have a party to plan, gifts, cake, class celebration, etc. So, yeah, December usually is fun but it's completely action-packed and stressful! On top of that I had a trip to the ER (3 year old fell and got a mild concussion) on the six month anniversary of Josh's death. It was hard walking back in that ER where I had to relive the worst day of my life, especially six months to the day it happened.  And this year I felt like I couldn't fully embrace the season. It was completely not fair that instead of taking fun pictures of Josh "opening" gifts as a 9 month old, we instead visited his grave on the way to Christmas Eve mass. We all struggled a bit in the weeks leading up to Christmas - the kids were a bit more emotional and we had our moments. At the mass the Sunday before Christmas I was a bawling mess; in part from dealing with the feelings of missing my child during this time of year and in part due to the fact that a baby named Joshua was baptized at that mass (I mean, really?? If it didn't hurt the irony would almost be comical). So, the fact that we survived our first Christmas without Josh was to me a huge accomplishment. He was still with us in many ways - I ordered a stocking for him and it hung on the mantle like the rest of our family's. I also bought a special ornament that I felt perfectly reflected him in heaven - it's an infant wrapped in heart-shaped angel wings.

 

We also finally got Josh's official death certificate and his official cause of death. It was indeed Sudden Infant Death Syndrome. Although not unexpected, I have mixed feelings about this. On the one hand I'm glad that there was no underlying disease or illness that would make me question if I had missed any signs. However the diagnosis of SIDS to me is still not really an answer. It's a diagnosis of exclusion - basically after the autopsy and all the tests they still have no idea why he died. I am planning to write another post soon about SIDS and what it is and isn't. There is so much confusion about this diagnosis (for example it is NOT suffocation) that I feel it important to set the record straight. 

Finally, I have a brief update on "J", the guy who was in that horrible accident. Luckily he will walk again after undergoing several surgeries and rehab. I'm told he is at home now and doing well all things considered. The guy who hit him was charged with a DUI and also had been charged with another DUI the week before the accident. Hopefully he will lose his license for a long, long time and get the help he so obviously needs. 

We continue to soldier on as best we can and continue to remain thankful for everyone's support, love, and prayers. Let's all hope and pray for a happy, healthy 2014. My sister Laura has declared it the "Year of All the Good Things" and I hope she is right!