Empty

Spending 5 weeks in the hospital left our house a mess - horrible! And with me heading back to work in a few more weeks (which I'm slightly terrified of, but that's another post for another day) and my hubs hopefully starting a new job soon it means we need to clean.

I hate cleaning anyway, but I'm really having a hard time. Putting all of the bottles and baby accessories in storage that were patiently waiting for Kennedy to come home is devastating. One more reminder that the house is so empty. It hurts having to find places for everything and wonder if we'll ever use any of it.

Just another reminder of the empty car and empty arms that went to and from two different hospitals and never came home with our sweet baby...

Missing you so much it hurts, Kennedy - today and every day...

Just Love

"I wrote this for a baby
Who has yet to be born
My brother's first child
I hope that womb's not too warm
Cause it's cold out here
And it'll be quite a shock
To breathe this air
To discover loss
So I'd like to make some changes
Before you arive
So when your new eyes meet mine
They won't see no lies
Just love.
Just love."
     No Lies, Just Love - Bright Eyes

I always loved those lyrics from Bright Eyes. So bittersweet.

But it's also bittersweet to know that my baby only knew one thing of life - just love. On one hand I'm so thankful that she will know nothing else.

She had loving parents who spent every day of her life with her during her short journey of life. Parents who would've given anything for her to stay. But who also loved her enough to let her go when her body told us she was ready.

She had loving grandparents who always came to be by her side. Family and friends always came to see her and give their love. She melted the hearts of nurses, residents, doctors - I'd be shocked if anyone who met her didn't love her.

And everyone who loved her, loved her unconditionally, gave all their love to her - knowing that we would have to say goodbye to her, knowing we would have or hearts broken when she left. But we did it anyway.

And that's all she'll ever know - just love. She will never know the sting of first love heartbreak. She'll never know the feeling of comfort found in the relationship with a best friend. She'll never know the feeling of self accomplishment you get from picking yourself back up after you've fallen flat on your face.

Though a part of me wishes she had the chance to experience all of life's emotions - good and bad. But how powerful and peaceful it is to know that Kennedy only knew love.

Roller Coaster

After losing Kennedy, I've had a roller coaster of emotions - actually I've had them since we heard she had a lethal condition - and they can change from hour to hour. It's usually the same emotions -

1) Sadness - Some days, unfortunately, this feeling is the most overwhelming. The hopelessness you feel at learning your child has a condition that you can't fix or help is devastating to any mother - to know no matter how hard you try, sometimes you just cannot do anything to help. The longing to have her in my arms is so painful at times it makes me feel as if I am drowning. The worst part of the sadness is knowing that it will never go away. The ache I feel for Kennedy will be with me until I myself am gone.

2) Numbess - When everything is too much, when I am too physically and emotionally exhausted, I just become numb. Maybe it's my body's way of protecting me from drowning too deep in that hole of despair. Some days the feeling of being numb is the only way I can function in a world without Kennedy (the world is so much darker without such a beautiful, bright light like her). Sometimes I welcome the numbess and sometimes I fight my hardest to feel something - anything.

3) Hope - Before her birth, I had hope that the doctors were wrong. I still believe that having that hope to never give up on my daughter helped her survive as long as she did. I always had hope that she was stronger than anyone gave her credit for. After her birth, I hoped for more time with her. I never gave up hope that she would fight for as long as she physically could. Now after her death, I hope to see her again and to spend an eternity together doing things we will never get the chance to in this life. I even have hope that one day when/if the time is right, we will give her siblings and share everything we can with them about their big sister.

4) Peace - I wish this feeling walked with me more than it currently does, but I know that one day that will come. I have always felt at peace with doing everything could for Kennedy by allowing her to grow as I carried her and by trying as hard as I could to understand when she was telling me that her body had had enough. I find peace in doing what I can to remember her now that she is gone, to do what I can in her memory so that not only does it live on in our hearts and those who also loved her, but that it reaches people who will never know her. And most importantly, I find peace in knowing that she is and will forever be with me.

I've never been the biggest fan of roller coasters, but I'm trying to enjoy the ride - no matter how painful some minutes can be.

Alone

One of the hardest feelings to deal with after a loss is how lonely it is.

My husband and I are dealing with the exact same loss, but its completely different. No two people grieve the same. We don't have the same feelings about how to "move on" (I use that term lightly since neither him nor I will ever "move on" - Kennedy will forever be with us). I understand now how hard it can be on a couple if you don't have the strength left to fight (which thankfully, I do).

It's also lonely because no matter how much support you have, no one can fix it. And some result of that is that it makes me want to be alone. It leaves me alone with my thoughts - which is terribly hard, but at the same time it's something I find solace in. Being alone helps me reflect.

I think also lately I like to be alone because no matter where I am or who I'm with, I feel so alone, so lonely. Grieving a child is a very isolating event (even if most of the time it's due to self-isolation).

One week ago

Now that Kennedy's memorial service and funeral are over, the weight of my grief and longing feels heavier. Maybe it's because I'm no longer busy with planning. Maybe the planning helped me feel like her mother one last time - making sure that everything was perfect to honor her. Or maybe now that it's all over, it just feels more real, more final.

Today I'm feeling very lost. My heart aches for my baby and I want nothing more than to have her in my arms.

We lost her one week ago today and the pain is still overwhelming.

Finding Peace

This seemed like the day to begin this - my daughter's funeral.

I never would've thought that at 26 I would have been planning a funeral and much less a funeral for my baby. But that's where I've found myself this week.

My now husband and I got engaged in September 2012 after over a year of living in our new home. We began planning a very small, intimate wedding but could not decide on a wedding date. I bought a wedding dress in October. We finally decided on a spring wedding.

Thanksgiving was the first day I thought something was...off. There began my weeks of "morning" sickness that I chalked up as the flu. I missed a few days of work here and there, but never thought anything of it at first. Finally in December, my fiancé suggested we pick up a pregnancy test.

The next morning, December 11, 2012, I took a test before work. Positive. I stared at the pregnancy test in complete shock - I had no idea what to do. The pregnancy was completely unplanned (I was on birth control!) but we were no less overjoyed. We got married a month later on January 12, 2013 and I was 12 weeks and 1 day.

Though I had terrible morning sickness that lasted well into my second trimester and heartburn that consumed me if I even thought about spicy or acidic food, I had a fairly normal pregnancy. Nothing seemed unusual until 19 weeks when we went to our ultrasound to find out if we were having a baby boy or girl. It was then we were told we were having a girl! - and that her limbs were measuring a bit behind. I originally thought nothing of it as I myself am barely pushing 5 feet.

We were sent to a perinatal office where we were told our baby girl may have a type of skeletal dysplasia known as achondroplasia (dwarfism) or she could just be short like her mama. It wasn't until 29 weeks and 6 days - after we had named her Kennedy, finished her nursery, sent out invitations for our baby shower, bought a new family-friendly SUV - that we were told by another doctor at our perinatal office that her skeletal dysplasia appeared to be lethal - her lungs would not support her and she would be stillborn or pass shortly after birth. I broke down and sobbed - I felt as if the wind had been knocked out of me. That was the first time I had ever seen my husband cry.

I was out on bed rest due to emotional distress by my OBGYN. We met with a neonatologist at our delivery hospital to discuss our birth plans and were told he believed our little Kennedy had thanatophoric dysplasia. We began planning for the worst, but other than immediate family and a few close friends, kept it to ourselves. There were so many days we didn't leave the house.

At exactly 33 weeks, I had been feeling very uncomfortable and decided to go to the hospital just in case. To my surprise, my water had broken and I was in labor. I had an emergency c-section that night (my doctors believed a c-section was the best chance we had at meeting our daughter alive).

My husband paced the hallway. I was so overwhelmed with fear. Kennedy was born crying - a sound I never thought I would hear! I cried tears of joy. The joy grew stronger as we were told she needed little help and would be going to the NICU. She shocked every doctor and nurse there.

After 3 days in the hospital, we were transferred to our local children's hospital NICU for further research on her skeletal dysplasia. We spent the rest of Kennedy's short little life there. On her 35th day of life, they confirmed that she did have thanatophoric dysplasia. We were lucky for every day we had with her.

The next few days were the beginning of the end of our time together. On her 38th day of life, Kennedy passed in her sleep. She had been sleeping most of the day, but she opened her eyes, looked right into my eyes, and smiled one last time. I held her tightly in my arms as she passed.

We had her visitation last night and her funeral this morning. I still can't believe she's gone. I am trying to find