Saturday, November 17, 2012

Home

It's been awhile.  A really, really long time since I've written anything here.

No, we still don't have a rainbow baby.

It is a long and painful story I won't go into in detail.  Suffice to say, believe it or not, things can actually get worse than having your baby die: You can lose your beloved baby and struggle to have another one.

Oddly, you eventually come to terms with the fact that your path is a difficult one.  Things that come easily and naturally (sometimes quite by accident) to others are not within your grasp at the moment. For whatever reason, you maintain a flicker of hope that things will turn out the way you hope and pray they will.

Or maybe they won't.  That is the truth of the matter, as much as no one wants to admit it.

Meanwhile, you carry on.  You learn to smile and laugh in spite of everything.  You live the life you have been given and try to find the joy in it.

You make this journey your own and make this place your home.



Friday, June 15, 2012

Quiet

I've been quiet here lately. I haven't been able to bring myself to post anything in more than a month. I don't want to be a Debbie-downer in the babyloss blogosphere. I realize that is something of an oxymoron, and of course, there are many heart-wrenching, painful, depressing posts out there.

But really, there are a handful of general classifications of people who read these blogs: 1) the newly bereaved mothers 2) mothers who are some months beyond their loss and looking to the future 3) the babyloss mothers who are either pregnant or have just given birth to their rainbow babies 4) friends, family, other supporters 5) a very small group of assorted individuals who are interested in babyloss for other reasons (hopefully legitimate!)

Groups 1 - 3, and there is some crossover here, constitute the majority of the babyloss blogosphere readership. Basically, none of them would want to think about, let alone hear about, all that I have been experiencing lately. It is simply too discouraging and depressing. It's hard to understand how people with a dead baby can be further disillusioned, but they can. It's because, after some period of suffering their loss, they regain hope that their lives will become less painful and that they will have a sense of joy again. So, they don't like to hear about situations where a babyloss mother just keeps getting the beatdown. Again and again.

The fact is, I am now 18 months out from the worst day of my life. For unknown reasons, it took a very long time and extraordinary efforts for me to conceive again. Only to suffer another early loss. No idea why. It is every babyloss mother's worst nightmare. That is, the nightmare after the original nightmare. And it happens to be my real life.

It is particularly difficult to stomach the probing questions from well-intentioned friends and acquaintances. They SO want to hear good news from me. Some of them genuinely care about what I have been going through and are getting what I call "empathy fatigue." It is very difficult to continue being positive and supportive with a friend who has been facing extreme difficulties for a prolonged time. Then there are those who don't actually care about me specifically, but want to hear good news of some sort of turn-around of events because it bothers them to know that life can be so cruel. They need reassurance that something so awful won't happen to them, too.

While I don't want to get into a lot of details about what has been going on, I felt I should give a brief and honest statement as to why I have very little to say at the moment.

Saturday, May 5, 2012

International Bereaved Mother's Day

To all of my Babyloss Mother friends, I hope that you May 6th will be a day of peace and remembrance for you. How much has changed in a year since my first Bereaved Mother's Day. For those who may be here for the first time, please know that the first milestones are the most difficult. You will survive. Surround yourself with those who want to understand what you are going through. This beautiful flower is a gift from Carly Marie at ProjectHeal. http://carlymarieprojectheal.com/2012/02/international-bereaved-mothers-day.html

Sunday, April 15, 2012

Diversions

When we are in a place of darkness and despair, sometimes we need to look around to find inspirations for joy and appreciate what is beautiful in this life.

Last night I attended a Chris Botti performance. It was spectacular overall, and at times breathtaking. Here is one song they performed that was really fun and uplifting. We all need a little levity!

Thursday, April 12, 2012

Science and life

I recently found a card for Adrian's birthday which had a beautiful saying, attributed to Albert Einstein.
"There are only two ways to live your life. One is that nothing is a miracle, the other is that everything is a miracle."


I have an interest in the physics of the cosmos. The only problem is, it's so darn confusing. Difficult to imagine. Hard to wrap you head around. Reading that sort of material is pretty heavy (pun intended). Fortunately, there are some fairly well-done nerdy scientific programs that attempt to discuss the science of space and time, such as the miniseries I was watching today, "How the Universe Works."

I remember becoming more intrigued by the nature of the universe and outer space sometime last year. I heard about things like parallel universes and wondered if they existed. I believe that many people facing an intense personal crisis are led to the inevitable questions of, "what does it all mean?" and "does anything really matter?" This is true even for people of faith. There are those who resist science principles in the name of faith, but for myself and many (if not most) others highly educated in the sciences, these truths actually serve to reinforce belief in a higher power or force, if you will. At a minimum, the existence of another dimension that we don't yet understand and a purposeful design that we cannot explain.

Meanwhile, while we're hanging out here on this rock, miracles abound, if you choose to appreciate them. Sure my baby died, but what a miracle that she was conceived. By the most amazing and intricate process, her unique DNA (created from our DNA) created a tiny being, unlike any other. How miraculous that my body carried and nourished her little soul for her whole life here on earth. Even in the context of loss and terrible pain, I can appreciate the miracle that was my Angeline.

Zooming way out, into the cosmos, thinking about expansion of the universe (the Big Bang versus other competing theories), black holes, worm holes, supernovas, antimatter, the singular theory of matter... By comparison, this planet seems so small, our understanding so limited, humans so powerless. When you really think about the tremendous and powerful forces at play in the universe, you must let go of any delusions of control you may still have. When you realize that there are nomadic black holes out there (millions of them) that could come and suck up our solar system without warning, you have a different perspective of your own personal life. But now, somehow even death seems less threatening, knowing my baby girl has gone before me, how can I be fearful?

Oddly enough, contemplating astrophysics made me think of a meditation I had been listening to recently. (Check out Meditation Oasis on iTunes). The meditation encouraged us to be still in the present moment, not to will one thing or another, or to resist things being the way they are, but rather to exist in the present time peacefully, believing that we are exactly where we are meant to be. Given the incredible unlikeliness that any one of us is here at all, I would have to agree. It is probably true that each of us is exactly where we are meant to be, whether by means of destiny or God or the forces of the universe. As much pain as we may feel at a particular time, we can choose to focus on the miracles and find joy in every day.

Thursday, March 29, 2012

Another mother

There are some positive and hope-inspiring things happening in my life right now, but tonight my heart is heavy, as I have witnessed the pain and grief of another mother joining our forlorn ranks.

It was emotionally difficult for me to hear the details of her unborn baby's condition a short while back, knowing that it would likely not be long until she would joining our unhappy club. She and her doctors took heroic measures to save her sweet baby. Sadly, not enough could be done.

I was so glad to hear that this brave young mother had held her precious son and loved his earthly body, even after he had gone to heaven. She says he was perfect and beautiful. I know that she will eventually cherish the memories of those moments. She gave her baby a name, so that we can all acknowledge his identity and his personhood. This baby has touched many lives, even as he has passed away from us. I hope that she had some comfort from the few thoughts I was able to share with her even as she faced her worst nightmare. I remember being there, in that horrible place, like it was yesterday. Yet at the same time, I am a fundamentally different person than I was when I started on this difficult path.

This beloved baby reminds us that there is no footprint too small.


(Now I Lay Me Down To Sleep - http://www.nowilaymedowntosleep.org/)

Saturday, March 10, 2012

March of Dimes

Earlier this week, I had the privilege of attending the March of Dimes 12th Annual Conference for Health Professionals. The conference was entitled, "Trends and Tribulations: Implications for Perinatal Care." The lectures were on a wide range of topics addressing congenital birth defects, research on the causes of preterm birth and maternal mortality (saving the lives of mothers). I was most interested in a lecture discussing universal newborn screening for congenital heart disease, as well as a lecture regarding research on genetic causes of congenital heart disease. Having been to quite a few conferences, I can say with some authority that this was an excellent educational event sponsored by the March of Dimes.

Why am I sharing this?? While some of you may be interested in my educational / intellectual endeavors, the main reason I mention it is because I want to make you aware of some of the important work that the March of Dimes is involved in. At this conference, there were hundreds of medical professionals (nurses, doctors, midwifes) who, after two days, left with more knowledge about how to save the lives of babies and mothers. There were clinical scientists presenting ground-breaking research on prevention of preterm labor and birth, genetic research and studies addressing the health of pregnant women.

Maybe you didn't know that the March of Dimes provides long term grant support to researchers studying congenital defects. Since 1954, 13 scientist supported by the March of Dimes have received the Nobel Prize. Grants from the March of Dimes have led to many important discoveries, such as the genetic causes for Marfan syndrome and Fragile X syndrome. One of the more interesting speakers at the conference was presenting an update on work being done at the Prematurity Research Center at Stanford University. This state of the art, interdiscipinary center was funded by a $20 million grant from the March of Dimes.

As a mother who has lost her daughter to a severe congenital heart defect, I have the utmost appreciation for the mission of the March of Dimes. I want to live to see the day where we understand the causes of and risk factors for the congenital defects that are affecting our babies. To know how to prevent preterm births and how to better care for our preterm infants. For all babies to be screened for life-threatening conditions that are treatable once identified. For every woman to experience a healthy, full term pregnancy without compromising her own health. I will campaign for the March of Dimes from now until I see my daughter again.


Which leads me to the March for Babies. Last year, only a few months after the loss of our daughter, I learned about the March. This national "walkathon" generates funds to support the mission of the March of Dimes to pursue all of the goals I have detailed above. We founded a team called "For Love of Angeline" in 2011. We became one of the top family teams at our community's walk, and I was the top family walker - all thanks to the very generous support offered by our family, friends and colleagues. In 2012, Team "For Love of Angeline" is off to a great start. We have added several teammates who are actively campaigning as well. Two of my friends who are participating also have children who have been affected by congenital defects and preterm birth. They have been inspired by our efforts to join with us and raise funds for this most important cause.

As I see it, the mission of the March of Dimes should matter to everyone. Have you had a healthy baby? If yes, give because you are thankful. Have you had a baby too early? Give because your child benefited from care in NICU and survived. Have you lost a pregnancy owing to preterm labor or preeclampsia? Give because these are two areas of very active research supported by the March of Dimes. Have you experienced miscarriage, stillbirth or recurrent pregnancy loss? Give because you want to encourage research on genetic diseases and risk factors for miscarriage and late pregnancy loss. Perhaps you don't have a baby yet, but may have one someday. Give because the work of the March of Dimes may one day save your child's life. No one is going to do this for our children if we won't.

I hope I have encouraged you to consider supporting this amazing organization. Maybe you will rise to the challenge of starting a family team in your community or participating in a company team through your employer. If you cannot participate in your area for whatever reason, please consider making a contribution to our team via the March for Babies website (link on sidebar). No gift is too small. We would love to know that Angeline touched you and helped move you to support the fight for babies' lives.

Saturday, February 25, 2012

The inequity of life

There are so many things I have lost, besides my daughter. Try as I do to maintain a positive attitude in the face of irritatingly persistent challenges, I can't help but think of all the things I have lost since December 29th, 2010. My sense of joy in life, for one. When she died, part of me died too. You are robbed when your child dies. The losses are emotional, psychological, physical, financial, social. Just like any other violent assault or trauma, healing is painfully slow. The scars never go away.

I look around me and I see people that otherwise look a lot like me on the outside. Yet for the most part, their lives have not been devastated the way mine has. Probably some of the have troubles, maybe even significant pain. Some of the others basically lead a charmed existence, where things just fall into place for them, without much work or worry or disappointment.

I see the gap widening between myself and others. Their lives seem so foreign to me. What must it be like to have a life without carrying this heavy weight?

The inherent inequity of life: it just is the way it is. It seems that for me, things just cannot come easily, at least not right now. Maybe not ever. It seems very strange to me when people look me in the eye and say, "I just know things will get better for you." I don't know why they would say that. Maybe things will get better, or maybe they won't. Maybe they'll get worse. That's always a possibility.

Of course, I should add the perfunctory remark about being grateful for the blessings and good fortune I have had in life. I most certainly am thankful for the positive aspects of my life. It's just that the most precious, sacred act I have ever attempted ended catastrophically. It's not as if I was trying to broker peace in the Middle East, win the Nobel Prize in Physics or any other unrealistic goal. I was just trying to do what we are all born to do. It didn't seem that unreasonable an expectation.

At this point, I have just come to accept that for some of us the road is harder. I don't know why we have been chosen for this. It's just the way it is.

Wednesday, February 8, 2012

Congenital Heart Disease Awareness Week

This week before Valentine's Day has been designated as Congenital Heart Disease Awareness Week. Our Angeline was lost to a severe congenital heart defect. Like many babies who die from this devastating condition, Angeline's heart defect was not diagnosed prior to her death. Many babies are not diagnosed until they show signs of respiratory distress after delivery. It may be minutes, hours, or days until their condition is apparent. Some babies are actually discharged from the hospital with undiagnosed congenital heart defects, and in some cases, their parents experience the horror of unexpectedly losing their new baby at home. I had read Cora's story a number of months ago. Her mother and others are working to promote a very simple and completely painless newborn screening test: pulse oximetry.



Cora's story: http://www.corasstory.org/

Monday, February 6, 2012

Year of the Water Dragon

The Chinese New Year began on January 23, 2012. This is the "year of the dragon," as you may have heard. According to Chinese tradition, the dragon is an auspicious creature: it symbolizes power, luck, good fortune. Of course, the year of the dragon is a highly desirable time for a child to be born, according to those subscribing to this philosophy.


2011 was a really horrible year in so many ways for so many people. I personally know a number of people for whom it was easily the worst year of their lives, myself included.

I do believe that the tide may finally be turning. I feel in a way that a black cloud is lifting. Maybe it's just my imagination, but I really don't think so.

On the other hand, surviving the first year after the loss of you child is in itself an accomplishment and a relief. There is nothing that can compare to the early raw emotions, the prolonged and enduring sadness, the heaviness of the all of the "firsts" without your baby. Further, I did not have the comfort of the promise of a new life while passing each milestone. We have faced many challenges that would provide material for another blog altogether. And amazingly, I survived anyway.

This year, I have already decided, will be different. Will be... good? Can I actually go so far as to say that? Yes, I still miss my sweet Angeline every minute of every day. I always will, but I have to find happiness, joy, excitement and other good things here in this live without her. I am grateful to be surrounded by living angels here on earth who lift me up, day in and day out. They have convinced me that there are better times ahead.

Tuesday, January 3, 2012

I hate to do this, but I have to share

For those of you who are not familiar with Alan Colmes, he is a token Democrat commentator on Fox News Network. I have never been a fan of this guy, however, I can now say that I loath him. Am disgusted by him. Think that he should be ashamed, embarrassed, mortified by his recent comments. See You Tube clip below and fast forward to 0:50.



I posted a message on his Facebook wall:
"I am highly offended and truly appalled by his recent comments on Fox News regarding the loss of Rick Santorum's infant son. As loving mother to a precious daughter who was born still and silent, I can assure you that the short time that bereaved parents spend with their deceased children is absolutely sacred and is a subject that should be given the highest level of respect. If Colmes is truly sorry for his insensitive remarks, he should consider making a financial contribution to "Now I Lay Me Down to Sleep," and amazing organization doing beautiful work to help families grief and heal. Otherwise, he is clearly a Pinhead!"

For non-Fox News watchers, "Pinhead" refers to Bill O'Reilly's Pinheads and Patriots segment, where he asks for comments and remarks on whether a given individual (public figure) is a "Pinhead" or "Patriot." I promise you, for this one, Alan Colmes should definitely fall into the former category. Apparently, use of this term is somehow offensive to fans of Alan Colmes (see my post). Oddly enough, they aren't offended by Alan himself. Go figure!

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