myfireflies

Tuesday, February 3, 2015

nothing but heartache-

Four months have passed and I still toggle back and forth from really bad days and not-so-good days. I've kept myself busy enough to not overthink, but once I lie down to sleep, it's like I'm projecting onto the ceiling my whole story. I watch it quietly as my husband sleeps. Sometimes I cry, other times I just watch. I can't believe it's been a year since we got pregnant the first time. Between births, pregnancy announcements, and baby showers, I congratulate myself for being so "brave" and "strong". For waking up every morning and getting out of bed. This thought only lasts seconds. My choice didn't feel brave or strong four months ago. It still doesn't. I don't think it ever will.

A week from my due date, all I feel is heartache. Seven days from today I should have had a healthy baby boy. All I have left is a broken heart and a whole lot of pain.

Saturday, January 24, 2015

do you have children?

I started the Ph.D. program on Educational Leadership this week.

I'm the youngest on the program, and people often ask if that's a wedding band on my finger. I nod awkwardly. Who cares if I married young?

The next question is obvious. "Do you have children?" I smile politely, and answer: "no." I see the relief on their faces and my heart breaks.

I'd like to scream at the top of my lungs that I do. That they are not with me, but they existed. That I am a mother of angels. I'm not there yet.

I'd like to be able to talk about them without breaking down. I'd like to talk about my children... Just like everyone else gets to talk about theirs.

I'd like to complain about not being able to sleep in on Saturdays, because my children are so loud I'm up at 6. I'd like to come home exhausted from the program and help them with their homework. I'd like for them to call me while I'm at school. These are privileges parents often take for granted. Oh how I wish to share my heartache.

Instead, I sit there and listen to others tell me I'm too young to think about children, that I should "live my life" and "have fun" with my husband before we even think about having children. I stare. My mind wonders off. I try to keep up with the lecture.

While Dr. Archer discusses Northouse's views on Leadership, I can hear my screams asking A to forgive me. I'm back at the hospital and I can see my husband's face as he looks at A for the first time. I see everyone panic as they bring him to me, afraid of my reaction. Who was it that brought him to me? I can't seem to remember that. How did I get there?

I'm scared. I hold him, but I'm afraid he might break. I'm afraid I might break him, as if I had not done enough already. I'm afraid to touch him.

I think about my dissertation. Four years from now, I see myself typing my dedication:

"To my angels. There is no greater truth: I will forever wonder who you would have been."

Wednesday, January 7, 2015

please be kind.

I thought 2015 would be better; a clean slate... It's not. It's just 5 weeks shy of my due date. I thought writing about my three different 30-day challenges would help. Now I don't even know why I'm writing. The only reason I'll be completing them is because I've been through worse than to run for 30 days. I feel like sleeping in forever.... Or maybe until 2016 at least. I wanted to come home from the States and get back to my routine and now I don't even know how or if I'll get out of bed to go to work.

2015, please be kind to me.

Wednesday, December 31, 2014

2014 - a year of lost battles

2014 was the year I lost everything. The year I have felt the happiest in my entire life- only to have that happiness taken away from me in a matter of seconds.

I have learned to live with the pain. I have proved to myself to be stronger than I ever thought I was.

My heart is broken and smaller; it will never be the same. I ache in places I didn't even know existed.

The guilt will never go away. It's a feeling I've learned to manage. I don't talk about it much... I get no one understands it. Not a single day goes by that I am not reminded of the pain I inflicted on my son. It was for the best, yada yada yada.

There's also the pain for the unknown. The pain of never knowing... Of forever wondering who they would have been.

The constant reminders of me failing at every attempt on becoming a mother (in society's eyes). If this pain I feel does not entitle me to be called mother, I don't know what will.

But I'm still standing. I'm here to share my story and help other women back up. I am grateful to have the support of my blogger friends: your comments and emails have lifted my spirit. I have felt understood and less alone.

I have a lot to be grateful for, though I don't feel like writing about those things. I will continue to have hope as long as my heart beats, this is the one thing I will not have taken away from me.

Thank you, 2014. Perhaps the answer to all my questions is never asking "why".

Tuesday, December 30, 2014

Counsyl Test Results

Warning- long post. Sorry!

Im surprised they are back so soon. They only tested for the one disease I tested positive for.

This is what the Genetic Counselor wrote today:

"Good news! The results from your husband's counsyl test are back and they are negative. I attached a copy to this email. This means the chance for the two of you to have a baby with Rhizomelic Chondropdysplasia Punctata Type 1 is expected to be less than 1 in 2,120."

This is less than .5%

The risk of having a baby with CHARGE Syndrome is 0.00008 (some would say almost nonexistent).

These results don't mean much to me. I'm not sure what I was expecting (I think I'm past expectations now). I don't think I'll ever be satisfied with a result.

Three months ago today I gave birth to A. I'm in a different place now. I usually don't cry during the week, I am "OK" when being around babies, and I have seen as many pregnant women as humanly possible in these 3 months. All they are is a reminder of what I'm not, but I do not envy them anymore.

I don't wish to be pregnant. Being pregnant right now is my biggest fear. I don't look forward to a missing period or the adrenaline rush of waiting for the blood test results.

I'm OK now. I don't ever want to be where I was 3 months ago. I don't want to know more heartache than what I have known. I do get sad every now and then, but am not hard on myself for it. I understand and accept this as a normal part of my grieving.

I took my last pill from this cycle's pack on December 24th. I stopped it not because I was hoping or expecting these results to be what they are, but because I have not managed to lose any weight and my acne is worse than ever. I am exercising more than I have ever had in my entire life, and have been following a diet plan for two and a half months. I was also bleeding twice a month, which is a real pain in the ass.

I will be seeing an endocrinologist next week, though I'm pretty sure that the mini-pill has made it impossible for me to lose weight. This is the first time I'm on it. The doctors at the BWH won't prescribe the regular pill since I have migraines with aura.

I would say I'd like to just "go with it" and if I happen to get pregnant I'll take it from there, but it's much more complicated than that. Having all these results back only mean that my two losses are not related. This means that my first loss was due to low progesterone levels. I probably needed progesterone as soon as I found out I was pregnant, not two weeks later when I got home and my doctor ordered the tests.

My range of fears is wider now. I fear losing a pregnancy due to progesterone levels, I fear taking Clomid to ovulate on time, I fear the 1-2% risk of a baby with CHARGE, I fear the less than 1% of a baby with Rhizomelic Chondropdysplasia Punctata Type 1. I fear losing a baby due to NTD. I fear chromosomal defects. All pregnancy means is fear right now. I know nothing will help me completely overcome my fears.

I do want a baby more than anything in the world.