New Normal

"Are you doing better?" Sadly, I am doing a little better this week. I say sadly because it feels like I am betraying Rylan to do better. Can one ever really get better after losing something so precious?

I realized last week that I had spent every day of the past 8 weeks heavily grieving our son, often crying off and on all day and night long. It felt like the right way to feel though, given all the pain I was experiencing. I wanted to be sad because I couldn't fathom feeling anything else. I am sure now I was also experiencing depression whether it was simply from the situation or also intensified by the postpartum hormones. I sense that my hormones are starting to get back in order now and I don't feel the desperate hopelessness like I have for most of the first 8 weeks.

They say grief is not a predictable ride though; you can move forward and then something happens and you take two steps back. So, it is not a surprise that some days are harder than others. Thank you for being patient with me!

Last week when I was reflecting on my would be 8-week-old son my counselor said "it's ok not to think about it all the time and to give yourself a break." Somehow as hard as that was to hear it made sense and it allowed me to see that I have to begin to accept what has happened (people have been saying that all along but I could not hear it). The shock and disbelief have been too great to allow me to move in that direction thus far.

As much as I've wanted to, I could not stop time. Each day forward meant I was further away from the one day we had with our baby boy.

Time marches on and God has not taken me yet so I know I must find a way forward. I am now beginning to accept truths that have been too much to take in: I did have a baby. He is now gone. He's not coming back. It can't be fixed.

There is no going back to the way things used to be but there is a new normal. I do not see or approach anything in my life now the way I did before. Each day is precious, each relationship is cherished. I know how fragile life is.

The Pathway of Pain

The Pathway of Pain
by Helen Steiner Rice

If my days were untroubled and my heart always light,
Would I seek that fair land where there is no night?

If I never grew weary with the weight of my load,
Would I search for God's peace at the end of the road?

If I never knew sickness and never felt pain,
Would I search for a hand to help and sustain?

If I walked not with sorrow and lived without loss,
Would my soul seek sweet solace at the foot of the cross?

If all I desired was mine day by day,
Would I kneel before God and earnestly pray?

If God sent no Winter to freeze me with fear,
Would I yearn for the warmth of Spring every year?

I ask myself this and the answer is plain----
If my life were all pleasure and I never knew pain---

I'd seek God less often and need Him much less
For God is sought more often in times of distress.

And no one knows God or sees Him as plain,
As those who have met Him on the "Pathway of Pain"

Chosing the Name

Many people have asked us how we chose the name Rylan Cade. Early in my pregnancy my aunt gave us a book of baby names and I basically combed through the boy section to find names that we liked. We didn't want to use a family name, a name that was too common or a name that was too unusual. The fact that Rylan was not listed in the Top 100 names of 2008 was a positive. Pretty early on we decided on Rylan and also decided to keep it a secret. In hindsight I think it is so special that just Joe and I were calling him that all along while he was in my womb. The middle name was harder to decide on and was only finalized about a month before he was born.

While we picked the names because of how they sounded the meanings also proved to be significant. Rylan means "field where Rye grows" and if I had never moved to Rye, NY I never would have met Joe and we never would have had Rylan. Cade means "battler" and our tiny boy did put up a brave battle for 24 hours until the infection was just too overwhelming.

A friend shared the following beautiful observation on the significance of names in a recent email:
I was so sad when I heard about Rylan. In the first weeks of their lives we were presented with information about [our children's] health that caused me to cry uncontrollably. I can not imagine the type of grief you are experiencing. We love you so much and we have been thinking about you and talking about you a lot over the last 24 hours. I will be praying for you and Joe and your family. Your pregnancy has been such an exciting one to follow, knowing how blessed a child would be to have you as a mother. Rylan Cade is such a wonderful name. I have noticed that our children have seemed to take on a personality that really matches their name so I'm thankful that you have given us such a rich description of the boy that we were not able to meet. I hope you are comforted by our Saviors love and the love of those around you.

That black hair

Most people assume that Rylan's black hair came from Joe's side. My mom says otherwise and she dug up some pictures of me from June 1981 when I was first born to prove it. (Click on the pictures to see them larger)

Without a doubt Rylan looked a lot like Joe but from these pictures I can see he resembled me in a lot of ways too.

Miss you everyday

This is a beautiful song that says it all:

www.imeem.com/people/rmPkBn/music/EIm7F2uO/watermark_glory_baby/

Glory Baby by Watermark

Glory Baby, You slipped away

As fast as we could say baby, baby

You were growing, what happened Dear,

You disappeared on us baby, baby

Heaven will hold you before we do

Heaven will keep you safe

Until we're home with you Until we're home with you

CHORUS

We miss you everyday, miss you in every way

But we know there's a day when we will hold you, we will hold you

And you'll kiss our tears away, when we're home to stay

We can't wait for the day when we will see you, we will see you

But baby let sweet Jesus hold you, until mom and dad can hold you

You'll just have heaven before we do

You'll just have heaven before we do

Sweet little baby, it's hard to understand it

Cause we are hurting, we are hurting

But there is healing, and we know we're stronger people

Through the growing, and in knowing

All things work together for our good

And God works his purposes

Just like he said he would, just like he said he would

CHORUS

BRIDGE

I can't imagine Heaven's lullabies

And what they must sound like

But I will rest in knowing

Heaven is your home

And it's all you'll ever know, all you'll ever know

CHORUS

Sepsis (Rylan's illness)

If you are like Joe and me, you had never heard of sepsis (also known as septicemia or septic shock) before our baby died from it. So, we were surprised to see sepsis in the news recently (you may have heard about the Brazilian model who died from sepsis). Here are two articles about it:

http://www.cnn.com/2009/WORLD/americas/01/24/brazil.amputee.model/index.html

http://www.cnn.com/2009/HEALTH/01/29/ep.sepsis.infection/index.html (there is a video clip with this article as well)

I've learned that sepsis is essentially the body's overreaction to an infection which causes systemic inflammation and ultimately insufficient blood flow that can lead to organ failure. In Rylan's case the infection was E. coli (but it was sepsis that caused his death).

Some information from the articles that I found particularly 'helpful':
"We know a lot about what happens once a patient contracts the illness but we know very little about what causes it"
"Why some infections rage out of control and shut down vital organs is a mystery"
"Men are more susceptible than women"

I also discovered (through these articles) that there is a Sepsis Alliance http://www.sepsisalliance.org/ which was established to "support education, early recognition, effective management, and ultimately, a cure for sepsis." It is a leading cause of death in the U.S. - and most of us had never heard of it.

I wish learning about sepsis could somehow bring Rylan back but I know nothing will. Still, I personally want to understand as much about this illness as I can to protect myself, my friends and my family. I hope you find the information helpful too.

Thank you again for all the support through emails, cards, visits, meals, etc. This loss has been devastating, and I am still in shock in many ways. My heart is broken and I truly miss Rylan everyday. But it has also been a time, in Joe's words, that we have not for a moment felt unloved, uncared for or unprayed for by our friends and family.

NILMDTS

I wish we had known about this:

http://www.newsweek.com/id/182665

www.nowilaymedowntosleep.org

I am soo sad we did not know about it. I am going to see if I can raise awareness about this organization at Danbury Hospital so others will have the chance to use it.

Going thru the Motions

It is definitely still tough. I think I am doing all the right things - not staying in bed all day (like I would prefer), meeting with friends, eating, exercising, talking about it, taking care of the laundromat, etc but it is really just going through the motions because the reality is my heart is always heavy with sorrow. We are also going to a support group and I go to a therapist on a weekly basis but it will be a long road - my whole life in fact as I will never fully get over it. I will miss Rylan everyday. I can't stop thinking of his sweet face and how much I loved and wanted him.