You Don’t Know What It’s Like To Be Like Me

A year ago today, my husband and I were reveling in the fact that we knew I was pregnant. We hadn’t announced it to anyone except immediate family and we were overjoyed. I bought Foo Fighters tickets for Stefan’s Christmas gift, and it was a July 4th all day event. And I was miserable. It was hot, I was constantly hungry, and I was so uncomfortable. We had a great day but easily spent over $100 on crappy food. The concert was incredible though, and it just added to our overall euphoria. I remember talking to Stefan about we would tell our child about this concert one day. 

This year, I can’t remember how to feel happy like that. I feel joy, to some degree. But that overcome with happiness euphoria is gone. And I don’t know if I’ll ever feel it again. 

Analiese is missing from my life. From every moment. She should be almost 5 months old. The 11th is her 5 month birthday. And in those five months I’ve cried and smiled and laughed and been angry. And over it all, I feel empty. Like there is a part of me forever gone and a place that will never thaw and be filled. 

You’ll never hear me say that my pain is worse than others. I’ve never lost a sibling, a spouse, or even a friend. I’ve never had a miscarriage. But I’ve lost my child. And while I won’t say it is worse, I will say it is different. And unless you have held your minutes old baby while they die, you don’t know what it’s like to be like me. 

Have you ever had something horrible happen to you? The kind of horrible that it would be a relief to feel like it never happened? That’s this. But I refuse to allow myself to fall into the lie that makes me feel like it never happened. Because that means my daughter never lived. And that is my worst nightmare. My daughter is Analiese Claire Murphy and she lived for 85 beautiful minutes. And even though thinking about her shatters my heart over and over, I will continue to do so. Because she deserves it. 

I miss her so much. Every second of every day. 

Moving Forward

Every day that passes is another day that pushes me farther away from Analiese. I carry her, every moment, inside my heart. Inside my mind. She’s all of my dreams, and wishes, and pain. And the decisions that must be made now are hard. Just as hard as the decisions we had to make while I was pregnant with Analiese. Because the emotions that surround the decisions are so potent. The guilt: are we betraying our daughter? The uncertainty: will we ever be successful in having a biological child? The never ending question of “are we doing the right thing?” And honestly, I don’t think we will ever have true answers for any of these questions. Whether we wait a week or ten years, I think all of these questions and emotions will be a part of the decision. My own opinions on these things is fluid. It changes with the minute on how I feel at that particular moment. But all we can do is move forward, because if we stay in one place we will drown in grief. All I know for sure is that I am ready to be a parent. To have a child to nurse, and teach, and watch grow.

We had our first appointment with Shady Grove Fertility on Thursday, June 2nd. I am working with Dr. Mottla, and I love him. He’s an amazingly nice and understanding man, and the fact that he is super good friends with Dr. Sweeney says a lot about his character. I’m so incredibly thankful that we are here, and have access to the amazing doctors in the area.

One aspect of the decision we have to made about moving forward in attempting to start our family is whether or not to use donor eggs. Dr. Mottla is encouraging this. He understands that with my particular chromosomal abnormalities due to my 3 translocations, that successfully creating a viable embryo with my own eggs is going to be near impossible. And, Stefan and I understand that too. I know how difficult it will be to successfully create a biological embryo that is viable.

But hard situations have never stopped me before. And we have to try. We have to attempt, at least, at getting an embryo that is viable, that is made up of me and of Stefan. My goofy gene and his quiet one. I need to see how we will mix, and what kind of personality will come from it. I need to at least try. And I know exactly how long of a shot this is. It’s such a long shot, they can’t even give me numerical figures for statistics. Dr. Mottla has never encountered someone with 3 translocations, and he has been doing this for decades.

But I’ve always been an overachiever. And all the other aspects are in my favor. I’m healthy, and fertile. We have no issues getting pregnant, or carrying to term. So we are trying. And I don’t want to hear any more about donor eggs. Or considering adoption. Or anything else. We know our options, and we hear them at every single appointment we go to. And I do not want to feel like I need to defend my right to try and have a biological child. No one else has to defend their rights, so this will be my only defense. Support us. Encourage us. And pray for us. ┬áIf the time comes for us to consider other options, we will cross that road then. But we are not there. Not yet.

My First Mother’s Day

I’m not going to lie. I’ve been dreading this day for weeks. Even though I have the best support system, and the most amazing husband, I just kept wishing today would hurry up and be over. Mother’s Day is designed to honor our moms. To give them breaks from the daily parenting grind, and to make them feel appreciated. But how do you honor a mother with no child to parent?

All over Facebook, I see graphics and memes. They all say a variation of the same thing, “the best day of my life is the day I became a mom”. I see pictures of my friends with their children with captions that say “me and my world”. And I’m jealous. Jealous and bitter. Because the day I became a mom was equally the best and most devastating day of my entire life. My world died, 85 minutes after she came into this world. And there was nothing I could do to stop it, or change it.

Things like that make me feel like less of a mom. The little things that mom’s of toddlers are looking forward to escaping from for a few hours are things I’ll never experience with my daughter. I don’t get to complain about sleepless nights, or potty training woes.

But I’ve realized, I’m not less of a mom. I only had 85 minutes with my daughter, but she was loved every second. I carried her, I nourished her, and I did everything I could to give her the best chance she could have. I am a mom, and I deserve to be recognized, even though I am heartbroken.

This day is not easy for me, or for any parent that has lost a child. But don’t ignore us for fear of upsetting us. Acknowledge us. We’re already sad, we’re already thinking about our loss. The thing that will upset us more than anything is feeling as though our children are forgotten.

2 Months Later

The aftermath. How has it been 2 months since I held my baby girl. Since she breathed her last breath? Some days it feels like yesterday, and some days it feels like an eternity ago. I don’t know which of those days I hate more.

We continue to survive. Not thrive, but survive. We miss our angel constantly, and we still have a lot of terrible awful days. But we have some okay days too.

I’m not back at work yet, and won’t be until June at the earliest. I’ve been honest with them because I’m not okay, and this is what they’ve decided. So be it. I’ve been out of work for 3 months now, and Analiese’s FSGLI is being held up somewhere in the black hole that is the military’s system. So it’s been a rough few months, even aside from our grief.
I’ve decided to become a Younique presenter, and I’m launching my business right now. I’m hoping that everyone will come support it, because quite frankly we need the support. My grief counselor is not covered by our insurance, as of right now. And it’s expensive but I need it. I need all the help I can get.

So come, click the link. Support my family. Help give us the financial stability so that we can grieve the way we need to.

Has it really been 2 months since I heard that little squeak? Since I held my 3 pound little girl in my arms? Why was she taken away from us?

“Time passes. Even when it seems impossible. Even when each tick of the second hand aches like the pulse of blood behind a bruise. It passes unevenly, in strange lurches and dragging lulls, but pass it does. Even for me.” – Stephanie Meyer

https://www.youniqueproducts.com/JaniceMurphy/party/3905649/view

The Whole Story

All of Analiese’s story is already written. It is here, on my blog, for the whole world to see. I’ve been open and honest about every moment of my heart break. But it is not my entire story. There is more that I haven’t shared, because I’m fearful of the reactions. I understand that this is the Internet, and that people are free to say and think what they want. But please, be mindful of my family and others in similar situations. No part of this is easy.

When we received the diagnosis of Trisomy 10q, the genetic counselor recommended that my husband and I undergo testing to see if we are carriers of her condition. It was a simple blood test, and we agreed. 2 weeks later the results were in. My husbands results were perfectly normal. I however, was not so lucky. I am the carrier of her condition.

You might be wondering how that is possible. Afterall, here I am alive and perfectly healthy. It is a little complicated to explain, so I’ll do my best. Basically, Analiese had too much genetic material. I have the right amount of genetic material but it is in the wrong places. That is called translocations. When a parent has translocated chromosomes like I do, that puts the babies at risk of too much or too little genetic material. I have 3 translocations, which means there are dozens and dozens of potential outcomes for our children, all of which are equally deadly and devastating.

This leaves us with two options. Option 1 is to continue to get pregnant naturally, and do the genetic testing. If the genetic test reveals that the baby has genetic problems like Analiese then we will be in the same nightmare cycle that we just lived through. I can’t continue to feel and watch my babies grow, only to hold them while they die.

Option 2 is IVF and pre-implantation genetic screening (otherwise known as PGS). PGS allows us to create an embryo and test it for these chromosomal disorders before it is implanted inside me. We don’t know how long it will take to get a viable embryo, and it is expensive. Very expensive. And of course, our insurance doesn’t cover any of it.

So this is the rest of our reality. We’re mourning the loss of our precious baby girl, and we don’t honestly know if we will ever be able to bring a baby home. It all depends on when we’re able to save enough money (well over $30,000) and how many embryos it takes to get a viable baby.

We don’t consider this lightly. It is heartbreaking either way. But at least with IVF, I have a chance to bring a baby home. The agony I feel over this cannot be explained or truly understood. My daughter is dead because of my genetics. It is my fault, even though I would do anything to change it. Even though I never asked for this, the blame lies with me. I miss her more than I could ever put into words.

Wow

This last week has been incredibly surprising and more than slightly overwhelming. I never expected for my simple thank you to the Fairy Godmother to have spread so vastly and quickly. But I’m thankful for it. I’m thankful that people know my daughter’s name and story. I’m thankful that a light is now shining on families like mine, who have experienced a perinatal loss. Because families like mine need help. I’m lucky. I got pregnant, and therefore experienced this nightmare, here in Maryland. The reason that is lucky, is because of the support system that has been cultivated here. My doctor’s office, Annapolis OBGYN, referred me to my specialist, Center of Maternal Fetal Medicine Annapolis, who in turn referred me to my counselor, SilverLeaf Services. They worked together to bring me to the resources I needed so that I could enjoy my last weeks with my daughter. Without this kind of team working together, in conjunction with the labor and delivery nurse Annie O’Sullivan, there is no way I would be in the same mental and emotional place without them. There needs to be MORE systems like this all over the country. I am terrified to get pregnant again, and I’m even more terrified that it will happen somewhere else. Somewhere I don’t have access to CMFM Annapolis, and my counselor, and Annapolis OBGYN. This could have happened to me while we lived in NC, or when we lived in GA. And I’m unable to imagine what the results of that would be. My counselor, Heather, and my labor and delivery nurse, Annie, did and are still doing so much to help me. I don’t have the words to explain or thank them. Everyone that has lost a child, or is facing the loss of a child like I was, needs a Heather and an Annie. I hope that my story going viral has helped the medical community open their eyes.

Thank you, everyone, for the kind words and for reaching out to me when my story touched you. It helps more than I can explain, to know that Analiese has impacted all of you. For those that think I’m weird and creepy by having my daughter’s ashes inside the teddy bear: all I can say is I hope you never learn how it feels to hold your child as they die. Many of the articles have twisted my words, so I would like to set the record straight. I do not talk to the teddy bear as though it is my daughter. I don’t force people to interact with it, nor do I trick them by not telling them what is inside. The Fairy Godmother was a wonderful compassionate woman who UPON HEARING that my daughter’s ashes were inside the teddy bear, treated the bear as though it was a child. And that is what meant so much to me. She acknowledged my grief. I understand that it is the internet, and people will always talk shit. But in case it was due to a misunderstanding, at least now you know the truth.

My daughter is dead, and that is something that I have to live with every single day. Carrying her ashes doesn’t make me crazy, it makes me a grieving mother. I’m not delusional. I’m not in denial. I’m just grieving. And grieving is hard.

For all the parents that have extended their condolences, and told me of their own loss, I am so sorry that you have experienced the same pain I have. All we can do is try to move forward.

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An Open Letter to My Daughter

March 11, 2016

Dear Analiese,

I can’t believe it has been an entire month since I last felt you kick inside me. Today should be a day of celebrating you. Instead I feel like my grief will crush me. It has been a month since the end of those 85 precious minutes. I’m thankful for the time I had with you, and did not take a single one of those minutes for granted. But I want more. I want to feed you and watch you grow. I want to teach you how to dance, and laugh while your daddy tickles you into submission. I want to watch you discover your love for reading, and your love for video games because we all know you would have loved both. I want to teach you what good music is, and see you discover the magic that lives within the Harry Potter series. I want to take you to Disney World and watch as you get swept away. I want to see you graduate high school and college. To watch you meet a man and fall desperately in love, like I am in love with your daddy. I want to help you plan a spectacular wedding that is exactly you. I want so much more than those 85 minutes.

My arms ache with how empty they are. I held you 27 days ago, but it feels like a lifetime has passed. My soul has aged hundreds of years without you. I’m weary and I miss you more than I could ever explain.

I hope you are happy where you are. I hope your grandmother and great grandmothers are spoiling you rotten, while your great aunt is playing tricks on you like she did on me. I hope you are getting into all kinds of mischief with your cousin, and making the angels crazy trying to keep up with you. I hope you’re happy.

Because I’m not. And neither is your daddy. It hurts to breathe without you, but we keep doing it. We don’t have a choice. Please know, we did absolutely everything we could, angel. And we love you more than we love our own lives.

You’re beautiful.

Happy 1 month, baby.

Love, Mommy.

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Yet another update

I never know how to begin these blog posts. I feel like I’m just writing yet another update on the misery that is my life currently. But we receive text messages daily checking in on “how we’re doing”, so I feel like it is necessary. At least, it makes my life easier to just update everyone at once.

So how are we doing? We’re surviving. We wake up every day, and eat breakfast and then proceed to attempt to be distracted from our heartbreak. Stefan plays video games. I begin and reject at least 3 different TV shows, 2 different books and a movie. I usually end up just laying on the couch, in Stefan’s lap, snuggling Analiese’s bear, doing absolutely nothing. I feel numb right now. I can go large periods of every day without feeling any emotions at all. And then I feel guilty, because I’m not actively sad, so I look at her pictures. And then I get overwhelmed with grief, and snuggle her bear harder.

Most of the time, it doesn’t feel real. Physically my recovery is easy, and I fit in all my pre-pregnancy clothes. There’s nothing physical to remind me that my daughter was born, and died, 13 days ago. It’s all emotional. So when I have those moments of sweeping grief, I feel guilty on top of everything else that I’m not overwhelmingly sad all day every day.

On Monday, Stefan and I went to Lasting Tributes and picked up Analiese’s ashes. Yesterday we went and had a friend’s mom open up the back of her bear, and put her ashes inside it. So now, when I snuggle her bear, I’m able to snuggle my daughter as well. Not the way I desperately want, but better than nothing.

Someone recently described grief as waves. Some of them you can jump over, and some of them knock you flat on your back and make you feel like you’re drowning. Most of the waves I’m hit with are the latter.

There isn’t words for what we feel, or how we’re doing. We are just taking every day moment by moment until it is time to go to bed, and then we do it all over again the next day.

I’m still pumping, and I’m almost finished with the process so that I can donate. I average about 25 ounces a day now, and it still lifts my spirits, knowing that Analiese’s birth has given me a way to help so many babies. I’m not gonna lie though, I’d rather be feeding my baby.

So Many Thank Yous

There are seriously no words to express how thankful Stefan and I are to have all of you in our lives. You’ve shown how much we mean to you, and how important Analiese is every moment since we announced her genetic condition. And some of you have gone above and beyond by sending flowers, gift cards and care packages. Every delivery leaves us more and more speechless.

Today, however, we are absolutely floored by the lengths some wonderful ladies have gone to to ensure Analiese’s mark on the world. Not only did they have an adorable glass engraved at Disney World with her name, they went through the International Star Registry and had a star renamed after her. I didn’t realize that you could actually do that, and now there is a star that will forever be named Analiese.

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Thank you everyone so so much for making sure that Analiese is never forgotten. Your love and outpouring of support is something Stefan and I will never be able to thank you for, or repay.

Decisions and donations

The past few days have been the hardest days of my entire life. I wake up and feel empty, because my little girl isn’t here to cuddle and snuggle. Time stopped while I was in the hospital, because even though my baby only lived 85 minutes, she was still with me. I don’t have that anymore.

I have made a decision that is helping me through the worst moments though. I’ve decided to donate my breast milk to a milk bank that only uses it for NICU preemie babies. This is emotional for me, but it also lifts my spirits. You see, I’m a production machine. In 3 days I’ve been able to freeze about 30 ounces of milk. By doing this, I am able to help sick babies, and that feels really good. But what feels even better it that Analiese’s life is contributing to something positive. She has enabled me to do something positive and give my baby a legacy by helping other babies live.

It’s going to be hard, because I want nothing more than to feed by baby. But I truly believe that it is going to be worth it.