Sunday Synopsis

The Stone– A beautiful description of how grief evolves over time.  It’s there, never leaves, sometimes is heavier and more noticeable, sometimes just simply carrying on beside you.

Thomas Gray lived six days, but his life had lasting impact– wow wow wow.  I wish I had thought of donating organs to research for Mabel.  I had thought a little about donating her organs, but I wondered whether they would be useful due to her Down Syndrome.  Some organs were clearly not donatable- her kidneys were damaged, her lungs so small, her heart formed imperfectly.  But her corneas were likely fine.  Other organs maybe.  I might not have wanted to go through rejection of her organs for donation, but I never thought of donating for research.  Many props to Thomas Gray’s mom who not only thought about and did this for her son, but also is telling the world about it- spreading his legacy and giving options to those pregnant with babies with life limiting conditions.

Meet the very cute baby who was born without a nose– Love the positive image this post promotes about a child with a birth defect, one that makes him look different.

Baby Girl Memorial Scrapbook– Love this babyloss focused scrap book.  A way to give us a chance to make something for our babies without the pain of sorting through all the living children memorabilia

When grief becomes a disorder– I mull over this in my mind a lot- where do you draw the line at complicated grief? When someone is grieving too long or too much? We are constantly affirmed that no one can tell us how to grieve, but I feel like, here they are.  At the same time, I also believe some people could benefit from medication.  Not everyone, of course.  And I don’t think that we should medicate all grief- make people happy and forget about their loss.  But thats not what most medications do.  As someone who has benefitted from medication (but also has had a pre-existing anxiety disorder), I think meds helped me in some ways and also delayed some of my grieving process in others.  Is grief a disorder? yes and no.  It requires attention and care like other disorders, but there is no fixing it either.

Mabel’s First Birthday

One year ago today was the saddest day of my life. The day also brought joy- the birth of my first child, long awaited and very wanted- but that joy was overshadowed in the hours following her birth. I went from utter amazement that I had a baby and despite the odds stacked against her, she cried. She might live, I thought. My excitement lasted minutes, until Chris updated me from the NICU. Her lungs were too small. She would die. As I raced to wrap my mind around this outcome, known as a possibility for months, her condition deteriorated in the hours that lay ahead. The days I thought I had with her melted into just a few hours as the vent and oxygen failed to sustain her tiny body. We took away that pain, removing her from life support, after just six and a half hours of life. The warm solid baby that lay on my chest became heavy and cool, her skin turning from a light pink to a mottled purple, her lips deepening to a dark red. I held her until I could hold her no more and gave her up for the final time.

One year ago today my daughter was born. Today is her birthday. But today is her death day.

In my early days of grief, I envisioned such a different day. I would plan a birthday party- a large, kiddie birthday party, with hats, and cake and balloons. I would invite everyone who I would have had she lived and ask them to bring books to donate to a needy school or library in the area. I would write Mabel’s name in each of the books, so she would live on when others read her name. It would be a celebration of her life. I was inspired reading about another mother’s celebration of her baby taken too soon.

Holding that birthday party is part of that ideal grieving woman I often aspire to be, but feel like I fall so short of.

But I can’t have that birthday part for Mabel. I’m just too sad.

I’m sad that it’s even a decision I have to make- how to celebrate my dead baby’s birthday and death day. I’m sad that my baby died. I’m sad she suffered. I’m sad that I have suffered. I’m sad that I’m not where I thought I’d be in my grief at one year. I’m sad that she’s not here. I’m just so so sad.

No big party today for Mabel. No party hats. No book collection.

Today I plan to hide under the covers. I know I have so many people in my life who are supportive and thoughtful (many of whom have already graciously reached out) and their support is welcome. Today, though, I plan to turn off my phone and hide from social media and just be sad. It’s too overwhelming to be gracious and sad at the same time on this day.

As the day approached and I recognized I wouldn’t be making my dream birthday party happen for her, I made an alternative plan. I couldn’t face an in person celebration, but I wanted her recognized so I invited friends and families to a virtual one. I sent these invites out earlier in the week:

FullSizeRender (16)FullSizeRender (15)

In memory of our daughter on her first birthday we invite you to join us in doing a Random Act of Kindness.  Enclosed you’ll find a small notecard that you can leave behind, if you choose, when doing your Act of Kindness.

We would love to know what you do in memory of Mabel.  Please feel free to email us or post on social media.

FullSizeRender (18)

Feel free to join us in Mabel’ virtual birthday party. Or you could simply learn more about her here:

Happy Birthday, baby. I love you. I miss you. I wish you were here.

The anger-sadness balance

On New Year’s day I sat on my couch, scrolling through my old facebook posts. I was looking for my New Years post from the previous year as a comparison to how I felt this year. A year ago I thought I had been through the biggest rollercoaster of my life- finding out I was pregnant, learning about Mabel’s Down Syndrome, embracing and preparing to raise a child with special needs and then learning my baby’s birth defects might not be compatible with life. It was, at the time, the worst year of my life. I was unsure how 2014 would turn out and low and behold it turned out to be worse. Some beautiful moments- the birth of my daughter followed by the darkest, her death and the grieving that came with.

In my scrolling, I came up across the posting about her birth and death. In reading the words I had written and gazing at the photos above them, I was struck by sadness. I couldn’t believe that it all had actually happened. That I actually had a baby. That she actually lived. That there was a moment when she had been placed, warm and goopy on my belly just seconds after birth. That she lay quite still on a warmer, struggling to breathe despite numerous tubes and interventions. That we actually had to tell the doctors that we were ready- ready to let her die. That she actually died. That we actually buried her.

Tears ran down my cheeks. Wanting to really let myself really feel the sadness, I then pulled up the video I had made:

I cried and I cried. I also cried because I realized how long it had been since I cried like that. I have just been so angry, there hasn’t been any room in me for sad. I know more sad is needed, but I can’t seem to force it. So how do I do it? How do I balance anger and sadness? How do you?

Sunday Synopsis

10 types of disenfranchised grief– though the list addresses miscarriage and abortion, I’m going to argue that babyloss in general should be counted.  Though, in a weird way, I consider myself “lucky” in the babyloss world (hah!), because my daughter technically lived for 6 hours and thus gets some recognition for life, I also feel disenfranchised because few people met her, so she wasn’t real to them. Plus she had birth defects, and I constantly worry that people think she was worth less because of them.  And then there are those who lost babies to stillbirth- the same kind of disenfranchised grief.  And those whose babies lived only inthe NICU.  When it comes down to it, people listen easily when people talking of their parents,  or grandparents dying, but nobody likes to hear about a dead baby.

64 things about grief– do you agree? anything else you’d add to the list?

Grief Gifts Guide– What do you think?  Did you get any gifts like these for the holidays?  Did you get anything else that you would add to the list?

Confessions of a burnt out physician– Though this might not resonate with those non-providers out there, I hope it can help bring some understanding.  I do love so many aspects of my job, but the intense timing of it is not one of them. I’m given 15 minutes to see patients- whether it’s a simple fetal heart rate check or discuss their recent miscarriage.  It’s not a lot of time.  It does force me to put up some barriers and boundaries, which is not how I envisioned practicing when I enrolled in midwifery school.  ah, reality.  I also post this because I know many of you have had difficult experiences with your providers.  This is not an excuse for bad behavior, but perhaps can provide insight into the pressures at work.  I remember a patient being ticked about waiting 45 min for her routine prenatal.  I wanted to tell her, “I’m sorry I’m running late,  but I just spent all that time talking to the patient before you who is carrying a baby that is going to die.” I couldn’t and didn’t, so I simply apologized.  Sometimes the stress of closely packed patients can make some providers even leave the profession.

Experiences which expanded my empathy  I find babyloss has certainly expanded my empathy in many ways.  I am much more sensitive to loss in general, especially at work.   Though, sadly, I also find some situations harder to find empathy as well.  You?

I am not the bad guy

I have a confession. I was not the perfect pregnant woman. Every few weeks I had a glass of wine. I snuck some raw cookie dough and licked the cake batter bowl. I ate too much sugar and not enough vegetables. Many of my babyloss counterparts say “I did everything right” and I often have chimed in, though I know I did a few things that others might have looked down on me for. But none of these things killed my baby. A faulty chromosome was really her downfall- something that is usually quite livable, but in her case leading to a cascading effect of fatal birth defects.

So when I hear people doing some counter culture things in pregnancy (crossfit? An occasional glass of wine? Medication with potential effects on the baby?), I have always been rather understanding, even now in my grief. But I draw the line.

Arguing with me about how marijuana should be allowable for pregnant women doesn’t change the fact that it’s still illegal here. My job requires that I protect your health and your baby’s health. If you are unhappy with the law, take it up with your state legislature, not with me.

I could go on about how people who smoke marijuana often use other drugs, about how unregulated marijuana could be laced with other harmful substances, how people who make poor decisions regarding drugs are more likely to participate in other risky behaviors.

I am not the bad guy.

Being pregnant is a privilege and an opportunity to better oneself. I was told my baby was likely going to die and I still recognized that. I asked advice of my providers and listened. I wish others would do the same.

Do you have any confessions? What do you get mad at seeing other pregnant woman doing?

A tattoo is worth a thousand words

“Do you always take so many pictures?” Her question didn’t have any judgment in it. It was the kind said to get conversation flowing. While seated on the cushioned table, a sort of hybrid between the kind in a doctor’s office and the ones in a massage studio, I sat with my left foot splayed out and my phone in hand documenting each part of the tattoo process.

She knew a little bit of our story. Chris and I had come three months before to discuss getting matching tattoos for Mabel. We brought some inspiration with us and I thought it was important for her to know the meaning behind the tattoos. “We had a baby in February and she died shortly after birth, “ I told her then. “We used to call her the Karate Carrot, when I was pregnant with her, so that’s why we want a carrot tattoo.”

Now, seated in the studio, I hammed it up for the camera, instructing Chris on which angles I wanted and then grabbed the phone from him so I could see and take some of my own.   Chris rolled his eyes and shook his head while keeping a little smile on his face, in that way he does that lets me know that he thinks I’m silly but that my silliness is endearing too. So when she asked if I always take a lot of pictures, I felt a need to explain.

Of the two of us, Chris rarely takes photos. I’m usually the one making him smile and telling him “Now take one of me, like this!” as I posed in some ridiculous way in front of a landmark. We have a nicer camera, but it’s an effort to remember it and when I want to document the more mundane moments of everyday living, I usually grab what I have- my cell phone. The only exception to this habit was this past year, when I shied away from the camera.

“We found out our daughter had Down Syndrome when I was 13 weeks pregnant,” I told the tattoo artist. “And there is a high chance of stillbirth with Down Syndrome, so in the beginning I didn’t take a lot of photos because I thought if I lost the pregnancy, the photos might make me sad. Then later we found out she had some birth defects and the doctors had no idea whether she’d live or not. We wouldn’t know until she was born. So my reluctance to take photos got worse. But now that we’ve been through it, now that we’ve lost her, I am so sad I don’t have more photos of me pregnant. They were part of her story. So now whenever I do anything related to her, I try to take lots of photos to make up for it.”

She nodded in understanding, as she dipped her ink needles, changing the color from green to orange. There was no pause in the conversation, no awkward “I’m sorry”s, no weak platitudes. A simple nod of understanding as she went on creating the life long tribute to my daughter on my ankle.

***

I chose my ankle because I wanted something I could easily show or hide, depending on the circumstance.  It’s also by the foot, reminding me of Mabel’s clubbed feet.  Chris chose the side of his chest, where the kidneys meet the lungs, reminding him of the organs that made her existence so short, but so special.

Do you carry anything with you to remind you of your baby or one that you’ve lost?  If you were to get a tattoo (or if you have one) what would you do to symbolize your little one?

The studio had much to keep us entertained.

The studio had much to keep us entertained.

Some of the decor in the studio

Some of the decor in the studio

Some of the decor in the studio

Some of the decor in the studio

Some of the decor in the studio

Some of the decor in the studio

The design.  The top images were inspirations we brought in, including a carved a carrot given to us by friends and a temporary tattoo chris gave me for mother's day.

The design. The top images were inspirations we brought in, including a carved a carrot given to us by friends and a temporary tattoo chris gave me for mother’s day.

Before

Before. Please disregard the bug bites.

transposing the image

transposing the image

Deciding whether I like the placement

Deciding whether I like the placement

IMG_4225

It kinda hurts!

It kinda hurts!

such a ham!

such a ham!

Chris's turn next

Chris’s turn next

Needlework

Needlework

IMG_4258

Showing off the new tat

Showing off the new tat

Finished!

Finished!

Finished!

Finished!

 

How’s your son?

“How’s your son?” I asked her over the phone, after I answered her questions.

“He’s good!”

“He was diagnosed with Down Syndrome, right?”  I remember seeing her postpartum, standing by the warmer in the NICU.  She had declined prenatal testing because it wouldn’t have changed how she felt about the pregnancy.  When her baby was born, the pediatricians thought he had several characteristics of a baby with Down Syndrome, so he was in the NICU for evaluation.  She was a bit unbelieving at first, not ready to fully accept the diagnosis until the test results were in.  I knew they’d both be fine.  She came from a lovely extended family that took care of each other.  That baby was lucky, I had thought.  No one rejoices at the diagnosis of Down Syndrome, but I knew that baby was going to be loved on so much.

“Yeah…”

“Did you know, I had a baby with Down Syndrome?  She didn’t make it though.”  I was able to say the words easily.

“Oh no! I’m so sorry!  You were able to make it to term?”

“Yeah- thirty-six weeks.  She was born in February.”

“Oh no, what happened?”

I explained that we knew she had Down Syndrome since 13 weeks but continued on.  I told her about the kidney problems and the low fluid making her lungs underdeveloped.  Ultimately she died because her lungs were too small.  She told me how sorry she was and that she’d pray for me.  She marveled at how she felt like she’s hearing about so many more people having babies with Down Syndrome. I told her I thought a lot about her and her son throughout my pregnancy.  The emotions I had in the beginning- grieving the diagnosis at first- and then the preparations I did.  I told her how amazed I was that she did all that while having a brand new baby.

“How is your son?” I asked, knowing that 50% of children with Down Syndrome have heart defects and many have other birth defects and later health problems.

“He’s good! He’s got nothing major- just low muscle tone. He’s teaching himself to crawl,” she described her one year-old’s slightly delayed progress.

I asked who her pediatrician was. “Is he in Birth to Three?” referring to the early childhood support program in our state.

“Yup!  They have therapists that go to the day care and to the home.”

I told her about the Down Syndrome Comprehensive Clinic, and she took the information eagerly.  I told her I was glad her son was doing so well.  She thanked me and said she’d be keeping me in her prayers.

I felt good about it all.  We shared something special.  I wish I could have been the woman on the other end of the phone- the one whose baby lived- but I nonetheless felt good.