Rollercoaster week

This has been one extremely long and trying week. Freja's birthday was this past Monday. The kids and I submersed ourselves in planning and preparing a special day for her. We decided to have a Princess tea party with all the fixings. We pulled out the heirloom china, lace tablecloths, made fancy snacks and brewed several different types of tea to try. The kids dressed up in their favorite princess gowns and refusing to be excluded, my silly two-year-old son even donned Cinderella's 'glass' slippers at the table. It was a nice day spent with the kids. I put the finishing touches on Freja's cake as well, the kids were super excited about it! The cake I made this year was a two tier butterfly themed one. It was covered in pink fondant and I cut out little butterflies and placed them on the cake so they looked like they were 'flying' up one side all together. I chose the butterfly cake this year to honour and remember Freja as well as all her Angel friends, since there is a strong connection and representation between butterflies and children who have left this world too soon. There is still a record amount of snow in the cemetery this year. The first three years for Freja's birthday, the snow was almost completely gone. There were patches, and lots of water, but this year it was hard to even get in there. For some reason this year, the town has not been very vigilant about plowing the driveway into the cemetery so there were many occasions I wanted to stop in but couldn't. I just couldn't handle the thought of not being able to get to her grave for her birthday though, so I called the town office and asked if they could plow the snow. I was very happy to see the next day that the snow was cleared out of the driveway, but then to walk to her spot I had to wade through snow that was almost up to my knees at some points! So then the middle to end part of my week was filled with sickness in our house. The stomach flu hit hard and took both me and my five-year-old down. I just kind of feel now like I'm coming out of the fog of sickness. I've been having bad stomach problems since I threw up on the first day of being sick. It was so bad last night that I couldn't lay down, I finally had to get up and sit sleeping up on the couch. I'm sure it didn't help that I was really upset and sad and trying to hide it for most of the evening, and when the pain in my stomach got really intense every time I tried to lay down I started wondering if maybe I was getting an ulcer or something. Wouldn't surprise me, with the way I try to just cram everything down and pretend that I'm just fine for the sake of everybody else. I can feel it eating away at my insides, the stress. Good Friday is a very raw day for me. Although the date changes every year, it is a day I will always associate with Freja dying. We lost her on Good Friday in 2009, and I just don't see that it will ever be a day I will ever feel at all happy. And now, the weekend. It's already off to a sucky start. I finally went out and bought the kids some Easter things for tomorrow. I still find it so hard going into stores and seeing all the Easter stuff there. I'm so torn - I want to be excited for my living kids, but this time of year takes me right back to the devastation, four years ago. I try to balance it out... But once again I have always been a bit clumsy, and this is one of those very wobbly balancing acts. I needed to have a good cry last night but it's at the point where I just don't feel at all comfortable to do it in front of DP. I feel that we are on two very separate pages with this all now, and I think that my sadness makes him very uncomfortable. I've gotten very good at crying silent tears at night. They just pour down my cheeks but there are no sobs. I'm almost embarassed to show my sadness around him now. I guess to him four years is plenty long enough time to not feel devastated and have an extremely heavy heart anymore. And it's not like I'm constantly debilitated by the grief anymore. For the most part I think it's woven so deeply through every aspect of my life that it has just become a part of me. But I do still think it's normal for a mother to have those tidal waves of mass destruction, especially during certain triggering times of the year. I just want to say I am extremely thankful for my children, who laugh with me and cry with me. Who remember each and every day, and with pure innocence share their hearts with me. It's good to have an open line of communication and understanding somewhere.

This is Home...

I have been feeling really homesick for my blog these days. I love all my groups I am involved with regarding infant loss and Trisomy, but there is something sacred about this place.... This place where I first reached out to the world with my story and made many (what I imagine will be) lifelong friends who's stories touched me deeply and who's babies memories will forever live in my heart. The grief is running deep again these days. I thought as I approached March that I might feel a bit differently this year than I have the past three. I thought I might be able to see Freja's life (and, well, death-) from a slightly more positive perspective... and to be able to mainly focus on the fact that she DID live, and WAS here, and try to just be thankful for the blessing that she was and will always continue to be in the lives of myself, my family, and my friends who have supported me. But, then, it hit me hard this past weekend. There is a smell in the air... The smell of the earth thawing, the sight of the snow melting, puddles, the warmth of the sun beating down on my face which I remember so clearly feeling when we escaped the hospital for brief moments while Freja was alive in there.... It all takes me back and makes me feel like I am walking through this very time four years ago. It's amazing how each one of your senses can hold on to memories so tightly. This kind of grief is beyond just the thoughts in my mind - It is something that has infiltrated every ounce of my being - My mind, body and spirit. My arms have felt like I've had lead weights attached to each of my hands today. My whole body aches and feels worn from nearly four years of this rollercoaster. I just want to crawl back into bed and stay there until May. I hope I can find the strength I need in these coming days to plan Freja's little birthday celebration for our family.

Missing You

I always feel that gaping hole in everything I do in life. This year, the time leading up to Christmas has been so busy - Which in a way is good, but it also frustrates me that I haven't had the time I need to just "be" with my feelings for a while. The kids and I decorated Freja's little tree just as we do each year, and I took it out to her grave. I will also place her stocking out along with the other kid's stockings on Christmas Eve, and I have a couple little ornaments to put in hers. I have to admit that I am dreading the big family get-togethers of over-the-top happiness and joy. It's so hard for me to see everyone elses' in-tact families. And I know that nobody with their perfect, Merry, in-tact families will even mention Freja's name, or acknowledge that this can be such a difficult time of year for families like ours. I'm trying to find the grace to get through the next few days. It's hard always feeling like the "outsider" when I get together with others. Especially with family, who I feel should acknowledge our daughter and support us a bit more, even just with a few kind words. Well, we will see what the coming days bring...

SGM Christmas Giveaway Extravaganza 2012 Finale!!!!

Kelly over at Sufficient Grace Ministries has been doing a ton of giveaways in anticipation of Christmas, and for today's final giveaway, she has something very special that she if offering. You can also still enter to win the items that she has offered throughout the week as well. Please check it out if you have a moment! Xoxo

Absence

Wow. I think it's been about six months since I last wrote here. Shortly after Freja's third birthday was the last time I remember posting anything here. It's not because everything is "fine now," or that I have "moved on......" I simply felt that I needed to take a step back with my writing. Things were getting ugly. I mean, there is no way to sugar-coat the death of a baby... Nor should there ever be a need to. But I just felt that I was sinking even deeper into that dark, swampy pit with every blog post I was writing. I just needed some time to step back and work through some thoughts without having to express them in words. I have to admit that I felt a huge relief once I passed Freja's birthday and her death day. I had been so worked up for months about just getting through those days in one piece. Every year I think it'll be impossible to survive the crushing guilt that always seems to follow me for the latter half of the year until after her birthday. It's a cycle. At least I'm beginning to understand how to predict it. There is so much to learn about grief and it's hard to believe that at one time it actually felt so foreign. Three-and-a-half years in, it feels like it has always been a part of me. It's hard to remember life before this weight that I carry each day. Much has happened in the last six months, including the birth of our second son. Of all my babies, he resembles Freja the closest. Sometimes I have to catch my breath when I gaze down at him sleeping on my chest, head tilted to one side. I've had moments where I've almost forgotten it is him and not her. They are moments I both love and fear. I love to see a part of her living on in him, but it also takes me back to our time with her, when I felt panicked and lost and very, very fearful of the unknown as I watched her sleep on my chest and I knew that at any moment life could leave her tiny body. So, here's hoping for a more productive six months of writing ahead. I'm sure they will be. September 25th has become a half way mark, a countdown of sorts to her birthday and her other special days that follow. Believe me, I have written a thousand blog posts in my head over these past months, but a break in writing (and an extremely busy Summer) has really been a breath of fresh air.

The day before...

Tomorrow is coming. The one that haunts me every day - The one where we got the phone call - THAT phone call, as we tried to catch a few minutes of sleep in the "emergency" parents room next to the NICU. We rushed into the NICU in a haze of sleep deprivation and watched you quickly decline in my arms. Within an hour or so, I was holding your tiny, lifeless body next to mine and I had never felt so broken and defeated in my entire life.

I don't know what is harder to face right now. Today, which was our last full day with you, or tomorrow, the horrendous day of watching you die, and then having to leave the hospital carrying only your boxes of posessions. I will never forget looking back at your empty bed in the NICU as we stood at the nursing desk to say our farewells. My eyes searched for you and I could never imagine that there could ever be a more primal desperation that what I felt during those very moments (and have continued to feel during those times when the grief is so much more powerful than me.) I will never forget what it felt like to drive back to our town without you, knowing that the only time you would ever be coming "home" would be for your burial. Knowing that you would never get to go for walks in your stroller to the park with your sisters. You would never feel the breeze off the lake. You would never feel the warm Spring sun on your face. I will always feel your absence with everything I do. Even just the simple things that most people take for granted to be able to do with their children.

I know that today will be filled with so many thoughts that will go through my mind... The hardest being that if I could go back, I would do things so differently. I want to yell "STOP! HELP MY BABY!!!!!!" I want to change my mind about Palliative Care. I want her to be cared for just as any other baby with a heart condition would've been. I want to know exactly what was happening with her as we watched her go downhill quickly. Why was her heart rhythm abnormal? Why did she require more pressure and oxygen from the CPAP to maintain her sats? Was her decline a result of the VSD? Pulmonary hypertension? Congestive heart failure? Something else? Did it have something to do with the fact that labs weren't being drawn at this point and monitoring was minimal? I need to know exactly why. Why weren't we given details? Why didn't I demand details? I do have her medical records... Hundreds of pages of medical records. I went through a few pages of them last year, but I want to go through them again with the knowledge I now have. I can't bring myself to do it. I'm not even sure there are answers in there for me. Everything I remember reading seemed to simply blame "trisomy 18" for her decline, and eventual death. How could so many important details be left out? Like the actual, physical REASON for her death. She had a body, with a heart and lungs and brain and every other organ just like everyone else. Why is "trisomy 18" a good enough reason for her death?

I can picture so clearly this last day with her. And in my imagination, I can picture so clearly going back there and changing the outcome of tomorrow. I'm torn between two worlds - Reality, and this other place in my mind where I can somehow miraculously change the outcome and play it all out perfectly in my mind, if I just think about it hard enough. And then it hits me again and again and again. I can't change it regardless of what I think or do. I know this place of "what if's" isn't rational, but I don't know how to stop myself from going there almost daily. I don't know how I will ever be able to reach that place of acceptance when I can think of a million ways that I might've been able to save her from dying. Would life have been better than death? How was I supposed to make decisions of this magnitude? I feel nauseated and my chest feels so heavy it is hard to breathe when I think about the responsibility and decisions that were placed on us.

Hoping/wishing/praying/etc that tomorrow can come and go as peacefully as possible with everything that will be going through my mind.

You would be three...

Dear Freja,

Since the beginning of March, I feel like I've been trying to dig my heels in and stop time from ticking on. I've been dreading having to face the days leading up to your birthday, and then your birthday, then all the days you lived three years ago, followed by the day you died in my arms, and your funeral day, then all the days I've had to live without you throughout the year.... It's all just too much and I go in this circle every year, year after year. Whoever said this gets easier certainly doesn't walk in my shoes. I miss you just as much as I did the day you died, and the weeks, months, and years following. I can't say that the pain has dulled very much, or that the memories have faded. I am thankful that my memories of you and your life are still as clear as they were three years ago, but it also means that the pain I experienced early on still feels so fresh too. I cling so tightly to the memories of you that I can't imagine they will ever fade. I can go back and revisit that precious time with you there in the hospital like it just happened yesterday... I can feel myself there with you rocking in that rocking chair and holding you as you sleep in my arms. I can still remember the smells, the sights, the sounds of all the alarms on the medical equipment.

Today is your birthday. You would be three. I absolutely cannot wrap my mind around the fact that you were born three years ago. Time has never flown so fast as it has in the last three years. I somehow thought just after you died that three years out would feel so much different than this. But I have to admit that I will take this pain for the rest of my life if it means that I can still feel so close to you.

When I woke up this morning, I laid there for a few minutes before opening my eyes. I contemplated just keeping them shut for the day... Possibly even the next three weeks... But I eventually gave in and opened one eye slowly, letting some of the bright sunlight in. It hurt so much to face this morning without you. It hurt so much to even think about having to get out of bed and face this day without you. This is your day, and I just couldn't imagine how I would pass time without you here on your special day.

Your daddy, sisters, little brother and I worked painstakingly on a beautiful birthday cake for you. I couldn't decide how I wanted to decorate it. It just had to be perfect, and I was so scared of making even a tiny little mistake. Your sister wanted to make you a princess cake, so we covered it in pink and purple fondant and placed her princess tiara on top. I know you would love it. I just cry when I look at your sister and think about how close you two would be. You would be three, and she is four. I took her shopping the other day and let her go crazy picking things out to decorate your grave with. I don't think I said no to anything she wanted to get. After supper, we will bring you all your little gifts. I'm sure that I will cry a bucket full of tears on top of your grave. I hope that a few will reach you my sweet baby girl.