Category Archives: Bereaved Parent

Our Hospital Visit & The Days that Followed

The first night they moved us up to pediatrics so that we could have a private room. I had asked the nurses to let the head of Labor & Delivery know that we were here as she was my old OB and it would be nice to see a friendly face. Unfortunately she never came to visit; we found out later that she was in the middle of an emergency.

The next morning we were moved down to Postpartum. Evan and my mom came to meet Ella. While everything felt really good and looked really good, we were really nervous. We asked for the pediatrician on call to come visit and check out our baby girl.

“I don’t need to examine her. Pediatricians were present at the birth and checked on her then.”

“Yes, but we’d like her checked out now.”

“But everything is fine and they are going to perform all the newborn screenings on her. If there are any abnormal results, they will contact you right away and they’ll be able to treat her and she’ll be fine.”

“Listen, we are very intelligent people. You have to understand that our son died suddenly after eleven days and his test results were all normal. We’re asking you to examine her; please just examine her.”

So she begrudgingly looked her over and unfortunately, it did not relieve any of our anxiety.

That afternoon Ella’s limbs turned blue and she projectile spit up; we did not know what to do. I got on the intercom and said “we need someone in here now”. No one came. My husband had her and after she spit up, she pinkened up again.

Ten minutes later our nurse arrived with lunch. “I heard you wanted lunch right away so I waited at the kitchen to get it for you.”

“No I did not want lunch; I wanted help.” I was beside myself. How scary to ask for help in a hospital and for no one to come. Our nurse explained to us that Ella was expressing fluid from the birth and it was normal as long as her core remained pink.

The next day our nurse walked in and it happened again. The nurse said she just had a feeling that she was needed.

I spoke with my sister, the pediatrician, and she told us which extra tests to ask for and then to have them done again a week later to see if anything changed. The nurse nicely put in the order. Everything looked good and we were discharged.

We asked that our two-day checkup be with our pediatrician and not at the breastfeeding clinic.

“You can make that change on-line when you get home,” we were told.

Although the pediatrician was awful, it was nice to find the majority of the other staff to be supportive. When a social worker came to see us, she asked how the staff was treating us. She was wonderful and told us that all of our thoughts, feelings and requests were normal and she made sure that we had an appointment with our pediatrician two days later.

It was difficult to not have a single familiar face- not the head of labor & delivery (my former OB), my current OB or my current pediatrician visited us. A couple days after we returned home, I sent my OB an email.

6/26/2012

Hi Dr T,
I have been really sad not to have your support so far with baby girl. You had said you’d come to the hospital and would watch me like a hawk and would have a nurse come visit me and I haven’t heard or seen you. I tried to see Dr. M and kept telling them to tell her that I was there but she did not come see me either. We were admitted to the hospital Friday around noon and had Ella Friday night at 8:05pm and were discharged Sunday around 11am. I have been advocating for myself with my sister the pediatrician’s help from afar. I requested CBC and a BMP and everything looks normal. I requested to see our pediatrician yesterday and again next Monday and again two weeks later and not to go to the breastfeeding clinic. We went to see our pediatrician yesterday for the first appointment and asked to have the blood tests repeated on Sunday and again two weeks later. Breastfeeding is going well. My milk came in last night and her poop has already changed colors.

Beth

She called me back immediately. She had been working at Labor & Delivery when I called in Thursday night and had hoped that I would arrive before she left for a family vacation Friday at 11:30am. We had just missed each other. When she returned Monday she checked the records to find out how we were doing and was planning to call, but wanted to give us some time.

Somehow that was the perception of all of our friends – that we needed some time; they should wait to call; wait to visit; wait to write or send something. It made for a very lonely feeling. And unfortunately made me feel like they were waiting to see if baby girl would die like her brother did.

I began to text my local friends asking them to visit, asking for their support and they came. It felt great. It was such a scary time and I needed as much support as I could get.

Adam suggested that we formally send out an email announcement and then we’d hear from our friends who were far away, but aside from an email back or a text we did not. No one out of town called. When Ella was 5 weeks old, I felt safe enough to send out a formal birth announcement to our out of town friends and family- not one person called or wrote to say they received it. I checked with my mom and my mother in law and Adam, but no one mentioned it. It was almost as if we had not sent them.

I had a hard time sleeping when Ella slept. I would lay down next to the co-sleeper watching her sleep, asking Adam about each noise that might be strange. Our unspoken fears were mirrored in Evan. “Is she ours? Do we get to keep her?” he would ask each day the first week. Her second week he checked daily that she won’t die that only Ethan died; which is healthy for him to express, but hard for us to hear.

On July 2nd, our pediatrician told us that all the tests we did the day before came back normal. As we left the pediatrician’s office, a wave of relief washed over me. I looked at Adam and said “we get to keep her. She’s ours.”

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Let’s Rewind

It’s been a while since I have blogged. If my thoughts could be typed up for me as I lay in bed with my arms around my little girl, this post would have popped up much sooner.

It’s a week before my due date and I begin to actually feel angry. I want my little girl out and I want her out now. Lo and behold she heard me. That night my water broke (began trickling out throughout the night), though the nurse at labor and delivery was sure I was urinating as he said that is a common thing at 39 weeks (really?). I decided that my husband would appreciate the extra hours of sleep, so we did not rush in at three in the morning.

The next day my contractions were not becoming more regular and at 11am we packed up and headed to the hospital.

We were in the waiting room for about thirty minutes and then had to wait in triage for a couple of hours for a room to open up. We found out that my water had broken and they would give me pitocin to start labor. The nurse who was with us was wonderful.

When we got to our room the pitocin starting working a little too well and they had to dial it back a couple of times. I could not wait for them to check me again. At 6:30pm when I was supposed to be checked again, they said I had to wait for the shift change and the doctor would check me “because she wanted to have some fun too”.

My nurse went on break and unfortunately did not tell the nurse who came on about Ethan.

“So which child is this?”

No answer.

“Hello? I’m asking you a question. What number child is this?”

“I know you are and I’m choosing not to answer.”

My nurse later apologized when she returned and explained that she should have told the nurse about Ethan.

Finally I was checked and the doctor said I was really and that they would set up and she’d be back to deliver our baby girl in a few minutes.

Fifteen minutes later I asked where the doctor was, so our nurse went down to triage to get her. Thirty minutes later, I informed our nurse “I don’t care who catches this baby; get someone in here now!”

“Oh I thought you wanted to have a pediatrician present for the delivery; we’re waiting on them.”

“No, I would like them present for her birth. We can begin.”

My husband convinced me to have the mirror to see our daughter being born, as it might be my last delivery. But I did not have the chance.

Three pushes later, Ella was born.

The pediatricians rushed out after she was born. But she did not pinken up on my chest; she remained blue. She had come through the birth canal too fast. The pediatricians were called back and I was hysterical. My husband was right there with them next to me, but I could not see a thing.

After a few good hits to her back, she lightened up and was returned to me. I was so relieved. We had our beautiful baby girl.

Now just to hold our breaths to insure we could keep her.

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Making Changes At School

May 21, 2012

Hi Beth,
Your healthcare provider sent a certification for family leave form confirming your need for pregnancy disability leave. The start date provided by your doctor is June 1, 2012 and I don’t think that is what you are planning. Before I send you the confirmation that you are approved for the leave, I need the date you are planning to begin your leave. This is not a date set in stone, only the date you intend to start your leave, which is based only on what we know now. Is it June 1 or June 15?

Thank you so much!
Karen

May 21, 2012

Hi Karen,

I plan to go to the end of the school year. My doctor wanted me to have the flexibility if I wasn’t feeling up to it to be able to leave earlier. I am officially 36 weeks on June 1st and could start disability at that time, but I think it would just use up my personal and sick days to make it through the rest of the year. If I’m really not able to keep up with my current schedule, I would take off early letting everyone know, but as of now I am prepared to go through the end of the year.

Best,
Beth

May 21, 2012

Beth,
Thanks! You have 2 personal days this year which don’t roll over. You should use those if you need. You don’t have much sick time (2 days) to roll over into next year. If you don’t need the personal days, you can also convert those 2 of the sick days you took earlier this year in March to personal days which would give you 4 sick days for next year. Let me know.
Karen

May 21, 2012

Hi Karen,
I dont remember taking 8 sick days- do you mind sending me the dates- I took a lot of professional days this year but not sick days.
Beth

May 21, 2012
Beth,
Here is the leave request. It is attached to a note from your doctor excusing the absence for medical reasons. You were out March 1, 5, 9 and the week of March 12-16.
Karen

May 26, 2012
Hi Charlie,

I just wanted to express how I was feeling with you. Once I decided that my body could not handle the current workload, I had thought that I had 10 sick days and 2 personal days to use to take me through the end of the school year. It is upsetting to know that 8 of my sick days were taken so that I could spend time with my family at the anniversary of Ethan’s death. At that time when they asked me for a doctor’s note to say I needed time off for it to be an “excused” absence, I did not understand that “excused” meant sick (as you can see below in my emails with Karen). Secondly the fact that they made things harder on me like having to go to my doctor and talk about taking time off for Ethan did not make the month easier as I felt a Jewish day school should have. Anyone with common sense would know that the anniversary of your son’s death would be a difficult time to be working and would not need a doctor’s note and would want me to take that time as it would be better for me and the students.

This year even in my mourning I have never slacked off in my duties and have taken on much more than asked for the good of my students. In third grade I created a program with the preschool where I would take one of my third grade classes for six of the holidays and the other class to senior home. I arranged for my third graders to have a Lag B’Omer celebration since the school was not doing anything. I arranged for my sixth graders to provide a Shavuot celebration for the entire kindergarten since the school was not doing anything. As you know I stepped up to coordinate all three of the Jewish holidays in May for the school since the school was not doing anything and I’m fortunate you agreed to help me. For my professional development, I chose to visit 4 different Jewish day schools in the area, spending a day at each one and creating PowerPoint presentations of their best practices to share with our teachers on my return.

In the scope of things money does not really matter anymore and yet as I’m taking off until January and will not be paid for half a year and when I return I only have a contract for 89.1%, it does make me nervous.

When Adam asked me a few years back why I wanted to only teach at a Jewish day school I replied that I wanted the support that I knew a Jewish day school could provide when we had a family. To me our school does not have that Jewish day school feel, it has the feel of an independent school with Jewish values. And this makes me sad. Maybe with our new vision developing this will change.

Thank you for listening. I have enjoyed working with you over the last three years and I’ll miss your smiling face.

All the best,
Beth

June 3, 2012
Charlie,

Again I want to express how I am feeling with you since it has been a week since I first wrote to you. Once I decided that my body could not handle the current workload, I had thought that I had 10 sick days and 2 personal days to use to take me through the end of the school year. It is upsetting to know that 8 of my sick days were taken so that I could spend time with my family at the anniversary of Ethan’s birth and death. At that time when I was asked for a doctor’s note to say I needed time off for it to be an “excused” absence, I did not understand that “excused” meant sick (as you can see below in my emails with Karen).

Secondly the fact that I had to go to my doctor and talk about taking time off for Ethan made the month much more difficult. Anyone would know that the anniversary of your son’s death would be a difficult time to be working, would not need a doctor’s note and would want me to take that time as it would be better for both me and the students especially a Jewish day school.

It is disappointing to feel like I do not have the school’s support.

I hope to hear back from you soon,
Beth

June 03, 2012
Beth,

I have not had the opportunity to look into this yet and will try to do so tomorrow.

Sorry for the delay in responding.

Charlie

June 08, 2012
Hi David (the new head of school),

I know we do not know each other yet, but I wanted to ask for your help. I just finished my third year teaching here. In the March of 2011 I had my second son, Ethan, and after 11 days he suddenly died to everyone’s surprise. Prior to March of this year, Ben and a therapist met with me and said they knew that March being the anniversary of Ethan’s birth and death would be a difficult time for me; he told me to take whatever time I needed and that it would be excused. He asked me to fill out a form so they would know which days I would be out and when I’d need coverage. I filled out the form and checked “other” and wrote excused. When Ben received the form he asked me to meet with Karen, our HR person, to figure out what I would need to do for the days to be excused. Karen then asked me to get a doctor’s note to say I needed the time off; I really did not understand why I had to do this and it made it a lot harder on me, but I went to my OB and asked for a note so that my time could be excused.

I am now expecting a baby girl in the next couple of weeks and when I decided to take the last two weeks of school off I thought I could use my sick and personal days to carry me through the end of the year. That is when I found out for the first time that they took my sick days for my time of mourning. Why I needed a doctor’s note to have my sick days taken I have no idea and why sick days are considered excused I have no idea.

I’ve been writing Charlie and Ben, but as you can see below I have yet to hear back from anyone. I feel that with the busyness of the end of the school year, Charlie leaving at the end of the month and my return not coming until January that they feel they can ignore my request. For 11 sick & personal days I should receive $3,255.67 instead I am receiving $887.91 for 3 days- a difference of $2,367.76. I feel that this is not something I should have to advocate for- that the school should follow through on their word and be much more supportive of me.

I look forward to getting to know you in the upcoming year.
Thank you for listening,
Beth

June 11, 2012
Dear Beth

Thank you for reaching out. I am sorry for your loss (Caitlyn and I went through a similar situation with our son this past year). While I am not in a position to be involved in personnel matters until I arrive in August, I have contacted Charlie who said he was working on a solution. It has been a frenetic time for both of us, so I hope you can “hang in” for a few weeks while we complete the transition process and try to address all of the outstanding issues .

I look forward to working with you this coming year.

Sincerely,

David

June 11, 2012
Thank you David for your email; I really appreciate it.

June 10, 2012

Hi Beth,

I am working on your issue from a variety of approaches. I will try to get some closure by end of day tomorrow and will get back to you. Sorry it has taken so long.

Charlie

June 11, 2012
Thank you so much Charlie; I really appreciate it.

Wednesday, June 13, 2012
Hi Charlie,

Just checking in with you. I hope you were able to find a speedy resolution.
All the best,
Beth

Wednesday, June 13
Hi Beth,

Hope you are doing well.

I am still working on a resolution. The complexity is finding a way to support you that doesn’t leave the school in a bind with wage and hour laws. We have discussed your situation and we are looking for ways to help. Things are crazy right now with graduation, but I’ll follow up with the business office on Friday to see where we are.

Charlie

Wednesday, June 13

Thank you so much Charlie.

Monday, June 18

Hi Beth,

I hope you are feeling well and enjoying the San Francisco sunshine, even if it’s through the window.

We have been trying to find a way to have you feel appreciated and supported while staying on the right side of all wage and hour laws. I think we have found a way to do this by establishing a new policy which will go into effect next year, and we will make retroactively apply for you this past year as well. It does not give you the full amount you were hoping for, but it does recognize the unique situation you found yourself in this past year, while establishing a precedent that will benefit families for years to come.

Our new policy will state, (pending legal review of the language):

“As a Jewish day school that is committed to its core values of kindness in all interactions, we hereby establish a policy that supports our faculty and staff in a time of emotion or difficulty at the anniversary of the death of a loved one. We will permit any employee to take up to three paid days away from school on the one year anniversary of a loved one’s passing, (the Yahrzeit in Jewish tradition,) or the unveiling of the memorial for that person at the end of 11 months. This policy shall specifically apply to loss of child, parent, spouse or sibling. This policy applies to all employees, regardless of faith or religious tradition.”

Beth, this means that the school will give you three full paid days, added to your next paycheck, for three days you took off at the one-year anniversary of your son’s passing. Further, we will from now on give any and all faculty members in mourning – be they spouse, parent, sibling or child – the comfort of knowing that the school supports them in their time of sorrow.

I hope this gives you a sense of closure on this, and if not, do let me know.

Wishing you all the best,
Charlie

Monday, June 18
Charlie,
This is really great and I feel really proud that I could make this happen for others as well. Thank you for helping to make this happen. If baby girl arrives before you leave (hopefully within the next week), I hope you’ll come visit.
All the best,
Beth

Tagged

A Roller Coaster of Emotions

April 17, 2012

Hi Beth,
Thanks for letting us know about the unveiling. Rabbi Miller was amazing with Ethan’s service, I’m glad she is doing this.

I hope you are feeling well. I’ve been thinking about you a lot lately, as I am sure many of your friends do. Tonight especially. We took Ben to see Cho Cho Soul with Genevieve up in Santa Rosa tonight (awesome by the way) and we were standing in line to get autographs after the show and all the moms around us were all over baby Eli. One mom was talking about her oldest and how he climbed into his brothers crib and hit him with something and she was saying how she had no idea she had to even think about that. Anyway, after she told her story I asked how old her youngest was because I only saw the oldest (who was 6) and she said, “He would have been 3.” I held my breath for a second and then wondered if I had heard correctly. Then I saw a little sadness in her eyes, but I didn’t say anything. For the next 30 min or so we chatted, but the whole time I kept on thinking, “What would Beth have wanted someone to say?” So many sentiments fluttered around in my mind, but I just was unsure of what she’d want to here. I wanted to say I’m sorry, or let her hold Eli or something but I didn’t know how or if to even bring it up again. We had a nice conversation while waiting in line; I just wish I had the words when I needed them.

Anyway, we think of you all often and hope everything is going well. We are slowly adjusting to a family of four… although it is a challenge at times. :o) The last several months have been a whirlwind. I had gestational diabetes with Eli, so it was kind of a roller coaster pregnancy. I think Eli and I have been sick ever since we got home from the hospital too, but luckily we are on the mend. I’m back to teaching classes, but I’m really just doing it for Eli because Ben got so much out of it. I love teaching the new moms and helping them feel good in their bodies, but it’s hard when I get an intense mom who wants a bikini body like yesterday. I still think I want to teach PE when the boys get older. I just have to figure out how to make that happen. :o)

Is Evan doing summer camp at all? We haven’t signed Ben up yet, but were hoping to at JCC. We have been such slackers lately. Hopefully it’s not filled up yet.

Ok. I should go to bed. We love you guys.
xoxo
Kathy

April 26, 2012

Hi Kathy,
Sorry for the late reply. Things have been crazy here. I took on planning all the Jewish holidays by myself for the entire school because no one else was going to do it (the 8th grade with our Jewish Studies head is in Israel and the 7th grade went away on an outdoor ed trip). So I had to plan three Jewish holidays that occured over the last two weeks- what a pain! Anyways, they all went fabulously well and during all this Adam has been in Germany all week- so its been ridiculously exhausting trying to teach full time, programming in the evening and taking care of Evan alone and of course being 31 weeks pregnant.

Then when we found out Rabbi Miller couldn’t do it I was crying and after some cajoling emails telling her we’d do it anytime that day (as I didnt want to do it Mother’s day or my birthday or wait until June and the stone masons needed the month to get it made) she said she could do the afternoon- phew so hopefully people can still come. Now I’m on a mission to find a sitter for Evan- I’ll ask a teacher from the preschool.

Now that all these holidays are done the rest of the school year will be a breeze and I’ll just get everything organized for my subs for the first half of the year (I’ll return Jan 7th after winter break) and the subs are two ladies who are teachers in my school :)

Thank you for your email. I have my mom coming for all of June & July & my mother in law for August so it’ll be “Grandma camp” here- I’m gonna sign him up for parks and recs classes. Evan loves Choo Choo Soul- I’ll have to be more up on my kids’ concerts. I dont think I’m strong enough to see your baby especially a boy born in March with an “E” name- we were considering Eli- until our little girl is born, but we miss you guys and would love to hang out this summer.
xo,
beth

May 6, 2012

Hi Annabel,
Starting last Monday I started to get scared and decided I just want her to stay inside me and for time to stop. Which is the opposite of how I always felt before when I couldn’t wait for the birth and for her to be here. Now I just want to fast-forward until she’s 6 months old and everything is okay. Adam seems fine emotionally but maybe he’s being strong for me or maybe its because he doesn’t have all the hormones and the baby inside him constantly reminding him.

I have tons of energy during the school day and then after work I’m just beat – I use up whatever energy I have for Evan and by the time Adam gets home close to 6 he has two cranky “kids” on his hands. I’ve been so achy and tired and emotional. Much more achy then either pregnancy before and I don’t know if its because I’m older but as of last week I started getting really achy and uncomfortable and I feel like I should be 37 weeks the way I’m feeling and not 32 weeks. I’m definitely going to start going to the chiropractor every week now instead of every other week and that’ll help and I need to do some yoga stretches I know…I can’t wait until my mom arrives June 5th and I know I can always end school early if I need to. I plan to start preparing this week for the end of the year- report cards and organizing my files, writing up notes for my two subs and meeting with them.

I know I have to be better about eating every two hours in the afternoon and that’ll help but I find that I’m so tired and nothing appeals to me at the time of day and the last thing I want to do is stand in the kitchen and prepare something. Lately I’ve been trying to make things for the three of us and that helps as opposed to making something for Evan and then not wanting to make something separate for Adam and me. I really should make stuff on the weekends but I’ve been enjoying relaxing on the weekends.

We’re definitely going to give baby girl the same middle name as Ethan and have her name start with an E after him. Your emails always make me smile. School and Evan make the time pass quickly and I know before I know it I’ll have a beautiful baby girl in my arms that I can keep kissing and kissing who won’t say “enough kisses Momma” :)
xo,
beth

June 4, 2012

hey there,
Haven’t seen a post from you in awhile so just wanted to drop you a line and see how you are?
Hope everything is continuing to go well :)
-lori

June 4, 2012

You are too sweet. Doing pretty good. Finally took school off two weeks early- my body couldn’t take it. Today is my second day off and I feel like a different person. I finally have energy to do things and the house doesn’t look like it’s wrecked. Plus I’m pretty lucky my little guy still naps everyday (his last day was Thursday too) so that I can nap too. I’m getting super excited to meet baby girl and thats helping push down the nervousness right now. I’m already 36 weeks (so full term on Friday). I love reading your posts and finally feel like I have energy to post again now.
-beth

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My Thoughts From April & May:

I find myself returning to my old self. On the one hand this is good in a healing way but on the other hand I was disappointed in myself. I liked who I was better when the little things didn’t matter, when I knew what was important and kept it in the forefront of my mind. Now I find myself getting frustrated with Adam or Evan, allowing myself to get upset with them over stupid, little things.

I signed up at Baby Center to receive the weekly newsletter for our little girl. I was now feeling more secure since I was almost in the third trimester and I really wanted to know how she is developing.

I’m considering returning to Facebook but I’m unsure. I do miss knowing what my friends are up to. I guess if I returned, I would want a closer circle of friends, but that does not seem to be such an easy task.

One of the teachers at Evan’s preschool lost her son a couple of years ago. She pulled me aside to tell me “God knows who is strong”. Yet instead of finding this comforting, as I know it was intended, I found it upsetting. I wanted to shout “who cares about being strong?!”

I received the financial aid response from Evan’s preschool and was disappointed to find out I only received 10% off the tuition. Adam wanted to know if I thought I deserved more because my son died. To be honest, yes, yes I do. With all the anxiety I’m feeling during my current pregnancy, I thought it would be nice to not to have to be financially concerned and to feel I could take next year off to be with my baby girl.

Maureen, our school psychologist, who had been one of my greatest support systems at school has been absent in her help since she found out she herself is pregnant.  When I returned to school on March 19th (the day the bench was dedicated in memory of Ethan) she approached me in the hallway and said, “I just don’t understand how you can be here today??” Well thanks that helps me. Then the next day she showed up at my desk during one of my prep periods (while my class was in the room with a specialist) with tears in her eyes and said, “I’m just amazed that you can be here. How…are…you…doing?” “Fine,” I said and went back to my work. Really not helpful.

I found out about a colleague having lost her daughter years back. She told me that for some reason this year was particularly hard for her as her daughter’s yahrzeit (the anniversary of her death) was approaching. I am sure it is because of Ethan’s yahrzeit being this month. She even led her current students (my former students) in a little service for my Ethan at his yahrzeit. I cannot even imagine what it would be like for no one at work to know I had lost a child.

When I found out our mailman was changing routes, I was in tears. I love seeing how full of life and happiness he is nine years after the shocking loss of his five-year-old daughter (http://www.babysteps.com/adultshare/lost_child/226.html). Seeing his beaming smile, I’m reminded of my old self and how that can be me again too.

A couple of months ago when Evan had an eyelash on his cheek, I told him he could blow on it and make a wish. I said that my wish would be for him and baby girl to be happy and healthy always. Then, just yesterday, I saw he had another eyelash on his cheek. He blew on it and said “I wish me and baby girl will be healthy”. My eyes filled with tears. I can’t believe he remembered. He then asked Adam and me what our wish would be and we told him we have the same wish.

We had Ethan’s unveiling on May 21st. The weeks leading up to the unveiling were emotionally draining. It was so difficult to pick out a headstone. When I received the email to approve the headstone in the middle of school, I had to leave the building. Sitting on Ethan’s bench in the sunshine, watching the little kids play with my colleague’s hand in mine finally restored my sense of balance.

The unveiling was beautiful with all of our friends and family standing in a circle, holding hands around Ethan’s headstone.  All of the hugs we received and the rocks that were brought filled me with a warmth that radiated throughout my body.

As Adam and I were walking away after the unveiling, I kept turning around to see everyone behind us. I looked at Adam and said, “it feels so nice to know all of our friends are walking behind us” and he replied “honey, they’re always there” which filled me with love, comfort and happiness.

Tagged

My Partner in Life

My friend Mirabelle asked me yesterday if I had read Ayelet Waldman’s article in the New York Times “Truly, Madly, Guiltily”. She wondered what my reaction was to her statement of loving her husband more than children. The following is an excerpt from her article:

Yes, I have four children. Four children with whom I spend a good part of every day: bathing them, combing their hair, sitting with them while they do their homework, holding them while they weep their tragic tears. But I’m not in love with any of them. I am in love with my husband.

It is his face that inspires in me paroxysms of infatuated devotion. If a good mother is one who loves her child more than anyone else in the world, I am not a good mother. I am in fact a bad mother. I love my husband more than I love my children.

As I pondered this question, I thought back on my past year. I do not believe that I love my husband more than my children, but I do know this, I know that I would not have survived this past year without the support of my husband. He is my partner through life’s joys and its hardships.

Whether he was the strong one or he was the weak one, knowing that through it all we were experiencing similar thoughts and feelings made the indescribable pain a little easier to bear.

When I had terrifying nightmares each night and was afraid to go to sleep, knowing he was beside me and that I could wake him up at any moment allowed me to sleep.

When I was totally irrational and I was sure that Evan had died in his sleep because either I could not hear him breathing through the monitor or I was sure that the bang I heard was something that crashed down on his head, Adam would tell me that he is okay and to go in and check on him. Adam would remind me that it would not matter if I woke Evan up by checking on him, as long as I could reassure myself that he was okay.

Writing a eulogy for my baby boy, attending his funeral, carrying his casket- these were things that I know I could only do because Adam was there beside me making me stronger.

When Evan was in the emergency room and the doctors said it was a good thing we brought him right in and that it was serious, I actually looked at Adam and said I cannot continue to live if something happened to my Evan too. And there he was holding my hand being strong for me until we knew Evan was going to be okay.

For most of the past year I felt as though I was adrift at sea amidst the storms, holding on for dear life to a piece of driftwood. In those times of darkness, Evan would be the sunshine that would calm the sea around me, but it was Adam who would be the island that would enable me to stand sure footed again.

Now together we are designing Ethan’s headstone – choosing if it is to be upright or a marker, granite or marble, the color of granite or marble, what it will say, what font, what images- and we are going in to meet with the people who are going to craft it. How could I possibly have the strength to do this without Adam beside me?

Even at my school when they dedicated the lemon tree in memory of Ethan and later the bench in his memory- leaning against Adam, holding one another, I knew I’d be okay.

I had planned so many times to go visit Ethan’s gravesite, I am constantly collecting rocks to bring*, but I could not bring myself to go without Adam.

How could I have survived loosing Adam without someone there who could truly know exactly what I was going through? Our friends and family have been a great support system, but they do not truly understand- and I hope they never do.

 

*It is a Jewish custom, before leaving the gravesite, to place a small stone on the marker to indicate that someone has visited the grave.

Find Ayelet Waldman’s entire article here.

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A Beautiful, New Gift

Guardian

Guardian

Love and protect thee, forever

Guardian represents the overwhelming feelings of motherhood, and the desire to protect your new baby forever. The image of an infant cradled closely in her mother’s arms is a symbol of the tremendous feelings of love a mother experiences when holding her new child. This figure could suggest a guardian spirit of protection. She could also be comforting to someone who has lost a child; a reminder of the love and caring a mother always feels, regardless of where her child is. I used the word ‘thee’ in the sentiment as an intimate way of talking to an infant. I think the word has a poetic sound and shows reverence and tenderness. It’s the sort of word reserved for someone you love.

Susan Lordi

You can find Lyndell at gettingitsorted: Life after loss and the steps to remain sane. Lyndell is also a bereaved parent who is now pregnant with her subsequent child, bonsai.

You can find Susan’s Willow Tree® sculptures here. Susan Lordi hand carves each original Willow Tree® sculpture. Pieces are cast from her original carving, and then individually painted by hand.

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Registry:

I decided to create a small registry for our baby girl. I knew I did not want to use anything that we had used with Ethan so one of the items I registered for is a new infant bath; but this one is different- this one is pink.

We coslept with Evan and Ethan; Evan until he was six months old and Ethan for all of his life. But now after being exposed to so many awful stories, Adam and I have decided to register for a co-sleeper.

I had been excited when I found out about the Snuza Halo Baby Movement Monitor. After some research, I planned to use it until our little girl began to roll around and then to use the pad monitor Angelcare Baby Movement and Sound Monitor. However, after consulting with my sister she explained to me that the AAP has found that these monitors not only had no effect on preventing SIDS, but in fact had a negative impact. The study found that because of the repeated alerts parents at first could not sleep and were overly stressed and eventually they began to ignore the alerts.

My sister liked the idea of the vibrating stimulus to rouse baby after eleven seconds but she did not like that the alarm could not be shut off so I removed both of the items from the registry. She then sent me another article from the AAP (quoted below) which recommends pacifier use. So while neither of our boys took a pacifier, we now plan to introduce the pacifier to our baby girl and those have been added to the registry.

 
Pediatrics Vol. 128 No. 5 November 1, 2011
From the American Academy of Pediatrics:  Technical Report
SIDS and Other Sleep-Related Infant Deaths: Expansion of Recommendations for a Safe Infant Sleeping Environment
Task Force on Sudden Infant Death Syndrome
 
Abstract
Despite a major decrease in the incidence of sudden infant death syndrome (SIDS) since the American Academy of Pediatrics (AAP) released its recommendation in 1992 that infants be placed for sleep in a nonprone position, this decline has plateaued in recent years. Concurrently, other causes of sudden unexpected infant death occurring during sleep (sleep-related deaths), including suffocation, asphyxia, and entrapment, and ill-defined or unspecified causes of death have increased in incidence, particularly since the AAP published its last statement on SIDS in 2005. It has become increasingly important to address these other causes of sleep-related infant death. Many of the modifiable and nonmodifiable risk factors for SIDS and suffocation are strikingly similar. The AAP, therefore, is expanding its recommendations from being only SIDS-focused to focusing on a safe sleep environment that can reduce the risk of all sleep-related infant deaths including SIDS. The recommendations described in this report include supine positioning, use of a firm sleep surface, breastfeeding, room-sharing without bed-sharing, routine immunization, consideration of a pacifier, and avoidance of soft bedding, overheating, and exposure to tobacco smoke, alcohol, and illicit drugs. The rationale for these recommendations is discussed in detail in this technical report. The recommendations are published in the accompanying “Policy Statement—Sudden Infant Death Syndrome and Other Sleep-Related Infant Deaths: Expansion of Recommendations for a Safe Infant Sleeping Environment,” which is included in this issue (www.pediatrics.org/cgi/doi/10.1542/peds.2011-2220).
 
The following are the major points of the article:
  • The Supine Sleep Position Is Recommended for Infants to Reduce the Risk of SIDS; Side Sleeping Is Not Safe and Is Not Advised
  • Preterm Infants Should Be Placed Supine as Soon as Possible
  • Newborn Infants Should Be Placed Supine Within the First Few Hours After Birth
  • Once an Infant Can Roll From the Supine to Prone and From the Prone to Supine Position, the Infant Can Be Allowed to Remain in the Sleep Position That He or She Assumes
  • Supervised, Awake Tummy Time on a Daily Basis Can Promote Motor Development and Minimize the Risk of Positional Plagiocephaly
  • Infants Should Sleep in a Safety-Approved Crib, Portable Crib, Play Yard, or Bassinet
  • Car Seats and Other Sitting Devices Are not Recommended for Routine Sleep at Home or in the Hospital, Particularly for Young Infants
  • Room-Sharing Without Bed-Sharing Is Recommended
  • There Is Insufficient Evidence to Recommend Any Bed-Sharing Situation in the Hospital or at Home as Safe; Devices Promoted to Make Bed-Sharing “Safe” Are Not Recommended
  • It Is Prudent to Provide Separate Sleep Areas and Avoid Cobedding for Twins and Higher-Order Multiples in the Hospital and at Home
  • Pillows, Quilts, Comforters, Sheepskins, and Other Soft Surfaces Are Hazardous When Placed Under the Infant or Loose in the Sleep Environment
  • Wedges and Positioning Devices Are not Recommended
  • Bumper Pads and Similar Products Are not Recommended
  • Avoid Overheating and Head Covering in Infants
  • If a Breastfeeding Mother Brings the Infant Into the Adult Bed for Nursing, the Infant Should Be Returned to a Separate Sleep Surface When the Mother Is Ready for Sleep
Consider Offering a Pacifier at Nap Time And Bedtime
Several studies have found a protective effect of pacifiers on the incidence of SIDS, particularly when used at the time of last sleep. Two meta-analyses revealed that pacifier use decreased the risk of SIDS by 50% to 60%. Two later studies not included in these meta-analyses reported equivalent or even larger protective associations. The mechanism for this apparent strong protective effect is still unclear, but lowered arousal thresholds, favorable modification of autonomic control during sleep, and maintaining airway patency during sleep have been proposed. It is common for the pacifier to fall from the mouth soon after the infant falls asleep; even so, the protective effect persists throughout that sleep period. Two studies have shown that pacifier use is most protective when used for all sleep periods. However, these studies also showed increased risk of SIDS when the pacifier was usually used but not used the last time the infant was placed for sleep; the significance of these findings is yet unclear.
 
There Is no Evidence That Apparent Life-Threatening Events Are Precursors to SIDS, and Infant Home Monitors Should Not Be Used as a Strategy for Preventing SIDS
For many years it was believed that apparent life-threatening events were the predecessors of SIDS, and home apnea monitors were used as a strategy for preventing SIDS. However, there is no evidence that home monitors are effective for this purpose. The task force concurs with the AAP Committee on Fetus and Newborn, which has recommended that infant home monitoring not be used as a strategy to prevent SIDS, although it can be useful for some infants who have had an apparent life-threatening event.
 
Find the entire article here: http://pediatrics.aappublications.org/content/128/5/e1341.full#sec-1
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Beautiful Blossoms:

This is the beautiful tree my mom and step dad planted in memory of Ethan last May. It’s so nice to see it in bloom; the red petals remind me of Ethan’s beautiful strawberry blond hair.

I find myself taking the time to truly appreciate the nature around me- the beautiful flowers in bloom, a little bird perched on a branch. I am much more aware and appreciative of my surroundings.

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Planning for the Future:

Planning for the future has been challenging. It almost feels like tempting fate. And yet I have come to understand that for my sake and my family’s sake I do need to continue to plan for the future.

It’s amazing to me how much I used to take for granted. If you are pregnant, you are going to have a baby. If you have a baby, he will be with you forever. Although these are no longer givens in my world, I need to continue to live- to prepare Evan for the arrival of his baby sister. It is a hard balance feeling excited and yet wanting to protect myself.

We found out that Ethan’s metabolic disease was a random mutation; it was not genetic and that is what has truly given me hope that my baby girl is going to be okay. I am lucky enough to have a sister who is a pediatrician who has dedicated almost every free minute of the past year to find out why Ethan died. She went to one of the top ten geneticists in the country who was able to indubitably conclude from Ethan’s autopsy report that it was not genetic.

I was asked in January to fill in an intention form for the next school year so I decided that I would ask for a meeting with my head of school and human resources to find out my options. While it was a very informative meeting, it was a very emotional meeting. I learned that if everything is okay with my baby girl, I do not have to return to school until November 12th. However, the school believes that it will be easier for them to find a substitute for an entire semester and therefore, if that is the case, I will be allowed return on January 7th.

Then I began to think about Evan and being able to pay for his preschool if I am not working half of the year.

January 11, 2012

Hi Patricia,

My name is Beth Galanté. I am a teacher at the Jewish Day School and this is my son’s second year at the preschool (Evan). I am sure that you heard from Jane and I remember receiving a card from you that my son (Ethan) died suddenly eleven days after he was born last March. The preschool community has been very supportive. We just received the autopsy report last week; the Medical Examiner had to close the case as she has never spent so long on an autopsy. She knows Ethan died due to natural causes and believes it was a metabolic disorder though she could not pinpoint which one.

I am now pregnant again and due the end of June. Of course we are cautiously guarded and very nervous especially since my pregnancy with Ethan, his birth and their check up of him were all perfect. My wish would be to spend next year at home if everything is okay with our baby. Unfortunately we cannot afford to send Evan to school if I were to stay home. My school is asking for my intention form on Friday for the next school year and I wanted to meet with Jane beforehand to hear about scholarship opportunities. Monday she was very busy and not feeling well and then she was out sick yesterday. I will hopefully be able to meet with her today or tomorrow, but I wanted to reach out to you as well as you are the head of all of the preschools. Please let me know what you think my next steps should be and if you’d like set up a meeting to discuss it in person.

All the best,
Beth Galanté

January 12, 2012

Hi Beth and Adam,

Thanks for your email.  Your next step would be for you to complete a financial aid application for the next school year, once you have received your contract; contracts will be sent out mid-February.  Awards are made based on need by analyzing all of the information on the financial aid application, which is due on March 26, 2012.  You will be able to access the application online in the next few weeks.  Our financial aid committee meets in April to make the awards.  Parents are then notified of their award in April as well.

Best,
Patricia

January 12, 2012

Hi Patricia,

Thank you for your email. I spoke to Jane today and learned she does not have a role in this process, but she is happy to write a letter on our behalf.

I totally understand that you are running a business; I just had hoped as a Jewish organization who has been a part of our lives over the couple of years, you could give me a little more reassurance, understanding what a nerve wracking time this is for us.

I will definitely fill out the forms in February after I receive the contract.

I appreciate all of your support.

Best,
Beth

No response was received.

The following is the cover letter I submitted with the financial aid application:

My name is Beth Galanté. I am a teacher at the Jewish Day School and this is my son’s second year at the preschool. Evan’s little brother, our second son Ethan, died suddenly eleven days after he was born last March.

My favorite part of each day is watching Evan play at recess. My school has dedicated a bench in memory of Ethan and I asked that it be the bench that faces the preschool playground so that I can sit on the bench while I watch Evan play.

I am now pregnant with a baby girl who is due at the end of June. Of course we are cautiously guarded and very nervous especially since my pregnancy with Ethan, his birth and his check up were all perfect. My wish would be to spend next year at home if everything is okay with our baby girl. Unfortunately we cannot afford to send Evan to school if I were to stay home.

Although it almost feels like tempting fate to now plan for the future, I know that for the good of my family I need to believe that everything will be okay with our baby girl. Therefore I am writing to ask for your support in helping me to be able to stay home with our future daughter. Thank you for your consideration. I really appreciate it.

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