Natalie's 7th Birthday

Today would have been Natalie's 7th birthday. I was doing OK in the days leading up to it. I thought I was getting to a better place in my grief. But, today has been really rough. I can't seem to stop crying. I killed a few hours watching a Harry Potter movie double feature with the kids. Gabriel slept on my lap through much of it, which was such a wonderful gift. There's nothing a mother loves more than cradling her sleeping child. But, we can't watch Harry Potter all day and as soon as the movie ended, I started to cry again. After a few minutes to myself rocking in the glider up in what used to be Natalie's room (now Gabriel's), I got the sudden urge to tidy up her garden. Talk about therapeutic! Clipping deadheads off the butterfly bush was so peaceful and pulling up pesky weeds and making it more beautiful really helped. A little white butterfly came along as I was trimming. Very nice! Tonight we will have dinner and a special butterfly-shaped cake. I'll post some pictures later.

Blueberry Time!

With the warm spring, rain in May, and sun in June, it's a bumper crop of blueberries this year - and they're ready weeks earlier than normal. We have gone picking twice already: last Friday with just me and the kids and Sunday with Chris, too. What a joy to see Gabriel gorging himself on these delicious, healthy little gems, which of course, were Natalie's favorite! We stuffed ourselves the first day at Gianetti's in Franklin, MA and only brought home 3 1/2 lbs. We went to Harmony Farms on Sunday, where we picked nearly 16 lbs to build up our winter supply. The berries were sweet and enormous (as Chris said, they were BOUS's "Berries of Unusual Size" in homage to one of our favorite movies, The Princess Bride - which gave me a good chuckle.) At times, I picked as fast as I could, emptying clusters of berries into my bucket. Other times, I carefully selected the berries I wanted to eat with loving thoughts of Natalie, my blueberry girl. "This one's for you, sweet girl," I'd think to myself as I popped it into my mouth.

I took a bowl of blueberries to The Compassionate Friends meeting on Monday night and was greeted so warmly with several people coming up to me saying, "I knew you were here before I even saw you because Natalie's blueberries are here!" Everyone referred to them as "Natalie's blueberries," which made me feel really good. I told the story of how she would eat them, one by one and hum with joy after each one. I think of her humming and it makes me happy and sad both at the same time. I've already started looking for a blueberry recipe to make on her birthday this year. Maybe I won't be so paralyzed as last year. It will be what it will be.

March

Since March 18, 2007, I have dreaded and loathed this month. Each year as it rolls around, I get a tightening in my throat and an overall sense of gloom descends upon the world. This year, March 1 was frought with nasty, slushy miserable weather. It had snowed a day or two before and it was rainy and slushy, just like the last day of Natalie's life. As I lay nursing Gabriel before he went to sleep, I suddenly started crying, I mean uncontrollably crying. I missed Natalie. The depth of the missing and the longing and the yearning cannot be conveyed in words. It is something I feel deep in every cell of my body and soul. Since Gabriel's birth, nursing has been a big grief trigger for me. I started thinking about why I was crying like this, when I hadn't done so in quite awhile. I literally couldn't stop and I tried to keep it hushed so I didn't disturb my little boy who was contentedly nursing away, getting sleepy and ready to go night-night. Then I realized: It's March. The weather sucked today. It sucked just like it did on March 17, 2007, the last day of Natalie's life. I had taken the girls outside briefly so I could clear the slushy mess off the front steps for the mailman. Natalie didn't want to put on her snowsuit, so I let her go out in her boots, coat, and hat. She didn't like it and kept fussing for me to pick her up. It's hard to shovel snow while holding a 24-lb toddler, so I made Natalie wait until I could pick her up. Then I did and all was better again for her. Roslyn wanted to play, but Natalie just stood in the snow, looking forlorn. She didn't like it. We stayed out for a bit longer and then I convinced Roslyn to go back inside and Natalie was happy about that.

And so, today is March 7 - 11 more days to go until the 18th, which will mark the 5th anniversary of my beautiful baby's passing. This year it falls on a Sunday, just like in 2007. It has been a rough week so far, but Chris and I are both doing the best we can to be kind to ourselves and each other. There's nothing we can do about it, except hang in there and keep on living. It's just a rough one this year. Five years seems like such a long, long time and I miss her more and more.

February 7th

February 7th is one of the most special days of my life. It's the day I gave birth to my first baby, Roslyn Grace. She arrived on a blizzardy Friday morning that I'll never forget. We've had the pleasure of celebrating nine more birthdays with her since that day in 2003: some years with small gatherings of friends and some with big parties.

In 2007, Roslyn's birthday was different. We celebrated it on the 6th because Chris had to work late on the 7th. We went out to dinner to Bugaboo Creek (Roslyn's then favorite birthday place because they would sing to you and let you "kiss the moose," a big hand puppet, pictured here). Natalie had come down with a mild fever and we gave her some ibuprophen and she felt better and we had a fun family outing. (We did also have a party the following weekend.)

The next day, on Roslyn's actual birthday, I was home with the girls. We had just finished lunch. Natalie was still feverish. I was holding her in one arm while reaching to fill up a cup of water for her. She reached for the water and as I put the cup to her lips, she suddenly started convulsing. Her head arched back as her little body jerked uncontrollably. I was terrified and quickly called her pediatrician. They told me to call 911, which I did immediately. The paramedics arrived a few minutes later and by this time, Natalie's seizure had ended and she was sobbing in my arms, utterly exhausted. They checked her over and recommended we take her to the ER. I didn't have our car that day, so Roslyn, Natalie, and I all piled into the ambulance (I think they were both still in their pjs!). The doctors at the hospital told me that she'd had a febrile seizure. I had never heard of such a thing. They said it was quite common, that about 1 in 5 children have one before the age of 5. (I just read an article in Parents magazine yesterday that says now it's 1 in 4 kids.) Natalie's episode lasted for about 2-3 minutes, which they said was common. They assured me she did not suffer any brain damage and that there would be no long-term effects from the experience. They said that if she were to get another fever, to keep it under control with tylenol or ibuprophen.

It was a terrifying experience. I held Natalie for hours and hours. She sobbed and nursed and sobbed and nursed, and then finally passed out. Roslyn (then 4) was a trooper, too, and made the best of it watching TV in the ER examination room.

A little over five weeks later, Natalie died.

The doctors have all assured me that there is no connection between Natalie's febrile seizure and her death. This includes pediatricians, the Medical Examiner, and Dr. Krous from the SUDC program. I'm sure they are all right about that. Still, I can't escape the feeling that this was the beginning of the end for my precious girl. In my heart and soul, these two events are linked, and I don't think that will ever change.

I feel like the Universe keeps testing me
This year, Gabriel came down with a fever. When? On Roslyn's birthday, of course! It was 104 at one point, which caused me to: a) freak out, and b) question the accuracy of the thermometer because he didn't feel that hot or act that sick. (I still don't know if it was accurate because I couldn't find our other thermometer to compare it to. However, I took my own temperature with it and it registered 97.7 - normal.)

I couldn't help but feel that the universe keeps testing me. Why did he have to get sick with a fever on that day? Why? I know there's no answer and it's just a random coincidence. (Random, random, random - just like Natalie dieing.) Really, I do know that. But, it didn't prevent me from reliving that day in 2007 over and over again - and feel an uncomfortable sense of dread for my son. I have resigned to the fact that I will always worry for my children and I suspect that will be the case for the rest of my life.

Thankfully, Gabriel is fine. I gave him a dose of ibuprophen at bedtime. He had the fever for three days and then it went away, to be replaced by a cough and a nose that won't stop running. Bless his little heart, he comes up to me and says "nose" when he wants me to wipe it. Such a sweetiepie.

19 months, 18 days

19 months, 18 days. That's how old Natalie was when she died. And, that's how old Gabriel will be tomorrow. The months and weeks leading up to this milestone have been wracked with worry for me and Chris. It's not rational, of course. I mean, what is the likelihood that anything would happen to Gabriel at the exact same age as Natalie? Not likely, I know. But this is still a big deal. It's a major marker of time. As Gabriel has approached this age, his behavior has triggered loving memories of sweet Natalie. He is like her in so many ways, especially as he learns more and more words (yes, he says "Dora" and "Boots" like Natalie did). But, he is very much his own person, too. It's such a joy to watch him interact with big sister Roslyn, while the longing for Natalie and imagining how she would fit into their dynamic is always there.

Tomorrow when Gabriel wakes up in his cheerful way (he always greets me with a big "HIIII!" when I go into his room each morning), I will breathe a huge sigh of relief. Can't wait to get past this milestone. Only a few more hours...

We will always remember our precious Natalie. We are forever grateful to Roslyn and Gabriel for keeping part of her alive and for being the spectacular individuals they are. We are blessed.

Let Go

Last Tuesday, I lost my job at Blue Cross. It didn't come as a surprise knowing that the company is going through a major restructuring and given my part-time status, I had a feeling that my job might be vulnerable. Given that, it was still a shock that it actually happened. Sometimes you think you're prepared for something, but when it actually happens, you find you're not as prepared as you thought. I felt like that last year when my Mom died of cancer. Though I knew she was terminally ill, I still can't believe she's really gone.

Losing a job, of course, is nothing compared to losing a loved one. Jobs are commodities that can be replaced, people are not. However, losing my job has stirred up a whirlpool of emotions and loss. One of the things that was most difficult about the way they let me go at Blue Cross was not being able to go back to my desk to collect my personal things or say goodbye to anyone. Once they decide they don't want you anymore, they make it very clear you are no longer welcome in the building. My manager had to go back upstairs and bring me my purse and coat. Then, she had to pack up my personal things (which, btw, they don't send to your house; they make you suffer the humiliation of going back to pick them up). She had to take down my arrangement of photos of my three beautiful children -- the pictures that have smiled back at me for nearly 6 years, including, of course, pictures of sweet Natalie. It may sound strange, but knowing that Natalie's picture is no longer up at my desk saddens me a lot. It's like I've lost another piece of her.

I am also very sad that I will no longer see my fellow co-workers who have been my friends, supporting me through everything I've been through these last 4 1/2 years since Natalie died: losing my precious daughter; my miscarriage; riding the roller coaster of infertility that finally culminated in the best thing to happen in a long time, Gabriel; my mother taking ill, moving to Providence, being diagnosed with cancer and dieing. Throughout all this, my marriage has suffered its share of ups and downs. Chris had heart surgery in January. Roslyn had a traumatic bike accident in April. My father-in-law died just three weeks ago and now my job has been "eliminated." It's a lot for anyone to bear, and though they say what doesn't kill you makes you stronger, I am starting to feel weaker, like maybe I can't take much more.

Losing the daily contact with my Blue Cross friends means another piece of Natalie is gone, too. They were there to support me during that terrible time and over the years. They planted a tree in Roger Williams Park in her name. I wrote an award-winning article about grief in Choices magazine with their support. They've been wonderful to me throughout it all and I am ever grateful. Will they forget about her now that I'm gone, too?

Some days when I lie down with Gabriel to nurse him in the morning, I actually cry for joy that he woke up today. I consciously thank the universe and him that he continues to breathe in and out and it makes me want to squeeze him so hard that I never let go. Of course, I do let go so he can go about his day, attending to important matters like climbing onto the desk to dump out the pencil holder for the XXth time, peeling the paper off every crayon in the box (after dumping them all out on the floor, of course), and pointing out the window when he sees a bird ("bir") or a squirrel. He is pure JOY.

And so, no matter how bad things may seem, I always try to enjoy and appreciate the beauty and joy of what I have -- my wonderful family, friends, and a house to call home.

Here's the four of us at the dedication ceremony of the Remembrance Garden of The Compassionate Friends of Greater Providence where Natalie's name is engraved on one of the stones.

A Diagnosis, But Not an Answer

Recently, we received the report from the Sudden Unexplained Death in Childhood (SUDC) Research Program on the cause of Natalie’s death and I wanted to share it with you. As you may recall, the original autopsy from 2007 listed the cause of death as “acute bronchitis and bronchiolitis.” This came after seven months of investigation that involved microscopic analysis of brain tissues, heart, and other vital organs. At the time, the Medical Examiner told us that her diagnosis came because there was nothing else wrong with Natalie. She said “I had to put something.” Needless to say, this hardly gave us much confidence in the diagnosis. When we googled bronchiolitis, we learned that it is an illness with a steady progression over a period of days to weeks before it becomes life threatening. This did not fit Natalie’s symptoms or her sudden death.

Now, after years of going through all of Natalie’s prenatal, pediatric, and post-mortem records, as well as a detailed family history and description of events leading up to her death, Dr. Krous, the head researcher for the SUDC Research Program, has shared his opinion with us. He wrote, “In the final analysis, none of Natalie’s pathologic findings are sufficiently severe, either singly or in combination, to be considered lethal. Therefore, based on the information available at this time, we consider Natalie’s cause of death to be SUDC.”

SUDC is a diagnosis of exclusion. It means they don’t know. There is no reason why Natalie, a happy, healthy little girl just stopped breathing and quietly died in her sleep. No reason. No reason.

On the one hand, it is reaffirming that my instinct at the time was that her illness (which seemed like a cold) was not severe enough to be lethal. Therefore, I didn’t miss something and there was nothing I could have done. It’s a start to putting my mind at ease.

However, it is also infuriating because we are left with nothing, no explanation, no answer for why our precious girl left us.

We are extremely grateful to the SUDC program for the time and effort they put into finding an answer for us. SUDC is rare, but we are not alone. I invite you to watch this video to learn more about it:

Since SIDS research spread the word about putting babies to sleep on their back and other simple safety measures parents can take, the SIDS rate has been cut in half. Perhaps one day, with the important work of Dr. Krous and the SUDC Program, the same will be true of SUDC. It won’t bring Natalie back, but it might help save another child and another family from having to endure the tragedy we have to live with every single day. (I’m never comfortable asking for money, but if you can, please consider sending a donation to the SUDC Research Program in Natalie’s memory. You can donate through their website. There, I did it.)

Christopher and I remain ever grateful for your love and support, especially in those first terrible months after we lost Natalie. It is hard to believe that we are now 4 1/2 years from that time. Much has changed in our lives — we now have sweet, little Gabriel, who is rapidly approaching the age Natalie was (he’ll be that age on December 28 this year), and our beautiful Roslyn is a 3rd grader and a wonderful big sister again. And much has stayed the same — we will never stop missing and longing for our Natalie Joy.