Gratitude

My beloved Kerian,

Yesterday was Thanksgiving, and I had peaceful happy thoughts about you all day. I was grateful (and surprised) to have felt really good; not as sad as I had anticipated I would be. I did have several moments of missing you, and wishing you were with us, but overall, I made it through the day feeling pretty good because I have so much for which to be thankful.

Darling boy, I am thankful that pregnancy lasts nine months even though our experience was so hard. It was nine months of knowing you were there, in my belly, safe, and alive. I could feel you kicking and moving, and I could put your papa’s hand, or your brother’s hand on my belly and they knew you were alive and well, too. And for those nine months, your papa and brother and I could enjoy the anticipation of meeting you.

I am also thankful for the doctor at my OB/GYN’s office who had to move my appointment from Friday, August 12 to Wednesday, August 10. If she hadn’t decided to take the day off on Friday, then I would not have been in her office on Wednesday, August 10, when your heart rate dropped so dangerously low. She sent me to the hospital to have you immediately delivered. So your papa and I were able to meet you, and spend 13 wonderful days at home with you, and one more week reading stories to you in the PICU. I feel so lucky and grateful to have met you at all, because had you not been born on August 10^th, there is a good chance that you would have been stillborn.

How could I not be thankful for all of the doctors and nurses in the PICU, who worked so hard to save you, and who clearly were emotionally invested in your care? Dr. F. used adoring adjectives to describe you…he used “cute” one time, and “adorable” another. I was amazed he could see that through all of the tubes and wires. On the Saturday of your PICU stay, your father and I walked into your room just as Nurse G., whose back was to us, was talking softly to you—we heard her call you sweetheart. And oh, sweet boy, that did my aching mother’s heart so much good, because we weren’t allowed to stay overnight with you, and when we arrived that morning and heard her call you sweetheart, I knew you had loving care while I was at home at night.

I am grateful for the funeral director at the funeral home we chose in our state of blinding grief. We had such great fortune that he turned out to be an empathetic man, who gave us excellent advice and helped us create exactly the beautiful tribute we wanted for you at your memorial service. Without his assistance, there were several elements of the ceremony that might not have been, such as the viewing. I had wanted it so badly, but could not bring myself to put you in a coffin. He offered a “Moses basket,” and he let us bring your own flannel baby blankets from home to line it so that your body would be presented in a warm, sweet little nest.

I am grateful to all of the friends and coworkers who came to your memorial service. And to all of the people who sent us sympathy cards. Those cards helped us through some of the most excruciating moments of our lives, and even now, three months later, I still go through them from time to time and read the kind words and heartfelt sentiments that people took the time to write to us.

I am also thankful for the social workers and other people at the hospital who worked so hard to help your papa and I create the little memorial bookshelf in your name, in the PICU at the hospital where you passed away. It was so helpful for our healing to be able to donate books that other parents can read to their children in the PICU. And that will be an ongoing source of gratitude for me, because we will continue to make donations over the years.

I have a special call out of gratitude to the friend who has sent me “baby’s first” cards. She sent one at Halloween, and one for Thanksgiving, and I cried as I read them, and I shared them with your father, who also got choked up. That she thought to do something so tender and dear is a marvel to me—she has no children of her own yet. So I am deeply thankful to her for that special knowing that she has, that knowing that a bereaved mother of an infant still thinks about baby’s first everything. Friend, if you’re reading this, you know who you are—please also know how much I love you.

Lastly, my sweetest angel Kerian, I am just thankful to have ever known you at all. Your life with us was so short, but such an everlasting blessing. The only thing I would change would be to give you a perfect heart and have you come home with us. But as your papa says, the book of your life was already written when we created you—we just lived out your life paragraph by paragraph alongside you. Though you were ripped from us far too early, we would do it all again, exactly as it happened, just for the privilege of meeting, knowing, and loving wonderful you.

I love you Kerian,

Maman

What to Say (Or Not!) to a Bereaved Parent

I'm going back to work on December 1, and have been working with the HR office at work to prepare for my "re-entry." I offered to send a list of things not to say to a bereaved parent, and they took me up on it. In my research on the web, I also found a list of things that might be helpful to say to a mother or father who is grieving. If these lists look familiar, it's because I have borrowed bits and pieces of them from so many web sites I can no longer remember where I found them all. I believe most of the pieces came from these sites:

http://tcfcanada.net/2010/the-bereaved-parent/

http://www.nowisleep.com/showthread.php?19-I-am-a-grieving-parent...what-NOT-to-say.

http://thebiggestloss.blogspot.com/2010/07/what-not-to-say-to-grieving-parent.html

I edited grammar where I decided it was necessary.

Feel free to copy this list if you need to.

Best Things to Say to a Bereaved Parent

1.    “I don’t know what to say.”

This is an honest, straightforward response to parents, which still acknowledges the loss. When friends and family do not mention the loss, it can feel like the child never existed.

2.    “You must miss [child’s name],” or “I was thinking about [child’s name] today.”

Use the child’s name as often as you would if he or she were alive. He/she still lives in the hearts of their parents.

3.    “How is today going?”

This is a great alternative to “how are you.”

4.    “Do you have a picture of your child?” Or, “What was your child like?”

For the parents, whatever the age of their child, his or her life had meaning. When you ask about the child, it reinforces the fact that they played an important role in the family.

5.    “How are the other children?”

It is important to acknowledge their grief process as well.

6.    “Would you like to get coffee/go to lunch and talk about it? If you want to share, I am willing to listen.”

Often times, bereaved parents want to share the story. If you are strong enough to hear the details, and can listen without judging, your kindness will be appreciated.

What NOT to Say to a Bereaved Parent

1.    “You can have more children.”

All a bereaved parent really wants is to have his or her child back. You can't replace one child with another.

2.    "Be glad he was only [insert young age] and not [insert older age],” or, “He/she was only a baby.”

Length of time does not determine the size of a parents’ love, and a short life does not make the loss less painful.

3.    “It’s been [x] [days, weeks, months, etc.], get over it/move on, etc,” or, “Are you feeling better?”

A grieving parent will forever carry the heartache of losing his or her child. They might not ever say that they feel better. They might just feel “different.” Life after the loss of a child is often called the “new normal.”

4.    “He’s in a better place”

Most often, the bereaved parents simply feel that the best place for their child was in their home.

5.    “I know how you feel….my [husband/wife, mother/father, aunt/uncle, sister/brother, dog/cat] just passed away.”

When a child dies, the parent is left to grieve the future; they grieve first steps, graduation, wedding etc. Losing a child is very different from losing anyone else. If you actually have experienced the death of a child, share your story, and be patient with the grieving parent while he/she shares with you. This is often his/her favorite subject.

6.    “Thank God you have other children,” or, “Count your blessings with your older child/children.”

No one can ever replace the lost child—he/she was a unique individual even if only a tiny baby. It is true that when the energy for life is restored, there are activities and experiences the surviving children provide for bereaved parents.

7.    "It was God's will," or, “God wanted him/her,” or, "This was meant to be," or, “Things happen for a reason.”

It’s not your place to speak for God, and ultimately these kinds of comments make bereaved parents wonder why they were singled out for this kind of anguish and heartache.

8.    “Your child would not want to see you so sad.”

As with the question above, it’s not your place to speak for the dead child.

9.    “Why aren’t you back at work yet,” or, “You should go back to work,” or, “I’m surprised you took so much time off,” or, “You didn’t take enough time off.”

Grief is different for every individual. There is no magical time frame for returning to work.

10. “You should [fill in with advice].”

If the bereaved parent wants advice, even from someone who has suffered the loss of a loved one (even the loss of a child), he or she will ask for it.

Kerian's Memorial Bookshelf at the Children's Hospital

At last it happened. On Friday, November 11, 2011, my husband and I donated several books to the children's hospital where our Kerian passed away. I say at last because it took several weeks of communication with several people including the Development Officer to get what little space we were granted. (It's a big-city hospital and space is at a premium.) See image below.

The shelf on which you can see a copy of The Little Red Caboose is the space they gave us. Which is why we haven't yet donated multiple copies of each book.


Here's a closer picture of "the Kerian bookshelf."

And here's a picture of one of the books opened to the front where we put the labels with Kerian's photograph.

It was all so real again, once the elevator doors opened up to the PICU floor, and we saw the bright lights in the hallways leading to softly-lit hospital rooms, heard the humming, beeping and buzzing of medical equipment, and smelled the stench of sanitation.


All at once it was strange, and sad, and therapeutic, to look into that code room, at the very bed where our Kerian had been, all hooked up to wires, and tubes, and the ECMO machine. Part of me expected to see him there--the part of me that will forever be cemented in that place in time. Instead, in Kerian's corner of the room we saw a little Asian baby, his parents sitting on either side of his bed. And in the other corner, which had been empty during most of Kerian's stay, was a baby girl and her father. I felt my knees wobble, and at first I was light headed, but since the baby in Kerian's bed looked nothing like him, I felt a deep sense of relief. Neither baby was hooked up to a life support machine, and I felt hopeful for them, and for their parents.


As we spoke with the hospital staff, we learned that our donation, though smaller than that which we had originally planned, was indeed timely and welcomed. One staff member shared with us that the day before our donation, a father with a child on the PICU floor lamented that he was tired of reading the same three books to his baby. We were thrilled that our donation came the very next day so that he could begin to read our books to his child.


I expected to feel lighter, and more free for having made that donation. I can't say that that was the case. It didn't ease my burden, and it didn't take away my pain for having lost my innocent, and beloved boy. But it did feel good, so very good, to know that through those books that we read to Kerian to let him know we were there and that we loved him, other parents can do the same, and that this intimate sort of parenting can continue. The PICU is not fun--for us, it was part of our worst nightmare. I hope with all my heart that the parents who are led to those books will get the happy ending we were not given. I hope that by reading those stories to their children, they will all be given just a little bit of sunshine at a time when life can feel dark and ominous. The books we chose tell stories of hope and love, and emphasize the sweet innocence of childhood. Here is a list of the books we donated:

The Complete Tales of Winnie-the-Pooh, by A.A. Milne

A Beatrix Potter Treasury, by Beatrix Potter

Wherever You Are: My Love Will Find You, by Nancy Tillman

On the Night You Were Born, by Nancy Tillman

The Little Red Caboose, by Marian Potter

The Little Engine That Could, by Watty Piper


Guess How Much I Love You, by Sam McBratney 

The Little Prince, by Antoine de Saint-Exupery

Tumford the Terrible, by Nancy Tillman

The Crown on Your Head, by Nancy Tillman

Owl Moon, by Jane Yolen

This is not the end of our donation. Due to limited space, our initial donation was also limited. There is a remodel of the PICU floor coming up and we have been assured that an entire bookshelf is in the works. We are going to donate multiples of each book, as well as other inspiring and loving children's books as we come across titles that we think we would have enjoyed reading to Kerian.

My husband and I want to express our deepest, most humble gratitude to those of you who made donations to our cause. Please know that we have not yet spent all of the donations, but we do promise that every last penny of them will be spent on books for Kerian's "library." I will continue to keep you posted here, on Remembering Kerian.

Kerian's Three Month "Birthday" and a Note in My Purse

I awoke at 3am today, and could not go back to sleep. It's been pretty consistent since Kerian died that I awaken too early, or in the middle of the night. I just can't get a good night's sleep. I have tried exercising long and hard in the early mornings, eating light meals at night, and several other "tricks" that just don't work to help me sleep because what's really going on is that my body remembers. It remembers being awake to nurse him. And so I stayed in bed this morning because it was cold, and I just sat there remembering him, missing him, and it dawned on me--he would have been three months old today, November 10, 2011.

Shortly after I had that thought, his big brother, my now three-year-old son came into my bedroom, after a nightmare, and climbed into bed with us. Finally, with him there snuggled up against me and snoring, I was able to sleep.

When I awoke to my husband's alarm a couple of hours later, I was ready to get up and face the day. It's grocery day, so I decided to clean out my purse and look for the coupons I've stuffed in there carelessly over the last few months (because seriously, I have more cr@p in there than Mary Poppins has in her carpet bag). As I was doing so, in the pocket where I keep my cell phone, I found a tiny, wadded up scrap of paper. I opened it, thinking it was an important note that I surely kept. Instead, what I found was the scrap of a grocery list I had used in haste to write down the name and phone number of the cardiologist who agreed to see us the day we learned of Kerian's heart condition. I got choked up, and showed it to my husband and said, "I can't bring myself to throw it away."

He said, "It's okay to throw it away honey." 

Somehow I needed his permission--though I'm not sure why. Perhaps because he was there with me. We were there together that day at the perinatologist's office, for my 20 week ultrasound. I'll never forget the way the ultrasound technician hesitated. The exam was taking a long time, a very long time, and she was very quiet. I knew something was wrong. I think we both knew, my husband and I. Then she simply said, "I am finished here. I'm going to go get the doctor, since he always checks these things."

It took several minutes, a long time to wait when we suspected something awful was about to be announced. Finally he entered the room. He went through his usual greeting, and sat down at the ultrasound machine. He was quiet while he did the exam. Finally, he turned to us and said, "We've found something wrong with the baby's heart. It appears as if his heart and his stomach are on the wrong side of his body cavity. They're flip-flopped."

I couldn't breathe. I had to sit up, and take deep breaths and let that sink in. My husband held my hand, and gripped my fingers. The doctor continued, "I'm going to contact a pediatric cardiologist, she's top in her field, and see if we can get you in there tomorrow."

She wasn't available when he called, so we waited in the waiting room with the other perinatal patients. It's a tricky place, a perinatologist's office. If a pregnant woman is in a perinatologist's office, it's because she has a higher chance of losing her baby. Originally I was sent there because I was 41 years old and having a baby. It was strange, but I felt somehow lucky to be there at 20 weeks, to have them catch this problem early. So we would know.

When the doctor finally called us back into his office he said, "They're going to call you and give you an appointment time. I gave them your cell phone number." So my husband and I left in our separate cars. And since it's a strict rule that we share that we do not use the cell phone while we're driving, when the phone rang on my way home that day, I pulled over immediately, and answered the phone. It was the pediatric cardiologist's office, with my appointment, scheduled for the next day. I kept it in my bag even after the appointment, and must have squished it down, all wadded up, every time I shoved my cell phone back in that pocket of my purse.

So that is how, on the three month anniversary of my beloved Kerian's birth, that I came to find that little scrap of paper in my bag, and to have my tears, never far behind me, come up freely when I opened the tattered scrap and read it.

Remembering Kerian

Welcome to my blog about my son, Kerian, who died of congestive heart failure by way of Ebstein's Anomaly when he was 21 days old. He was born on August 10, 2011, and died on August 31, 2011.