Friday, June 12, 2009
A year ago today... while most of you were sleeping, we were in a parent room at the hospital saying goodbye. Goodbye to our youngest child who was known as "Twin B Manuel", Phoebe, and of course Jessica Elizabeth.
One of the biggest struggles I continue to have with this experience is trying to understand why it was our baby that died. After I delivered the girls, I had so many people trying to reassure me that everything would be OK, and I believed them. Because their friends friends, or nephew, or grandmother were all born at 25 weeks, and barely weighed 2 lbs, and look at them now, healthy active happy kids or adults. And of course I had girls, and girls do so much better then boys do. Do they? I met 3 women at the IWK who all had twin boys, and although some of them may have their struggles...they survived. And look at the 91 year old walking around the hospital...he weighed 1 lb 8oz when he was born... years ago when they didn't have the technology they do today, and he was kept in a shoebox. This is what tears me apart, focusing on what we'll never know and remembering how hard it was to let her go a year ago today. I can normally block this out, but days like today, I can't help but ask myself why? once again. Days like today, makes me think of what should have been but what wasn't. Days like today remind me of how much I really hurt, even when I feel fine. Days like today I stop worrying that Alyssa isn't crawling or pulling herself up, I'm grateful she's alive. Days like today I stare a little bit longer at Alyssa and imagine Jessica. Days like today I hug my girls a little big tighter and a little bit longer. Days like today I want to hide under a rock. And days like today....I remember what it was like to hold my baby as she passed away in my arms.
The beginning of the day is rather blurry to me. But I do remember stuggling to try and get the words out at our family meeting..."we made our decision, we will let her go" But of course they didn't come out as clear as that...My whole body was shaking, I was shivering, and crying and feeling like "No, we want more time, we haven't made our decision, we're only saying what we feel we HAVE to say" But I didn't, deep down, I knew. My head knew, but my heart will never know.
We spent the afternoon in the NICU with the girls, my parents and Tammy and Randy. Keith and I took turns. He would hold Jessica, and then I would hold her. He held both girls together and then I did. Keith and I were the only two family members to hold Jessica, which is also something I struggle with. When they were both so sick in the NICU, kangaroo care was reserved for the parents because there weren't many opportunities in the beginning to hold the girls. At the time, I just wanted her for us, I didn't want to share her with anyone because we had such little time with her. I wasn't thinking about anyone else at the time, I wasn't thinking that maybe Mom or Dad would have liked to hold their granddaughter, or maybe Tammy and Randy would have liked to hold their goddaughter rather then just touching her. Maybe Jessica would have liked this too. But I was too selfish to allow this. Shortly after Alyssa was placed back in her incubator, Jessica was wheeled into our parent room...Seeing her in our room was incredibly sad, because we knew what was to come. Jamie, Danielle and Molly were there to say goodbye to their niece and cousin, and Emily was there to say goodbye to her sister. She wanted to touch her. She kept trying to hug her and kiss her, we taped her interaction with her sister to show her that she met her. We never had the chance to take a family picture, which I regret.
I remember Mom asking me many times if we wanted her to stay with us, to help us go through with everything, but I said no...at the time, I felt it was something that Keith and I needed to do alone. Part of me regrets this, but then the other half of me thinks we made the right decision. After talking with many other babylost mama's, I realize that many of them had the entire room filled with family and friends, each having the chance to hold the baby after they passed away. For us, we didn't want that. It was so hard for us. I didn't want my parents to see our baby dying, and also seeing how much pain we were in. I didn't want anyone else to have the images of Jessica that I have stuck in my head. I wanted my family to remember her alive, and remember her looking like a perfect little baby.
To most of you, the pictures I posted on here or on facebook may be difficult to see because of all the lines and tubes and how sick she looked. But to me, when I look at those pictures, none of that bothers me, I see her tiny little eyes peeking up at me as we do kangaroo care, I see her little toes and fingers wiggling around and grabbing at my finger, I see more then the equipment. It is not these pictures that bother me, it is the images I can't get out of my head from our last day with Jessica.
I remember laying on the bed with Jessica on my chest. I felt so sick and so tired but didn't want to move because I didn't want to lose a second. For once we no longer heard the beeping of the COT study, it was a little too quiet. Her ventilator was still on and she was still receiving Fentanyl for pain, but that was it, nothing for us to see how she was doing. But I guess it didnt' matter any more because soon she would be gone. I tried explaining to her why this was happening, and telling her how much we loved her and how much we were going to miss her, but nothing sounded right to me. What do you tell your child when you know that you will be calling a nurse shortly to come and pull out the tube that is keeping her alive? there is nothing that sounds right. As we layed there, I kept worrying about her pain, was she having any? I couldn't tell, she was so calm laying on top of me, she looked so comfortable and peaceful. So I left her there for a very long time...I purposely waited until past midnight, because I wanted her to have a full month of life, not a month minus a day. Keith and I struggled on when to call the nurse. She came when we asked, and was so gentle removing the tube. I have a lot of respect for the nurse who was working this shift. She was good to us, she came when we needed her, but also gave us privacy when we needed it. She was comforting, and knew what we needed. She was clearly upset and crying with us, which made us feel like she really cared, and she wasn't just doing her job. She became involved and that meant alot to us. As wonderful as she was...I never wanted to see her again, and thankfully it was a long time before we did see her, and it was never looking after Alyssa.
Jessica never appeared to be in any pain. The ventilator noise was off, the room was quiet other then our sobbing. It was the worst experience in my life. And I can still feel the same pain today thinking about it, that I did that day. Her heart was still beating for many hours after the tube was pulled out. When she finally passed away, we could feel the change in temperature, we could see the change in her colour, but she still looked like Jessica. When we decided it was time to give her to the nurse, she asked us if we wanted to help bath her. And I just couldn't. I couldn't help bathe her seeing how lifeless she now was. I didn't want to have this memory of her. So I never bathed her. Once she was bathed, and dressed up, and wrapped in a blanket, we held her for the last time and said our goodbyes. She no longer looked like Jessica to me, and THIS memory is what I can never forget. This is what I didn't want anyone else to see.
Our life has continued to go on. I like my life, I love my husband, I love my girls, I love my family and friends, but YES I am still having a hard time because I also loved my other daughter, Jessica, and I have memories of her that absolutely break my heart. My faith is definetly shaken. This is what I struggle with, this is my mountain to climb...
the climb to inner peace.
Friday, June 5, 2009
This is a really tricky question to answer. Because YES for the most part I want people to feel they can ask me questions. Talking about Jessica helps me. I know there is not as much to tell as you may be able to say about your 3 year old, where she only lived for a month, but talking about her, even if it is the same thing over and over again, helps me. But I have to be in the right mood for this, sometimes I don't want to cry, sometimes I don't want to be weak and uncontrollable. That is when I will answer questions without emotions. For example, I was at a party a couple of weeks ago and some of my girlfriends were drinking and were feeling a little more daring to say something to me. I'm ok with this, and if it wasn't a birthday party I may have gotten into it a little more. They were very sincere and asking very appropriate questions...but for me, it just wasn't the right place, so I answered rather unemotionally and as brief as possible.
Some of the people I really want to talk with are the people who were there...the people who may be able to fill in all the blanks of the stuff I was too frazzled too remember, like the nurse who was with us our last night, and the nurses the day before and the day after, Sharla, Charlotte, Dr. J. They can answer all of the questions that I've already asked a million times.
Do you initiate conversation about him or her?
Maybe too often. I am asked at least once a week by either someone in the grocery store or someone from the running room how many children I have. Although it would be much easier and more comfortable to say "2 girls", I just can't. I can't leave out the fact that I had 3 daughters. So sometimes this conversation ends there, it often does. But then other times, it goes a little further...because they ask their ages, and then they realize "oh you had twins", so they wonder where Alyssa's sister is...and so depending on my mood, I pick which direction in the fork on the road to travel. Sometimes I'm honest, especially if it is someone I am going to see again, and I tell them about losing my child. Soon I am not going to have any more running buddies because every Sunday lately, this seems to be the topic of conversation, a couple people were obvious they regretted bringing it up, and others chatted a long way about it. But then there are other days when I lie through my teeth. Last week I was having some blood work done. Alyssa was with me, and for small talk they asked me how many kids, ages, etc...So I told her. Then she went on about how busy I must be, and asked where Jessica was...I told her it was very busy, but so much fun to see the girls interacting so much, and Emily just loves her twin sisters, and my parents who live in Bedford with us were looking after Jessica, because I am trying to have one on one time with each girl to give them a little independence and to feel special. Oh and you should have seen them at their birthday how sweet they were dressed alike, because I do dress them alike quite often...It sounded so great as I told it. But then it was time to go, I knew I would never see her again.
How do you commemorate your child? Necklace? Ink? Photographs? What objects or images link you to your child?
I thought about getting a tattoo, Keith more then me, but it just hasn't happened yet. I wear a necklace that was given to me by one of my best friends. It is a heart within a heart, I always think of Jessica when I wear it. I also have a family ring that Keith had bought for me for Mother's Day last year. By the time the ring was actually ready, Jessica was gone. I wasn't able to wear my wedding rings or family ring while in the hospital when holding Alyssa and with all the hand washing. I never wore my rings again until early February. When I finally went to wear the family ring...one emerald stone was missing, I haven't put it on since, and plan to get it fixed before I do. I also have the blanket she had with her the last couple days she was alive. I keep it in Alyssa's crib.
There is this place where I hang out once in a while. It's a place where I feel I can be myself, even if I'm just there being quiet and not participating. I sit, and read, and cry and nod my head in complete agreement, and think "how do you know exactly how I am feeling?". Well that's easy, because most of the other "friends" at this place, have been through the horror of losing a child. Where is this place where I can be honest and grieve and not be afraid who is judging me??? It's a website called glowinthewoods.com and it has probably been the best therapy to me all year. The women who started the group are real writers, they are good, amazing writers, and every post is so well written that I leave there amazed at how well they can affect people. Often there is a story behind every post and it all leads up to a question at the end. Questions that always make you think, because it is something I've thought about at one point this year. It may even be something that I already wrote about in the past, and then I see it again. I rarely post my replies on the website, but today I decided to sift through some of the questions that I thought I would like to answer, and post them here for you today and in the next couple of days. So here is my first rather lengthy reply to a question I thought appropriate as we approach the anniversary of Jessica's death.
Did you perform a ceremony to remember and honour your child? What was your favorite part of that terrible day? What prayer or poem or song lyrics did you use in the ceremony? What changed for you before and after that day if anything?
As some of you may remember, we had a memorial service for Jessica at the JA Snow Funeral Home. For me, I needed to have a service. I wanted a church service initially, I wanted an open caskett to show everyone how beautiful she was, I wanted a burial service. I wanted so much to happen for this day, and I wanted everything perfect to honour her completely. We didn't have a church service because we couldn't play the music we wanted or add the special touches that we felt we needed. We wanted to play the song "Precious child" during the ceremony. We wanted pictures at the front of the service and Jessica's clothes and blood pressure cuff, and hair and all the little things showing how tiny she was. We wanted to tape the service...although the lady who was suppose to press play forgot. We wanted a good location for everyone so that our friends from work and the IWK could make it, and we thought Bedford was too much out of the way. We couldn't have an open caskett, because her little body was so tiny that they couldn't put enough make-up on her to really show her true beauty. They told me they couldn't do her justice. I had hoped that I could hold her one last time after the wake. To hold her and tell her how much I loved her, and how sorry I was, sorry for any pain she went through. Sorry that I didn't help bath her, or sorry that I didn't spend more time with her at the hospital. I loved her so much, but honestly it may have been better not having a casket, because I'll tell you, holding a dead baby is extremely painful. You can't hold them and be happy for them that they had a good life, that they experienced so much...because she didn't, she had a month. A month hooked up to wires and machines, and her guts cut open and resting on the outside of her body. She had pain. And she missed out on a great life.
Because there was no wake, no caskett, we had her little body cremated, which helped in our decision about burial. At first the funeral director had told me that because she was so tiny, she would have very few ashes. This really upset me. The thought of her entire life being burned and only having a tsp of ashes to show for it, was actually quite devasting to think about. So I was maybe inapropriately pleased when I realized that her ashes actually filled the entire little urn. This was also a very difficult moment, seeing what was left of Jessica in an urn for the very first time. Last time we saw her, she was in our arms, now she was in a container, much smaller then the incubator she lived most of her life. She still rests on our mantle piece, because we dont' know where we want to bury her, or where to scatter her ashes. I really just can't imagine her being anywhere else right now.
Although everything didn't go exactly the way we wanted this day, we did feel a sense of contentment in that she was truly honoured. My favorite part of the day was seeing our coworkers, friends and family. I had no idea who was going to show up for the service. I hoped many of our friends would come, but it was on a Tuesday so difficult for people who lived away to come. That was another thing that didn't go as planned. We wanted the service on Satuday so friends and family could travel and people wouldn't have to take the time off work, but there wasn't enough time to put the obituary in the paper, have everything organized, and also the funeral home was booked. But it didn't matter. Because the chapel was packed. Everyone came regardless of what day it was. Every single one of Keith's close friends (they call themselves the Eds) showed up, I honestly did not expect it. Friends of mine from Fredericton, Moncton came, my Nanny, my aunts and uncle, Keith's aunts and uncles, friends of our family, two full rows of my coworkers, Keith's coworkers, nurses from the IWK, Dr. J.... families and friends from here and away...Seeing the chapel full, helped us so much. It helped us to remember that Jessica's one month alive WAS important and she was honoured. I may have ranted in the past about everyone saying the wrong things to us at the time...but do you think I remember what anyone said to me at the time anymore? Not really, but I remember who was there for us. We needed everyone one of you, and we continue to need your friendships and support, thank you for being there for us.
It has been over a year since Jessica and Alyssa's birthday, and next weekend will be the anniversary of Jessica's death. What has changed since that day? I still feel empty inside, I still feel the pain, but I dont' think about it daily. I do what I have to do to be "normal". For me, thinking about the girls birthday coming up, was worse then the actual day. I cried thinking about running on Mother's Day...and remembering where I was year ago at that time. The day itself was rainy and cold, but it was nice. I spent it with my Mom, ran a half marathon with my Dad, went out to breakfast, limped along the rest of the day. Keith took Alyssa's actual birthday off, we shopped. ALOT. I cried once. I cried when I sang happy birthday to her, it came out of nowhere, but then I was fine. I cried thinking about her birthday party coming up on the weekend. I cried thinking about singing Happy Birthday and looking around the room and seeing 3 sets of twins, Alyssa's NICU survivor friends. On the actual day, I was a warrior. I didn't look at anyone other then Alyssa and I sang and held back my tears as difficult as it was, and I was SO very happy for Alyssa. She is an incredibly happy baby. It wasn't until Alyssa's follow up appointment the following week where I completely lost it on the way home in the car. It was unexpected. I have been to the IWK since, I've been to the NICU since, but for some reason this day, everything hit home, and all those memories from last summer hit me and reminded me of what I've been trying so hard to forget, or push aside. Together as a family and with our friends support, we made it through most of the "firsts" of our first year missing Jessica...This Friday will be our last day of firsts. I can't really say I will ever be ok, knowing what I know, and remembering our loss, but time has helped, getting through our first year has helped, and knowing all of you has helped.