Monday, March 26, 2012

Finding my new normal

Dear Avery,

     You have been gone for 5(almost 6) weeks now.  I should be coming up on my 38th week of pregnancy and setting up the final details of your nursery.  Instead, I'm here missing you with a squishy belly and empty arms.  I hold my Molly Bear and shut my eyes almost everyday so that I can remember what it felt like to hold you.  I would give everything that I have to hold you for just a little bit longer.

     I am going back to work on Thursday.  People keep telling me that it will be good for me or that I need to be on a schedule--and it might be-- but they don't know what it feels like to be living without you.  I have really enjoyed having this time to focus on remembering you.  I have needed this time to sort through all that comes a long with losing a baby.  I have spent hours on hold to talk to insurance companies, doctors, and geneticists.  People don't realize that after your baby dies, Enfamil still sends you formula in the mail and the insurance company still tries to add your baby to your plan. It takes time to call each place and beg to get off of their list.You have to decide how you want to receive the death certificate, fill out tons of paperwork, and set up an organization system for the medical bills that arrive in the mail on a daily basis. It takes time to shop because you still  look pregnant and it is impossible to find clothes that fit. Picking out your headstone and creating your birth announcement are some of the hardest things that I have ever had to do.  Both of those things took a lot of time.  The finality of these things is numbing and people can not possibly understand if they themselves have not walked in my shoes. I'm so tired of people assuming that they know what is best for me.  If they have not lost a child or are not a doctor or therapist, their comments hold no traction.  This blog that I came across explains it much better than I can.

    Returning to work is going to be a very emotional thing for me.  I looked about 12 months pregnant at the time that I left and now I am deflated.  I have seen some of my kids since I left, but I am so nervous about how they will react when I return.  I don't know if I am more nervous about them asking questions or acting like it never happened.  I am going to see them at the end of the day tomorrow to relieve some of this anxiety before I actually go back.  I love and miss my students, but I am scared of balancing work and my new life without you.  I feel like I will have to act like I am over it in front of my class, and the truth is that I will never get over losing you.  I know that I will eventually find my new normal, but I am still searching for what that means.  I think that I am as ready as I will ever be--I hope that it is enough. 

     At your funeral, I promised you that great things would happen because of your short time on earth.  I want to do something in your name.  I want to set up a foundation or scholarship program or SOMETHING that will help others and shout to the world that my daughter, Avery Alis Ogburn, lived.  I have racked my brain trying to come up with ideas for what we can do.  I still haven't settled on anything but I will keep praying about it and I am sure that it will come to me.  Your Mimi and Yay-yay want for me to write a book.  I don't know how it will turn out or if it will ever be published, but writing your story will be my project this summer.  I thought of the title while I was laying in bed last night: What To Expect When You Are Expecting An Angel.  We will see how it goes, but I might need for you to send me a little inspiration.


PS: Thanks for all of the sunshine on my birthday and during our cookout this past week.  The weather men said that it was going to rain, but I knew you would come through.  I love you sweet girl :)

Thursday, March 15, 2012

It's been a busy week

Dear Avery,
    So much has happened since I last wrote to you.  It's really hard to believe that it has already been 4 weeks since your birthday.  It still feels so fresh--I miss you Princess.
     Your daddy and I went to a geneticist last Friday to learn more about your diagnosis.  We still don't have any definite answers, but the doctor's best guess is that you did in fact have Thanataphoric death seeking Dysplasia.  They only had my amniotic fluid for testing since we denied an autopsy while we were at the hospital.  They didn't test the FGFR3 gene which can distinguish more efficiently between the different dysplasias.  There is a chance that there will be enough DNA left for them to figure it out for sure, but nothing they do is going to bring you back. 

     Your chest was too small sweet baby.  Nothing that they can test for will ever change that.  There is still a small chance that your condition is an inherited trait that could also be passed to your brothers and sisters.  If that is the case, there is a 1 in 4 chance that each of your siblings could have the same thing. Answers or not, I am happy with our decision to leave your body untouched. I found so much comfort in the fact that we were the last ones to dress and swaddle you at the hospital and then again before your funeral.  No amount of testing could be worth more than those precious moments that we had with you.

     On Saturday we went went to the St. Patrick's Day Parade.  It was our first time really going out since we lost you and I had a lot of anxiety about it.  What if people didn't know that we lost you?  What if I got upset and had nowhere to go?  What if I just wanted to cry in the middle of all of those people?  I was just wary of the whole experience.  In the end, I am really glad that we went.  It was nice to be out of the house with friends and it was a good day overall.

     Your Aunt Kelly went to the doctor on Monday to see your new cousin for the first time.  We found out that she and your Uncle Brian are having a healthy baby girl!  We are very excited about the new addition.  It brought back a lot of memories and some tears though since you girls won't get to grow up together.  Please watch over your Aunt Kelly and your little cousin as she continues to grow and prepares to meet us.

     I went back to Dr, Link on Tuesday for my postnatal checkup.  It was hard to be in the office knowing that I wasn't going to hear your heartbeat on the doppler.  Everyone there was so kind and they all wanted to see your pictures.  I am healing really well, so Dr. Link released me to start exercising again.  I am definitely ready to get rid of this squishy stomach, but I am strangely attached to my newly acquired "tiger stripes."  I am sure I am the only woman in America to actually smile because of stretch marks, but they make me think of you and the time that you were in my tummy and that makes me happy.  There is something comforting about the fact that I will always be a physically different person because of you.  (However, I might need to graduate to a tankini this year!)

     It has really been bothering me that your grave is still unmarked.  I went to look at headstones a couple of weeks ago, and none of them were special enough for you.  I am going back to try again tomorrow, but even then it will take up to 3 months to come in and be placed.  I decided to make you a temporary marker so that people who pass by will know that you are there.  I'm pretty sure that it is against cemetery regulations, but I painted a colorful sign and wooden tulips and placed them out at your grave on Wednesday--hopefully the grounds crew will let them stay there for awhile.

     While I was sitting at your grave crying, another lady showed up at the cemetery.  She walked around to a couple of graves and placed flowers on them and then came over and sat down with us.  She asked about your story and then she shared her story as well.  Her son was in a bad accident when he was 17.  The driver of the car was trying to make it fishtail and ended up flipping off a cliff into a small pond.  Two kids, including the driver, made it out, and two kids, including her son Matthew, drowned.  As I did the math, I realized that Matthew and I would have been the same age.

    The lady's name is Judy.  She lives in Mt. Washington, but she works in Louisville on Wednesdays.  Every Wednesday, she stops by the cemetery to bring flowers to the graves that look like they have no visitors.  I know that she will be coming to visit you now too sweet baby.  We sat and talked for hours before I left to come home.  Thank you for bringing her into my life sweet girl--I needed to talk to her yesterday. 

                                                  I love you Sunshine,

Wednesday, March 7, 2012

What makes a mother

Dear Avery,
    A couple of different people have shared this poem with me and it always makes me smile.  I am so happy that I get to be your mother sweet girl.  I love you so much!

What Makes a Mother

I thought of you and closed my eyes.
And prayed to God today.
I asked what makes a mother and
I know I heard him say,

A mother has a baby.
This we know is true.
But God, can you be a mother
when your baby's not with you?

Yes, you can, He replied
with confidence in His voice.
I give many women babies.
When they leave is not their choice.

Some I send for a lifetime
and others for a day.
And some I send to feel your womb
but there's no need to stay.

I just don't understand this. God,
I want my baby here.
He took a breath and cleared His throat
and then I saw a tear.

I wish I could show you
what your child is doing today.
If you could see your child smile
with other children and say,

"We go to earth to learn our lessons
of life and love and fear.
My Mommy loved me, Oh so much,
I got to come straight here.

I feel so lucky to have a Mom
who had so much love for me,
I learned my lesson very quickly.
My Mommy set me free.

I miss my Mommy, Oh so much,
but I visit her each day.
When she goes to sleep,
on her pillow's where I lay.

I stroke her hair and kiss her cheek
and whisper in her ear,
'Mommy don't be sad today,
I'm your baby and I'm here.'"

So you see, my dear sweet one,
your children are okay.
Your babies are here in MY home
and this is where they'll stay.

They'll wait for you with ME
until your lesson is through.
And on the day that you come home,
they'll be at the gates for you.

So now you see what makes a Mother—
It's the feeling in your heart.
It's the love you had so much of,
right from the very start.

Though some on earth may not realize you are a Mother,
until their time is done.
They'll be up here with ME one day,
and know you're the best one.

Monday, March 5, 2012

It's really hard without you

Dear Avery,
     I miss you so much.  Those words don't even come close to explaining the magnitude of the emptiness that I am feeling right now.  I knew that I would not be able to bring you home from the hospital and I knew that I would have to go on living without you, but I could have never imagined that it would hurt this much.  I long to have you in my arms more and more with each day that passes since the last time I held you.
    I can't help wondering about what could have been. What if your chest was just a little bit bigger? What if we could have saved you?  Before we found out that your condition was fatal, I researched everything I could about little people so that I would know how to care for you.  I found boutiques that made special clothes for little girls and ideas for making our home more accessible.  I vowed to never let you feel like your differences made you anything other than perfect. I want you here so badly.  I know that I was meant to be your mom.  I know that no amount of wishing or praying is going to bring you back to me, but I do it anyway.  I just want my baby. 
     After your funeral, your dad and I got out of town for a couple of days to just have some time to ourselves.  I talked your daddy into getting his first pedicure with me while we were away.  There was a mom and daughter getting pedicures together right across from us.  The little girl was probably about 5 and her little legs wouldn't touch the water.  All I could think was that your legs wouldn't be able to touch the water either and I wished that we could have that experience together.  There are so many things that I wanted to do with you sweet baby. 
     The only thing that makes this bearable is that you are with Jesus.  I have prayed for a sign to let me know that you are okay and you have given me that sign.  Last Wednesday there was terrible weather and tornado warnings all around us.  It was the last Wednesday of the month which meant it was the graveside prayer service for all of the infants in your cemetery.  It was the first one since you had passed and I prayed for sunshine during your service to show me that you were alright.  The sky was black all day long.  When we got in the car at about 1:15 to start driving the clouds started to part.  By the time we arrived at your grave, the sun was so bright and warm that I had to squint.  I feel guilty for feeling this sad when I know that you are safe and happy. My warm belly, our hour and a half of love on Earth, and heaven is all that you will ever know.  You are completely innocent sweet angel and that is a beautiful thing.
     We meet with the geneticist on Friday to hopefully find out your actual diagnosis.  I want to know, but I am scared of what they will tell me.  I need you to give me a tiny bit of your strength for that appointment. 

                                             I love you Avery,