Life Sentence

The heartbreak of infant loss

By Laura Schubert

Did you know that October is Pregnancy and Infant Loss Awareness Month? I'll bet not. Despite the infant mortality crisis that's been at the forefront of Milwaukee's public health news for months, the only people who have more than a cursory comprehension of what it means to lose a baby are those who've lived it.

Infant loss is nature's cruelest practical joke. It's investing all of the required time and effort into pregnancy, only to be robbed of the result. It's cradling a body that grew within your own and trying to reconcile the cold, lifeless form in your arms with your memory of the baby who turned double flips in your womb.

It's worrying that you'll forget what your child looked like and snapping an album's worth of photos that no one will ever ask to see. It's sobbing so hard you can't breathe and wondering if it's possible to cry yourself to death.

Infant loss is handing off a Moses basket to the nurse who's drawn the unfortunate duty of delivering your pride and joy to the morgue and walking out of a hospital with empty arms.

It's boxing up brand new baby clothes and buying a 24-inch casket. It's sifting through sympathy cards, willing your foolish body to stop lactating, clutching your baby's blanket to your chest in hopes of soothing the piercing ache in your heart.

It's resisting the urge to smack the clueless individuals who compare your situation to the death of their dog or who tell you you'll have another baby, as if children are somehow replaceable.

Infant loss is explaining to your 7-year-old that sometimes babies die and being stumped into silence when she asks you why. It's watching other families live out your happy ending and fighting a fresh round of grief with every milestone you miss.

It's being shut out of play groups for perpetuity. It's skipping social events with expectant and newly minted mothers because, as a walking worst-case scenario, you don't want to put a damper on the party.

It's listening to other women gripe about motherhood and realizing that you no longer relate to their petty parental complaints because, frankly, when you've buried a baby, a sleepless night with a vomiting toddler sounds something like a gift.

Infant loss is pruning from your life the friends and relatives who ignore or minimize your loss. It's recognizing that, while they may not mean to be hurtful, the fact that they don't know any better doesn't make their utter lack of empathy one whit easier to bear.

My baby girl would have been 5 years old this month. I don't know what she'd look like, what her favorite food would be. I've never had the privilege of tucking her into bed, taking her to the zoo or kissing her boo-boos. I will never watch her graduate or walk down the aisle.

Infant loss is more than an empty cradle. It's a life sentence.

Unfortunately, this is all so true. I have explained it as having this nervousness and uneasiness similar to facing an undesirable situation except normally the situation comes and goes and that feeling goes as well. With the loss of a child, it comes, but it never goes. It is there for life.

Poem

Poem, Author Unknown

"Do not judge the bereaved mother. She comes in many forms.

She is breathing, but she is dying.

She may look young, but inside she has become ancient.

She smiles, but her heart sobs.

She walks, she talks, she cooks, she cleans, she works, she IS,but she IS NOT, all at once.

She is here, but part of her is elsewhere for eternity."

I found this quote at Dear Stevie, she is also the founder of

It's sort of a relief to find a quote that speaks so clearly as to what you're experiencing. It's the feeling that someone out there truly understands. I know there are entirely too many people who do understand and each of their words are all too familiar yet comforting at the same time.

National Pregnancy and Infant Loss Remembrance Day

Today, October 15th, is National Pregnancy and Infant Loss Remembrance Day. This loss happens far too often and it is heart wrenching to think of how many women are going through the same horrible experience I am. It is a heartache that never goes away. Never. It is a heavy burden to carry each day.





I think about my babies all the time, but today is a day to raise awareness for all of the babies who lost their lives entirely too early and the parents who mourn the loss of their baby at any age. So people know this loss is mourned with heavy hearts and broken dreams, forever. It is a sadness that never completely goes away. I know how important the support that I have received over the last year has been for my healing. This day is to let people know that even though it is sad and sometimes uncomfortable to talk about, these babies need to be remembered because their lives are just as important as our children here on earth. And for the parents who love them more than anything and walk in the shoes of extreme emptiness and heartache for the rest of their lives.




I miss these beautiful girls more than words can ever express. ♥Reese and Scotlyn♥

Support

I have been feeling like now more than ever that I need to go to an infant loss support group. I am even questioning why now, after a year, but I have learned that time does not necessarily "heal all wounds". There is one available at the hospital I delivered at, but I have never been able to bring myself to go back there. I have a hard enough time with things that enter my daily life out of my control, much less deliberately going to a place where I know will trigger a lot of emotion and anxiety. I did meet a sweet loss mother in the blog world who delivered the same place I did and attends those meetings and she is making me rethink my decision. It would be hard to go there, but maybe if I get the support I need now, it would be worth it. Plus, I would love to meet her:) I really haven't talked a lot with people who truly understand what I'm going through because they have been there. I have made some attempts online, but never really got what I needed so I relied on friends and family who have been extremely helpful, but there is a part of me who knows (and I know they would understand) that I need that connection with someone on the same level as me.

I have a feeling fall is having a little play in my emotions, too. I would have thought summer would have been harder, since their birthday is in July. It definitely brought its own emotions, but fall of last year was so incredibly hard for me. Those were the first weeks and months I lived without Reese and Scotlyn and I think about Christmas. I think every day how I don't want to live this life anymore, I just want them to be here. It's hard to think about living the rest of my life without them, it's painful and discouraging. I think about how not normal this is and it shouldn't be this way. But I keep putting one foot in front of the other because I have to.

Moving.Forward.

I have been having a rough time lately. It's not one thing, it's just living every day without my babies. It's still so hard. I hold back a lot on here (and in my every day life) so I don't post much about how I feel on a daily basis and there are some things that I can't talk about right now. Part of me wouldn't mind blogging more of my feelings and I had planned to, for myself and for others who stumbled across my blog in the same situation. I just don't want it to seem like a pity party, although I do think its important for people who want to be supportive, not just to me but anyone in my situation, to understand the best they can what it's like to live a life with a loss like this. Thankfully, I have wonderful, suppotive friends and family who are there for me at the drop of a hat when I need them.

Lately, Brennan has been craving a play mate. And for the past year I have been so thankful that he has been content by himself. I was always so worried about him not having a sibling and he talked about Reese and Scotlyn, but never seemed lonely until recently. He still plays well on his own (and with us, of course), but he has been asking to go play with friends or if friends can come over constantly. We do the best we can to keep him involved with other kids-school, soccer, play dates, other various activities, but I think he is craving that constant companion and play mate in a sibling. He told me at breakfast one morning that he wishes Reese and Scotlyn wouldn't have died so they were here for him to play with:( I don't mean to sound like I dwell on things or that I am not thankful for Brennan because I absolutely am, but if you think about how important your family is and how often you think about them, that is how often I think about Reese and Scotlyn and since I am forced into a future without them-that's how often I think about having another child. Every moment of my life revolves around my family and everything we have gone through and everything we have to go through to have another baby. It may be easy for someone to think that I have one child and can't I just be happy with that. I am as happy as I can be in the situation I am in and I think it's easy for the people who have planned their family and are content with what their family has become. I just feel a lingering emptiness in my life from losing Reese and Scotlyn and my family feels incomplete without them and then being forced to move forward into a life where I can't plan to extend my family the way I want to. When your whole life revolves around your family and you can't plan for what you want, especially when it comes so easily to others and you know the situation you are in should not be the way it is, it is very difficult.

I know I have posted on here before that I watch my friends' baby, Wes. Well, today I told Brennan that Wes wouldn't be coming over anymore on Thursdays. Brennan loves Wes so much, he cries when he has to take a nap and he asks for him on the days he is not here. They are buddies!

I was afraid he would be upset so I immediately assured him that we would go play with him often or have him at our house again sometime. He first verified that we would indeed be able to play with him at his house sometime and then said "I wish we could have a new baby that we could keep, but Reese and Scotlyn died." I love more than anything that he remembers his sisters, but it crushes my heart at the same time.

A lot of my difficulties come with every day conversations. Things that should be okay for people to talk about are bothersome to me. I could never name every situation because there are literally too many in one day much less the last months since I've posted, but I guess looking back through the year, I've definitely made progress, but every day is still a challenge. I'm thinking it is going to be this way for a long time.

Saying Goodbye

One year ago today I came home without my daughters and my heart in a million pieces. I can't believe a year has passed. Sometimes I don't know how I made it here. There were times that I felt like I could crumble into the earth, literally fall to pieces. I feel like for the first part of the year I wasn't really there. I felt like someone else living in my body. I have never felt that low before. Ever. I'm still learning to live a new life. You can't relearn to live a lifetime of hopes and dreams of a future with two daughters in one year. All of those emotions are still so easily triggered. I still think about Reese and Scotlyn every moment of every day. Literally, everything I do reminds me of them and how they should be here with me. Some days are easier than others and I have made great strides in healing, but every day is still a challenge and it is still so painful.

Over the last year I have had flashbacks to when I was pregnant, being in the hospital, after they were born. I do feel like I've suffered some kind of post traumatic stress disorder. This was by far one of the most traumatic things that could ever happen to me. All of those strong emotions and anxiety surface when I am taken back to that time. I can't help, but to obsess over how much I wish things would have turned out differently. How much my life has changed from all of this, how much I have changed as a person. After I came home, I talked to my OB on the phone and he encouraged me to ask my therapist about this technique called EMDR to relive an experience in hopes that you don't have flashbacks anymore, like for PTSD patients who have come back from war. I did mention it, but I guess it wasn't something I was a candidate for.

Recently I decided to read back through my caringbridge site where I posted updates on my pregnancy after I was admitted to have Reese and Scotlyn and then their progress after as well as a few posts through my grieving before I started posting on here. I started at the beginning and I went back to that time when I was in the hospital waiting for the day to come that I had to deliver. I spent my days thinking and trying to prepare myself for what was to come, reveling in the sound of my baby girls' hearts on the monitor. I was content, I never wanted those days to end. No amount of time preparing myself could have ever fully prepared me for what lie ahead. Even knowing each day could be the day my babies would be born entirely too early, I was still not ready. I was hysterical the day my doctor told me it was time to deliver. I've never been so hysterical in my life, uncontrollable sobbing. They were not ready, I was not ready. I was worried my doctor wasn't making the right decision. Even though the outcome is what it is, I do believe Reese and Scotlyn needed to be delivered that day. Over the last year I have taken time to sort through my emotions and feelings and guilt and have spent many many hours trying to reason through why everything happened. There is no reason and there never will be. There will never be a reason for losing my daughters, ever. No matter what our family becomes those little girls will still always be a special part of our lives and never will there be a time that I could think of a reason that they are not here with us today. I have thought through a lot of my guilty feelings and I have rationalized them not to be my fault, which has been very helpful in my healing. Sometimes I think back to how irrational my thoughts were after Reese and Scotlyn died and how hard I was on myself. I still think about if anything could have been changed or done differently. I've come to realize that there wasn't much more that I could have done. That realization doesn't make it any easier for them not to be here, but I am a little easier on myself in that aspect.

I decided to post a journal entry from my caringbridge site on this day, one year ago. I added a few details that I left out in my original post. I also posted pictures from that day.

As you all know Reese was touch and go through the weekend and especially yesterday. She had become somewhat stable last night before bed so Casey and I got to sleep about midnight. I called to check on her about 2:30am and she was still the same. The neonatologist called at 5:30am suggesting that we come right away because they were unable to keep her heart rate or her oxygen saturation up and there was nothing else they could do for her. They also weren't able to get a blood pressure reading. We immediately went down stairs. As soon as we walked up it was a flash back to Scotlyn. They have these portable walls they put up for privacy for the last few moments you have to spend with your baby, as soon as I saw those I knew what the ending was going to be. We just couldn't believe we were being faced with this all over again. Reese looked miserable. She was so puffy, including her belly. She was just not herself. I was beside myself thinking of going through again what we had just gone through with Scotlyn. I didn't know what to do or what to think-I didn't get to hold Scotlyn before she passed so I knew that was something I wanted with Reese since she was still holding strong enough for me to do it. They bundled her up and disconnected her from the ventilator quickly for the transfer. Babies that small cannot keep their temperature up so they have a warming unit for the isolette so I immediately asked for a warming lamp to keep her warm. It was devastating to think that I was holding my baby girl for the first time and the last time. Instantly, after taking her into my arms, her heart rate and oxygen saturation began to climb. She just kept getting better and better. They were also able to get a blood pressure. As soon as her numbers improved I was comforted. She calmed me-we calmed each other. It was the most amazing feeling I could have felt at that moment. I couldn't cry anymore, she was so peaceful. We were both at peace. We sat together like that for 6 hours-I talked to her and I know she was listening. She was raising her eyebrows and trying to open her eyes again-I couldn't have asked for anything more at that time. Casey was with me the whole time. I felt like maybe it was the miracle we needed and that maybe, just maybe she was going to pull through. It was really hard to put her back to bed, but I felt like we needed to take the next step in doing something to treat her since we didn't know why she was so sick. The doctor wanted to try to drain some of the fluid from her belly since she was the most stable she had been in days. He wanted to make sure she didn't have a ruptured bowel like Scotlyn. We had been grasping at anything to get answers for why she had been deteriorating. She tolerated the transfer back to bed and the procedure well. Once she seemed stable we went up to my room to get some lunch. They called within an hour stating she was not doing well again. It was time to say goodbye. Even though I lost my baby girl today I still believe a true miracle happened to me and I could not be more thankful for the sweetest 6 hours I got to spend with my daughter in my arms.

Happy First Birthday In Heaven

Today is Reese and Scotlyn's First Birthday in Heaven. I really can't believe it's been a year, but I also feel like I've lived a lifetime without them. I have never felt as much pain from losing them in the last year than my whole life combined. It's excruciating and I wish that no one ever ever had to feel that pain. Unfortunately, I've learned a lot about life and death and I now realize how very real they are. I have done a lot of thinking about this world and life and I still just don't know what to make of it at times. The reality of today is that my two beautiful daughters were born on this day one year ago. I was terrified for them to be born on this day one year ago, but it was out of my control. I never imagined what would follow and how hard my next days, weeks and months would be, but I was forced to continue. This morning I wished I was preparing my two 1 year olds for their first birthday party with cupcakes they would eat instead of in their memory, but today I celebrated and remembered them with very close, special members of my friends and family. It was as perfect as could be without them here with me. I have had the most amazing support over the last year, it's really overwhelming to think about.

My very best friends ordered the most special balloons to release for Reese and Scotlyn's special day!

I had this little flower cupcake made for them, I am just in love with it. I also made mini cupcakes with their initials on them.

Renee made the sweetest little bears out of the leftover material from making their quilt. The one with small polka dots is made from their crib sheets and the bigger polka dots is from a blanket my best friend, Kate, gave us as a gift. The rest of the material is from the blanket as well:)

She also made this quilt out of Reese and Scotlyn's clothes, my maternity shirts, Brennan's big brother shirts, blankets, their crib sheet, and the shirt I wore at their funeral. It turned out more amazing than I ever could have imagined! She did an excellent job, and it was her first one-you would never know!

We also released a few more balloons at their grave site this evening.

Mother's Day

After school on Friday, Brennan came running to me with these flowers in his hands saying "Happy Mother's Day Mommy!" I wish I had would have had it video taped because it was the sweetest thing! He got to pick out whatever flowers he wanted-I'd say he has good taste:)

They made the flower pots at school and the bees body is Brennan's thumb print:)

This is my card from Brennan:)

My step mom, Renee, had this picture drawn for me. It is brilliant. beautiful. the perfect treasure. Brennan is looking up at his sisters and they are looking down on him.

Mother's Day was one of the hardest days I've had in a long time. I imagined all along that it would be, but it hit me like a ton of bricks.

I took these two little butterflies out to Reese and Scotlyn's grave. I hope they know how much I love them and miss them.

Reese

Scotlyn

I came home this morning to find some buds on another one of Reese and Scotlyns' trees:) I guess it's that time of year, you know spring, but it sure puts a smile on my face.

I have to be completely honest, I was kind of mad when I got these trees in their memory. It wasn't toward the people who thought of us in such a generous way, it was more at life and the world. I thought, "I'm getting a tree instead of my babies? What kind of world is this?"

I would still of course rather have Reese and Scotlyn here with me, but I'm a little more rational about it. I now (and knew I would eventually) appreciate the beauty I have here with me to remind me of them and I am so thankful for the special people in our lives who have brought us these everlasting memories!

More from the Magnolia:)

Full Bloom

Reese and Scotlyns blooms are getting more full by the day. The tree is not in full bloom yet, but I am so in love with the blooms that are on there.

They really opened up this weekend and since I was at work Casey sent me some pictures, it made my heart melt:)

I had to take my own pictures too of course;)

We are getting two more trees, gifted from family and a friend, and I'm really looking forward to more representation of two beautiful lives that were way too short.

treasures

We have received a lot of gifts that will be treasured forever in memory of Reese and Scotlyn.

These are two angel sun catchers that a friend at work gave me when I came back. They are so pretty and they represent my two angels.

This is an angel pin that I received after Scotlyn passed away from my friends Amanda and Alicia that I used to work with at Children's.

I wear this necklace almost every day. My friend Kate's mom, Ruth, got this for me. On the other side it has a set of footprints. It's one of my favorites.

This is my favorite bracelet. My mom gave this to me after I came home from the hospital. I cried and cried when I got this. The charm in the middle says "mom" and there are pink footprints on either side of the "Baby Girl" charms.

For Christmas my mom got me the letters "r" and "s" and the pink heart charms.

This necklace is a locket with a heart shaped piece with Reese and Scotlyns' names on it. The piece goes inside the locket. I received this from the nurse at St John's that took care of Reese on her last day. I was so overwhelmed that she was so thoughtful and had this made for me.

This is my "two peas in a pod" necklace that my friend Kate got for me after I found out I was having twins. I can only count on one hand the amount of times I did not wear this necklace while I was pregnant and in the hospital. I still wear it too:)

This is the sweetest noted that came with my necklace:)

I received these ornaments from my mother-in-law for my birthday.

These are wooden blocks from my friend Kate. They have their initial on one side, their stats, our names and Kate and her families names. They are sitting on our mantle above our fireplace.

This is a Willow Tree statue my mom's best friend, Donna, gave us the day of Reese and Scotlyns' service. It also sits on our mantle.

My dad and Renee got us this plaque with a beautiful saying on it. It is also on our mantle.

"Even The Smallest Of Feet Have The Power to Leave Everlasting Footprints Upon The World."

Scotlyn & Reese

Forever in Our Hearts

July 24, 2010

This baby in angel wings brings me a lot of peace now when I look at it. We received this from my friends Hope and Sherry. They actually both cared for Brennan when he was in the NICU and became good friends of mine. It sits on our hearth.

This is a stone garden piece that we received from the wonderful and thoughtful ladies I work with. We are planning to do some landscaping in front in the spring and this will be the perfect addition.

We received two of these angel ornaments before Christmas from St John's Mercy Heart Prints. They are so dainty and it was so heartwarming that thought of us through the holidays. Their program at the hospital is amazing and they offered us a lot of support at the hospital and even after we came home. It was an honor to make Reese and Scotlyn's Memorials to their program to help others during a difficult time like ours.

I had these ornaments made. I was so glad to have their pictures on our tree for Christmas this year.

This is the plaque that lies beneath the Magnolia Tree that was planted in memory of Reese and Scotlyn. My friends from our playgroup, Circle of Friends, graciously gifted this to us. I will post pictures of the tree in bloom in the spring:)

This is the Red Bud tree my very best girl friends had planted for us.

They also had this plaque made that we placed in front of the tree.

They chose this tree because it has heart shaped leaves:) This picture is from the day the plaque was set. We are missing my friend Jessica in this picture. I cannot believe how lucky I am to have such a wonderful group of friends. I can never overlook how amazing the sky looks in this picture. Every time I look at it I think of my girls looking down on us through the clouds:) I miss them so very much.

This a treasure to me. I took this picture on October 1st and it is two simple blooms from my Hibiscus. Immediately when I saw these two single blooms I thought of my girls.

We have a lot of items that don't have a place, including some things from the hospital and I think I'm going to make a shadow box to put those items in. I want to make a scrapbook too. I have so much "stuff" and I really just want my babies here with me more than anything. Sigh. I also think I may have a quilt made with some special blankets, outfits that I bought for them, and my favorite maternity tops that I wore with them. I thought one big quilt with everything so sentimental would be something nice to have. Although sometimes I'm afraid to do anything to them as one piece. Then I think what am I really doing with them separated-hopefully I find the right thing to do.

These are the items we have to treasure, but we also have the memories and so many feelings of support through everything. Also, the many generous donations to March of Dimes in memory of Scotlyn and donations to Mercy Heart Prints in memory of Reese and Scotlyn. We are so fortunate to have so many supportive people in our lives.