Grief

Time, energy, and space are precious commodities. I never realized how much until Emerson passed. Grief takes an immense amount of time, energy, and space. Luxuries I do not have. See, I am still a mother. Both to two young boys and a new mother to our infant daughter. Time and space are rarely available. Energy seems to me a mythical creature for when I do have some free time and space (generally thirty minutes when all three children are miraculously asleep), I cannot seem to find this mysterious energy supply.

So here I sit. Mired in grief with very little availability to process. It’s hard for me to explain this so good luck following. When I cry for my son, it is soul wrenching. If I let the tears come, it is followed by deep exhaustion and a migraine. I am worn out, truly worn out, after I cry. I need to sleep both to regain my energy and to renew my soul. I’m always worn out these days, but I still can get out of bed and take care of my children every morning. Yet in order to do this, there is a large part of my heart I have to put in a box.

I seal my grief up because I have three surviving children who need a mom; not the broken helpless woman I am in my grief. So I don’t let myself feel. I turn it off. I am so amazed by women I know who can take time during their day to cry and mourn their children. I know they feel the same deep heartache and I know they have responsibilities of their own, including surviving children. I don’t know how they do it; how they let their hearts feel so openly. I’m amazed by these women. My grief is tightly controlled.

Here’s a story that makes me feel horrible: on the one year anniversary of Emerson’s passing, I did not cry. I wanted to cry. I wanted to stay curled up in bed the week before and the week after. I wanted to watch old videos and pull out pictures and completely lose myself. But I couldn’t. My children needed me. I have no problem showing grief to my children. They saw me cry many days after Emerson passed and on the few days when the deep grief escapes my safe little box. But I can’t feed my children if my grief is out. I can’t dress them. I can’t read them stories. I can’t take them to the park or change their diapers or hear what they are saying to me. My grief truly overwhelms me. So on the one year anniversary of Emerson’s death, we did look at pictures. We told stories to the kids about Emerson and Matt and I even went to the cemetery (but only for a short time because the kids needed us). But I didn’t get what I needed. I didn’t have time to write a story or share a memory of Emerson on Facebook or here. I didn’t get to cry with abandon. I didn’t get to fall into the despair that is always with me. And I truly felt like a horrible mom for Emerson that day, because I knew I had to be a mom for Sorkin, Lincoln and Anna on that day, and the day before, and the day after.

Grief is something of a luxury. You need time and space and energy. Not to say I don’t grieve daily. I feel that ache of missing my son every. single. day. In every moment. I wonder who he would be now and miss him in all the little moments (and the big ones too). There is not a day that goes by that I don’t speak his name. He is never far from my heart, my mind, or my lips. My children hear about their big brother and remember him through our stories. But the deep grief that runs deep within me, I have to manage that. I don’t have the capacity for the deep grief. And it builds within me. and it does need to come out. For my children, I worry that it is even more complicated than this. While I speak of this deep, heavy, large grief and how I tuck it away, the grief is never gone. My children see their mother sad all too often. They know about death and heaven. They visit the cemetery. They have a shadow hanging over them of their brother. I want them to love their brother. I want them to know who their brother was and how happy he made us. I don’t want them to think their brother ruined their mom or took away their happiness. How do I do this? I don’t know. We’re trying to learn and figure this out as we go along. Inevitably, all three of my surviving children will be shaped by Emerson’s death and I don’t know what that looks like or how I can make Emerson’s death a healthy part of their development and life.

And, as if that was not enough to place on my shoulders, it’s gotten more complicated. Having Anna here makes my grief more complicated. How can a mother wish to go back in time to when her eldest was here but before her youngest existed? I know that I cannot go back but even thinking “what if” or “I wish we could just go back…”, which are normal thoughts in the grief process. Yet, they feel like a betrayal to my daughter. I know I cannot go back but I also feel that I have (for the time being) closed the door to wanting to “just go back to when…”. It’s hard to grieve Emerson’s loss and celebrate Anna’s life at the same time. I need time and space to process these complicated feelings. In a perfect world my four children would be with me. I wouldn’t need to balance this guilt with the grief (there’s more guilt than this…there’s always more guilt). I wouldn’t need to process the grief at all because my son would be with me. But I don’t get to live in that perfect world anymore. I don’t get to know life with all four of my children.

Still, I know I have shut down a part of my heart. And all the love and support from family and friends, all the therapy, and all the prayers will not open that part back up until I am ready. When will that be? When will I have the time, the space, the ENERGY for grief?

My heart is broken. I can never be good or whole again. Even when I’m happy, I am heartbroken. I picture Emerson everywhere and his ghost is with my always. It is both cruel and kind that I never dream of him; if I did, what would be the point of waking?

He is everywhere. He is with me always. Yet I wish I had more time for him– more time for me. More time to grieve him like a “good” mother. Emerson was such an amazing person and he deserves to be honored and remembered more fully than I can do on a daily basis.

Last year, several of my colleagues and friends planted a magnolia tree for Emerson at my parent’s house. We’ve been watching it bud and bloom this spring. As we watch it come back to life, I tell my children it is Emerson’s tree and we talk about their big brother. I remind them that he loves them. I remind them that he is always their big brother, always a part of our family. I tell them the stories-their memories- of when Emerson was here. It’s not fancy nor is it nearly enough, but it’s how we honor Emerson as best we can. We speak his name. We can never forget him as he burned his light into our lives forever.

All Clear

Yay! Sorkin’s heart looks great. We had both an EKG and an echo today to be safe and make sure everything looks good. Sorkin has what’s called an “innocent murmur”. Dr. S let us know that between 75%-80% of kids have heart murmurs; usually they “grow out of them” once they hit puberty. Basically what he was explaining is that what a murmur usually is, is hearing the blood flow through the heart. Kids are so small without a significant layer of fat or muscle on their chest and with less bone density that it is really common to hear, and then once they hit puberty and development happens, there is too much anatomy to hear the murmur.

Here is why we needed the echo: typically one in about 126 kids have a heart defect which is less than a 1% chance; however, due to Emerson’s HLHS the occurrence of a ventricle problem in siblings increases to between 8-10%. So about one in ten kids. Luckily Sorkin is not one of those kids and I pray for the families who found out today that their child does have a heart defect.

The trip to Children’s was really difficult for me and Matt. We haven’t had time to process since we kept Sorkin today and try to save those deep deep emotions for the two of us. I do think in our processing we will talk about what Sorkin needs though. While we were at the doctor, he asked us if we remembered living at the hospital referring to our last stay at RMH in March. It might be really good for him and probably for us to do some visiting, remembering, and honoring for Emerson.

We did get to see Emerson’s cardiologist today which was bittersweet. I am so grateful to her and all the team at Children’s for their care of Emerson. I miss our boy though– too much for words.

Thank you to everyone for keeping our family in your heart today. It’s very humbling to have such a large, loving support system. Now we are going to go celebrate with our boys by popping a bottle of sparkling grape juice. Time to breath again.

Heart Murmur

A few weeks back, I took Sorkin, my three-year-old, to the doctor. His ear had been bothering him and we wanted to be safe/check for an ear infection. At his appointment, his primary care physician heard a heart murmur. I am glad we went to her since she has seen him since he was a baby and so she noticed the difference right away. She decided we should get an echo to clear him of anything concerning. Tomorrow is Sorkin’s echo. It will be our first time back at Children’s since Emerson died which is a lot of baggage I am not thinking of or trying to process in advance. So that’s going to be a hot mess/train wreck of it’s own.

No, tonight and every day since we went to the doctor, we have been anxious and worried about Sorkin. It’s hard not to be worried and I am sure nothing will feel better until after a cardiologist tells us everything is fine after looking at images of his heart.

Here’s why: we’ve done this before. We’ve had a kid with a small anomaly found at a routine procedure (my ultrasound). We were told not too worry and that while it was “something” it was probably “nothing big”. Then we received one of the worst diagnoses for heart defect: HLHS. Only 1 in 10,000 kids have this heart defect. It changed our life. It’s still changing our life. Emerson was more sick than we could have known at that ultrasound. He fought for every day of his life and it’s a miracle he lived for 4 years and 4 months– it’s not enough time but his life was a miracle for us.

Still, our experience has created deep fear around small concerns. I really appreciate our PCP for not minimizing it. I appreciate that she didn’t try to reassure me that everything was ok and move on. Instead, she recognized our family history, acknowledged Emerson and my fears, and decided that an echo would be the best tool in this situation to ensure Sorkin’s heart is ok. She asked where we wanted to go and who we wanted to see and made sure the referral reflected those requests. She did provide assurances but never once did she says “It’s probably nothing” or “don’t worry about it”. She just knew that we would worry about it.

And we have worried about it. Every day. Every time Sorkin is tired. Every time he stops playing before his friends or cousins. Every time he seems unwell. I question if he is a.) just sick (it is winter after all), b.) just tired after playing (he is only 3), c.) actually tired from a lack of sleep (he goes to bed at 9 and gets up at 5– not great), or d.) if this is an undetected heart defect. The worry and concern it can’t go away and I don’t think it should go away at least not until we have the echo and then talk with the cardiologist. Then we will know.

It’s been hard with Sorkin since Emerson died. He is so emotionally intelligent and complex. He understands when we are sad or upset and he comforts us (he sings a song from Daniel Tiger: “it’s ok to be sad sometimes, little by little, you’ll feel better again”). Then at random times he misses Emerson hard. He struggles with understanding death and how it will affect him. For example, last night Matt was putting Sork to bed. He, Sorkin, suddenly talked through the ambulance pick up of Emerson: how the EMTs came into our house, how he stopped the show, then he was so scared, then they took Emerson and Uncle JC stayed with him. Then he said something to Matt along the lines of the ambulance did not bring Emerson back. It’s heartbreaking for us but we help him through it the best we can. Emerson was his big brother and our lives were centered around his care for most of Sorkin’s life. Most days I love Sorkin’s memory and emotional intelligence; I am so happy that he has those memories of his big brother. Then other days I feel so lost. Matt and I don’t know how to parent through this pain. We do the best we can. We tell him the truth as best as we can. And it hurts. The whole thing hurts. It should hurt. It’s ok that it hurts. It’s ok that Sorkin hurts, but it’s unnatural for a mom to help their child through the death of a sibling.

And now my sweet Sorkin has a heart murmur. I keep trying not to get ahead of myself but I catch myself thinking ahead and playing out “what ifs”. Mostly what if Sorkin does have a heart defect and needs intervention? How can we help him through that? How will he ever understand that Emerson’s life and history is not his? I think the answer is we don’t do it alone. We use supports (like therapy) to help Sorkin through it. Again, I know I am getting ahead of myself but it’s hard not to after Emerson. We’ve been told previously that it’s “probably nothing” and to “have a good weekend” while we wait for our echo. I am continuously grateful for the amazing care in Minnesota. I believe that Emerson would not have made if 4.5 years if we had stayed in Chicago. He would not have made it through the first harrowing surgery. There is genuine care and bedside manner here which I found lacking in our medical journey with Emerson in Chicago.

So we will say extra prayers tonight and see what tomorrow brings.

Emerson’s fifth birthday

It’s been a long time since I wrote an update. These last few months have been so unbearably difficult and sharing has not come naturally to me. Today feels like a culmination of the pain but I know tomorrow the pain will still be there. And I am not sure I will be ready to talk about it, or share it, or make it real in anyway.

Five years ago today, my son Emerson was born by emergency c-section. Five short years that were a lifetime ago. Today, this is how my husband, two sons, and myself celebrated:

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and that is terrible. I honestly don’t even have words to describe the pain in my heart today.

To say I wish for “one more” is not true. I wish for a lifetime more. A lifetimes more of birthdays. A lifetime more of big memories and little memories. Instead I get to spend my lifetime reflecting on the short 4 years and 4 months my sunshine was in my arms. I miss you my little love. You made your mommy a better person than I was without you. You brought me so much joy and happiness. Happy Birthday in Heaven my love. Until we meet again.

 

First Day of School

So today was the first day of school for my family. It was so much fun to see the pictures of my nieces and nephews dressed in their new clothes holding up their signs (first day of first grade, first day of third grade, etc.). Yet it was also a day tinged with sadness for me.

Emerson should have had his first day of preschool this week. I think it would have landed tomorrow but we never got all the details. I do know he would have been in an integrated class two days a week and a specialized class one day a week. The last time he was at school, he and Matt went to see his new classroom. Matt said he was so excited.

Emerson loved school. I can only speculate on all the reasons, but it is not speculation to say he loved school. I think he loved going somewhere without mom and dad. He loved making friends with people his own age. He loved music. He loved learning. He loved playing. Preschool offered all of this and more for him. I wish he could have told me with all the words of a three-(at-the-time)year-old what he loved about school.

I was so scared to send him to school the first time. Without a parent. Without a nurse. It is scary enough for a parent to send a child off to school for the first day. A child like Emerson whose needs were exponentially higher than his peers was just terrifying to send him to school. But he loved it. Every day he came home the van driver would tell Matt how happy he was and we never had a truly negative report (only on days we knew Emerson was a little run down).

I am so sad that we do not get to put him into the Halo van this week. I am so sad that he won’t be reunited with his friends from last year and have the opportunity to make new friends. I am so sad that he doesn’t get to learn and grow and discover. I am just so sad today.

I remember backpack shopping with him last year. It was the day before school started and I panicked. We had to go over to the main preschool building and I saw all the kids with their backpacks. I had not even thought that Emerson needed one too. So that afternoon he and I went to the store together. We walked down the backpack aisle and looked over the options. I picked up two that I preferred (I think one was minions and the other might have been Ninja Turtles). I asked Emerson which one he wanted and he didn’t want either. He looked away from my choices and straight at a Spiderman backpack. So I held it up with the minion backpack (still holding out hope) and he reached for his new backpack. He was so happy. And I never get to do that with him again.

I don’t  ever get to buy him back to school clothes or school supplies. I don’t ever have to sit through an awful IEP meeting again. I never have to attend a parent teacher conference for him. We will never attend an open house or meet a new teacher or para for him. An entire world of nevers. A whole lifetime of memories (good and bad) taken from me and his dad and his brothers.

To say it’s not fair feels like a gross understatement. It’s all I have though. It is not fair. It sucks so much. I want all those memories. I want all the work. I want my son. Nothing can ever make this easy or better. And I hate every minute of it–living without Emerson. But, I loved and I cherish every minute that I got to have Emerson as mine.

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Five Months and a Miracle

To say the last five months have been difficult would be an incredible understatement. I don’t have the words to describe the feelings any more which is probably a significant reason I have stopped sharing the words. I find myself becoming more brittle, less open. And that’s hard. I don’t want to share right now or maybe I just can’t. And as I feel the bitterness creep in and take over my heart, I know I need to make a change. That’s my personal baggage right now and I am making changes to be a better person in order to keep my heart from hardening.

That’s not really what this is about tonight. Tonight, with Emerson being gone from this world for five months, I have a story to tell.

Sorkin has gotten into this wonderful stage. He tells stories. He also likes to talk about Emerson a lot. These two have not yet overlapped. Conversations about Emerson are real: what we did together, how he got sick, when he died, and where he now. Sorkin’s stories are incredibly elaborate. While they may have elements of real life (mom is in the story), the plot is fantastical: mom is a ninja who can fly.

In early July, we were driving up to my parents’ house to hang out for a night, not an uncommon occurrence especially since Emerson died. I usually am exhausted when I finish work these days and just want to lay on the couch; going up to my parents means both that I cannot just lay around (my mom might argue this) and that my kids will have people to play with since a few of my brothers and sisters are at home. We were just getting off the highway when Sorkin started talking about Emerson, but this conversation was different.

Sorkin started by saying Emerson is in Heaven playing with my baby sister right now. He then started talking about Emerson and his baby sister. I stopped him and said Sorkin, you know you don’t have a baby sister, right? Sorkin’s response was well not yet mom. Matt and I just shared a glance. Sorkin did not know that we were expecting.

That’s right, in the midst of this incredibly difficult, emotional, exhausting journey of grief and death we are pregnant: due March 1st. Another little miracle just like my Emerson. But unique in its own way– in a way I am unable to articulate (see, no good with words right now). An unexpected gift in grief.

So, we told Sorkin about the baby a few weeks after his story: mostly so he would stop jumping on my uterus. He has been so much fun with this pregnancy. He talks to the baby every day and tells the baby he loves it. He talks about how he is going to take care of the baby and I think he is pretty serious. He came with to my first doctor appointment which included a dating ultrasound. When he saw baby he said “She’s so beautiful and she’s growing!” oh yes, he is convinced this baby is a girl. I keep reminding him that we don’t get to choose and it might be a boy. He says no, it’s a sister.

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Sorkin’s behavior reminds me so much of Emerson’s with Lincoln. Emerson loved Lincoln and could get him to stop crying every time just by rolling over and checking on Lincoln. It was such an incredible relationship, and it tears my heart to pieces that Lincoln and this new baby and Sorkin have to miss out on having Emerson actively here as their big brother. He taught them a lot though and we will always tell them about Emerson. He will live on through our stories and our tears and our laughter. My sunshine. Below is a picture of Emerson and Lincoln during our family photo shoot 5 months ago today. You can see so clearly how much Lincoln loved his oldest brother. It kills me that he will have no memories of his own and that our new baby will never meet Emerson in this life.

I miss you so much Emerson. I cannot believe it has been 5 months since I held you in my arms, smelled you, brushed your hair, bathed you, sang you a song, and so much more. I love you so much my sunshine. Keep watching over us my love.

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Lincoln adored his oldest brother.

Father’s Day without Emerson

Today is Father’s Day. A day to celebrate the wonderful men who put in the time and raise wonderful children. I have had many strong male role models in my life; starting, of course, with my father. But I want to talk about my husband right now.

Today my husband has to celebrate his first father’s day without Emerson, his first born. The first reading at church today, from Zechariah, talks about the death of Jesus and how it will feel. At one point it says ” ..they shall grieve over him as one grieves over a firstborn.” That’s us. We’re grieving over a firstborn. Honestly, I am not sure if it means over the death of a firstborn or if it means over the choices your firstborn will make. God knows children always find a way to cause grief for their parents. But we’re grieving. We’re grieving the loss of our first born.

So I was thinking today a lot about grief, children, and being a father. Having never been a father, I am not sure how it feels although I suspect it is similar to being a mother (but different, because why not). I do know about my husband though. I know what an amazing father he is. And I know how much Emerson loves him.

My husband got the wonderful (enviable) opportunity to stay home with Emerson for about a year and a half. During that time, Emerson and Matt became very close.We always joke how Emerson was a mini Matt and Sorkin is a mini me. Now our mini Matt is gone (and so much more than that, since Emerson was also his own person). And so my heart breaks. My heart breaks for my loss. My heart breaks for my husband.

I’m not sure how to explain the relationship that Matt and Emerson had together. Emerson adored his daddy. The last week in the hospital, whenever Emerson was conscious and daddy was nearby, he tried to get out of bed and into Matt’s arms. The only picture I have of Emerson from that time is a picture of him looking off to the side of the camera: he’s looking at his daddy who was standing on the opposite side of the bed as me.

And so, it was only natural, when the time came to take Emerson off life support, that Matt held Emerson as he passed from this life into the next. Emerson just wanted his daddy to hold him and he finally got what he wanted one more time. I hope Emerson knew it was his daddy holding him. I hope he knows how much we love him and wanted to make every wish come true for him. I think he knows that now, but, in the moment, I really don’t know.

So while we celebrate Matt and his amazing transition into a father and his growth as a father, we also mourn the loss of his relationship with Emerson. We mourn for all of the never’s, could have been’s, should be’s.

On Father’s Day, just as on Mother’s Day, we visit the cemetery. And it is heartbreaking.

So to my husband: to the man who pushed Emerson every day, who nurtured growth, learning, and fun, to the man who started and stopped Emerson’s middle of the night feeding every night, did Emerson’s medications twice a day, and put in Emerson’s hearing aids (time and time again), to the man who coordinated Emerson’s medical care, took Emerson to school, took Emerson to music therapy, to the man who promoted Emerson’s love of music, making noise, swinging, walks, and (toy) cars: you are an amazing father. Emerson came so far because you worked so hard with patient love. Emerson was so happy to be home with you and I am so happy you got to be with him everyday. Thank you for continuing to be the same loving, caring, dedicated father to our surviving sons even through your pain and desolation. I could not ask for a better partner than you or a better father for our children. I love you Matt.

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