Not What I Lost, But What I Have Gained

“I don’t think most people realize just how much is lost when a baby dies. You don’t just lose the baby, you also lose the 1 and 2 and 10 and 16 year old that she was going to become. You lose Christmas mornings and loose teeth and first days of school. You just lose it all.” ~ Stephanie Paige Cole

As I mourn Annika, I grieve what I have lost–what she lost. I’m saddened by the what ifs, the lost tomorrows and the empty dreams. I ache for what could have been and what is longed for.

But today I celebrate what I have gained! I celebrate the offer of hope. I celebrate the offer of peace. And I celebrate the offer of happiness.

I’ve learned so much over the past decade.

When Annika died I thought I would never be happy again. How could I possibly go on without my daughter? How will I ever be able to be happy again without her here. I didn’t think I would ever be able to be genuinely happy because I lost such a significant part of my being.

Annika taught me more in her 48 days than I could have taught her in a life time. Her life has brought meaning to my own and her life made me the person I am.

Her life has given me:

Compassion, Empathy, Understanding, Faith, Hope, Passion, Education, Caleb, Lydia and Leila

Her life has taught me:

That everyone is fighting their own battle. That life is precious, and taken for granted. How to be happy with a piece of me missing. To appreciate moments. To appreciate loved ones. To be giving, to be generous. To find time.

I honestly believe that happiness is a choice, and at times takes effort. But I choose to be happy. For those of you who have lost children, you understand what it feels like to feel guilty when happiness begins returning to your life. After losing a child, you ache. You ache for days…months..and even years. After the child’s death, and you first begin feeling happy again, it makes you sad. How can I be happy? How is it okay to feel life slip into normalcy?

But here I am, and man, life is good! I’m not sure why things happen the way they do, but I’m certain growth is the reimbursement of our pain. I remind myself that this isn’t what my life would look like in Annika were still here.

Cultivating Love

Cultivating Love
Almost eight months ago my husband and I began the process of welcoming a foreign exchange student into our home. For quite some time, I’ve wanted to share with you how and why our family began this process. For those of you who may not know us, we have four living children and a daughter that died as an infant. Evan and I briefly looked into fostering young children prior to deciding to host an exchange student. For various reasons, we decided that fostering isn’t the right fit for our family at this time.
When we told people we were hosting an exchange student, people legit thought we had lost our minds! Some were supportive and encouraging, suggesting we were the perfect family to host a student, but others really questioned if we were making a wise choice.
But the thing is, I couldn’t come up with one reason why we wouldn’t host a complete stranger!
I wanted our family to learn to love someone we’d never met and add to our family in a unique and special way. To open our heart and our home to them. To cultivate a lifelong relationship. To learn about another country and better understand their culture. To become more diverse. To be ambassadors of the United States. To expose our family, friends, and community to another culture and foster a rare relationship for them as well.
As if all of my above motives weren’t enough: I wanted to force Evan and I to set aside the to-do list. As parents, it’s easy to get lost in the day-to-day. “We can do that next weekend.” “We will take that vacation next summer.” “We will do that for your next birthday celebration.”
Life is just really damn busy! By committing to an exchange student, we knew we would need to set the to-do list aside and begin scheduling experiences and making them happen! We understood that this year on exchange is a once in a lifetime opportunity and we needed to make the most of it.
Last, but certainly not least, I understood that cultivating a special relationship with our student, also meant heartache. Eventually we will need to send our new loved one home. I’m no stranger to heartache, but there is one thing I know for certain—with heartache comes expediential personal growth.

Two months ago, Marie joined our family! The love that we have cultivated fills my heart with so much joy. So far this experience is more than I could have ever imagined and I can’t wait to share more with you!

A Bereaved Mother’s View of the Nationwide Commercial

Inevitably, the day after the Super Bowl everyone is talking. People talk about the game, the half-time show, the party, and of course, the commercials! This year people talked about the awful call Pete Carroll made at the end of the game, losing the game for the Seahawks. They talked about whether or not they liked Katy Perry’s half time show. People talked about the Katie Couric and Bryant Gumbel BMW commercial, Budweiser’s lost dog and the Always commercial, #LikeAGirl.

Yesterday my family and I had a lot going on. Sure, I wanted to tune into the big game, but it defiantly wasn’t a priority. I woke with a sadness in my heart. February 1^st, 2015 marked four years since my daughter, Annika, died. She was born with multiple heart defects. She would go on to have multiple surgeries (including an open heart) and become septic.

While I was watching the game last night, a Nationwide commercial about the death of children came on. The commercial had a little boy who wouldn’t go on to fulfill momentous life events or carry out dreams because he died in an accident. Nationwide depicted many accidental deaths that can occur in our own homes and neighborhoods. This commercial left people in an uproar. People flocked to social media, even stating that they would be “changing their insurance”.

Everyone is entitled to an opinion, and I’m here to share with you my own. I was completely surprised to hear the back lash this commercial got, especially by bereaved mothers and bereavement groups. As people sit eagerly watching the Super Bowl, the last thing they want to see is a commercial that reminds them that life is fragile, especially the life of their children! People couldn’t believe that Nationwide would air such a heartbreaking commercial. I mean, “how dare they air such a sad commercial while I’m sitting here trying to have a good time.” Or, “how dare they make me feel like death can be preventable.” These were many of the attitudes and words of people on social media.

I’m sorry that this commercial has offended so many, but death is a part of life. If you want someone’s opinion on the matter, you should talk to a bereaved parent who has lost a child to accidental, preventable death. As a heart Mom I only wish that there was a commercial, aired during TVs biggest night that would bring awareness to congenital heart defects. I don’t want to sit back and pretend that the death of our children doesn’t happen and I’m not going to sit here and not talk about it because it makes people uncomfortable! You know what has me upset? The fact that it’s acceptable for Kim Kardashian to flaunt herself all over television, but it’s not okay to acknowledge the number one killer of children in the United States!

After a little research, I learned that Nationwide has started a movement. They are trying to raise awareness! They are trying to bring light to the fact that many babies and children lose their life to PREVENTABLE accidents. They have created an app that room by room, suggests steps parents can take to make their house a safer place. Nationwide Children’s Hospital is the THIRD largest pediatric hospital in the United States. It houses a research center that is determined to reduce preventable death in our children! Please visit their website makesafehappen.com.

So, while many stand there offended that Nationwide made them sad during the game, remember those that live with the death of their own child. The fact that a large company decided to spend millions to raise awareness, not to make a dollar, truly deserves an applause.

Breaking the Silence

Tomorrow, August 19th, is the International Day of Hope. It’s a day that brings together thousands of people who have lost babies. It’s a day that offers hope for the bereaved. It’s not only for parents, but for grandparents, aunts, uncles, siblings and close friends. People find it very difficult to talk about babies who die during pregnancy, right after birth, death of an infant and death of children. It’s a difficult subject to talk about because people are afraid to hurt the already hurting.

Carly Marie is starting a movement to break the silence. To encourage people to talk about these babies. To bring awareness to infant loss. To bring support to their families. To bring these families and loved ones together and to offer hope to their broken hearts.

I want to invite you to visit CarlyMarie’s blog and FB page. https://www.facebook.com/CarlyMarieProjectHeal

http://theseashoreofremembrance.blogspot.com.au/

http://carlymarieprojectheal.com/international-dates/august-19th-day-of-hope

Carly writes the names of angel babies at sunset in the sand, somewhere on the coast of Australia, in memory of her son Christian. She did Annika’s the summer after she died. 

Tomorrow I ask that you say a prayers for these babies, their parents and their loved ones.

The Loss of A Child

The moment that I knew you died, my heart split in two, one side filled with memories, the other went with you.

I often lay awake at night, when the world is fast asleep, and take a walk down memory lane, with tears running down my cheek.

Remembering you is easy, I do it every day, but missing you is a heartache, that never goes away.

I hold you tightly in my heart, and there you will remain, life has gone on without you, but it will never be the same.

For those that still have their babies, treat them with tender care, and pray you never know the emptiness, of when you turn and they’re not there.

Don’t tell me that you understand, don’t tell me that you know.

Don’t tell me that I will survive, or that I will surely grow.

Don’t tell me that this is a test, or that I am truly blessed-or that I am chosen for the test, apart from all the rest.

Don’t come at me with answers, that can only come from me, don’t tell me that my grief will pass, that I will soon be free.

Don’t stand in pious judgment, of the bonds I must untie, don’t tell me how to grieve don’t tell me when to cry. 

Accept me in my ups and downs, I need someone to share…

Just hold my hand and let me cry, and say to me, “Friend, I care.”

—Unknown Author

When I read this, I had to share it. I found myself with tears running down my cheek. The heartache that parents go through after losing a child is something that just doesn’t heal–or go away. Time passes and we learn to live without them…but every moment of every day, we miss them. We long for them. We learn to live with a void in our lives. People are full of advice, that truly comes from their heart. But what they don’t realize is that it can be very hurtful. When you are the one living without your child, it’s impossible to feel like they are in a better place (than your arms), “growing” as an individual isn’t a justifiable reason for burying your baby, etc. 

I am truly blessed with a handful of people that allow me to open up to them. They ask me questions about how things were then, letting me reminisce about my daughter. They ask me how I am doing now, genuinely caring and eager to hear what I have to say.

When your child dies, there is a swarm of people that want to help you in anyway they can. But when they are all gone, you continue to feel alone, lost and shattered. 

I want to thank my closest friends and family for continually loving and supporting me. For dealing with tears and heartache. For allowing me to talk about her, what we went through, what she went though, what was wrong with her-what happen, how I am doing now and what I want to do in the future. Thank you for helping me to heal. Thank you for loving me. And thank you for being the best friends I could ask for. Getting through hard days would be so much harder with out you.

I love you all. 

 

An emptiness.

Lately I’ve been emotional, I’ve been sad, even bitter. I can’t shake the emotion. Maybe it’s the big life event (my baby sister’s wedding; so happy for her!). Or maybe it’s that she would be 2 1/2, a landmark. Maybe it’s because sometimes “time” makes it harder. Maybe it’s because I want another baby (and it won’t happen anytime too soon)–and I fear I will never get another daughter. Or maybe it’s because I will always deal with times of struggle.

I’m not the only one feeling it, my husband is feeling it too.

At my sister’s wedding I had a moment on the dance floor. I tried dancing with the handsome ring bearer (my 5 year old), but he was playing bashful. When the sweet (almost) three year old tugged at my hand, I swept her off her feet, held her tight and danced…as I was cuddling her something happened. A pain I hadn’t felt. The little bit of booze made it difficult to hide what I normally am able to cover up. Tears began pouring down my face uncontrollably. I quickly sat her down and cried the tears that I couldn’t control in the not-so-private bathroom. Not only was I sad, I was embarrassed.

In that moment, I think my semi-intoxicated mind began daydreaming of Annika. What she would have looked like in a beautiful little dress at my baby sister’s wedding. Her bright-tired blue eyes and long lashed. Her curly hair turning blonde from the summer sun. Her letting me sway her back and forth on the dance floor, playing with my ears like Grant used to. Her scar that was hidden beneath her dress and sweet grin allowing everyone to think she wasn’t fighting the battle that she truly was. Her dirty little pigs from running around barefoot.

It makes me feel crazy because I feel as if people look at me and think, come on, it’s been 2 1/2  years. But for me, it’s only been 2 1/2 years. I’d have a 2 1/2 year old, I’d have a daughter, I’d have my heart baby. I wonder how long it will feel like “it’s only been….”

Sometimes as time passes it’s harder because of the change. A month after her death, she wouldn’t have changed much…two years later, she would have. Time makes it harder because her name is spoken less. Time makes it harder because I have to talk about her less. Time can make it harder because there’s more time to think, more events missed, and the continued emptiness that you and everyone around you thought would dissipate.

As my youngest becomes a toddler…I’ve began having baby fever. Although there are no plans to get pregnant anytime soon, I can’t help but wonder if God will ever give me another baby girl. She will in no way replace Annika…but maybe she will offer me hope (in a similar way that Caleb did). I want a little girl so badly. A little lady to take shopping, play dress up with, get manicures with, share girly stories with, teach how to be a lady, watch be a Daddy’s girl, spoil her, watch grow, and have a relationship with (the way I do my Mom).

I long for that.

I have this place inside my heart that feels empty and alone. Time makes the days better, but the moments harder.

 

 

 

 

As I cry through this, I feel a little less hurt. Thank you for letting me share our story with you.

My Heart Baby. CHD Awareness Week Feb. 7th-14th

We woke early the next morning to see Annika to the cardiac catheterization lab. The labs would tell the doctors exactly what Annika’s heart disorders were. We waited patiently for hours. Annika had more heart defects than we were prepared for. We were not prepared for the TAPVR, total anomalous pulmonary venous return, the biggest cause for concern. The vein that returns blood to the heart from the lungs was not there. Annika’s other heart defects included: unbalanced AV canal defect, hypoplastic right heart syndrome (HRHS), transposed great arteries (TGA), pulmonary atresia and dextrocarida with situs inversous. Pulmonary atresia is when the valve orifice fails to develop, and then obstructs the outflow of blood to the lungs. Dextrocardia is when the heart forms on the right side of the chest and situs inversous is when many organs are “mirror” image. Her liver, stomach and intestines were all on the opposite side from what they are in typical human anatomy. Due to the congenital situs inversous, she lacked a spleen. Having the flipped organs isn’t a big cause for concern, and patients that don’t have spleens must take a daily antibiotic. Although very complicated, we were assured that Annika’s heart could be fixed.

We knew that she would need several surgeries, and her coloring would be blue/gray due to low oxygen saturation, but, we were willing to battle this out with her, forever by her side. As hours went by, she began to do worse. Her little heart was doing all it could.

I had just tucked myself into bed. Evan was on his way back to Indy, after taking a test for school and our parents were tucked into their beds at the hotel. December 16^th, shortly before midnight, I received a phone call. It was the NICU calling, and unless we made vast changes for Annika, we were going to lose her. The doctor needed me to come right over. I was at the hospital by myself and Annika made a change for the worst. I panicked, I cried, I felt sick. I blew up phones letting everyone know what was going on. I was scared to tell Evan, because I didn’t want him to drive recklessly, so, I decided to wait.

When I arrived at the NICU I was faced with what I thought would be the worst day of my life. My baby girl needed to be placed on ECMO; heart and lung bypass for children. I was so scared. My poor baby girl! I snuggled up to her; crying and praying the Lord give her strength. Doctors surrounded us, asking me to sign our lives away. They informed me on what ECMO could do for her. ECMO would give her heart, lungs and kidneys a break until she was able to get her open-heart surgery. Cannulas would need to be inserted into the left side of her neck. ECMO would by us some time, she needed to be placed on ECMO or she would die. Of course, like any other procedure, there were many complications that could possibly complicate things because of ECMO. But, it didn’t matter, because without it, the scenario was worse. We went ahead with the surgery to be placed on ECMO. She became ECMO baby #697.

After talking to Mary Ann and Evan, we decided that it was time to get Annika baptized, before the surgery. The chaplain came to Annika’s bed side and christened my baby love. I sobbed through the entire baptism, holding her tight. Mary Ann sprinkled the holy water onto her as we prayed for her precious life.

The ECMO procedure was performed at her bedside, and they couldn’t tell me exactly how long it would take, possibly an hour or two. My parents, Mary Ann, Grant, Erin and Kamden waited in the NICU waiting room.  We anxiously awaited the words “she’s finished, and she’s doing well.” A couple hours into the surgery Evan arrived. It was so nice to have him there, I needed him. Finally, after almost four hours, we heard what we had waited for and it was finally time to see her.

I walked in to see my baby, she didn’t look like herself. She was swollen, very swollen and red. All of the extra blood made her swell and turned her skin tone red. I kissed her beautiful face, thanking God she made it through. ECMO was overwhelming. It was a big machine, with many units. An ECMO certified nurse controlled it at all times. The cannulas were much larger than I had imagined and blood filled the clear tubes. I could rest easy that night, knowing ECMO was doing  all of the work that she had struggled to do for days, knowing she wasn’t in any pain and knowing she was in good hands.

Over the next few days we waited for our tiny little baby to become a bit more stable and little stronger so that she could have her open heart surgery. I was afraid of the surgery; after all, she was doing so well on ECMO. But, we joked, she can’t go to kindergarten on ECMO! ECMO became our safety net, she NEEDED ECMO and with it, she was okay.

During those few days she was on ECMO I would stand by her bedside, holding her fingers, admiring her hair and sweet face, wiping her eyes and her lips, giving here eskimo kisses and singing her lullabies. I also would bring out the teddy bear with Grant’s voice saying to her “I love you baby Annita.” My heart seemed to feel somewhat at ease over those few days because I knew she was safe on ECMO. I know that during this particular hardship I drew my strength from the Lord, and leaned on my husband and our families.

Finally, the doctors thought that she was ready to repair her total anomalous pulmonary venus return and place the shunt to her ductus arteriosus. The open heart was planned for the morning of December 20^th, just five days after birth. That morning the surgery was canceled, they did not think she was strong enough. The heart surgery was then planned for the next morning, but, due to a snow storm Dr. Turrentine (her surgeon) was stuck in St Louis after assisting a colleague. We were okay with everything because we wanted to be sure that she was strong enough to survive the surgery.

On the morning of December 22, 2010 we walked our daughter to the operating room with a team of doctors and nurses. It was time to perform the first repair. I. Was. Terrified. My hands were clammy and my stomach in a knot, but, I knew it was time. Just before gowning, Dr. Turrentine met with us. He reassured us that he would not perform the surgery if he did not believe that it would work. That was our biggest concern. We wanted to be certain that what Annika was about to endure was for her, and not for us.

We went to the waiting room and were given updates on the hour, every hour. At times time seemed to set still, but, overall the day moved quickly. I was so thankful for the updates, without them the day would have been even more miserable. We watched other families come and go all day. We were one of the first families there, and the last to leave. We were in the waiting room for a total of twelve hours.

Finally, the nurse told us that they were finished, she was stable and that we would be able to see her shortly! We met with Dr. Turrentine after her surgery. He gave us better news than we had expected. Not only did her surgery go well, but, he was happy with the repair and she was off ECMO!  They had told us prior to her surgery not expect her to come off directly after surgery.

We were then able to meet Annika in the PICU South. We walked into her new room, excited to see her. We walked into a large, white room, with doctors and nurses hovered everywhere.  That night we met Dr. Tosi, who was the critical care doctor for the night. Although Annika made it through her surgery, and even came out of surgery off ECMO, she was still a critically ill baby.  Dr. Tosi perched himself behind a desk on wheels and proceeded to tell us that he would be sitting with her all night, and he would let us know if there were any major changes.

Evan, Grant and I returned to the Ronald McDonald House. It was such a relief that her first open heart was a success. The long day had finally come to end, as much of an end that hospital life comes to.  Around 1am Dr. Tosi called to give us the news that Annika would have to be placed back on ECMO, but, even the few hours she was able to stay off was promising and good for her. A couple hours later he called back to inform us that she was doing better and she would not need ECMO at that time.  Her heart continued to throw out arrhythmias, which is common after open heart surgery. Arrhythmias became the reason she needed to be placed back on ECMO at 6am. I was disappointed that she needed to go back on ECMO, although, not overly surprised. I knew she just needed a little more time to become stronger.

On December 23 Grant was able to see his baby sister for the first time since birth. I was worried that all of the tubes and machines would scare him, but they didn’t seem faze him. He was so excited to see her. He obsessed over her tiny fingers and just how cute she was.  I was overjoyed to have my little family all in the same room. Finally, we were all together. It was such a relaxing feeling.

A snowy February 1st -few words were spoken; few sounds were made-the only sign of life, were the tears running down our face.

On Sunday, January 16^th I witnessed as they extubated Annika and she was able to breathe on her own for the first time. It was scary, because I didn’t know for sure if she would be able to do it…but, she never ceased to amaze me. She was working really hard so they placed her on vapotherm to help her breathe a little easier. Vapotherm is pressurized, wet oxygen. It forces in oxygen so that the lungs do not have to close completely with every breath, instead, the oxygen lets them keep open a bit; making it easier for her to breathe on her own. She hated it because if blew out a lot of water. The water would get all over her face and in her eyes. Her little cheeks were candy apple red because of the tape that was finally off her face. They looked so soar. I couldn’t believe that we had finally come to that point, she was breathing on her own. It was only a matter of time, she was coming home!

Over the next few days we learned that Annika enjoyed sucking on a pacifier. The nurses told us they were unsure if she would catch on right away, but within the day she had figured it out and loved it! She also enjoyed sitting in her bouncy chair, watching the lights and bright toys. I wanted to kiss her all over her juicy little lips, but I knew it would be worth the wait. I could not risk getting her sick.

That following Wednesday or Thursday I headed to South Bend for some much needed time at home with the boys in my life. Annika was making countless steps toward coming home and I could rest easily. My parents staid with Annika while I was gone, so that she had loved ones with her and so that I was more comfortable. That Friday was my birthday and it was nice being able to spend it at home, but unfortunately it wasn’t with my entire family.

 Saturday, January 22 we got a call that doctors were going to have to re-intubate Annika; she was having a difficult time breathing. We left for Indianapolis right after the call. I was able to remain calm by reminding myself how long she made it off, and that we thought she would have needed to be re-intubated long before she did. I referred to January 22^nd as a day of setbacks. She was re-intubated, had surgery to insert a new drainage tube and had to go back on narcotic pain medicine.

Over the next few days I felt things were promising. On January 26^th I was able to put clothes on Annika for the first time. I was so excited! I went out and bought shirts that folded over with front bottoms so that it was easy to get to her lines and dressings. On that same day we had a Care Meeting to talk about things that needed to happen in order for her to come home.

Over the next couples days her stomach began to look distended.  My mother-in-law was the first to notice. After she pointed it out, I told the nurse. The distension of her stomach quickly became a big deal. She was sent to have a test done including pictures and dyes. After the procedure we learned that Annika had several bowel perforations. The surgeon told us she had several perforations, which she could suture together, but that if they didn’t hold, there was nothing more they could do. I felt sick during the surgery. I knew if she wasn’t able to close them that she wouldn’t make it much longer. The surgery was performed and she was able to close the perforations. In that moment, I celebrated!

Annika was still on peritoneal dialysis. The fluid it the dialysis bag typically looked like urine. On Monday, January 31st the fluid in the bag was brown. I remember seeing that bag for the first time; I knew at that point that we were going to lose her. I remember feeling weak and a little like I might vomit. It was like I was in a shock. Evan had left the night before, in order to be at work that Monday. Two doctors, a nurse and my Mom were taken into a tiny little room. It was the meeting that every parent with sick babies fears. “There is nothing more we can do for her. We are so sorry.” I was heartbroken. I sat there, limp inside the couch. The nurse, Patricia, had her hand on my knee. I emptied what seemed to be a box of Kleenex and had a pounding heachache. I didn’t want to get up, I didn’t want to leave the little cave, I didn’t want to face reality. I called Evan and told him that he needed to get to the hospital and we informed loved ones that if they wanted to see her, they better come now.

After I left the room I ran into my friend, Angie. She too had a little girl on the PICU. We went into the tiny room and I told her what I had just been told. We cried together, she held me and I can’t thank her enough for being there to listen and lend support. I managed to push through that day …knowing she was going to die. We took finger prints, pictures, created a replica of her hand and spent the evening holding her, with loved ones and crying lots of tears. Quite honestly, I don’t know how I survived it. I was physically and emotionally exhausted. That evening some family and friends joined us as we were saying our final good-byes to our beautiful baby girl. I don’t know how I somewhat held it together. I never planned to introduce her like that, NEVER even crossed my mind. Late that evening I was talked into heading back to Ron’s House to get some much needed rest. Her nurse, Kim, held her all night. She rocked her, talked/sang to her and loved on her. We are so lucky that Kim was there to care for her when we were not. She was seriously incredible with her; we couldn’t have asked for a better nurse.

I arrived early the next day. Annika began to look very sick. Her body began to look purple(ish) brown, her dialysis bag was very dark and she was obviously uncomfortable. My mother-in-law brought to my attention that maybe we shouldn’t let her go through the suffering and that we should let her go sooner than later. I didn’t want to hear that; I didn’t want to let her go! But I didn’t want her to suffer either.

We had her baptized in our arms with several family members in the room. I was very emotional. My angel was being baptized, and I knew that we were having our last moments together. As the years pass, the days and specific moments become harder to remember. This moment is specifically difficult to remember. I’m not sure why. Maybe it’s God’s way of making grief a little more bearable? Maybe it’s my mind’s way of shutting out emotionally devastating memories? Or maybe in this instance, my mind was never truly there to begin with? All I remember about this moment is pain, and crying so hard that my head was pounding. Although I knew it was joyous to have her baptized…of course I didn’t want it to be because she was dying. I wanted to have it in our hometown, I wanted to pick out her baptismal gown or have Grammy make it, I wanted to pick out her “party” dress, I wanted to have a dinner to celebrate her baptism with family and friends…but I guess it was never about what I wanted. I never thought that the baptismal gown the hospital gave me, would be the outfit she was buried in.

Shortly after that…it was time. I discussed with the doctor that I did not want her to feel like a “fish out of water”. I wanted her to feel at peace. She had suffered long enough. Grant, grandparents and a few other loved ones kissed her good bye for the last time. With heavy hearts and tears in our eyes, it was our request that Evan and I be the only ones in the room to watch her fall asleep and never wake up. I sat in the chair holding my baby, as Evan sat holding us. The doctor (Dr. Tosi) and one of his nurses were also in the room. Doctor Tosi gave her a heavy dose of Fentanyl to keep her comfortable, shortly after he drew the endotracheal tube from her throat. Fentanyl is a narcotic, a pain reliever, which will make you very sleepy and slow the respiration rate if given enough. In order for Annika not to gasp for air, she was basically heavily sedated. After they pulled the tube I could see her entire face. I studied her face and she drifted away from us. I glanced at the monitor multiple times. I watched her oxygen saturations go from the upper 80’s (her normal -our normal is upper 90’s) down to the 70’s, 60’s, 50’s, 40’s and then 30’s. It all happened pretty quickly. Once she peered up at us, in a sense telling us the she was okay. When her sats dropped to the 30’s, the doctor turned the monitor off and shortly after he left the room. I knew when she passed, her eyes opened and she made an unusual noise as the last bit of air escaped her body. She suddenly had a peaceful face. I gently placed her eyes closed and began to softly cry. I too felt a sense of peace, as did Evan. I can confidently say that God held us in that moment. We both felt it.

The doctors and nurses began to come in, sharing their condolences. They let us know that we could hold her for as long as we chose. I rocked her tiny, angelic body as Evan went to tell our loved ones that she had passed. I sang to her “you are my sunshine” as tears flowed down my face…”don’t take my sunshine away”.  After I was finished, Evan held her and rocked her, alone in the room. After he was done, the grandma’s took their turn, holding her for the last time.

During her last day of life, I held her the entire time. Evan and our families cleared our things from Ron’s and the hospital room. It was snowing really badly out. The roads were terrible. As I was kissing Annika for the last time, the loaded cars were waiting outside the hospitals main entrance.

I didn’t want to leave; I knew that would be the last time I would hold her precious body. Finally, I had to say good-bye. I handed her to her nurse, who was preparing to give her a bath. As I walked to my family in preparation of leaving what had been my life…I felt numb, I felt empty, emotionless. The car ride home was similar. A snowy February 1^st -few words were spoken; few sounds were made-the only sign of life, were the tears running down our face.

Happy Birthday, Annika Noelle

Shortly after Annika died I began a journal. A journal that started with conception and is still continuing. This journal is how I reflect, remember and deal with the pain. I hope to share with others our journey. It is almost 20-pages long, single spaced. The part I have posted here is just a portion of it. I am excited to share it with you. It’s lengthy, but I hope you are able to understand the impact that families go through when they have sick babies. My heart goes out to those who have been there, know that you are not alone.

The Birth of Annika Noelle–

We were new at actually trying to conceive. We found out we were expecting after nine months of “trying”. We were both getting anxious. I would take pregnancy tests days before my missed period. It was just another month (April, 2010) when I decided to take a pregnancy test five days early, it came back negative. So, I promised myself I would NOT take another test until I was actually late. So, five days later when I didn’t start I decided to rush to the store for another test. I got off work and had to pick-up Grant, our then two year old, from day care. After I picked him up we rushed to Meijer. I bought the test and made a B-line to the bathroom. I put the test back into the bag and Grant and I headed back to the car. After loading him up I got the test out of the bag…it was positive! I was beyond excited. I had a smile from ear to ear. I proudly told Grant, “You’re going to be a big brother!”  I couldn’t wait to tell my husband, Evan.

As I was driving I wanted to blow peoples phones up to tell them the exciting news, but I wanted to wait. I couldn’t tell anyone before I told Evan…and I didn’t want to tell him, or anyone else, over the phone. Before conceiving, I had planned out exactly how I was going to inform Evan of the news. So, to carry out my plan, I rushed home, grabbed a long sleeve white-T (of Grant’s) and with a permanent marker wrote on it “I’m going to be (front)…A BIG BROTHER (back)!” Evan was at his parent’s house, so I met him there with a big smile and the big news! Grant found his Daddy, who was extremely happy that we were finally expecting baby #2. When Mary Ann, (Grammy) saw Grant, she read his shirt and began screaming! She was more excited than we thought she would be.  When we were finished informing the Horner’s we just had to go to my parent’s house and tell them as well.  Later we found that Mary Ann’s excitement not only stemmed from our pregnancy, but earlier in the week she had learned that two of my sister-in-laws were expecting. She learned she was expecting three new grandbabies in a matter of days!

Adam and Emily (my sister-in-law and her husband) came over a couple nights later. When they asked how we were, we told them we were expecting baby #2, January 5^th, 2011. Emily proudly announced that they were expecting January 4^th. We screamed, hugged and then, went shopping for baby clothes. Emily and I sat in the car and decided we should tell Erik, Erin and Ethan (other siblings). When we called to tell them the exciting news, Erik told us that Korey was due January 1^st! We couldn’t believe it!! We sat in the car, laughing, crying and screaming. We were ecstatic! Emily and I drove to my house and met up with Korey. The three of us stood outside for hours chatting about our pregnancies and how ironic it was we were all expecting babies in the same week.

I was about six weeks pregnant, when the dreaded morning sickness began. I felt nauseated all day, every day for about eight weeks; it then began to gradually get better.  I had “morning sickness” with Grant, but, it didn’t seem to be to the same extent as it was with Annika.  I tend to believe that it was because of where and what I was doing during the first trimester. With Grant, I was a nanny and when I wasn’t feeling well I was able to take it easy. With Annika, regardless of how I was feeling I needed to work. When you’re tired and nauseated it’s difficult to stand and proceed as usual. Co-workers seemed understanding at first, but it didn’t take long for irritation to set in.

The entire pregnancy I looked forward to mid-August, when I finally got to have an ultrasound. We didn’t find out the sex when I was pregnant with Grant, but I knew we would with baby #2 and I had Evan on board. I was excited to find out the sex of the baby so I could begin setting up the room and shopping for his/her clothes and other attire. When the appointment day came, my Mom, sister, Evan, Grant and I waited patiently to be called back. I’m not sure why, but, I wasn’t only excited, I was nervous. We waited and waited.

After an hour or more, we were finally called back. The technician began the ultrasound. Finally, we were able to see our baby. I was so happy, I couldn’t help but giggle. We were all smiling ear-to-ear, waiting to hear those three special words. “It’s a girl!” the tech informed us. Evan hesitantly asked her how sure she was. “Very confident!” she proclaimed.

Everyone left the room while I waited for the doctor to tell me “she’s perfect.” Meanwhile, I sent out mass amounts of IT’S A GIRL text messages.  After the long wait the doctor and technician came back into the room. The tech and doctor began discussing the ultrasound, after a few minutes I began to feel nervous. I asked if something was wrong. Dr. Kersh explained to me that something about the heart didn’t look right to her and that they would be sending me to a high risk fetal development doctor for a second opinion. My eyes filled with tears, I was so scared. My body ached, I felt nauseated and I wanted to tell them they were wrong. I went to the front and asked Evan to come back, he was furious because of the ridiculous wait. He needed to get back to work. Dr. Kersh informed us that the left ventricle looked small and that we would need to get the second opinion as soon as possible. They scheduled us an appointment with Dr. Donald for one week later. The wait was long and depressing. I didn’t want to talk about it, I just wanted to cry. The fact that we knew something probably was wrong, but, we didn’t know exactly made things that much worse. I couldn’t focus on anything, I felt sick. I wanted answers. I feared the unknown.

Every day I was grateful that it was one day closer to my appointment, but when the day finally came I wanted to run. Sometimes, ignorance is bliss. I thought I had prepared myself for whatever it was the doctor would inform me of. I had Mary Ann and Evan there for support. After the ultrasound he informed us that what he saw what was originally seen, something peculiar. He also informed us that our baby had two cloroplectic cysts on her brain. These cysts are not generally a concern, but, because they were paired with the heart there were chromosomal concerns. My heart sank; there was a knot in my stomach. We can fix the heart, but the brain? I was so in love. I felt her move, I saw her, I knew her name…I didn’t know what to think or where to begin. He called us into a consultation room to discuss our options and where to go from there. I cried and asked a lot of questions. Evan sat quiet and worried. He thought about how we would concur everything that had just hit us. The doctor drew us pictures. He listed off malformations I couldn’t even pronounce. He seemed bothered by us; annoyed that we were there, annoyed by the crying and annoyed by the questions.

He recommended a procedure called the amniocentesis. This test would inform us of whether or not there was a chromosomal defect to worry about. He explained several types of chromosomal defects. The first we were familiar with, Downs Syndrome and the other two, Trisomy 13 and 18. Both of those would have likely resulted in death just after birth. We could have the test done that day or schedule for another day. Evan and I agreed, why wait?  As Dr. Donald and his assistants prepped me for the procedure I became very nervous. I felt clammy and hot, my stomach aching. As they were setting up he tried to joke that that even Ray Charles could perform my procedure, meaning that baby was in a great position allowing a lot of room for the humungous needle. I just wanted silence. I was scared of the procedure, but, even more scared of the results. I wanted to escape from reality, from what was really happening. I always thought amnios were pointless, I would never get one. After all, abortion wasn’t an option for my babies.  But this was different; we had to know what was going on before they would send us to Riley.  Dr. Donald prepped my skin, one assistant handed him the sterile supplies, and the other did the ultrasound. I took a slow deep breath, and the giant needle was in. I thought the painful part was over. I looked at Evan for strength; his hands were placed over his eyes. The doctor began to pull the syringe up, the pain grew sharp. I closed my eyes and told myself how important the procedure was. I can do this, I continued to tell myself. When he was finished I felt relieved, I sat right up. I was thankful we were one step closer to answers. My stomach began to contract, I felt nauseated and things seemed foggy. I didn’t know what to say, think, or do. I sat down for a while longer, I almost passed out. Finally we were able to leave; I thought to myself, I hope to never step foot in this office again.

Again, it was a waiting game. The wait for the results was almost as painful as the wait for her to come out of her open heart surgery. I thought about things no mother should have to think about. I cried, I felt alone, sick and scared. I didn’t have an appetite and if you know me, you know that’s not like me. I was expecting a baby; I was in love with her. But, is she going to make it? Do I continue to do things that any other expecting Mommy would do? I was lost. At some point, I decided I would go insane if I didn’t pretend everything was okay. I was honest with myself enough to know that there was a long road ahead, but I just didn’t know what direction that road would take us. Finally, one day while at work, the phone was for me. Dr. Donald was able to give me great news, the chromosomal tests came back and everything was fine with the chromosomes! I was relieved that we had gotten a little closer to some answers. But, because of the heart issues, I would need to be seen in Indianapolis by a high risk OB doctor and a pediatric cardiologist.

September 10^th finally came around. The drive to Indy seemed never ending. I was nervous, few words were spoken. Evan, Mary Ann and my Mom all joined me for the nerve racking event. We finally arrived at Clarion North. We first met Dr. Cordes, the pediatric cardiologist. He performed an echocardiogram.  He explained to us that our baby girl had several congenital heart defects including: dextrocardia, unbalanced AV canal defect, transposed great arteries and pulmonary atresia. Dextrocardia is a rare malformation that means her heart formed on the opposite side, her heart was on the right. Often when this malformation occurs you may deal with several other complications. Often the stomach and intestines can be in the incorrect place, and there could be multiple spleens or no spleen at all. Pulmonary atresia is the term used when the valve orifice fails to develop, obstructing the outflow of blood to the lungs. To hear all of this tragic news broke my heart, but  at the same time I was relieved to finally know what we were dealing with, and to know it was fixable. He informed us that she would need the Fontan procedure. The first surgery, a week after birth, consisted of the placement of a shunt, the second surgery, at six to eight months, was the Hemi-Fontan and the final surgery, the Fontan, would be performed at approximately two years of age.

We were then sent to a high risk OB at Prenatal Diagnostic. They performed a full body ultrasound. They checked her out from head to toe, measuring everything. They informed us that they were unsure if our baby had a stomach. But they also were able to give us good news. Her respiratory and renal system looked great. What a relief to know that some of her major organs were healthy. We then learned we would need to be seen in Indy every four weeks until her birth.

At this point my heart seemed to relax a little bit; after all, everything was fixable. There were no more guessing games as to whether or not she would make it…she would be fine, nothing that surgery couldn’t fix, that is. Four weeks crawled by and we returned to Indy, this time we were seen at Indiana University Hospital. I was a basket case because we were running fifteen minutes late. I called to tell them we would be late, we were unprepared for the traffic and weren’t sure where we were going. When I called, the receptionist said to me, “we will see if we can fit you back into the schedule.” Everyone in the vehicle was agitated. Evan and I were arguing back and forth as to who was right about where we were headed.

We finally found our way to Prenatal Diagnostic. We met with Dr. Meijers, the pediatric cardiologist who performed the echocardiogram. She was pleased with what she saw, meaning there were no changes. Often times, with all of the defects Annika had, it is not unusual to see fluid around the lungs or an irregular heartbeat, she had neither. Evan asked the question we all wanted an answer to, “is she going to be okay?” With a smile, Dr. Meijers replied, “I think she is going to be just fine.” Tears began to pour, what a relief! The ultrasound technician entered the room shortly after. She did the normal 2D ultrasound measuring and checking everything she needed to. And then, much to our surprise, she turned on the 3D ultrasound. There she was, my baby girl, my love. We all cried again. We all agreed that she looked like Grant, or maybe even Sydney (her cousin). I was able to feel excited about my pregnancy!

Another four weeks came and went. I grew more understanding as to what we were dealing with. We began to put together a plan of action. I continued to remind myself that she was fixable, that it was all worth it. As the end of November drew near, I had to begin appointments at Women’s Reproductive twice a week for non-stress tests.

At my last appointment in Indy we learned that I would be scheduled for induction on December 20^th, 2010. We had toured I.U. and Riley Hospital. We were told about my steroid shots to improve lung development. Everything was in order. Now, all I had left to do was wrap some Christmas gifts, clean my house and pack some bags.

During a routine non-stress test, my midwife, Kristin Vincent, decided to check my cervix due to multiple contractions. Much to my surprise, I was 3cm dilated and 75% effaced. She contacted Dr. Schubert, my high risk OB, who instructed I come to Indianapolis right away. When I got the phone call it was 5pm. I was excited, no, I was nervous. But, I didn’t expect this I thought to myself. I’m not ready! My bags aren’t packed, who will take me, I’m not prepared for this– She’s safe here!!

After my bags were packed and I kissed Evan good bye, Tiffaney (my sister) took me to Dad and Mom’s. Mom, Grant and I went to Indy that night. We arrived at I.U. Hospital at 10pm. Dr. Schubert was there and was just finishing a cesarean, “he’ll be right in”, we were told. Hours later he came into tell us that it was a misunderstanding. No, there would be no steroid shots tonight nor would there be any baby for a couple of days, if he could help it. I was only 36 weeks pregnant and he didn’t want her that early. He wanted me in Indy in case of premature labor. I would receive my steroid shots the following Monday and they would induce on December 15, 2010 at 9am. Mom, Grant and I stayed in a hotel downtown that night. We arrived at 2am and decided we would figure out the details the next morning.

That next morning we took Grant to the pool, he had a blast. Mom swam with him while I sipped on coffee and checked my Facebook. After all, I was not about to put on a swimsuit!  I started feeling pain, in my left kidney. I thought it was probably back pain due to nine months of pregnancy. The pain grew intense. The pool was dead, so, I decided to slip into the hot tub in my bra and underwear for some much needed pain relief, I was willing to do about anything for pain relief. The pain continued to get worse. It’s a kidney stone (I have a history of them), I thought.  We all hustled back to the room, threw our things together and made the decision to go to the hospital. I went directly to labor and delivery. It was Wednesday, December 8^th at 10am. I told them about the intense pains. I knew it was a kidney stone. Hours later, they were able to get me some pain medication. After hours of pain, I was finally comfortable! I was able to leave the hospital Thursday evening.

I spoke with a good friend of mine, Mallory, about staying at her place so that I was close to the Indianapolis area, “just in case.”  She was fine with that and happy she could help. She came and picked me up from the hospital that evening after work. What a great friend I have in her. She opened her home to me, even giving me her bed! We made ham and bean soup the first night and had a great time catching up. When Friday evening came we made plans to go to dinner and to go see a movie. We enjoyed a nice meal at Granite City. While sitting there I began to have severe back pains, once again on the left side.  The pain grew quickly. Another kidney stone, really?  When we arrived at Mal’s apartment I slipped into a hot bath for some pain relief. I did not want to have to ask her to take me to the hospital, but after some consideration in the tub, I knew that all I was doing was putting it off. She quickly agreed that we needed to go to the hospital. So, Mallory, her roommate, Syjon and I headed to I.U. Hospital, Labor and Delivery. This wait was a bit shorter than the last one, because we knew what it was. Finally, relief!

The pain and agony of a kidney stone is unreal. The pain begins somewhat dull, but, within minutes it gets severe. Two stones, back to back on top of being less than a week from child birth, just isn’t fair! Evan and Grant greeted me at the hospital the next evening; I was able to leave the hospital yet again. I still had not passed the stone. But, we enjoyed a nice, relaxing night at the LaQuinta hotel. Evan took Grant in the pool while I sat and watched. It was so nice to be with my boys! I had missed them so much, after so much pain, agony and stress, I had a hard time letting go of them!

The next few days I stayed at Mallory’s, anxiously awaiting the induction of my baby girl. I drove to IU Hospital twice to receive the painful steroid injections. I had passed the kidney stone and I was feeling good, but, my anxiety was at a maximum because I was scared to death. I was scared of the induction, child birth and scared for my baby girl’s life.

Finally, the day had come. I was going to meet my baby girl, the daughter I had longed for.

I arrived at Indiana University Hospital at 9am for the scheduled induction. After signing paperwork, weighing in (32lbs gained), getting hooked up to the monitors and getting the IV placed, I was ready to roll. The doctor checked for dilation before we began and much to my dismay, I will still at 3cm. At 10am my nurse, Robin, started the Pitocin, upping the amount every couple hours. After a couple hours I began contracting. I tossed and turned, attempted to nap and twisted my hair as I anxiously waited for the contractions to become intense. The contractions became regular and grew stronger as time went on. The doctor came in to check on progression. 5cm. I couldn’t believe after all of the laboring I had done that I was only 5cm! At 4pm the doctors decided that it was time to break my bag of water. I knew that things were about to get really forceful. It is time, it is really time to have my baby, I thought to myself. I began to panic.

I chose not to receive an epidural when I was in labor with my son Grant, and I was just sure that I wouldn’t need one the next time around.  The doctor headed back in to check my progress, still I was 5cm. After getting discouraged, I decided that the epidural was the right thing for me. I began to worry about the epidural. Was it going to be extremely painful? Would I be injured forever if they mess up? Will this make my baby sleepy and there for lower her oxygen saturation? I was even disappointed in myself for needing it, after-all, I made it without previously. Will I end up in the operating room? My hands were clammy and even breathing began to feel like a chore.

The anesthesiologist entered the room. I was showed how to sit and what to do while he inserted the needle that would place the epidural. Never having an epidural before, I didn’t realize how difficult it would be to sit still during an agonizing contraction. He pricked my skin to numb the area that we would be working in. After that, there was no pain inflected upon me due to the epidural. He began to secure the epidural into position. I knew he was finished and I was relieved. After a moment my feet began to feel tingly, and even my legs. I couldn’t wait for it to kick in and take the pain of my contractions away!

I rolled around in agony. It’s not working. IT’S NOT WORKING! The nurse got the doctor to check me and paged the anesthesiologist to check my epidural. The doctor walked into the room to check me.  He stated, “We are going to have this baby, right now!”  “Don’t push” he exclaimed!  He hollered around for more staff. “We need nurses and the docs from the NICU and surg, STAT!” I become so nervous, but excited to meet my beautiful girl. I prayed, “Lord, please don’t let anything happen to her.” Meanwhile, the doctor had set everything up and we were ready. All of this happened in seconds!  He asked me to push. “One big push”…and he tells me “holllld it….now give me a little more…” Annika Noelle was born at 8:05pm, weighing in at 6lbs, 7oz and measuring 18 ½ inches. The sound of her healthy scream made us all cry- it was unexpected; it filled us full of promises and hope. I could not believe how beautiful she was; I just knew that she was going to be okay.  Dr. agreed beforehand to put her on my belly as Daddy cut the umbilical cord.

Seconds later doctors and nurses shuffled around us. They grabbed my baby from me just seconds after she arrived in my arms. They wrapped her up in a sterile blue towel and took off to the “Island” for evaluation.  Months before delivery I dreaded her being ripped from my arms, but, when the actual time came, I was somehow okay. Maybe it was hearing her cry that filled me with hope, but it was definitely the strength God gave me to push through. Of course I wanted to sit there, stare at her, hold her, nurse her and talk about how much she looks like her big brother.  But, that wasn’t reality for us.

I had a tiny tare that didn’t need to be repaired. The nurse cleaned me up. I was actually smiling at this point. Her cry was promising. My next thought had been on my mind for hours, I was hungry. I hadn’t eaten all day! Days before I made no-bake cookies. While I was waiting to see my beauty seemed like a good time to devour a cookie! While she was gone, the doctor and nursing staff would come in to inform me of her status. They hooked her up to leads and listened to her heart beat. She was doing better than expected! The doctor who delivered her even took pictures for us and brought them to show me. I was all smiles.

About an hour after delivery and some evaluation the NICU team rolled her to the birthing suite, where we all “oohed” and “ahhed” over her. Grant was able to meet his little sister. We all touched her fingers and rubbed her head, telling her “we will see you a little later.” The NICU staff then rolled her over to Riley Hospital for Children.

I was in a hurry to get over to see her, but, I wasn’t allowed to leave until I urinated. Due to the epidural, urinating was not an easy task. I told my nurse, Brittany, that I was able to walk to the bathroom. Believing me, she helped me to my feet, which were still numb. I placed one foot on the ground, tapping it to make sure I could stand; I then placed the other on the ground. My feet were numb, but I could see them on the ground…so, I began to stand. I fell right to my knees. It’s crazy, if your feet are numb, you cannot walk! Needless to say, I had to sit for a bit longer, until I could walk and therefore, urinate.

A few short minutes later, a doctor walked in with the phone, informing me that it was for me. The doctor on the other end informed me that on the way to Riley, Annika began to have trouble breathing, and they had to intubate her. I told my nurse that I had to get going, after the news that I received, I NEEDED to go be with my baby. I was upset that she started doing worse, but still, I knew she was going to be okay. Her problems breathing were expected, and intubation was expected as well. Brittany quickly helped me to my feet.  Luckily, I was able to walk with assistance. I sat on the toilet, trying to urinate. It’s hard to urinate when your muscles have been numbed, but, after a long time of trying, it finally happened.

I got in the wheel chair and was quickly pushed to the Riley NICU. After standing with her, and admiring her for quite some time, I decided I should probably get some sleep. Evan and I went back to the hospital and our families went to nearby hotels. I was exhausted, but not having her with me made it difficult to sleep. I was on a mother-baby unit; I heard the cries of newborns, the laughter of family and friends, I saw the nursery…I felt alone in a hospital full of people.

Good Grief

There are stages to the grief cycle; what they should tell you is that you will repeat these stages over and over and over again. There’s no miracle cure, there’s no being “strong”, theres no getting over it…

Evan recently began working with a person who lost a child, an teen/adult child. This person had just met everyone and basically as soon as he introduced himself began telling everyone about losing his child. Evan said to me that he had originally thought that this man had just lost his child, but the man went on to say that it had been two years.

Evans boss referred the man to Evan, stating that Evan understands, because he too has lost a child. The man began to ask Evan how he does it, any advice, how do we get through every day…

Evan said, “I have learned two things.”

1. First, you have to stop thinking that everyone around you cares as much as you do, because they don’t. It’s YOUR child! They will heal much faster than you. (A few months after Annika died we were still devastated and clearly heart broken. We weren’t able to move forward, but everyone else around us could, they were moving forward…and we were not. It was really painful, really lonely. But now we are able to step back and understand why their grief differs so much from ours, after all, she was our baby…)

2. Second of all- The world is going to keep moving on and pushing forward. You can choose to pick yourself up and move with it, or you can choose to sit behind and watch it move on, without you.

 

As he told me this my eyes began to get teary because, he’s right. You have to understand these two things before you can move forward with your grief process. I have started to wonder if the grief process for losing a child is ever truly complete. To me it feels like a process in which you move through, only to have the scab removed from your wound, time and time again.

 

 “For the amputee, the raw bleeding stump heals and the physical pain does not
go away. But he lives with the pain in his heart knowing his limb will not grow
back. He has to learn to live without it. He rebuilds his life around his loss.
We bereaved parents must do the same.”–unknown